Updates On Sam Searles Health
1/15/23
Hello all. The updates are few and far between as there is just not much to update on. Sam and Trapper continue to work toward a new normal and settle into that. There are challenges daily, but things are stable regarding Sam's health. She continues to work hard on her speech etc. I don't anticipate further updates unless there are any big changes. Thank you all so much for all the love and support - please continue to provide that to this family as you are able. Again, thank you!
12/11/22
Sam continues to do well. Progress with speech continues but is slow and can be frustrating for both Sam and her family. She is walking more without her cane at home, there are still many things Sam should not do by herself and this is also frustrating for her and her family. She is staying positive and each week continues to make strides forward. Thank you all for the continued support.
12/5/22
Sam continues to do very well. She has started walking around the house short distances without her cane. Her speech continues to improve all the time and she is starting some focused therapy on her left upper and lower extremity this week. Overall, she is continuing to see forward progress each week which is very exciting. As always, thank you all for the continued love and support!
11/29/22
Sorry for the delay in updates, it was a busy holiday week! Sam was able to travel to her mom's home for the holiday and spend time with lots of family! They had a very busy but enjoyable trip! No other big updates for now, hope everyone had an enjoyable Thanksgiving!
11/20/22
Sam had a good week. Her, Trapper, and Jaiden took thier first trip since Sam's accident, by car. Sam tolerated the trip well and overall they had few hiccups. She continues to progress with her speech and physical strength. They have plans to travel again, by plane, for Thanksgiving and hopefully that trip is smooth as well. Thank you all for your continued support and love.
11/13/22
Sam had another good week. I am unable to load videos but Trapper sent a video of her walking at therapy without her cane on the treadmill. That is pictured below. She continues to work very hard on her physical strength and speech, making progress on all fronts. Thank you all for the continued love and support!
11/06/22
Sam had another good week! She continues to make progress with speech and well as her physical strength. She had a very busy and tiring weekend, filled with visits from many friends and Trapper and her attended Elton John with Nate and Leanne which she thoroughly enjoyed! As always, thank you all for the continued love and support!
10/30/22
Sam had a great week! She is walking most places now, utilizing a cane for help. She rarely has to use the wheelchair and really is only needing it if they are going somewhere where she is going to have to walk a long distance. Sam is enjoying her home care, and will have her first outpatient evaluation to start her outpatient therapy back at Craig Rehab Hospital tomorrow. Her speech is improving and her voice continues to get stronger. Trapper says she has really crushed it this week with improving her independence and making huge srides with her strength. As always thank you for your continued love and support!
10/23/22
Sam had a good week. No big updates this week. This was her first week with her in home care. Sam continues to work hard to continue with forward progress! Thank you all for the continued love and support!
10/16/22
Sam is home! Today marks 6 months since the day of her accident. She is able to walk up and down the stairs to and from her bedroom with Trapper's help, she is still needing her wheelchair for any long distances and it will probably be this way for some time. Sam will continue outpatient therapy at Craig Hospital for the foreseeable future. She will require home care during the day as well, for the foreseeable future. Physically, Sam is seeing great progress (small and steady improvements daily), this is also true for her speech, though the speech tends to be the more frustrating aspect of her days at the moment. Sam is feeling happy to be home and Trapper and her have already created systems which are keeping Sam safe but still allowing her to continue to work towards more and more independence. Trapper feels like the updates are reasonable to continue if people are still interested in Sam's progress, so for now we will continue. As always, thank you all for the continued love and support.
10/09/22
Sam is planning to discharge home on Wednesday. I was not able to connect with Trapper this weekend to get a thorough update but I am sure they are quite busy getting things situated for Sams transition home. I am unsure of how the updates will look moving forward or if they will continue once Sam moves home. I will keep everyone posted once Sam is settled and we have that part lined out. It may be beneficial to restart the meal train for the Searles family and I am waiting to hear from them, Trapper wanted to talk more with Sam about this. If they feel this will be helpful I will post it here so that those who live closer to them can help in this way, as they settle in. This is another huge step in the right direction and its important to keep celebrating these milestones. It is easy to look at how much work still needs to be done and get overwhelmed, but Sam is doing amazing things, making huge strides every day. Thank you all so much for the conitnued love and support for her and her family. They appreciate it more than you will ever know!
10/02/22
Sam continues to work very hard. She is working on walking with a cane now (with a little help). She is doing well with water therapy. They plan to discharge her home here in the next couple weeks and in preparation for that, will switch her out of her hospital bed and into a regular bed so she can practice getting in and out safely. She had a busy weekend going to Jaiden's soccer game and baking with Jaiden and her mom, Debbie. She continues to work on her speech which is still an irritation for her. She will need quite a bit of care once she gets home and Trapper is working on finding trusthworthy, consistent help for her now. Thank you all for the continued love and support. Her progress thus far is remarkable and everyone is incredibly grateful for it, we hope to continue to push her to achieve as much independence and overall function as possible. When this all started the doctors told Trapper that it would take a year for her to recover, and for us to understand what that meant for her because for every patient, "recover" is different. We are moving in on the 6 month mark and she is making huge strides. We hope to see that continue. The hurdles are changing but will still be in front of her- please continue to send all your love, positive energy, prayers and support this way.
9/25/22
Sam continues to make progress. No big changes this week, her language continues to be an area of frustration for her but it is a slow and steady process to work on and she is making some strides in the right direction. She is doing well and working hard to improve her strength. She has been approved to start swimming at Craig which is a big deal and a very exciting step in our efforts to get her functionally optomized at all levels. She got to have another nice weekend at home and a couple dates with Trapper and Jaiden!
9/18/22
Sam continues to make progress. No big changes this week. She is doing well. Got to have another nice weekend at home and a little date night with Trapper this week!
9/11/22
Sam made some very big strides this week and because of this has gained a few more weeks at Craig! New estimated discharge date is early-mid October. She was able to walk with assistance up and down stairs and she was able to walk a bit more independently on flat surfaces. Sam is still primarily in a wheelchair for long distances and still needs a lot of help from her PT/OT crew but it has been very exciting to see some big progress happen. She is really working very hard on all fronts. She had another enjoyable weekend watching Jaiden play soccer and relaxing with Trapper, Debbie, and J at home. She also got to enjoy a Mani/Pedi today with J! As always, please continue to send your love, energy, positive thoughts etc this way! Sam continues to work on her speech (we know this could take a very long time to recover) and I imagine as we get closer to her going home date, when they feel she is ready to comprehend the complexity of her injuries, she will learn of this website (It should be noted here, no one wanted Sam to experience this all again without the ability to then express herself fully- since she is still working on how to express herself with the words she wants- it hasn't felt like the right time to dive into everything in such detail as the website contains). None the less, when she is home- It will then be up to her what she chooses- if anything- to continue to share with us as her journey continues. It is possible we are nearing the end of the updates but I will continue to do them weekly until that time comes.
9/3/22
Sam has one more month at Craig. Progress continues to feel slow but remains remarkable. She got to come home this weekend for a longer visit and had many visitors. She continues to work on her speech and mobility- moving herself in the wheelchair and moving from wheelchair to other chairs. The outings allow Sam and family to experience more obstacles which can be hard but each day everyone continues to learn and adapt to new norms. Please continue to send your love and support to Sam, Trapper and J.
8/27/22
Sam continues to work very hard to continue to make progress, Trapper reports this week that her speech therapists feel like she is making some good forward progress with her expressive aphasia. She was able to leave Craig Hospital today for a little outing with Trapper and Jaiden. They went to the families favorite breakfast place and she got to go home for a short visit and see her puppies- who have missed her dearly. Please continue sending all your positivity this way for this crew! Thank you all for all the continued love and support!
8/20/22
Updates are a little harder now as the progress is slow and steady. Sam continues to work very hard to continue to make progress. Here is a photo of her working on walking with therapy. Please continue to send your support and love this way as it continues to be a battle each day for all to stay positive and find the good. It is difficult not to look at the entire mountain that still needs to be climbed and this gets overwhelming. Thank you all!
8/13/22
No big updates this week. Sam continues to work on making her voice strong. Sam does multiple hours of therapy per day and is making progress on all fronts. Her expressive aphasia continues to be an area of frustration for her but she continues to work hard to work through this. Thank you so very much for the continued love and support and please continue to send lots of positive energy and hope this way.
8/05/22
No big updates this week. Sam continues to work on making her voice strong. She has been working on a squat/pivot method to get into bed and chairs and this is going well. She continues to work hard with therapy. As usual - thank you so very much for the continued love and support and please continue to send lots of positive energy and hope this way.
7/30/22
No big updates this week. Sam is no longer needing any tube feeding and she is allowed to eat more "normal food" . Her voice is getting louder and stronger and she continues to work rigorously with her therapists. Lots of hard work being put in on all fronts right now, taking everything one day at a time. Thank you all for the continued love and support, please continue to send it when and how you can!
7/23/22
Sorry for the delay in Sam's update this week.
Sam's speech is coming along, though slower than she would like. This seems like it is going to take some time, Sam knows what people are saying, she seems to understand it but she is struggling to return the conversation. This has to be so incredibly frustrating for her. She is doing well with PT, has been working on parallel bars and using a walking device. The goal is that Sam will walk again and she is working hard toward this goal. She currently uses a wheelchair often and she will likely need one when she goes home though they are hoping she won't need it often down the road. She is doing well with OT, brushing teeth, getting dressed and undressed as best as one can with only one arm and a leg that doesn't cooperate. Sam is starting to recognize that things aren't right. She knows something happened and has been asking Trapper often, what happened and if she is going to be ok. In Trapper and Sam's families journey this is another hurdle of heart break to try to explain to her and in Sam's journey- even though she has already been through more than anyone should have to physically, it is the start of what will likely be a profound amount of mental work. It is hard to imagine this journey being more difficult but it likely will be as we enter this next phase. Trapper feels like Sam's overall demeanor and attitude remains positive which is great. Please continue to look for ways to help this family, to lift them up, send them love and positivity and leave space for the tough and less positive moments. Thank you all so much for the continued love and support.
Sam did get to go to the Lake yesterday with a group of other patients and they had a good day!
7/15/22
1:15 PM Sam has continued to do well this week. They did have a "prognosis" meeting today which was quite detailed. It involves all of her doctors and therapists (care team) with detailed reports and they address deficits and state what they believe are acheivable goals and outcomes for Sam. It is worth noting that they state, they utilize averages based on the initial damage done but that all patients are different so they can never say, with certainty, what patients will get back. They made it very clear that they do not want to restrict her in any way, thier goals are for her to have the best possible chance to recover in all areas, regaining optimal function across the board.
Related to the brain damage, Sam has Ataxia (Impaired coordination), Aphasia (language disorder affecting ones ability to communicate), Sam's therapists believe she is not comprehending language fully right now and that her responses are more habitual. It also takes her brain a little longer to register the language so her responses are delayed due to this. Therapy will work on improving all of these issues. Regarding her physical impairments- Sams left leg is improving and she will start working on transferring to and from a wheelchair. The end goal is for Sam to walk, though they do think this will be restricted in that she will need to stay on flat surfaces and will likely need some assistance (maybe a walker or a cane, and potentially a brace on the left lower extremity). Again, please remember everyone is different- Sam is incredibly strong physically and she gains more each week. Her left arm is more relaxed and their goal for her arm is that she will be able to find comfortable positions for it. When the muslces are flexed it is very painful to her, their goal is to keep the muscles relaxed (they have been utilizing botox injections and therapy to help achieve this) so she can be comfortable, they were uncertain if she would regain much function in the arm. She is eating well but not getting enough calories yet so the feeding tube will stay in place for now. Sam's left side of her face (like the left side of her body) suffered paralysis with her initial injury. Due to this, she cannot feel the left side of her face which makes eating more of a chore then it used to be, it will take some time for her to start eating enough. They are hopeful Sam will get to go on some outings (away from the facility) in the coming weeks, Trapper may even get to take her to dinner or home for a few hours once he is trained on how to safely transfer her, this will probably not happen for a few weeks but is still really exciting. Please continue to send your thoughts, prayers, positivity, and love to this family and Sam and Thank you for all the support thus far!
7/8/22
2:15 PM Sam has had a good first week at Craig! She did have to have her VP drain adjusted because it was draining too much. This is not uncommon in the first year of having the shunt, and it is non invasive procedure as they are able to adjust it over the skin (there is a dial in the area behind her ear that works with a special magnet). She is eating well and remians on a mechanical soft diet. She has been walking with therapy (she has a walkway that has bars on either side and she holds on with her right arm). She needs a fair amount of help in getting her left leg to work for her and turning around is pretty difficult because of this. Sam is incredibly strong, in her spirit but also physically and this is indeed showing through in her therapy now. There is still no movement with her left arm but the therapists think this may come back (just may be the last thing she gets back and will likely not return to fully functional). She continues to work on talking but her voice is still not really there, she will see ENT (Ear, Nose, and Throat) specialist to look closer at her vocal cords which could have been damaged during all of this. Some of the area of her brain that was damaged is affecting some of the connection between what she wants to say and what she actually says (meaning she knows what she wants to say but then what comes out of her mouth is not it). This will also hopefully correct with intesive therapy. Sam is allowed to go outside with Trapper and Jaiden and her sense of humor seems to be intact (Part of her brain that was damaged helps understand sarcasm and we thought that might be impacted but so far- it isn't). She is doing well. Almost all her drains and lines have been removed. She still has a feeding tube which is really not being used and Trapper is working to get that removed soon. There have been some folks wanting to mail things to Sam, Trapper will look into the best way for this to happen and we will post an update with that info once we have it. Sam appears to be in good spirits at this time though, as one can imagine, somedays the therapy is hard and frustrating for her. Please continue to send your positive thoughts, strength, prayers, love and energy to her to help her on the hard days. The same is true for her family, we know in everyday you can find something to be thankful for but it doesn't make the hard parts dissapear. Please continue to surround these guys in "bear hugs".
7/1/22
5:30 PM Sam is doing well at Craig. It is much more fast paced and she is making great progress. There have been some communication hiccups in that compared to the ICU the communication isn't as frequent or detailed. Trapper hopes to meet with Sams care team soon to all get on the same page. Sam is starting to speak more each day which is very exciting. She is really working on moving her left leg and they have seen some progress there which is great. Her appetite is good and she is getting a good amount of calories by mouth so they are hopeful they can get rid of her feeding tube in a week or so. We plan to move forward with weekly updates. Obviously if anything unexpected were to occur we will update sooner. For now, plan for Friday weekly updates! Thank you all so much please continue to send all that love, positive energy, prayers etc to Sam and her family!
6/29/22
8:00 PM No big updates today. Sam is settled in at Craig. Got to get dressed in regular clothes today and started her therapy!
6/28/22
7:00 PM Today Sam moved on from ICU and into Craig Rehab hospital. It was a busy day. Today's update will consist of just attempting to summarize what Sam has overcome thus far. This is an estimated number as nursing didn't have time to comb through her chart. Sam has had a total of 39 Head CT's, at least 3 MRI's, 12- Angiograms (catheter placed in artery (groin, arm or neck- sam had them in groin and arm) threaded through the blood vessels to the brain), 3 Major surgeries in OR and a few other minor surgeries (craniectectomy, cranioplasty, VP shunt, EVD placement and replacement, Tracheostomy, Peg tube (feeding tube) placement), Multiple lines (arterial line, peripherally inserted Central catheter, and midline). She has been in ICU for 74 days in total. It is a profound thing to look back at this moment and realize what she has come through, a bit overwhelming and yet, very promising knowing she has so many more goals to shatter as it relates to her recovery. It was too busy of a day to figure out how often the updates will continue so we will have more info on this tomorrow. Thank you all so much for everything you have done and continue to do to support Sam and her family, we will never be able to articulate how much it means to all of us!
6/27/22
9:00 PM Sam had another good day. She will be going to Craig Rehab Hospital tomorrow! She did well today and actually lifted her left leg up for nursing to put a pillow under it (she has never done this before on her own). This is great to see as we head off into a more aggressive therapy rotation. We are hopeful that she will regain some function, hopefully some signifant function with that left leg as she moves forward. Sam will get to wear regular clothes for the first time in months! She will get to start learning what her body can do and relearning how to do things in a new way to account for the functions that may return differently. Sam has had amazing care at Saint Anthony's Hospital and we are so incredibly grateful for the staff there. We are sad to leave them but it is absolutely necessary in our steps moving forward to get Sam as strong as she can be. Thank you all for the continued support and love. Moving forward we are not sure if the updates will continue daily. Trapper will meet with her new care team tomorrow at Craig and they will figure out what will work best for all involved moving forward. I will post an update tomorrow to let everyone know the new suspected schedule of updates. We recognize many are invested in Sam's recovery and want to keep everyone involved as much as possible but as she moves forward we may be able to do that still with less frequent updates. Again, thank you all so much !
6/26/22
9:00 PM Sam had a good day, no big changes today. Watched the Colorado Avalanche win the Stanley Cup! Please continue to send your love, prayers, positive thoughts this way as we prepare to move to Craig sometime this week to really get moving with Sam's therapy! Hoping for another big week of continued improvement for her!
6/25/22
5:30 PM Sam had a good day. She is doing well eating soft food with some assistance. She had a little spa day today and got a pedicure in her room from myself and Jaiden. Plan is potentially for her to go to Craig on Tuesday. No other big changes today. She continues to do well. Thank you all!
6/24/22
3:30 PM Sam is having another great and eventful day. She passed her swallow study with flying colors and she got to eat her first meal. She had Salmon, mac and cheese, yogurt and grape juice. Sam fed herself and did absolutely amazing! She contines to impress the staff with her strength, she has stood multiple times today doing most of the work by herself and working on putting more weight on her left leg. She hasn't been sleeping much so we are hoping she'll sleep some tonight! Thank you all, as always!!!
6/23/22
9:15 PM Sam had another great day! They met with the doctor who will continue to follow Sam when she is at Craig Rehab and that doctor felt she was ready to go straight to Craig which is great news! There will be another evaluation tomorrow to narrow down that timeline but likely will transfer early next week. Yesterday Sam required two people to help her stand but today (using the same assistive device) She stood with the strength of her legs and her right arm basically with no help for over 2 minutes, she was able to stand and sit a couple times which is nothing short of reamarkable when you consider that she has been bedridden for over two months. Her trach was removed today, it went very well and she has tolerated things wonderfully so far. She was able to try some water and ice chips, she did better with apple sauce as the thicker consistency is easier to manage in her mouth (keep in mind one side of her mouth isn't working the way it should). Sam has not had anything to eat by mouth in over two months so these are all just incredible milestones. Sorry for the late update! Thank you all for everthing. She still has a long road ahead but her perseverance and determination is surely unmatched. She is such an astounding woman. Please continue to send your support to her and her family!
6/22/22
8:00 PM Sam had a great and busy day. She didn't sleep last night but they kept her up today working with therapy, and she got to go outside. She was able to stand today (though it required assistance). Her trach was capped and she has been on room air since 1:00 pm. If she does well through the night there is some discussion that they may be able to remove her trach tomorrow. This is great news and important as she moves into her next level of recovery. She is making huge strides each day which we are grateful to see! She has not attempted to speak much which is not overly concerning as nursing thinks this part of her brain will need more extensive therapy as she works on rebuilding these skills. As always, thank you all for the continued support and love -it is remarkable!
6/21/22
8:00 PM Sam had a good day. She had the speaking valve on and was able to whisper a few words which could be heard if you got an ear close to her mouth. She said "hi" and "I love you" to Trapper. There was some discussion about her next step regarding rehab today because she is doing well. She will get an evaluation Thursday and Friday to see if she can go straight from this current hospital to Craig Rehab Hospital. If they feel she is not quite ready for that move, she will transfer to a type of step down rehab facility which is not as intense as Craig to help get her ready for more intensive therapy. Our goal would be for her to go straight to Craig Rehab Hospital if possible. If the evaluation goes well later this week she could be looking at a transfer as early as next week. Thank you all so very much for all the support, hopefully this means we are moving in the right direction to get Sam feeling strong. They have done a remarkable job caring for her in the ICU at St. Anthony's Hospital and we are incredibly grateful for the kindness, love and genuine care she has recieved from the staff there. We are anxious for her to go somewhere else because we know she is loved where she is but we understand in order for her to continue to progress forward this next step is necessary!
6/20/22
8:00 PM Sam had a good and busy day. Her repeat head CT showed a pneumocephalus (the presence of air in the intracranial space), this was treated with higher flow oxygen and today her CT was stable and so her oxygen was decreased back down. She was switched to a cuffless trach (which is just one step closer to getting rid of the trach and allows her to manage her own secretions), tomorrow they will try a speaking valve. She has been consistently been following commands on the right side and interacting with family and staff more appropriately. She sat at the edge of the bed today with Physical therapy and occupational therapy and worked her right side. She was restarted on subcutaneous heparin which is a low dose blood thinner to help prevent blood clots which could occur from being in bed for so long while recovering in the hospital. This was put on hold for her surgery but restarted today. Lots of little steps forward today!
"FORWARD- you only need to focus on one little step forward. You don't need to conquer the entire mountain right now. You don't need to have everything figured out today. The only possible way to climb a mountain is by climbing it one step at a time. Don't think about the peak, don't worry about what may come later. Instead, focus just on the one little step in front of you. The rest will come when it's time. For now, it's just one little step." - Quote from Walk the Earth off of Pinterest.
Thanks for all the love and support! We can celebrate the forward steps today! Please continue to send your positivity, prayers, etc this way!
6/19/22
5:15 PM. Happy Father's Day! We hope Sam's dad Steve has been carrying her on this journey especially on her tough days. Sam had a good night, she slept fairly well. Today they removed her JP drain (this was placed to help drain any excess blood after the cranioplasty. She is having a repeat head CT tonight and they said no news is good news. She has been following commands well today and answering more yes or no questions appropriately according to nursing. She is still in a critical window but everyday with a little progress is great and certainly worth celebrating!. Thanks everyone for all the continued love. Keep sending it this way please.
6/18/22
3:30 PM Sam has had a good day. Mostly resting but was responsive to Trapper and Jaiden (gave some kisses and high fives). Debbie felt like she was able to track Trapper with her eyes across the room (this is important as we some patients with the injury Sam has neglect the left side of their body). She appeared to be in pain this morning and was given some IV fluids to rehydrate her and a small dose of pain medication which was helpful and she appeared more comfortable throughout the day. Thank you all so very much for the continued support and love! It is so appreciated.
6/17/22
1:30 PM Sam is pretty sleepy today. Her surgery is scheduled for 3:30 PM and they estimate it may take 4 hours. Her update will likely be quite late as we will have to wait until she is back to the ICU and settled. Will post an update as soon as we have one. Thank you all for the continued love, prayers, and positive thoughts.
3:45 PM Unfortunately, Sam's surgery is delayed. The expected start time is now 5:00 PM.
5:30 PM Sam has gone back now. Her neurosurgeon explained the concerns for Sam after the cranioplasty (putting her skull back on), she will have more intracranial space (the space between her brain and skull) on that right side, it is possible that she could bleed into this space. They will place a drain there to try to prevent this but if Sam were to have a large amount of blood into this space they have explained there will not be any further interventions they can offer. This is unlikely to happen but is one of the surgeons bigger concerns. Sam has to be on anticoagulation to protect the stents in her brain (which fixed the aneurysm) as well as the VP shunt they will be placing now. In normal cases, patients with these (stents and VP shunts) would be on a more intense anticoagulant (like Plavix). Sam has had issues with bleeding so she will remain on aspirin only for now. Will update once she is back from surgery. They did explain the next three days will be critical in evaluating things and that neurologically she may decline further in these initial 24 hours.
9:10 PM Sam is out of surgery. They said things went very well, her CT scan looks good right now. She is breathing on her own now. They won't necessarily repeat her CT scan tomorrow, it sounds like it depends on how she is looking. Thank you all for the prayers, love, positive thoughts. Please keep them coming as the next few days are also crucial. But this was a great step.
6/17/22
1:30 PM Sam is pretty sleepy today. Her surgery is scheduled for 3:30 PM and they estimate it may take 4 hours. Her update will likely be quite late as we will have to wait until she is back to the ICU and settled. Will post an update as soon as we have one. Thank you all for the continued love, prayers, and positive thoughts.
3:45 PM Unfortunately, Sam's surgery is delayed. The expected start time is now 5:00 PM.
5:30 PM Sam has gone back now. Her neurosurgeon explained the concerns for Sam after the cranioplasty (putting her skull back on), she will have more intracranial space (the space between her brain and skull) on that right side, it is possible that she could bleed into this space. They will place a drain there to try to prevent this but if Sam were to have a large amount of blood into this space they have explained there will not be any further interventions they can offer. This is unlikely to happen but is one of the surgeons bigger concerns. Sam has to be on anticoagulation to protect the stents in her brain (which fixed the aneurysm) as well as the VP shunt they will be placing now. In normal cases, patients with these (stents and VP shunts) would be on a more intense anticoagulant (like Plavix). Sam has had issues with bleeding so she will remain on aspirin only for now. Will update once she is back from surgery. They did explain the next three days will be critical in evaluating things and that neurologically she may decline further in these initial 24 hours.
9:10 PM Sam is out of surgery. They said things went very well, her CT scan looks good right now. She is breathing on her own now. They won't necessarily repeat her CT scan tomorrow, it sounds like it depends on how she is looking. Thank you all for the prayers, love, positive thoughts. Please keep them coming as the next few days are also crucial. But this was a great step.
6/16/22
11:00 AM we are waiting for neurosurgeon to officially review Sams MRI but nursing reports the MRI confirms that Sam needs the VP shunt. Sam has hydrocephalus (build up of fluid on the brain) worse on the right side. Her current EVD is not sufficient to keep up with this. No changes to the plan right now We will proceed with surgery tomorrow. The VP shunt should fix this.
Sam had a rough day due to the cerebrospinal fluid buidling up and - this build up occurred in her right ventricle primarily but could be seen on the right side of her head as well. She experienced a neurostorm, this can be a common issue in patients like Sam and it can present with tachycardia (elevated heart rate), Hypertension (high blood pressure), diaphoresis (sweating), tachypnea (rapid breathing), and muscle posturing. Sam exhibited all of these symptoms in the early afternoon which was quite concerning. Nursing continued to watch her closely and they were able to get a good amount out of her EVD drain in a fairly short time. Sam really improved after this, she was much more interactive, we were able to make her laugh at a few jokes and she seemed to understand much more then she has been. Her symptoms all improved as well and she appeared much more comfortable this evening.
I have included a photo of the VP shunt and also of the brain ventricles to help everyone visulaize what her issue is and how it will be fixed.
Sams surgery tomorrow will be in the afternoon. Sam is in great hands, but we could use all the positive thoughts, prayers, love, energy - whatever you have, send it her way tomorrow and the coming days. The surgeon is cautiously optimistic about this surgery, though he has explained all the possible outcomes to Trapper and we understand it is a serious surgery. Thank you all so very much for your continued love and support!
Images borrowed from google image.
6/15/22
7:25 PM Sam was less responsive today with regard to her neuro exams. Nursing noticed a slight decline but it was more obvious in Sam's interaction with Trapper. Sam didn't sleep well last night so it could just be that she is worn out. They did decide to re-image her today with a head CT, this happened later this afternoon. This image was less clear then they would have liked in helping them evaluate changes so they have decided to get an MRI tonight. Sam is getting this now and we will update if there are any significant findings that we are made aware of this evening. The plan prior to this was to proceed with surgery Friday.
For reference the syndrome the neurosurgeon has discussed with family that could be contributing to Sam's neuro decline which started last week is called "Trephined Syndrome" This is a neurological deterioration, which is attributed to a large craniectomy- basically the barometric pressure that our brain is typically protected from by our skull, starts to cause problems within the brain once that protection has been disrupted (craniectomy). This can present with aggravation of hemisyndrome or cognitive disorders and the hope is it would improve or disappear with cranioplasty (skull replaced). The timeline for improvement can be near a month after procedure- which is helpful as we all continue to set small goals for Sam.
For now the cranioplasty and VP shunt are planned for Friday- likely afternoon . Thank you all so much for the continued support and love, please continue to send it all this way, everyone- but especially Sam, sure needs it.
6/14/22
7:45 PM Sam remains stable. She continues to intermittently follow commands on the right side with little movement on the left. No big changes today they are just staying the course, trying to have Sam be in as good of shape as possible in preparation for the upcoming procedures (VP shunt and cranioplasty). These are tentatively scheduled for Friday. Thank you all and please continue to send all the love, positivity, prayers, any good stuff this way.
6/13/22
6:30 PM Sam had an eventful morning. She is stable now but did unfortunately have a surprise decanulation of her trach. Her trach came out somehow, this opening in the trachea begins to close quickly once the tube is removed and this started to happen. Nursing staff reacted quickly but were unable to push the trach tube back in and Sam had to be emergently intubated orally. They did then have to surgically increase the side or her tracheostomy to get the tube back in. She was sedated for this and the event itself was probably pretty scary for her. For a brief time she needed some medication to bring her blood pressure down but this was not needed for long. Things settled down and this afternoon she was resting comfortably. She was enjoying giving high fives and continues to intermittently follow commands on the right side. We still don't have a difinitive date for her surgery but they continue to say sometime between Wednesday and Friday. As always, please continue to send your love and positivity this way. Thank you all very much.
6/12/22
3:00 PM Sam was more awake this morning so nursing took her outside to get some fresh air. No big changes today as far as her plan of care, she remains intermittently able to follow commands though she has been more alert each morning staff feels. She is enjoying giving high fives right now. We don't have a date set yet for surgery but Tuesday, Wednesday and Friday were all mentioned. Should have a difinitive date tomorrow hopefully. There is a mixture of hope and fear associated with this upcoming surgery as they have prepped Trapper that any complications could be detrimental and there would not likely be much intervention they could offer. That being said, the hope remains that it will go smoothly and we will start to see some bigger leaps moving forward. Please continue whatever it is you are doing on your own to send all the good stuff this way. Just like her first weeks in ICU we need all we can get going right for our girl! Thank you all for the love and support and please continue to lift Sam and her family up however it is you find most helpful!
6/11/22
6:15 PM Sam continues to be more interactive with Trapper and Jaiden. Nursing reports that with staff, she is still intermittently following commands. She didn't sleep well last night so she was a bit more tired today and trying to rest. Overall, nursing felt today was a good day. Her EVD continues to work and they plan to stay the course with hopeful VP shunt and Cranioplasty to happen next week sometime. No big changes today with her plan of care. Thank you all for the continued love, support and prayers!
6/10/22
8:25 PM Sam had a better day. She was more awake in the morning and nursing took advantage of that and had therapy come get her out of bed and work with her. She was pretty wiped out this afternoon due to all the activity. No other big changes today with regard to her plan of care. The many cultures they obtained looking for any signs of infection have all remained without growth which is good news. Her EVD drain continues to function well. Overall nursing felt like it was an improvement today. She did continue to intermittently follow commands but it was a big step to work with therapy. Thank you all for the continued love and support. Please continue to send all your prayers, love, postive energy, just all the good stuff this way!
6/9/22
7:15 PM Sam was again slightly more responsive today. Nursing reports she is much more responsive and interactive with Trapper then with them. There is no tentative timeline yet for surgery just sometime next week. Otherwise no big changes and we will just continue to stay the course until she can have surgery. Thank you all for the continued love and support.
6/8/22
6:25 PM Sam was slightly more responsive today for Trapper, she was still inconstistent with nursing. They are looking closely for any infections that could be contributing (she's having repeat blood cultures, chest X-ray, urine culture, and cerebrospinal fluid culture). She doesn't have any obvious signs of infection right now (no fever, labs look good) other then the neuro status change. They have started some broad spectrum antibiotics just to avoid any delays in potential surgeries while they wait for the cultures to grow. No other big changes today, just continued close monitoring. She did have repeat head CT last night which also was stable from her previous imaging.
It was positive that Sam seemed to interact more for Trapper as that was not necessarily the case yesterday when he saw her. Please continue to send all your love, prayers, and positivity this way- it is much appreciated and needed. Thank you all.
6/7/22
7:00 PM. Tonights post is more difficult to write. I'd like to convey positivity but also fully explain where things are at. Sam was about the same today and maybe slightly worse with therapy noting she seemed more stiff on her right side. She did follow commands on her right side though it remained sparse and inconsistent. The head of her neuro team spoke with Trapper to cover where we are and what they can offer. Understandably, Trapper is not in a place to repeat that conversation multiple times but the gist is that they can and will attempt to place a VP shunt (Ventriculoperitoneal) , this will function like Sam's EVD drain to help manage her intracranial pressure. This drain requires that Sam be anticoagulated (have thin blood) and so it comes with a risk of bleeding- it was explained that if Sam were to have any further bleeding complications that would likely be life threatening and there would not be much they could offer to counteract that. Sam also needs her skull to be placed back in position, this surgery comes with similar risks. It was explained that at this point we still do not fully know what Sam's recovery will look like, it is possible these surgeries could take place without issue and Sam may remain in the same state she is in now, or she may begin to improve. We should know which direction things are going to move in within the next few weeks. These surgeries are tentatively planned for sometime next week.
To summarize briefly where Sam's current damage is, her right hemisphere from the initial aneursym rupture, her cerebellum from the most recent bleed, she has some smaller bleeding and subsequent hematomas along the track of her EVD drain which is putting some pressure on the left brain and she had some fluid shifting which put some pressure on the left brain as well.
For now the plan will be to stay the course working toward proceeding with these procedures in the coming weeks. Please continue to send all of your love, prayers, and positivity this way. Thank you all very much.
6/6/22
8:57 PM Sam remained much the same today with regard to her neuro exam. She was inconsistently able to follow certain commands on the right side. Nursing didn't feel like she was necessarily worse today but certainly no better. Her EVD is working and they are continuing to monitor her EEG. There were no big changes today to her plan of care.
6/5/22
6:00 PM Sam was much the same today. She was intermittently following commands on the right side. She is still significantly less interactive then she was a few weeks ago. Her EEG thus far has not shown any signs of seizures though the final report will come at the completion of the test, which will be tomorrow ( I believe they were going to monitor for 48 hours). She was on some medication yesterday to increase her blood pressure, this caused her heart rate to drop so it was stopped today and the parameters for where they want to keep her blood pressure was changed to focus less on her systolic and diastolic numbers and more on her MAP (Mean arterial pressure- a number calculated from the diastolic and systolic pressure which is the average pressure in a patient's arteries during one cardiac cycle- it essentially measures the perfusion to organs). She is finishing up her antibiotics from her pneumonia detected earlier this week and that is looking good. She has done well managing her secretions and tolerated many of the trials working toward the removal of her trach. We suspect they will be downsizing the trach again this week (placing a smaller size in with the goal of removal in the coming weeks). The biggest concerns we have now are Sam's mentation, her ability to understand and respond. Unfortunately, she has had a lot of damage to her brain that makes all of this take time. The time is moving slow for us as we watch her navigate this path. We hope to get some more answers this week, a more specific plan moving forward, and some goals set for her. Sam is in good hands and we understand some of this is the nature of her injury and certainly the added hurdles of a new bleed and her EVD issues have not helped. As always, please continue to send you love and positivity this way!
6/4/22
7:15 PM Sam had an ok day. She was less interactive and didn't seem as good as she was yesterday. It was a bit disheartening of a day overall, though the medical staff have said we should expect some waxing and weaning with her mentation. She was less responsive in following commands today which they did agree was the case. They have hooked up back up to the EEG (electroencephalography) to see if she may be having seizures. They did not want to repeat any imaging stating that Sam has been exposed to a significant amount of radiation with all the scans she has already undergone, they would like to keep an eye on how she is doing and will certainly recondisder depending on how she does moving forward. She was still following some commands, though inconsistently, but they felt it was enough to hold off on re-scanning her right now. Sam continues to do a bit better for "her people" Trapper, Jaiden and Debbie. Overall there were no big changes to speak of today but it was a bit of a tough day. Please continue to send your positive thoughts, energy, love and prayers this way.
6/3/22
6:25 PM Sam was a little less interactive today but it was mostly due to being worn out. The speech therapist worked with her for almost an hour (she is not yet trying to talk) and her physical therapist worked with her for about 30 minutes. She was quite worn out once they completed her therapies and rested for a good amount of the day after. She has been off the vent today and despite being tired from therapy her breathing has remained strong. She is following commands on the right side and withdrawing from pain on the left. Her blood cultures that were drawn earlier this week did not grow out any bacteria which means she didn't have any secondary infections. She completed one antibiotic for her pneumonia and remains on a different more broad spectrum antibiotic still. Her EVD drain is working well and her intracranial pressure has stayed below goal thanks to this drian working well. Overall, nursing felt she was continuing to hold her own and make small progress. Thank you all for the continued support and love.
6/2/22
7:45 PM Sam had an uneventful night! Her neuro exams today continued to be improved. Nursing reports she was more animated today. She tolerated the speaking valve for quite some time today (she did not try to talk but it didn't make her work of breathing more difficult). EVD is working well, vital signs have been good and overall she had an uneventful day with some slight improvement in her neuro exams. Please continue to send your love this way! We appreciate you.
6/1/22
6:00 PM Sam had a better day. Nursing reported her CT scan was stable this morning, so the new bleed has not grown (of note: it does not sound like they plan on imaging her every morning moving forward- only if her neuro exams are not moving in the right direction). Her EVD is functioning as it should. Her fever has been minimal and she remains on broad spectrum antibiotics (that means she is on an antibiotic that will cover a wide array of bacteria as they await her cultures). So far her cultures have not grown out anything. They did some weaning on her vent this morning and she was placed on a trach collar before noon (this is where she is just getting oxygen only into her tracheostomy and breathing all on her own). They planned to do this for a few hours if she tolerated it today. She was able to follow commands today on her right side. She was still quite tired and rested often throughout the day but definitely improved from the last few days. Thank you all for such great support, love, and encouragement. Please continue to send all you've got this way!
5/31/22
12:00 PM I will update more later today with more clarity. There have been multiple obstacles overnight. Sam has unfortunately suffered another brain bleed in a different location (cerebellum). This area was not previously damaged from her initial injury. Her case remains complicated because they cannot continue anticoagulants due to the bleed, but this is problematic for the protection of the stents that were placed to fix her aneurysm.
She has pneumonia which they have started antibiotics to treat and they are doing an ECHO (echocardiogram- imaging that uses ultrasound to measure and monitor heart function) to look for other sources of issue.
She is not having seizures which is good. She remains on the ventilator, she is not sedated and minimally responsive. Nursing reports she is more responsive to family then to them, but it is minimal.
It is hard to stay positive but we must. I will update again this evening with hopefully more detail. Thank you all for the continued love and support.
8:45 PM Sams EVD drain has continued functioning today without issue. Her ECHO (echocardiogram) showed no evidence of infection or heart failure. The nurse thought she was slightly more alert as the day went on. No other big updates this evening. Thank you all for all the love- Sam and her family sure need it!
5/30/22
2:15 PM Sam had a problematic evening. During the night she exhibited some symptoms of respiratory distress in that her respiratory rate was quite rapid. As a precaution, they placed Sam back on the ventilator (the machine that breaths for her) to allow her body to rest. They thought she may have had a seizure last night and so today she is on conintuous EEG (electroencephalography) monitoring to see if they can see any seizure activity. They will likely have her hooked up to this for 24-36 hours depending on what they are seeing. Her CT scan today shows improvement in the clot that was affecting her drain and her EVD drain has been working through the night. Additionally, she spiked a fever in the early morning hours and so they are concerned she has another infection somewhere. They have cultured everything in an attempt to find and treat it (blood, sputum, urine, cerebrospinal fluid). She is resting today, so not much with respect to responsiveness.
Every patient is different and so none of these "bumps in the road" are necessarily expected, but the nurses report they are not necessarily complications they don't see/haven't seen. At this time, they are still very positive in that, they do not think any of these set backs have created permanent hurdles that Sam won't be able to clear at some point. It is hard to see, nonetheless. Please continue to send all your love to Sam and her family. All we can do is continue to hope that these obstacles subside and we get to some level ground soon to allow Sam some forward progress. Please continue to surround this family in your love, thoughts, prayers, all the good stuff! Thank you.
5/29/22
6:31 PM It was not a great day today for Sam. Her EVD (the drain helping to decrease pressure through draining her cerebrospinal fluid) unfortunately clogged again last night. This caused another drastic change in her neuro status last night and today they worked on trying to figure out how to keep this drain functioning. It sounds like they plan on trying some different strategies over the next few days. She is still not following commands and was worn out today. Its been a tough week this week for her and her family. Please continue to send all your love, prayers, positivity etc. Thank you all for your continued support- it is appreciated.
5/28/22
7:15 PM It sounds like the EVD drain is functioning today. Sam was alert. Her mother (Debbie) reports that she was able to track people around the room, waved at a few people, and stayed awake for some time today. Debbie also felt like she got one small smile out of Sam today. Obviously, we took a few steps back so its expected it may take Sam some time to get back to where she was but movement foward is always good even if its small steps. Thank you all for the continued love and support and please continue to keep this family in your thoughts and prayers, the medical team has warned this will be a marathon for all and it is definitely not falling short of that.
5/27/22
5:26 PM Unfortunately Sam has not had a good day. She has been less and less responsive (appeared more worn out) since the drain was changed out a few days ago and this morning has had a significant change in her neuro status. It sounds like a blood clot developed in her EVD (the drain helping to drain her cerebrospinal fluid), this has caused fluid to build up on the left brain (this is Sam's undamaged side). They are using a medication called TPA (Tissue Plasminogen Activator) to break up this clot, in an attempt to get the drain functioning normally again. This is a big set back for Sam as she is no longer following any commands and she is minimally responsive at this time. They are going to start EEG monitoring as well to see if she may be having seizures on top of this. Its been a very hard day for all. Please send all your positive thoughts, love, prayers, energy- whatever you have, this way.
5/26/22
10:30 PM No big updates today. A bit of slow progress since having to mess with Sam's EVD drain.
5/25/22
9:30 PM Sam had a bit of a slow day today. Slightly less interactive but no big changes to update today. Thank you for the continued support and love.
5/24/22
9:00 PM Sam had a good day, much more alert today. This evening seemed to recognize and interact with family right away. No big updates today. She continues to work hard to move forward in her recovery. Please continue to send love, positive thoughts, prayers etc to her and her family. Thank you all.
5/23/22
9:00 AM Sam had some changes in her neuro exam last night, they think there is an issue with the EVD drain and unclamping it didnt fix the problem. Sam will go in for them to replace this drain this morning.
Last week when Sam had the infection in her PICC line she also had a clot that developed in right her arm. She was started on a heparin IV drip to treat this. This medication has now been stopped this morning in preparation for this procedure. Will post more updates today as we get them. As always, please continue to send your positive thoughts, love, and prayers this way. Sams healthcare team continues to be right on top of these changes and they are taking great care of her. This isnt necessarily a set back for her just something thats need addressed fairly quickly.
8:45 PM It was a long morning for Sam, it took three times to get the EVD drain where it was functioning the way it needed to and where they were happy with the placement. She spent most of this afternoon resting and recovering. It was a successful day just a few hurdles for her.
5/22/22
8:00 PM Sam had a good day. She was more awake today, she tolerated a speaking valve on her trach today for over 2 hours while Trapper and Jaiden were with her. She was able to speak today though it was more of a whisper. She said, very softly, "Hi" and "love". Trapper said it was very soft but with his head close to hers he could hear it. This is huge as she hasn't been mouthing words consistantly or trying to talk so this is another very exciting first in her journey. Her EVD drain has been clamped for over 24 hours and so far she is tolerating it well. Thank you all so very much for your continued love and support.
5/21/22
5:40 PM Sam was doing well today. Nursing reports she's having some headaches and she has been tired. They are downsizing her trach today (putting a smaller one in) whjch is part of the process to eventually get rid of this. They have clamped her EVD drain (the drain in her brain that drains her cerebrospinal fluid) to see if she will tolerate this. This is also a step towards potentially removing this drain in the future. This will stay clamped for a few days if she tolerates it before they make any decisions to remove it. She continues to work hard, please keep sending all your positive thoughts, love, encouragement, and prayers to Sam and her family.
5/20/22
9:00 PM Sam was pretty worn out today still from all the work she did yesteday. No big updates today.
5/19/22
8:30 PM Sam had a big day. She was fitted for a protective helmet so they could try to stand her up and she was able to stand with the help of the staff. This was huge for Sam and wore her out for the day! Here are some photos from Trapper below of her accomplishment.
5/18/22
8:45 PM Sam had a good day. She was able to sit in a chair for the first time. She was flashing her "glitter bomb" of a smile a lot today and Trapper felt like she really wanted to communicate with people. No big changes in her plan today. She continues to be one of the most impressive people I know and this is obvious with each days progress. Trapper posted a beautiful video last night of Sam counting with her fingers to his social media accounts, the video finishes up with a bit of humor and Sam's mischevious yet stunning smile. Thank you all so very much for the continued support and love, it is so appreciated. Please continue to send that good energy this way!
5/17/22
7:00 PM Sam had a somewhat restless night, she did wake up and interact well with Trapper this morning. They were able to play catch again with her right hand. Last night she colored with Jaiden and tried to write some things and was able to write some letters but no words. Trapper thought today she was doing a bit more when they were practicing mouthing words, she was moving her lips more in an attempt to try to mouth the words and they planned to try the speaking valve again throughout today. Her infection continues to improve and clear up. She did lift her left leg today off of the bed which is quite a huge improvement. Still no movement with her left arm and she has some left shoulder contraction (tightening, shortening or the muscles) from the lack of movement and therapy will continue to work on improving this with passive range of motion exercises. Last but not least on the exciting news of today is her vasospams are gone! Please continue to send all your love this way! Thank you again!
5/16/22
6:30 PM Sam had a better day today, still pretty tired but woke up and interacted well with Trapper this morning. She was playing catch with him with a ball with her right arm, which her careteam found quite impressive. The antibiotics that were started seem to be helping as she was a bit more upbeat today. She is not mouthing words or trying to talk yet but the hospital team does not seem concerned by this. She has been doing well with her trach trials and the pulmonologist (ICU doctor and lung specialist) believe they may be able to get rid of the trach in the next couple weeks. We are still looking at a rehab transfer some time in the coming weeks though the timeline is not definite yet. Sam continues to work hard daily and her strength and perseverance is astounding. Please continue to send her and her family all your love and positive energy. We are so grateful for all of you!
5/15/22
6:05 PM Sam was tired again for most of today. They did figure out that she did develop an infection in her PICC line (Peripherally Inserted Central Catheter- a thin, long, soft tube that is inserted into the vein in your arm with the tip of the catheter positioned in a larger vein near the heart). This line allows the nurses to easily draw blood and is used to give Sam multiple intravenous medications. They have removed the infected PICC line and placed another (in a different location) and started her on antibiotics. They have drawn blood cultures to see what kind of bacteria grows out but she has been initiated on broad spectrum antibiotics for now, these will likely be adjusted once they see what the culture grows out. Sam is otherwise doing ok, has just been more tired and not as active the last few days. Tomorrow marks one month since Sam's rupture, please send all the love, positive thoughts, energy and prayers this way and thank you all for all you have done and continue to do.
5/14/22
8:40 PM Sam had a good day but was very tired today. They did do a CT scan which showed a slightly larger Hydroma on the left side but they are not concerned with it at this time. Trapper reports she has moved her left foot slightly on and off and today the nurse thought she moved it to command. Please continue to send all your love this way and thank you so much for the continued love and support.
5/13/22
7:00 PM Sam had a good day. She has been in good spirits today, smiling often. They are considering taking out her other brain drain sometime next week and they have lessened the frequency of her neuro exams. Sam has been getting neuro exams every hour since her admission, they will now do them every 2-3 hours. Sam continues to work with therapy and each day she is making progress. We are so incredibly proud of her. Thank you all for all the love and please continue to send her your hopeful, happy, strong, persevering energy, prayers, and love.
5/12/22
8:45 PM Sam had a busy day with therapy. They did put a speaking valve on her trach today to let her start building up her strength to try to talk, this is a lot of work for her so is done for short periods for now. She was quite sleepy tonight and pretty wiped out from the day. No big changes today. Please continue to send Sam and family lots of love, positivity and strength and thank you !
5/11/22
8:35 PM Sam had a good day. She got to sit up with therapy and Trapper shared that video on some of his social media pages. Very impressive how much strength she still has after spending the last 3 weeks in bed (for reference they say one day in ICU is like being stuck in bed for 3 days in how it contributes to weakness- Sam has been in ICU for 26 days). It is not surprising at all, as she has always been and continues to be such an awe-inspiring and astonishing woman. Sam has done well breathing and the ventilator was taken out of her room since they dont think she will need it anymore. Please keep sending lots of positive thoughts this way and thank you all for your continued support.
5/10/22
7:00 PM Sam has had a good day, started trying to use her TV controller. She continues to have very little movement with her left side but has been doing purposeful movement well with her right. They are discussing removing one of her brain drains and she has spent less and less time on the ventilator (breathing machine). Each day they "tune her up" a bit more in preparation for her next step which will be to transfer to her first rehab facility with our end goal being Craig Rehab Hospital. She has continued to have some vasospasms today which is frustrating as she should be out of the window for these. We will likely switch to daily updates as she continues to improve unless things change.
Trapper and Jaiden are ready to start a meal train as they are getting tired of fast food and restaurant food. Betsy Hoffman has graciously set this up. I will include the link here as well as at the bottom of this page so it is easy to find. Please continue to send your positive energy, love, support, prayers etc to these guys- they will need us to pick them up, pace them, and maybe carry them along the way of this marathon Sam is starting.
mealtrain.com/4m9omm
5/9/22
4:00 PM Sam has had a good day. No scans today or angiograms. She didnt have vasospasms last night and neuro exams today are unchanged. They have began to discuss transferring her to the next phase of rehab and there is some discussion that this could happen in the next week or so depending on how she continues to do. No other big updates today. Thank you all and please continue to send your love this way !
5/8/22
10:20 AM HAPPY MOTHERS DAY SAM! Sam was awake all night (has her days and nights mixed up which can be normal in ICU) . She was wide awake this morning and interacted well with us. She was doing good with following commands on her right side and her sense of humor seems like its waking up a bit as well. The subdural hydroma is stable today on her scans and they plan to continue to monitor it. Sam was off the ventilator all night and did well With her breathing, they did put her back on it this morning because she was showing some other symptoms of fatigue (high heart rate) and they thought that might help her rest. jaiden gave Sam some beautiful mothers day gifts and Sam looked at them and did a small nod when we pointed out some details. Hopefully she'll get some rest now today. Thank you all and please continue to send your love, support, positive thoughts and prayers this way.
3:15 PM Sam had an angiogram for more vasospasms. She is back in her room and resting now, Trapper didn't get to speak to the doctor as he had another patient to see but he was told it went well. They plan to let her rest now for a bit and check back in this evening.
9:15 PM Sam was very interactive tonight! Trapper did a facebook live with her permission, Please check out those videos to see. Hopefully Sam can have a restful night and continue moving in this direction! Thank you all so much , please continue to send her your strength and love.
5/7/22
12:28PM Sam had a CT scan this morning. This showed a subdural hydroma (accumulation of cerebrospinal fluid between the dura and the arachnoid) on the left side. There was some discussion about draining this and for now, they are going to watch it. She also had some more consistent bradycardia (low heart rate) around 40 beats per minute, in the early hours of the morning. She was started on some IV medication to help with this and her heart rate today has been good. Her blood pressure is running on the lower end or just below where they would like, so they may need to further adjust medications to keep this on the higher side to help with perfusion to her brain. They are planning on checking her cerebrospinal fluid today for infection to see if this may be contributing to her heart rate and blood pressure. Sam is on antibiotics for her UTI but its important to note that antibiotics target certain bacteria so it is still possible to get a different infection from a different bacterial source that would not be targeted by her current antibiotic. Sam remains in great care and they are watching her close. She is resting today and right now, no other procedures are planned for today. Thank you all and please continue to send all the good vibes this way.
5:10 PM Sam had a restful day. She slept most of the day but was awake and active this afternoon for a bit. During that time she did smile and those smiles appeared to be in response to our conversation. They are continuing to watch her closely with tegard to the fluid now on the left side. The decision to drain or not drain this space is complex. To drain would mean Sam would then have 3 drains in her brain, increasing the potential risk for infection as well as bleeding complications (remember Sam remains on blood thinners to protect her stents) . As long as her neuro exams are stable and it does not appear to be putting too much pressure on the left brain they will continue to monitor it. Her pulse and blood pressure have remained adequate today with only minor fluctuation. Sam has been off the ventilator (breathing machine) all day and has done well with just oxygen into her trach. She will have another scan in the morning assuming no issues through tonight. Thank you all so very much for the continued love and support.
5/6/22
2:40 PM No big updates today. Sam remains stable. She will have an angiogram at 3:00 for her routine evaluation of vasospasms. Low key day for her otherwise. Please contine to send the positivity this way! Thank you all.
6:00 PM Sam's angiogram went well. She is still having vasospasms which we hope stop soon. Her midline shift has improved ! At its greatest this was 12.8 mm and it is down to 5 mm now. She has otherwise had a decent day . Thank you all for the continued support and love!
5/5/22
09:00 AM Sam had a good night , uneventful. There are no plans today for any procedures or additional scans- they are hoping for another restful day today.
10:45 AM Sam went down for another angiogram, no change in neuro status they just prefer these over multiple scans and it gives them a more accurate representation of whats going on in her brain. Trapper got to meet with the Doctor that will be overseeing Sam's care once she is moved out of the ICU to rehab. She will go to two separate rehab hospitals, with the final destination goal being Craig Rehab hospital. "Craig Hospital is a world -renowned, premier center for specialty rehabilitation and research for people with spinal injury and brain injury." Trapper felt very good about this conversation and really liked this Doctor. The staff has said we should shift our own evaluations of Sam to day to day (maybe even week to week) instead of hour to hour. She is considered stable medically right now .
Sam did track Trapper with her eyes all the way across the bed as he walked from her right side to her left which she has not done yet and this is an exciting accomplishment. Thank you all for your continued love and support- please keep sending your strength, prayers, kind thoughts and good energy this way.
5/4/22
2:07PM There are no major updates at this time. Sam's neuro exams remain unchanged. There have been no big events today. please contine to send lots of love this way! Thank you all.
5:16 PM Sam has had a steady day, no extra imaging today, no procedures. Her swelling overall has improved and everything, for now is stable. Plan is for a restful evening. Thank you all for the continued support and love.
7:00 PM No big updates , they plan to continue working to wean Sam off the ventilator and they will be a bit more aggressive tomorrow with the devices she us using to help with this. Please continue to send all your positive energy, prayers, vibes etc. this way.
5/3/22
06:00 PM. I am so incredibly sorry for the delay in updates today. I had technical difficulties which I wasn't able to address until after work.
Sam had a more or less quiet morning. Neuro exams have been unchanged. She is active on her right side (moving her arm and leg often) but not purposeful (not following commands when asked). She did have an angiogram around 9:00 AM. Trapper was waiting on update from the IR doctor on this to see what they saw. Her midline shift (the displacement of brain tissue across the center line of the brain) has increased again. They saw some subdural fluid build up that was increasing her intracranial pressure and potentially worsening this shift and so a procedure was done at the bedside to place a drain to help decrease this. She will go for CT some time this evening to reassess. We have been worried about her neuro exams in that she hasn't been as consistantly purposeful. Her team of caretakers continue to reassure that with the injuries she has sustained it may be too early to see a lot of what we are hoping for. They remain confident at this time in her cognitive return. The increase in the shift and increased pressure is also concerning but we have been told this alone does not always weigh on outcomes. If they can keep the intracranial pressure well controlled the shift isn't always concerning in these situations. Sam continues to to need all your positive thoughts, love, energy and prayers. Thank you all very much for the continued support.
5/2/22
07:21 AM Sam had an uneventful night last night. They are planning on doing a tracheostomy between 9 and 11 AM this morning. Trapper is taking Jaiden to school this morning so will talk to doctors once he gets back to hospital.
09:47 AM Sam will be going down soon for tracheostomy, it sounds like they will also be putting in a feeding tube (PEG- percutaneous endoscopic gastostomy tube)- this is where they place a flexible tube through the abdominal wall into the stomach. Sam has been fed up to this point, through a tube that was in her nose and down into her stomach and then also in her mouth and down to her stomach. This will make her more comfortable along with the tracheostomy, and will allow her to feel some freedom on her face with less tubes in this area.
12:34 PM Sam had a couple of events of significant bradycardia (once this AM and once during her surgeries - down to 18 beats per minute and 22 beats per minute). There was a code blue (cardiac arrest) called due to this but they did not have to resuscitate her and her Heart rate recovered on its own. Aside from this, her trach went well and her feeding tube went well. Trapper plans to discuss why this might be occurring moving forward, she is on a heart monitor at all times so this will be monitored closely. The plan for the day is to continue to rest and recover. Please continue to send all your love, thoughts, prayers and positive energy this way and thank you.
8:12 PM Sam had a decent afternoon. No new medical updates this evening. Hopeful for an uneventful, restful evening for her.
09:47 AM Sam will be going down soon for tracheostomy, it sounds like they will also be putting in a feeding tube (PEG- percutaneous endoscopic gastostomy tube)- this is where they place a flexible tube through the abdominal wall into the stomach. Sam has been fed up to this point, through a tube that was in her nose and down into her stomach and then also in her mouth and down to her stomach. This will make her more comfortable along with the tracheostomy, and will allow her to feel some freedom on her face with less tubes in this area.
12:34 PM Sam had a couple of events of significant bradycardia (once this AM and once during her surgeries - down to 18 beats per minute and 22 beats per minute). There was a code blue (cardiac arrest) called due to this but they did not have to resuscitate her and her Heart rate recovered on its own. Aside from this, her trach went well and her feeding tube went well. Trapper plans to discuss why this might be occurring moving forward, she is on a heart monitor at all times so this will be monitored closely. The plan for the day is to continue to rest and recover. Please continue to send all your love, thoughts, prayers and positive energy this way and thank you.
8:12 PM Sam had a decent afternoon. No new medical updates this evening. Hopeful for an uneventful, restful evening for her.
5/1/22
09:00 AM Sam had an uneventful night and rested well. Trapper and Jaiden got an obvious thumbs up this morning when the nurse asked Sam to give one. This is really great because we haven't seen a lot of purposeful movement the last couple days, if we have its not been as obvious. This morning both Trapper and Jaiden (and nursing) felt it was obvious and clear! They are still waiting on the care team to round to know what the plan is for today but we expect another restful day and potentially another angiogram. Thank you all so much for the postivity, love, energy, prayers. We are so grateful for you and we know Sam is soaking it up.
3:30 PM. Sam's neuro IR doctor decided to take Sam down for another angiogram. They started this procedure about an hour ago. Remeber this is the most accurate way for them to evaluate Sam's vasospasms and also allows them to spot treat the more severe ones. They have explained these procedures for her may be just part of her normal treatment for the next week or so as we near the end of this ciritial window (21 days from initial event).
06:26 PM Sam's angiogram went well. Her neuro IR doctor did feel that the overall swelling in her brain (mass effect) was slightly worse today but was not overly concerned about this right now and felt she was continuing to move in the right direction. Sam is on minimal sedation now and the plan is to continue to let her rest and not overstimulate her for the night. Tomorrow they will discuss the possibility of performing the tracheostomy sometime this week- will hopefully know more on this tomorrow. As always, thank you all for the continued support with positive thoughts, prayers, love and energy.
4/30/22
08:25 AM Sam had a restfull night. No big reports this morning, we hope for a good weekend of just resting. They haven't reported on her morning scans at this time and we don't know if she will go for another angiogram just yet (though this is to be expected potentially over the next few days to be needed daily). Thank you all for the continued love and support!
5:00 PM Sam has underwent a repeat CT scan because her neuro exams were changed (not as responsive as she had been). She had an Ultrasound which did show more vasospasms. She is getting a blood transfusion today, which is not abnormal after having a bleed like Sam did. Trapper is waiting on an update from her Neuro IR doctor to let us know if he is seeing anything unexpected or concerning on that CT. Its important to note that Sam's scans are not normal (given the nature of her initial injury and bleed) so they compare each scan to the other scans she has had, along with her physical exam. We will update once we hear from her care team more information.
5:50 PM The Neuro IR doctor spoke with Trapper, he believes Sam's neuro exam is unchanged and right now doesn't see anything on the CT scan that is concerning other then her vasospams which don't appear to be severe at the moment. Angiogram is on the table for tomorrow, but they will re-evaluate at that time. Sam is getting 1 unit of packed red blood cells this afternoon and she does have a new urinary tract infection which they will start her on antibiotics for. She has otherwise had a restful day. Please keep sending all the positive energy, love, prayers and thoughts this way!
4/29/22
09:00 AM Sam had a good night, she isn't following commands as consistantly, which they are not overly concerned about at this time given all that she has going on. They did feel that her responses on the left side (to painful stimulation) is slightly improved from yesterday. Her fevers have been well controlled with tylenol (they suspect the fever is from her brain injury and subsequent temperature disregulation- though it sounds like they did start some antibiotics for potential pneumonia to be safe), she is on minimal sedation (medication to help keep her sleepy) and we have been working on not overstimulating her so she can continue to rest. Her midline shift is stable and unchanged from yesterday. She is still having vasospasms so they may go in today for another angiogram to evaluate and potentially treat. They have told us to anticipate these frequently for the next few days potentially and they consider them low risk procedures for Sam at this time. Her tracheostomy is tentatively planned for Monday still though it is something they will continue to discuss. She is doing some spontaneous breathing trials today (where they let Sam initiate her own breath) they usually let her do this for about an hour before she gets too tired. Thank you all so much for your continued support and love.
11:56 AM They have decided to take Sam down for another angiogram, they just took her down for this to get started. Trapper had a very positive conversation with the neuro IR physician about Sam's current prognosis and they still feel that when all the swelling etc is improved Sam will have good cognitive function and communcation ability (though this may be weeks away before we start to see this). They do still feel her left side will be weak at best but it is hard to speak to the physical disability she may have at this point. Overall it was a very positive conversation. The plan for the weekend is again to not overstimulate Sam and to let her rest and recover. Please continue to send all your positive energy, love, prayers, and support this way.
8:21 PM Sam had a mostly unventful afternoon. Angiogram went well, she was able to rest this afternoon and we are hopeful for a nice, uneventful, restfull night tonight. We would like a lot of rest and recovery this weekend for her so we can continue taking baby steps forward. Thank you all so very much for all you are doing for this family, they are feeling the love and strength coming through- please keep it coming, it is more appreciated than you know.
4/28/22
9:07 AM Sam had a decent night. She had a long day yesterday with lots of stimulation and she is a bit worn out we think from all that. They would like to work on weaning her sedation and our plan is to not overstimulate her so this can happen. Her team of providers is still discussing when the tracheostomy will be done, so we don't have a difinitive plan on this yet. Her midline shift (a displacement of brain tissue across the center line of the brain) had grown a bit yesterday but is improved slightly today. Please continue to send all your positive energy, love, thoughts, prayers to Sam and her family. Thank you all for what you have done and continue to do for this family.
1:33 PM Sam is having more vasospasms, though it sounds like they may be in a different area of her brain now. These appeared to be fairly aggressive. They have decided to take her back down for angiogram to look closer at these areas and potentially treat them with injection directly to the area of constriction. Physical Therapy and Occupational Therapy did start working with Sam a bit today- which was good. Her neuro exams haven't been as active as yesterday which does not appear to be concerning to her care team in that patients can wax and wane daily. They have not seen any sigificant change that would worry them at this point. The plan is to take her to angiogram at 2:00pm. This was not planned this AM and so is a bit concerning but her team continues to monitor her very closely and address changes as they arise, she is in good hands and we are grateful for them. Thank you all for the continued support and love, we will update later this afternoon.
4:26 PM Sam is back from her angiogram. It went well and they do not see her aneurysm anymore. This means the second stent has done what it needed to do which is to cut the blood flow off from the aneurysm. This is great news. They explained that these angiograms to go in and look at vasospasms are not as risky as those done for stenting and we should consider them as a potentially normal method for monitoring her moving forward as needed. At this point, they are not overly concerned with her midline shift though they will continue to monitor it closely. Our goals for the rest of today and tomorrow are to let Sam rest and recover. The tracheostomy is not going to happen likely until Monday. They would like to just let her be for a couple days. We understand Sam has a very long road ahead and that these first few days/months will be similar to a terrible roller coaster- we've just got to continue to support this family through it and recognize she is in the best place possible and her team of providers is doing a great job. Please continue to send all your positive energy, love, prayers and thoughts this way. Thank you all very much.
4/27/22
10:47 AM Sam had a very active morning. She was looking at Trapper and continued to be very active on her right side. There was a cancellation so Sam has already been taken down for her procedure and they were told 3-4 hours for this. Will update when she is out! Thank you all!
1:57 PM Sam is out and it went very well! They were able to place a second stent within the first. The second stent is slightly longer and when they measured the blood flow after the stent was placed it showed that it was signifcantly slowed in the flow to the aneurysm. They feel very good about this overall and confident that this should resolve her aneurysm issues hopefully in the next few days (meaning they feel positive that blood should stop filling this area decreasing our risk for another rupture). She will be on two oral blood thinners right now (aspirin and plavix) and she will likely need these for at least 6 months- these medications assist with keeping the blood "slippery" to protect the stents. She is certainly not out of the woods as vasospasms are still an issue however, thus far, they feel the vasospasms do not appear to be affecting her cognitively as she continues to be more alert. The plan is to let her rest for the next few days before we move forward with the tracheostomy. Thank you all for the positive thoughts, vibes, love, energy, and prayers.
7:49 PM Sam is doing well tonight. We went in to see her tonight and she appeared to be looking at Trapper, we even thought maybe she had a tiny little smile when we made some jokes (we both saw it). We are hoping for a restful night for her tonight and continued improvement. We are all feeling hopeful this evening, understanding there are many obstacles that remain but we are going to enjoy her progress in this moment. Thank you all again for your continued love and support- keep it coming.
4/26/22
8:30 AM Sam had a very positive 7 am neuro check, she was opening her eyes and blinking. She continues to be active on right side with purposeful movement and still responding to painful stimulation and posturing on the left. She has been on EEG (Electroencephalography) which will likely be removed later today as they have not seen any concerning seizure activity since adjusting her medication. Her tracheostomy is planned for this afternoon. Thank you for the positive vibes and prayers- keep them coming!
10:45 AM Sam had a scan today and US which showed she is having fairly signficant vasospams now. They have decided that these are severe enough that they need to take her back in for another angiogram. The vasospams again, are concerning becuase the vessel is clamping down and result in decreased blood flow to that part of the brain, decreased blood flow means decreased oxygen. These are expected in this window (up to 21 days after initial event) but they try to minimize them and they are problematic for many reasons. They are not sure about the time right now of the angiogram, as they have to move other patients around to get Sam on the schedule. Her tracheostomy will either be later this afternoon (if the angriogram goes well) or maybe tomorrow depending on the time of the angiogram and when the other team can come to do the tracheostomy. This is a bit of a set back for us- please continue to send your positive vibes, energy, love and prayers to Sam and her family. Thank you all.
5:20 PM Sam finished her angiogram and they were able to treat the vasospams. However, her aneurysm is growing and they are very concerned for another potential rupture. A team of specialists met and discussed all the options for Sam moving forward. There are great risks with all. It was decided the best course of action right now is to go back in for another angiogram and attempt to place another stent kind of inside her current stent to try to create more of a barrier to the aneurysm. The next steps were explained to Trapper and family in detail and the impression was that this time around is slightly more problematic. In order to place the stent, Sam does need more blood thinners, if anything were to happen and she had another bleed they would not likely be able to stop it. We are again at a critical point in Sam's case where multiple specialists must weigh in on risks and benefits. This has been done and this procedure is planned for tomorrow around 12:00. We again need all the prayers, positive energy, good vibes, love, just all the things to be sent this way. Thank you all so very much.
4/25/22
10:36 AM (HAPPY BIRTHDAY JAIDEN!!!) Sam had a decent night. She is less responsive with her neuro check today though this is not unexpected to kind of have less active periods. Her scans have remained stable and everything right now is considered stable. No big updates this morning.
12:34 PM They met with the doctor and Sam will undergo tracheostomy tomorrow afternoon, she does continue to have periods where she is breathing on her own which is great. They continue to watch her very closely. No other big updates for now.
6:05 PM. Sam had a good day. Her last neuro exam was positive, there was intentional, purposeful, command following movement on the right side. Left is still primarily responding only to painful stimulation and posturing. Her fevers have been controlled today with tylenol. It was also pointed out that I hadn't fully explained her MRI results prior to this and I apologize for that. Essentially, the MRI was done to help understand further how much damage had been done and help identify long term expectations based on that damage. The MRI was not much different from her CT scans in the amount of damage visualized and it did show a small decrease (improvement) in her midline shift (a displacement of brain tissue across the center line of the brain). So, for now the MRI did not change the approach to Sam's care and helped answer some questions about what she should hopefully be able to recover cognitively. We are hoping for a restful night and Sam will proceed with the tracheostomy tomorrow assuming no hurdles pop up prior to that. Thank you all again and please continue to send your positivity, love, energy and prayers to Sam, Trapper and Jaiden! (Side note: Jaiden had a good couple of days celebrating her birthday- went to a movie, won a giant teddy bear at dave and busters with some friends, went swimming, and got to go shopping- we know its not all she wanted as she is missing her mom time but she is doing a tremendous job with all this and reported this evening that she had a "good" birthday)
4/24/22
8:40 AM Sam had another stable and uneventful night. No big changes thus far. Trapper was still waiting for Doctors to round when he updated me this morning. It sounds like they didn't try to aggressively wake her last night and she had a restful night.
10:05 AM Trapper and family had a long, detailed conversation with the Doctor today. They discussed Sam's progress thus far, some expected outcomes and the length of recovery. Sam is progressing somewhat as expected, the doctor today was very hopeful about Sam's recovery. He was clear that she will not be the way she was before (100%), she may not regain the function of the left side of her body (it is too early to say this) but they felt based on where her brain damage occurred her cognition should recover. The brain is complex and many things factor into these types of injuries and the recovery. Sam is also not out of the woods yet with regard to possible complications moving forward.
Most of Sam's brain damage has occurred on the right side of her brain- this explains why the left side of her body is not working normally (the right side of the brain controls left motor movement). Other potential issues a person may experience when the right brain is damaged include (photo below for visual assistance): attention issues (difficulty focusing on tasks), left neglect (problems attending to things on the left side), Visual perception deficits (which may be worse since Sam's aneurysm was very close to her eye), Reasoning and problem solving, memory, organization (can come across as difficulty explaining a story), Social commmunication (trouble with non verbal cues, jokes etc). - I will note these are examples Im providing to help explain where her damage is- the doctor who spoke with Trapper and family today focused on Sams abilities - they expect her cognition, ability to speak etc will be intact and she may have more benefit with these areas because she is right handed. The two hemispheres of the brain work together but there is some thought that right handed people are left brain dominant- meaning maybe more skills are stored there. It is too early to know what she will do, but it was a very positive conversation in that they do beleive if we have no more set backs Sam will survive and have some quality of life.
In preparation for the long recovery they have plans to proceed with Tracheostomy (surgical incision in the neck to place her breathing tube directly into her trachea), as well as a permanent feeding tube directly into her stomach (both of these are currently in her mouth which is not a safe longterm option as the tubes contribute to oral sores and skin breakdown- they are also not comfortable). The dates have not been set yet for these but the tracheostomy is tentatively planned for Tuesday.
While we are understanding this is going to be a long road, that we are not out of the critical period for Sam yet- everyone has breathed a little lighter today knowing that we are one step closer to having our girl back. One step closer to hearing that beautiful laugh and seeing that bear hug of a smile. It was an uplifting conversation and we can all celebrate the small step forward. Please continue to send your positivity, love, energy and prayers to this family! Thank you all so very much.
2:35 PM Sam is having more vasospasms, she was taken for CTA to further evaluate. The vasospams are problematic, not necessarily unexpected but we don't like them. They have discussed doing another angiogram to try to go in and inject some of these areas with medication directly to try to minimize the vasoconstriction (she remains on IV medication to try to decrease these)- explained above in further detail but when she has a vasospams the vessel is clamping down and decreasing blood flow to that area, which then decreases oxygen to that area. At this time they do not believe the benefit of the angiogram outweigh the risk so for now they will continue to monitor. She will likely undergo multiple repeat CTA's over the next few weeks to continue to follow things closely and each time her care team with weigh the risks and benefits to Sam and choose what is best for her at that time. For today, no angiogram is planned as of yet. Thank you!
9:39 PM ( I apologize for the late update- this was actually started at 7 pm but I had some techinical difficulties with the website) Sam has undergone more scans today which appear stable/unchanged. They are concerned she may be having seizures (she is on medication to help prevent seizures right now), they have hooked her up to an EEG (electroencephalography- a test that detects abnormalities in the brain waves and/or the electrical activity ) to help evaluate this further. Sam seemed to have more active neuro checks mixed with some disheartening ones which prompted the scans. Overall Trapper felt good about the day in that her scans appear stable thus far.
4/23/22
8:54 AM Sam had a good night in that it was uneventful. Her neuro exams have remained unchanged and consistent. Her intracranial pressure has been good and she did have some periods where she was over breathing the ventilater. This is a good sign in that the part of her brain that tells her to breath seems to be working. No other big updates at this time- we are still waiting on the neuro team to discuss the results of the MRI.
2:51 PM Sam did have some increased vasospasms last night which were a bit more aggressive then they had been. They have done some more CT scans today to look at these. Despite these, they feel her neuro exam has remained stable. There is some discussion about taking her back in for angiogram to locate these vasospasms and inject them directly with medication to help lessen thier severity. This is not without risk to Sam so they continue to heavily weigh the risks vs benefits of each procedure. For now, they are going to continue to do scans as needed (which sounds like it may be more frequent over the next few days). They have been working today with her ventilator to let her breath on her own for periods of time (this doesn't mean the tube is removed), Sam remains intubated - they just allow her body to initiate its own breath by adjusting the machine, when she starts to get tired (not take as deep of breath or isn't initiating them as frequently), then they allow her to rest by adjusting the settings so that the machine takes over doing the work. We understand we are looking for baby steps forward and ideally no setbacks. Thank you for the continued prayers, love and positivity.
7:42 PM Guys, I recieved a video of one of Sams more recent neuro exams. We don't want to get too excited but there were some, what appeared to be, significant strides today. With her sedation decreased she seemed to try to open her eyes to voice, and she was trying to give a thumbs up with her right hand when asked. This is a big change in that she had not been opening her eyes at all prior to this and for many days her movement had been only spontaneous but not obviously to command. It was the most beautiful thing. No one wants to get ahead of themselves, Sam remains in critical condition but this is something I think everyone can get excited about. Please continue to send all your prayers, positive thoughts and love this way. We don't expect any more updates this evening but will be back tomorrow to report on her night and ongoing progress. Thank you all so much!
4/22/22
10:30 AM Sam had an uneventful night for the most part. Her neuro exams remained unchanged. Trapper didn't rest much. There are not many changes planned for today, with regard to her plan of care. With the exception of doing an MRI of her brain today. They are still working diligently to manage her blood pressure. Intracranial pressure, sodium levels, and temperature. These things continue to require minor adjustments somewhat frequently. Please continue to send your prayers and positive thoughts and thank you!
3:00 PM. Sam has had a decent day with no big changes. Her MRI is scheduled for anytime after 3 PM and we expect to have those results later this evening. Sam has had multiple brain scans but up to now they have been CT scans. An MRI is a more specific way to image Sam's brain (Magnetic Resonance Imaging to produce a high quality two or three demensional image of the brain and brainstem). This type of image can better help them evaluate damage from injury or stroke, swelling, problems with blood vessels and the difference between those should more then one issue exist. We will update once this is read with whatever information the doctor provides at that time and if it changes Sam's current plan of care at all. Thank you all again for the continued prayers and support, they are needed and greatly appreciated. Some of Trapper and Sam's friends have also organized a Go Fund Me, the link has been added to this page under the category "Additional Resources".
8:34 PM There hasn't been an update on Sam's MRI at this point. It sounds like her team of specialists have been busy with other urgent cases this evening. Should we get an update before morning we will post it here. Wanted to get something out for those waiting. Suspect there will be a more detailed update in AM after physician rounds occur in ICU, which is typically between 7 and 9 AM. Thank you all again so very much for the continued support and love.
4/21/22
5:20 AM Sam had a mostly uneventful evening. She has already had her CTA this AM (we expect results later on this morning). After her 11 PM neuro check last night she did start to move her left arm, not with purpose, but spontaneously. They call it posturing, but any movement at this point is a positive change. If you remembe she was not moving the left arm at all after our initial set back status post stent/coil and vasospasm complication, she then did start moving it away from pain yesterday morning and now last night maybe has made another baby step in moving it a bit more. She had a slight fever yesterday, which slightly increased last night, this can be normal with any Brain issues as it impacts our temperature regulation but to be safe, they are checking her for possible sources of infection (blood cultures and urine cultures). Plan as of now is to proceed with angiogram around 8:00 AM. Again, thank you all for your continued support, prayers, and love. Trapper was able to get a little bit of rest last night and continues to be a pillar for Jaiden and Sam- he is very appreciative of all the love.
09:32 AM Sam is back in her room. They did not find another bleed so whatever other area may have been bleeding (contributing to her brain swelling) has healed itself. Her aneurysm is still pooling with blood which is not necessarily unexpected. She is on blood thinners to protect the stent and this makes it harder for the blood to clot in the coiled aneurysm. They report this can take weeks or months sometimes. This does mean there is still a risk for it to rupture again. She continues to have some midline shift (displacement of brain tissue across the center line of the brain) which is minimally increased from her last scan. They are not overly concerned about this right now and they continue to optimize her medical management (adjust medications to keep blood pressure, pulse, intracranial pressure etc.) and monitor everything very closely to help create the best possible outcome for Sam. They did see some vasospasm and did inject these areas with medication to help decrease them. The doctor was positive today with Sam progress thus far. The hurdles she is facing are expected. We hope for another quiet, restful day for Sam. They will likely go in multiple times for repeat angiograms moving forward to continue to monitor everything closely.
5:00 PM - Sam has had a good day. Her neuro exams have remained stable throughout the day (She gets these hourly)- no big improvements but no setbacks. She does still have a fever so has been placed on a cooling blanket to help keep her temperature down. This, again can be a normal issue as her temperature regulation is impacted by all that is going on with her brain. No big plans for tomorrow at this time, we just stay the course and continue to send all our positive vibes to Sam, Trapper and Jaiden.
4/20/22
8:00 AM. Sam had a mostly uneventful night. The whole neuro team came in and put her through their series of testing. Her neuro exam is not significantly changed. She is spontaneously moving her right side, she is not doing as well following commands this morning (they might say "Sam wiggle your toes" and today she didn't do this). Her left arm did respond to painful stimulation today, just once (meaning she looked like she tried to pull her arm away when they induced pain) which is a slight difference from yesterday. Her right eye has been swollen shut due to the significant amount of swelling she has on that side of her head, they were able to visualize her pupil today and it did react to the light (the pupil got smaller when she shined the light on it) which is just a small way to see that the part of her brain that helps regulate the intensity of light entering the eye is still responsive. They have explained to Trapper that this will be a slow process and we should expect to take a few tiny steps forward and that then there may be a set back. We are just hoping at this point to keep the set backs to a minimum. They are plannng to proceed with angiogram (procedure to go through the femoral artery to take another look at her blood vessels in the brain) tomorrow morning. Sam remains in critical condition, she is intubated (has a tube that goes through her mouth, down her trachea to help her breath)- its important to note this is required due to the heavy sedation used to allow her brain time to rest and also necessary until they can fully evaluate her cognition (she is too sleepy even when sedation is weaned)- it will continue until they feel she can safely protect her own airway. Should this be required for more then 10-14 days they may need to discuss a tracheostomy (placing an opening surgically through the neck into the trachea), this can be a common intervention during this process and does not mean Sam would need this forever. They have also explained to Trapper that the recovery for injuries like this can be up to one year, so we understand this will be a marathon for her.
5:00 PM. Sam has remained stable today with no significant changes thus far. She is resting. Plan for tomorrow is to have a CTA at 5:00 AM and then go in for her angiogram around 7:30 or 8:00 AM. Will update in AM assuming no big changes through the night. Thank you all for the continued thoughts and prayers- they are very much appreciated and needed.
4/19/22
7:54 am Sam had a very busy night. She was stable until about 1:00 AM. At this time nursing noted a change in her neurological exam (prior to this, Sam was moving all four extremities and they thought even some purposeful (to command) movement with the left arm). At 1:00 am she stopped moving that arm or responding to even deep painful stimulation. She was taken for urgent imaging. A repeat head CT was done, which was mostly stable in appearance- with a mild midline shift noted (a displacement of brain tissue across the center line of the brain) indicating some increased brain swelling. She also underwent a CTA and CT perfusion scan. The CT perfusion showed some vasospasm. Vasospasms can be common after Subarachnoid hemorrhage and is a complication they were watching for- this is believed to occur because the blood irritates the brain. When there is vasospasm the vessels are clamping down decreasing blood flow to that part of the brain, which means that there is then less oxygen to that part of the brain. Sometimes they can take a person back to surgery and treat these locally by injecting the specific areas with specific medication (its important to note here that Sam is already on medication to attempt to decrease these). The neurosurgeon will see Sam this morning with the other specialists on her case and they will decide what is most appropriate moving forward.
There are risks in going back in to surgery so this is not an easy decision for her care team. Sam's case continues to be complicated by her anatomy (getting to the areas of concern was difficult yesterday), they are also still dealing with a combination of potential bleeding issues and clotting issues (meaning some parts appear to be bleeding, increasing her intracranial pressure and other parts appear to be clotting)- vasospasms can also increase clotting (imagine, in that time where the spasm is occurring, the blood has more opportunity to pool and clot (like a traffic jam). Sam is on blood thinners to attempt to help mitigate some of these complications.
They have also started some different IV fluids to help increase the pressure within the vessels (try to keep them open to combat the vasospasm). She is on antiseizure medication to help protect her from seizures and they have started to give her nutrition with a tube in her nose which goes into her stomach.
Sam's sodium levels are elevated and this also increases complications, though is not completely unexpected- it is one more thing that has to be treated very gently (there are dangers in lowering the sodium to quickly). This affects what her body does with fluid (worsens her overall edema including in the cerebral space). Sam had the craniectomy (the removal of part of her skull ), and she has an internal ventral drain which is draining cerebral spinal fluid to help decrease pressure in the brain.
Trapper did not sleep last night, Sam is in the best hands she could be in and they are taking very good care of her. Please continue to send all your positive thoughts and prayers to Sam, Trapper, Jaiden, and family. I will update as doctors come today and decisions are made moving forward- I apologize for the lengthy post.
10:34 am. Trapper has spoken with the mutliple specialists on her case. At this time, they are going to optimize medical management (medications and less invasive measures). They would like to avoid going back in to surgery if possible. Sam will have multiple scans throughout the day to continue monitoring everything. The goal for today is to keep her where she is with no worsening of symptoms.
Even when things go smoothly in these situations it is expected that patients will require long term ICU stay and long term rehab as they recover. As we navigate through each day we know many people are wanting to help Trapper, Sam, Jaiden and family. We will attempt to help everyone find ways to be helpful to them as things progress. Thank you all so much for your continued support and love- we appreciate you more than you know.
1:50 PM. Wanted to just let everyone know Sam has stayed fairly stable since this morning. She is not able to move her left side, but she does seem to feel the painful stimulation on that side of her body. During one of her neuro exams, Sam obviously did not like them shining a light in her eyes, she used her right arm to try to move the nurse away from her face- she did not open her eyes but the movement was strong and purposeful.
Debbie would like everyone to know that they appreciate the prayers and positive thoughts so much, please keep them coming- Sam needs it all.
6:07 PM- Sam remains in critical condition however, she has been stable throughout today. They have had a little trouble getting her sodium where they want it and they are checking this and adjusting IV fluids every 3 hours to try to keep it at goal range. She has an arterial line (a monitor placed within the artery) to monitor her blood pressure more closely. The neurosurgeon stopped by and spoke with Trapper, Debbie and Taylor and explained that doing the craniectomy gave her brain more room to swell and he felt good about the amount of swelling she has right now in that it is not totally unexpected. He felt last night was certainly a set back but not an unexpected set back given all the things she is facing. Her intracranial pressure has stayed where it needs to be today and they continue to adjust her treatment to keep this where it needs to be. No change in the management plan at this point. They are hoping for another good day of rest tomorrow and would like to perform another angiogram (procedure to go through the femoral artery to take another look at her blood vessels within the brain) on Thursday.
4/18/22
12:13PM, Sam is resting and building strength for her big surgery at 1PM. Prayers and Positivety Please.
2:00 pm- Sam is heading into surgery now. They plan to enter through her femoral artery (Main artery located at the top of the thigh), they will follow this all the way to the location of her aneurysm and attempt to place a stent (example pictured below)- Sam will have a specific stent "Medtronic Pipeline Flex with Sheild Technology". Trapper wants everyone to know she is very strong but they need all the prayers and positive energy you have. The doctors estmated time for this procedure is 3 hours.
5:45 PM- Sam is out of surgery. They were able to successfully reach the aneurysm! Post surgery potential complications which they will be watching for over the next 3-5 days include; Vasospasm (a sudden narrowing of the artery that can occur and lead to decreased blood flow to the brain), blood clotting causing ischemic stroke (occlusion of artery supplying oxygen rich blood to area). Sam wil be on blood thinners which are required to protect the stent that has been placed (our bodies recognize the stent as something that shouldn't be there, because of that the blood will attack this area and form a clot). This does increase her risk for potential bleeding complications as well but is necessary to protect the progress we have made. Please continue to send positive thoughts and prayers -the next few days are critical for our girl! Trapper, J, Debbie and family are so grateful for the support please continue to send your encouraging thoughts and prayers!
There have been some questions regarding Sam's neurological status. We do not expect them to really decrease her sedation enough to fully evaluate this for the next few days (this doesn't mean they are not monitoring it but they will not fully awaken her anytime soon). The focus will be brain rest, keeping her intracranial pressure from increasing, and minimal stimulation while she recovers. We don't antcipate any big updates on this for the next few days.
4/17/22
This was a difficult day as the doctors explained to Trapper and Jaiden that Sam's aneurysm is rare (Blister aneurysm), difficult to get to (Anterior Circulation Intracranial Aneurysm), and is also an odd shape. This means that Sam's care requires a multifaceted approach with multiple specialists including vascular and neurosurgery. Typically, aneurysms are treated with microsurgical clipping, endovascular coiling, or artery occlusion and bypass. In Sam's case the odd shape and location of her aneurysm complicate the treatment plan. She will undergo a possible stenting/bypass approach on 4/18 as long as she doesn't have more bleeding complications. Today she also underwent a craniectomy (the removal of a portion of the skull in order to relieve pressure on the underlying brain) with clot evacuation. This surgery was over three hours long and at its end, the surgeons reported to Trapper and family that she did very well. Sam remains in critical condition tonight and heavily sedated to allow her brain to rest. She and her family need all the possible positive thoughts, and prayers you can send them.
4/16/22
Sam suffered a ruptured brain aneurysm with subsequent subarachnoid hemorrhage (bleeding into the subarachnoid space which is the space between the brain and membranes that cover the brain) in the evening of 4/16/22. She was life flighted to St. Anthony Hospital in Lakewood, Colorado. This facility is a level one trauma center and comprehensive stroke center. Sam required emergent surgery to help try to control bleeding and decrease intracranial pressure in the evening of 4/16. She required an additional urgent surgery in the early morning hours of 4/17. Sam's neuro exam in the morning of 4/17 was positive in that she was moving all four extremeties.
Image borrowed from Constant Therapy
Image of Medtronic Pipeline Flex with Shield Technology- borrowed from Neuronews International.
Image borrowed from New England Journal of Medicine.
ADDITIONAL RESOURCES