Working for a living

Alistair had another busy day. He had so many people in his room off and on all day long. When a doctor rounds on him from a different department, they bring with them residents, fellows, medical students, etc. So it is always an entourage, hardly a single person. Alistair has really begun to take notice of the groups and takes it all in. If the conversation can't or shouldn't include Alistair, we have asked people to take it outside his room as he is clearly listening! If it can include him, we ask people to speak TO Alistair and not talk about him in front of him. He may not be able to participate in the conversation, but he sure can be treated like he can!

He had a great sleeping night again last night. He just needs to sleep and sleep and sleep. The more quality REM sleep he can get, the better. We took our time to get in this morning as we wanted to make sure he got to sleep in. When we arrived, he was getting his daily morning routine going. He was about to brush his teeth, so I jumped in to help. He began by himself and then I helped him to finish. Then we got him back into bed and I helped him get dressed for the day. He asked me to watch television and I asked him if he wanted a show or a movie. He told me show. I am sure he was trying to tell me which show, but I have yet to master lip reading (none of us have) and it makes it very frustrating - mostly for Alistair. Once he got settled into his show, then we had the revolving door of specialists and having to turn off the TV to get his undivided attention. Some examined him, others worked with him.

Alistair had a visit from Baxter, the pet therapist, this evening. Though he wouldn't completely open his eyes and wake-up, Alistair seems to enjoy having the canine company and reached out to hold on to Baxter's paw. 

At the same time this was all happening, my amazing husband was attempting to move heaven and earth, along with his awesome friends and co-workers to try to get Alistair transferred to Seattle Children's. Thanks to Chris Martin and Brenda Nelson at Airlift Northwest, we were going to have a fight home tomorrow. That is not going to workout due to some minor complications. But there is another option to hop on an airplane returning from New York, called a dead leg as there is no planned patient. This is all dependent on timing on all ends. Not only were Airlift Northwest, UMP/Regence Blue Shield and our friends in high places helpful and willing to move quickly, but the teams we have been dealing with at Mayo were SO helpful in getting things rolling in a quick manner. They truly care about Alistair and have his best interest at heart. Everyone is on the same page that Alistair would have the most successful rehab experience at Seattle Children's where he is near his home and where his friends and family can come visit him and motivate him to get better.

This all was postponed this evening when we saw Dr. Dearani. Alistair's incision has a small, 1/4" spot where it isn't healing and is weeping. It could be nothing, but he doesn't feel comfortable discharging Alistair to Seattle without making sure it is indeed nothing. If it is something, he wants to take care of it and get it heading in the right direction before he is transferred. So tomorrow he will be re-intubated and slightly medicated to go to the OR so Dr. Dearani can get a good look at his incision. He thinks it needs to be cleaned out, reclosed and have another woundvac placed. Since Alistair is going to be sedated and intubated, they made the decision to go ahead with the MRI and collect all the pieces to the puzzle so we have a clear picture of what is going on.

At this point, it is just par for the course. Nothing can be easy. I don't mean that in a "whoa is me" kind of way, but more of a general fact. We just can't seem to have anything be face value, straight forward or routine. At this point I feel like a skeptic, waiting for the other shoe to drop. I am not losing my optimistic outlook, but it so tiring to constantly readjust my expectations and to find the silver lining. But I am still finding the silver lining...and that is a good thing.

Revolving Doors

Alistair's nurse, who was new to us, remarked at one point today how busy he is. There was always someone in his room working with him. We have Occupation Therapists, Physical Therapists, Respiratory Therapists, a Massage Therapist, Neurology, Cardiology, and Childlife Specialists...not to mention the 5 of us, Gillian and today Gillian's cousin Alexis and her Dad, Pat, came to visit today. No wonder the kid passed out around 7 and didn't really seem to care we left for dinner!

Alistair slept so well last night. Seth stayed with him and was surprised at how much sleep he was able to get. They started Gabapentin last night that was meant to calm his tremors to be able relax and sleep soundly. It worked like a charm. He didn't get up until almost 9am this morning. He has a long road to go to catch up on his sleep, but it was so nice for him to get some sleep. Once he was up and at em, therapy became the theme of the day. Along the way he had a peripheral IV put in so he could get rid of his central line. He had his last chest tube pulled this morning and then eventually his central line was pulled. So now the only thing he has attached to him is his NG tube and his nasal cannula. But both of those items can be taken off as needed to allow him to get out of bed and do other things.

Alistair did more work on the tilt board today, which gets him to a standing position. He didn't get all the way to up and down standing, but fairly close. Tomorrow OT is going to do a swallow test to see how he does eating. They are concerned with him aspirating, which is a valid concern! The only time he has coughed after intake is with a straw. But they decided to play it safe until he was less sleepy and more alert. Popsicles are okay as it is such a slow method, but hopefully tomorrow will allow him to have pudding, ice cream, etc. Once he gets the okay to eat things as tolerated, sky's the limit. We just need to get him calories and fill him up. Between getting him more sleep and getting him more calories, we should really start to see some improvements! 

We went outside again today. We ventured to the Peace Garden as we could see the helicopters come and go from the hospital roof. Alistair really seemed to light up seeing them fly over. Pat and Alexis joined us and Alistair watched Alexis and Gillian run around together.

We decided to go back to the house tonight instead of one of us staying. Initially it was so we could eat together. But then we decided it would be beneficial to Alistair to be able to have a quiet night to sleep without a lot of distraction. I do feel a little bad that one of us is not there, but we need to have a mental break too. I mentioned to some friends tonight that I really enjoyed being inlcuded on a message strain about neighborhood chatter about a house going up for rent. It was nice to talk about and think about something ELSE. Days and dates don't matter, they all go together and tomorrow is a day and nothing more than that. All our discussions revolve around medical discussions and things pertaining to Mayo, Alistair and being HERE. 

Tomorrow we were supposed to fly home. I wish we were. It is hard to be away from home for so long, especially when you aren't having any fun. I was telling Gillian this morning that it was hot at home and our house was probably hot and stuffy and I really wished we were home to complain about how hot our house was! I she thinks I am a little off my rocker!

Busy Day!

After not getting much sleep, I figured not a lot would be accomplished, by Alistair or me today! Seth, my Dad and Gillian came to relieve me this morning. I came home, wrote the blog post, called Alaska Airlines to cancel our flights on Tuesday and then took a shower. Seth had strongly encouraged me to take an hour or so nap and I fully intended to do that, but then OT/PT were coming, Neurology was coming for an exam, Seth and I were taking Gillian out for lunch and ice cream. So a nap escaped me, but I did pretty well running on fumes!

                               

Alistair also had a pretty great day despite his restless night. He had a couple of dangles off the side of his bed with minimal support. Troy and Seth picked him up and set him on a portable commode to try to use the toilet. He didn't go, but sat up quite well on his own. He had a great workout with OT this morning working on looking at magazines, turning pages, stretching, etc. Afterward Papa helped him with a Popsicle. When we got back from lunch, PT came and put him in a standing device. We didn't get all the way to standing straight up and down as they want him to have more supportive shoes...I only brought easy shoes to put on as I figured he wouldn't want to bend over and tie then after his surgery. So tomorrow morning I will buy him some tennis shoes and hopefully they can get him to fully standing with support. While he was in his slight standing position, he worked with some balls and tried throwing them to me or Gillian. He took a little rest after his session with them and then we got him ready for going outside.

                                       

Ranae, Gabe and Sully came to visit and met us in the courtyard by the fountain that Alistair was adamant about visiting after he had his surgery. So after 40 minutes of getting him transferred into a chair and moving all his stuff over, we headed out to greet the Sandholms. They brought him some books to read as well as a box of Megablocks (Duplo Blocks). Ranae thought he would like to build, but legos would be too small right now. Brilliant idea! We opened them and he, with assistance, put about 5-6 8-dot bricks on a platform. Then was done and one by one took the bricks off and handed them to me. Then Sully held up the box and Alistair picked up each block and put them away in the box. The whole time he was experiencing tremors, but he was determined!

Getting him outside was great for him. We spent almost 2 hours in the courtyard and I think he really enjoyed the fresh air, the sounds, the breeze and watching other people. It was hard for some of us to see Alistair next to Sully, comparing him to how he should be. I also was bothered by the way people looked at Alistair as we rolled by. But overall, the experience was positive and hopefully will be and added bonus to give him a good night's sleep tonight.

When we got back to the to the room, I asked him if he wanted a Popsicle. He told me he would like a Popsicle (mouthing the 3 syllable word) and then I asked him if Gillian could have one too and he said yes. So they had Popsicles together. When he was done, he had a breathing treatment that helps loosen up the junk in his lungs. Seth asked him if he would like him to stay with him tonight and he said yes. Neurology has ordered drug for Alistair to start taking tonight that will hopefully calm his tremors to allow him to be able to sleep better. It is not a sedative or muscle relaxer, it just calms him body. They also prescribed Melatonin per the RN's discretion. Hopefully those coupled with the busy day, lack of sleep last night and the fresh air will provide Alistair with some restorative sleep tonight. So Gillian, Dad and I headed back to the house and had dinner.

I am becoming more confident that Alistair will overcome this. I see him in there and he is working so hard to get out. I still have those other feelings that keep trying to take over. I allow myself a little bit of feeling these feelings, but then I take them over with positive thinking and outlook. I believe in Alistair and I know if nothing else that we have taught him how to get back up after being knocked down and quitting isn't an option. That being said, all of this really, really sucks and honestly, it's not fair! I wouldn't wish this on anyone and I feel like we have already been handed so much diversity with Alistair in his lifetime. I do believe you are never given more than you can handle and I suppose we were chosen to have Alistair because we can handle this. But I think after all this is said and done, we are good on handling stuff and the rest of his life should be a cake walk. 

I want to go with you home...

Last night Alistair spoke this phrase to me. It broke my heart because I know he is in there and is struggling with everything going on. I told him we couldn't go home yet, but if he wanted me to stay with him I would. He said yes, so I did. Thus why there was no blog post last night!

Alistair had a pretty great day. When he woke up after sleeping for about 5 hours and was up for the day, he told his nurse he wanted to watch TV. When we got in he was alert and interactive. He told me he needed to go to the bathroom. So his nurse, who is a guy, and Seth assisted him with the bed urinal and he went. He did this again later in the day. His night nurse, who is a woman, and I had less luck with him using it. I think part of it is he is tired and possibly part of it was we aren't dudes! They pulled his foley catheter a few days ago because they didn't want to cause an infection, but he isn't always able to say when he needs to go, so they have him in some briefs just to be safe.

Alistair had a couple of popscicles yesterday. This was initiated because Troy, our nurse, gave one to Gillian. We decided to let Alistair try one. Seth helped him hold it and he seemed to enjoy it. I think something with flavor was good and probably something cold was also good. He had some more Vitamin Water too. We will bring in more today as he has run out. Anything that tastes good to him!

As I mentioned, Gillian came down to spend the night with us. Grandpa and Grandma went and got her for us. It was so good to see her, but yet sad for me for a couple of reasons. I didn't realize how much I missed her (which the decision to stay with Alistair last night made me feel guilty that I wasn't spending time with her). I also had kind of forgotten our family dynamic and walking with her to the hospital reminded me of it and made me sad that it will be different for a while. We did a lot to prepare her to see Alistair. We explained that he sleeps a lot, he doesn't move too much yet and he doesn't speak a lot. We also told her he had some tubes attached to him. She didn't seem to be too shocked by him, but kept asking Seth why he couldn't talk or get out of bed. When we were walking to the car afterward, she told me, "I feel really bad for Alistair!" I don't think she completely understands all that is going on, but we chatted this morning and she seems to understand he needs help and it is going to take a while.

Last night before bed he had another chance to sit on the side of the bed and dangle. He sat there for about 15-20 minutes minorly assisted and held his head up by himself almost the entire time. His strength is beginning to come back slowly. He has started to tremor, mostly at night, through his arms. Occasionally it turns into a full body shake and he looks at me and is obviously concerned. Neuro, through the continuous EEG, saw these the previous night and said there is no sign of seizure activity and this is all muscle related. They are still wanting to do an MRI tomorrow and we are for it if we can do it without sedation as we feel this would be a big set back for him.

I am really happy about all this progress and am getting on board with the he just needs time and it will all come back. But I am really angry that we have to celebrate that the can hold his head up and ask to pee in a plastic container in bed. We should have been out of he hospital by now and heading home in 2 days. I know there could have been set backs and things don't always go according to plans, but I never would have thought we would be dealing with these set backs. I am really trying not to think about our family with these new dynamics and thinking of it as temporary situation. I can't help but look at all our photos of Alistair and his brights eyes and personality and wonder if we will see it again. I am putting in all my chips with anyone listening that we can have our son, brother, grandson, nephew and friend back to himself with time.    

My Glass was slightly Refilled Today

Alistair and his nurse, Jessica, who is the flight nurse. She was back on stand-by today and in her flight suit! This was our last day with her and we are supered bummed, including her!

We called in this morning and Alistair didn't sleep much last night. He got about 2 hours of solid sleep. So we had another early morning to head in and get working with him. It was very perplexing that he didn't sleep since he had such an active day yesterday. He was awake most of the day yesterday and worked quite a lot, so we thought for sure he would sleep. We got in and he was awake, of course. But he also seemed to have a fixed gaze to the right; in that his eyes were looking severely to the right and didn't seem to be able to look elsewhere. We were trying to get him to track, but it was challenging. However, when rounds started and they were standing outside his room, he looked that way. He also watched people go in and out of his room. So we started to feel better. But they decided to have neurology come in anyway to assess him. They tested a few things, asked him to do a couple of things and then decided the best thing to do was to set him up with a 24-hour continuous EEG. They really want him to have a an MRI, but the rest of his care team still doesn't want him to have it. They have compromised on having him have it on the 20th if there aren't significant changes. But the EEG, as cumbersome it is and limiting in activity it is, will show what we all know, nothing is wrong. He just needs time. We are pissed that they decided to do it just because we had talked about taking him outside today and getting him in a chair and being a bit more active. But part of the 24 hour continuous EEG means he has to be monitored by CCTV A/V, so he has to stay put. But it will rule out stuff and we won't have to guess.

This morning was hard. The eye thing was concerning, but once we saw him move them to look at other stuff, we felt a bit better. Right after lunch his nurse decided to have Alistair sit up and dangle his legs again...which takes about 3 people (2 nurses and 1 of us) as he has just about no strength to do it himself. Right before he was sat up, he had a drink of Vitamin Water that we had via a sponge on a straw (he is too sleepy to drink by syringe or straw). While he was sitting up, he started breathing deeper and sighing with a bit of vocalization. I then realized he was trying to talk and watched his lips move. He told me through his very sighed and quiet tone that he wanted more water. When I repeated it to confirm, he said yes in a heavy sigh. My heart SANG! The PT who was working with him was hesitant because of the position of his head and neck and I told her he asked for it so he should get it. So we repositioned his head and gave him what he ASKED for. Then they got him back into bed and we gave him a bit more. After that I had to leave to go to the airport and told him goodbye. I waved to him and asked if he could wave back at me and HE DID. My heart sang even louder. I spent the morning crying and now I was riding high. 

I drove to the airport as reinforcements arrived in the form of my Dad. He needed to be here, and honestly it is nice to have some fresh blood to sit with Alistair and encourage him out. And don't tell my Dad, but it is nice to have him here for someone to be supportive and an additional shoulder to cry on. I also think it is good for Papa to be with his Grandson. 

Seth was talking to the PT after she was done with Alistair and asking about long term PT. She said he would most definitely be a candidate for in-patient rehab. Seth asked about her doing it here or if he could go home to Seattle Children's. She said she would see no reason why he couldn't come home to do in-patient rehab there and that it would be a better situation as it would be closer to home and his friends and family could be around to help and encourage him. That is good news...as much as I like Minnesota, I would like to leave it and go home!

I hope that this gets better soon. I want to get definitive information that nothing is wrong and he just needs time (as so many have said). I hate having these negative thoughts and thinking about dark things. I am trying to focus on the small steps he is making as well as all the things everyone is saying about how they have seen this before, in much worse situations, and the kiddos have recovered just fine. Many of the care providers are optimistic about a full recovery and I hope they are right.

Rose Colored Glasses Missing

Disclaimer for the following post: I am usually a glass half full, silver lining type of person. Today was my day to be the opposite of that. 

We called in this morning when we got up. His nurse said he had a good night, they pulled out his arterial line in his neck and one in his leg so that he could be more mobile today. The goal was to stimulate him more and get him moving. Seth and I walked in as we just wanted to get in ASAP and get things going. We watched movies and cartoons, showed him videos of him flying his airplane, the Blue Angels and the helicopter landing on the roof of the hospital. We showed him photos of people and places, read him books and played music for him. Seth, Judy and I took turns feeding him parts of his meal. David spent some time talking to him. I will say his face looked more toned today and not so relaxed and drugged out. His eyes were also a bit more opened and not quite so droopy. He pretty much stayed awake all day. He took a couple of cat naps, but nothing overally prolonged. 

Our attending from the weekend came in today and it was so nice to see him. He said based on the CT scan from yesterday that he thought Alistair just needs more time. But they decided to have a Pediatric Neurologist come evaluate him. He came in, asked us a bunch of questions, asked a bunch of things of Alistair and then left. He had mentioned the possibility of doing an MRI. But the rest of the ICU team was very anti-MRI as it means he needs to have sedative and we don't want to take THAT step backwards. There is an MRI scheduled for Monday, should he still be in this state. He did have an EEG this afternoon (EKG for brains) and it showed nothing, which is good. They decided to order OT/PT and had a rehab nurse come up to work with him. She told him she was there to work with him and help him get moving agian so he can be nice and strong for lacrosse. He seemed to respond to that and was cooperative.

Dr. Dearani came in to check on him this afternoon. After trying to talk to Alistair and get a reaction, he told us based on his neurology testing, his cardiac function, he thinks he just needs more time and that he will get there. Dr. Dearani seems to be a man who doesn't extend himself, he won't say anything he will have to retract. He also seems to have developed a soft spot for Alistair...he is a jazz fan after all!

Today was hard for me. I feel discouraged, disheartened and frustrated. I just want to HEAR him speak and interact with us. He moves and sighs in such a slow manner and his reponses, few as they are, are delayed. I don't even care about the physical part right now as I know that will recover. I just want my son who is chatty and will bore you to death with facts about airplanes at the the same time he is finding every angle to find a way to get a fish tank in his room. I want to hear about how excited he is to go to the beach and talk about minecraft and what he is going to design next. I will feel 120% better when he is talking to us again. I just need to know he is okay mentally. The rest is secondary. My mind knows this will all come together and that the medical professionals are telling me it will be fine and he just needs time. But my heart is heavy and sad and missing Alistair. 

Mostly good day with a few hours of HELL!!

Today ended up being a good day. We came in this morning and Alistair was "watching" Teen Titans Go! His nurse, who was wearing a flight suit because she was on stand by for medic flights, saw on his board what he liked and put it on for him. It's too bad he wasn't more with it because he would have loved seeing her! He opened his eyes a little for us and seemed excited to see us. I helped him eat his jello, he had a little bit of juice and went back to sleep. He would focus on TV a little. We read him books and he would look at the book and kind of focus on the pictures. But, at the very least, I think he was listening.

He is having a heck of a time getting his sedation and pain meds out of his system. At this point the only thing he has going is Tylenol for pain. He looks stoned, he acts really drunk - like on the verge of passing out - and you just feel so bad for the poor kid because I am sure somewhere in there he is trying to communicate with us! It's very frustrating, for everyone!

After his lunch, his nurse tried to order a swallow study for him. He coughed a lot while drinking his broth. But we hypothesized that it was due to getting so much liquid at a faster rate than getting it through a syringe or by spoon. The attending decided that before we did that, we should rule out any neurological issues related to his cardiac arrest on Friday causing his inability to shake off the sedation. She came in and told us they were ordering a CT scan on his head and we should know something soon. We had just come back from lunch (what is it about lunch and bad news!!??!!). When we got that news, my lunch did a backflip in my stomach. It took forever for them to call for his nurse to bring him down, the scan was quick and then it was another 90 minutes to 2 hours before we got results. It was awful waiting. We both sat there imagining all kinds of things. Seth summed it up when he said, "we brought him to Mayo to get fixed, not to break him!" I was imagining our next 20 years taking care of this kid who had such potential. It was not good. Finally they got the images back and it showed nothing, which was GREAT! I could feel the stress draining off of me as reality sunk back in.

Dr. Dearani stopped by too and he said Alistair just needs time. He said to go ahead and  stimulate him as much as we can during the day with the things he likes and keep him quiet at night to keep his diurnal rhythms going. With all this laying around, he will need a lot of rehab to get him moving again. Time is what he needs, time is what we are going to give him, more time here is what we are in for! 

The room next to Alistair's is a short timer's room. They put people there who only need a day or two to recover. Even though I know this, I find it irritating to see all these people roll in and out in short succession. Like this morning, a little girl who was totally out of it came in. This afternoon she was sitting up in bed eating a Popsicle. I would be lying if I said I didn't hate her just a little bit! I hope soon Alistair will be sitting up in bed eating a Popsicle, or better yet walking around the unit eating a Popsicle and flaunting it!

Gabe and Ranae came down for a visit tonight. It was a much needed scale call and nice to spend some time with them! And it was perfect timing as we got our good news while they were there, so having dinner with them was that much sweeter!

Tomorrow is another day. Slow and steady, one day at a time, onward and upward.