Biscuits and Gravy

Gorgeous sunset view from our room!

The nutritionist comes by every other day and we chat about the food Alistair is getting and what he has liked and what he hasn't liked. The food is very much hit or miss, mostly miss. Alistair loves biscuits and gravy and I asked her about it. They have pureed biscuits and she thought adding the country gravy would be okay. Well, Alistair FINISHED his bowl of biscuits and gravy this morning...Seth was hoping there might be a bit left for him! :) I have a feeling this will be a frequent breakfast item! 

I apologize for the lack of posting over the past few days. I have had a number of people check in to see if everything is alright since there has been nothing posted. All I can say is there is hardly time to do so! The last few days have been busy and exciting. Alistair has been making progress in leaps and bounds. The recreation therapist, who met with Alistair last Tuesday, was gone for the last week. She stuck her head in on Monday as they had been talking about Alistair in their Monday morning huddles and she was incredulous it was the same kid, she had to come see for herself! 

Over the past few days in PT, Alistair has done some unassisted sitting on the mat tables - at first for intervals of 16-20 seconds and has worked up some additional stamina! He has also sat in actual chairs, not wheel chairs...he did so today for school. 

He has done some assisted standing on the tilt table as well as working on pivot transfers where you have him stand while supporting him to move him from the bed to chair, etc. He likes standing as I think it feels good to be upright and stretch out some things. He is getting a lighter wheel chair tomorrow as he was able to endure most of the day in his wheelchair without a headrest...we did give it to him for a break during lunch. He was taken off of sternum precautions, so a whole new world has opened up for Alistair to be able to work on his strength and movements. His occupational therapist is excited for him to be able to use his arms more and bear weight or lift weight. As he works on more standing, he can use his arms for stability as well as use them to help sit up after rolling over. His OT has also been working with him on using his hands and fingers. Today she had him playing a game on the computer using a mouse. During the session, he was moving the arrow to start the game over. Instead, he chose a better game to play, but it required using the arrow keys instead of the mouse. She was a little concerned this might prove to be too difficult, but he managed just fine and went to town playing the game with little intervention from any of us. She told Seth later that it was pretty impressive. 

Alistair helping put his foot plates back on his chair

The one area that continues to be a challenge is speech. He pretty much has no articulation and cannot speak. He has a voice and sounds, but no words. He has become quite adept at using his alphabet board. When he spells stuff out he spells out whole sentences instead of trying to just get the point across with main words; which I think is pretty cool and truly illustrates how much his cognitive skills are intact. Today he was looking at some photos of the future Concorde designs and one was particularly fat and ungraceful looking. He asked for his board and spelled out to us, "That is one messed up Concorde!" This is one area that I am perplexed as how to feel about the future. I know speech issues can be overcome...we did it once before. But I don't know if this is a tone issue related to tense mouth muscles, or if this is truly starting over from square one. Only this time he knows all the words, just needs to relearn how to say them with his mouth. Time will tell.  

Petting Paddy in his favorite place!

In medical news, the wound nurse came to do a dressing change on his sternum incision and decided he didn't need the wound vac anymore. So Alistair is officially no longer tethered to any devices! He still needs a dressing change every few days, but his incision is healing nicely. Alistair continues to suffer off and on from a slightly swollen right arm. The cardiology team decided to have it dopplered to see if there was anything internally causing the issue. As it turns out, he has a small blood clot that is not completely blocking the flow of blood, but limiting it. So he has been put on Lovenox injections, which is now a source of anxiety two times a day. They put numbing cream on his skin about 20 minutes before they do it. I don't think he actually feels the poke, but the cream is a signal he is getting a shot and then frets about it. I think once this happens a few times and he realizes it doesn't actually hurt, he will calm down about it.

Bird's eye view of the helipad

Tonight Alistair was injected with Botox. This is a drug that rehab doctors have been using for years to help with tone and dystonia. Alistair has been suffering from both tone and dytonia and it is more debilitating for him in his arms than anywhere else. His right arm is always straight and he can't bend it easily himself. This is partially due to the shortening of his tricep muscle from not being used and also the tone in it causing it to always be flexed. The botox should help the tricep relax and allow Alistair to engage his biceps and deltoids as well as lower arm and wrist muscles. Similarly on his left arm, Alistair has very tight bicep and deltoid muscles that cause his arm to be bent most of the time and rise up over his head or near his face. Last night he started involuntarily jabbing himself in the eye with his thumb. So the botox he received in that arm should help him keep his arm down and be able to straighten out his arm. Originally they had talked about his calf muscles too, but have found through the standing he has been doing coupled with the night splinting on his left foot (and right soon, when that splint comes in), it is helping relax his leg muscles and allows him more fluid movement as well as better range of motion and stretches through his ankles and feet.  

Doing an assisted stand with Dad

The therapists all seem genuinely optimistic about Alistair and his progress. From what we can tell, everyone around here are straight talkers and don't extend themselves. Of course they want to celebrate any accomplishment as they are huge deals, but they don't gush about things. All of his therapists as well as the doctors are so excited about what Alistair has done in the last week. In fact, his PT made the comment that she needs to revise his goals he needs to meet to go home as Alistair met in a week what she thought he might be able to accomplish in a month. He is far from ready to go home, but he is making huge progress. He is a hard worker and has such a great attitude about it. He has not proven to be difficult, yet. I am sure there will be some push back at some point. Tomorrow is our next family conference, we are very curious as to what they have to say about Alistair and what they feel is in store for him. 

                                               

Weekend Happenings

Weekends in rehab are somewhat quiet. You have half a day of therapy on Saturdays and a total break from therapies on Sunday. Saturday brought some small but exciting moments. Alistair had physical therapy in the morning and she brought in the tilt table to work on some leg strength. She had him at about 50 degrees and loosed the straps. Then she had him bend one leg at a time then straighten it. Once he demonstrated quite well that he could do that, she had him do his legs together. He did over 20 squats on there! He had lots more strength in his left leg than his right, but she said as muscle groups begin to get used on one side, they help fire synapses over to the other side to help it remember too. Apparently she was so impressed with his performance that she went and found the attending physician to tell her about it! In occupational therapy, they worked on hand and finger movements. He was able to pick up a squishy ball and hold it without dropping it. Then he was also able to throw it. This is something that has proven hard for him. In addition to his hands ands fingers beginning to work, his feet and toes are also starting to move more on their own. When he wiggles his toes, it is much more pronounced and obvious than a few days ago when you really had to watch for movement!

Yesterday Alistair had 2 very special visitors. His principal, Mr. Wellington, came to visit with his daughter and brought some homemade scones (which were delicious!) his daughters made. Then Alistair's 2nd Grade teacher Mrs. Scheel came. We chatted for a bit and then we left her with him so she could read him some books. He fell asleep during the reading, but I think it was because it was soothing to him and he likes to fight sleep sometimes. I know he really enjoyed seeing her and she promises to come back and next time she will come with her friend who has a therapy dog! Auntie Ann and Uncle Bob came in the afternoon and hung around to order Chinese food and have dinner with us! Nice company!

Alistair was swabbed this morning first thing and 2 hours before lunch we found out we were no longer in isolation. We were getting ready to get Alistair out of his wheelchair and into his bed. But when we got the news, he decided it was time for that wheelchair ride he asked for the other day! Carolyn and Jenn had shown up to visit, so we went up to the rooftop garden where Grandma and Grandpa joined us too. Then we headed for the parking garage as Alistair wanted to see the new car! We opened all the doors so he could peer in from his chair. Seth started the engine and we showed him all the running lights and headlights. He was pretty excited! We headed back to the room after that and Grandma and Grandpa had lunch with Alistair while we went to lunch with Carolyn and Jenn. Shortly after we got back, Grete showed up with a smoothie for Alistair. He quite enjoyed it and it was a big enough to freeze some and have it tomorrow! Melissa was our last guest for the day and she brought Alistair some fun airplane items, one or two of which we might be able to use in therapies! This evening we took our dinner out to the patio and ate outside, first time in almost a week!

This morning, while speaking with the attending physician, she told us a quote that resonated with her she heard at a conference, "Each patient is telling a story, their own story, and sometimes you have to wait longer for them to finish." Alistair is actively telling his story right now and it is constantly changing and nobody knows for sure where his story is going. She said it is all very interesting and she finds his changes very encouraging and positive. Seeing what Alistair is able to accomplish on a daily basis is great and very encouraging. His head nods are much more pronounced, his head movement is much more fluid and the extremities are beginning to work better. He is still fighting some acquired dystonia, mostly in his arms and jaw, that I wish would go away. Over time it might or should. But right now it angers me, especially when his arm rams him in the face and he can't get it down by himself. It is all involuntary movement. Depending on his level of fatigue, he can overcome it easier. They are talking about doing some isolated botox on the muscles affected most to be able to give him more control and the ability to work on the underlying strength to help control it better as it subsides. 

Tomorrow is a significant day. It marks our first full week in rehab. It also marks one month since Alistair's surgery. I have so many mixed feelings about this whole situation. Alistair's heart is strong and working great. It was a successful surgery, from that standpoint. As I sit and speak with doctor's about Alistair and the things he is doing or the care he needs or the future possibilities for accommodations, the phrase, "this was only supposed to be heart surgery" keeps running through my mind. It wasn't supposed to wipe out my 9 year old son's ability to be a kid, it wasn't supposed to make him relearn how to do everything he learned as a toddler, it wasn't supposed to spread our family apart in 3 different directions. I was going to be worried about a kid with sternum precautions wandering around our house and tripping. I was supposed to be nagging him to go out and walk with me to get some exercise. But mostly we were supposed to have a kid who was better because of his surgery, not broken. He will get there, in time, but he wasn't supposed to "get there." 

A Room with a View

Yesterday was a busy day; both visitor-wise and therapy-wise. Judy stayed with Alistair the night before so we took a little more time getting in instead of jumping out of bed, grabbing some coffee and heading in. Once we got in, Alistair had therapies all morning. He did some stomp rockets and kicking balls with PT while sitting in a chair, OT worked on getting a shirt on and did some stretches (he fell asleep!) and speech worked on eating then some other ideas for non verbal communication. She brought him a notebook with subjects and then topics under each subject page for him to point at to help us figure out his needs. He looked through the list and chose FUN! We went to the fun page and he looked down the list and didn't find what he wanted. We used the alphabet board, which seems so tedious and slow. But he was able to whip out in pretty quick succession "wheelchair ride." Oh how I wish we could fulfill that request. Hopefully tomorrow we will be able to roam about the hosiptal again with him and go outside! His therapies in the afternoon consisted of some stretching, rolling and some more reading comprehension with the educational therapist. 

Alistair never napped yesterday except for the 10 minute cat nap he took at the end of his morning OT session. He is really generating some good stamina. That being said, he does tend to seem a bit sleepy and could benefit from a nap after lunch, just to recharge! In the evening, I stepped out at some point to make a phone call. I was blinded by sunshine gleaming off the floor of the room across the hall from where I was standing. Then I realized the room was empty, clean and ready for a new tenant. Though we had our own room, it looked over the common area patio and didn't have direct daylight. It was a bit cave-like. I made a joke about moving rooms, not thinking it was an option. So Seth mentioned it to the charge nurse and she said, "let's do it now, it's a nice room with a great view and you should have it!" So now we are in room RB.5.524 and hopefully will be here for a while.  The view is west. We look over the River parking lot, can see some of the UW dorms, a peek-a-boo view of some Olympics and SUNSHINE in the afternoon! So nice...and Alistair can get to the window in the wheelchair to actually see out there. We can also kind of see the helipad, but would certainly see the helicopter coming and going!

Seth had a whole slew of work friends come visit yesterday afternoon. Alistair watched cartoons while we all visited. It was nice to have a lively adult conversation, even if it took place in a children's hospital. Seth and I also discovered that there is no reason why, after Alistair goes to sleep, he and I can't slip out for a bit for a drink or something. Last night we spent a small fortune at Jak's. So if anyone wanted to venture this way to grab a drink around 8:45 or so, we could go grab a drink somewhere close. Or we could pretend we are in college again and drink incognito on a bench around campus! 

Gillian, Natalie and my parents made it to Gearhart yesterday. They are looking forward to a few days at the beach. I guess it has been a bit cooler and foggy/cloudy. Hopefully the sun comes out for them! Alistair has a couple of special guests coming to see him today: Mrs. Scheel, his second grade teacher, who is coming to read some books with/to him and Mr. Wellington. I think he is looking forward to seeing them both!  

Bittersweet Day

Alistair has had 3 solid days of therapy. He has done a great job. We find he is more active, alert and motivated in the morning. But can also be more so after about the 2 o'clock hour. He is sleepy around lunchtime and usually falls asleep for a period of time. He has done great and works hard, which really isn't surprising to us! His PT has consisted of standing on the tilt board the last 2 days while playing a game. He got up to about 70 degrees today. We were going to try a bit higher, but he was beginning to lurch forward as he was getting tired. His OT has focused on arm stretching and trying to use his hands to do tasks like hit balls off the table to the side or push buttons on or off. His speech therapist has mostly been focused on his eating (he got to return to eating pureed food and honey thick liquids after figuring out the coughing was cold-related and not aspiration!) as well as non-verbal communicating through using his eyes. We have become quite adept at wording things in terms of yes and no or 2 choices. His therapist has been playing hangman with him and using an ABC board where he looks at the quadrant the letter is in and then looks at the color the letter is and then we can figure out what letter he is choosing. I have yet to figure out how we use this to "talk" with him without it taking 30 minutes for a word...and he seems fairly annoyed with the lengthy process as well. Today he had the education therapist (teacher) come and co-treat with speech. He had Alistair read a passage and then answer multiple choice questions using a white board with A, B, C, D written on it. Once he figured out the answer, he would look at the corresponding letter. That seemed to go much smoother and illustrated to us Alistair's cognitive skills are quite in tact and not really lacking.

Alistair is still in contact isolation and will be until he becomes asymptomatic and THEN the 3 day countdown takes place (we thought we were done tomorrow evening). This seems like such overkill for a cold, but I get that a cold for one is worse for another. The other issue is that Alistair has had a cough since he was extubated which has yet to subside. He certainly had an increase in coughing on Tuesday when all this hubbub began, but ever since Tuesday his cough has returned to what it was. He has had no other cold symptoms aside from the cough. The worst part is that he is stuck in his room for therapies (no using the gym or venturing to the play room) and we can't go outside to the patios or gardens. Until we get cleared, children are not supposed to visit. We can make an exception for his sister, but she is supposed to gown, glove and mask...which I am sure she will LOVE! 

Today Seth's parents came up to be with Alistair so we could join my family for my Dad's retirement party from MacDonald Miller. It was at the Museum of Flight...one of Alistair's favorite places. It really felt wrong to be there without him, like we were cheating on him or something. Tomorrow my parents, Jeff and his family and Gillian are heading south to go to the beach house my mom rented for us all to gather and celebrate my Dad's new chapter. Alistair was SO looking forward to this, more than anyone else and now we are forced to stay behind. Nobody is happy about this and of course we haven't mentioned this to Alistair. I am sure at some point, when he is speaking more, he might bring it up. But like everything else that was changed this summer, we are getting a redo...and this will be on the list. So congratulations to my Dad for finally getting to do what he wants to do and to enjoy life outside of the 9-5 grind. Luckily for us, he sees this as great timing to be there for Alistair and help him heal and get back home. 

We got a Private Room...

...at a price! Alistair has developed a cold and so we have been put in contact isolation. The room we were in was technically a double. They told us last night that they got the okay to have no more double rooms and that they would have only single rooms and we would have this technically double room as a single. Maybe, eventually we might have a roommate, but that wouldn't be for a while. Well, today was the end of a while as we got a roommate this afternoon. He is only a couple of years old and obviously recovering from brain surgery. So, I don't think it would have been too bad, other than feeling like you are walking through someone else's space all the time! Seth has been working on a small cold or something for a while. We have been living in a hospital for almost a month, been so stressed out and haven't been sleeping great...so developing an illness isn't uncommon. He has been very diligent about not passing it on to Alistair. So he could have caught it from Seth, or he could have caught his own from the same experiences we have had! Whatever the reason, Alistair has a respiratory illness (cold) and needs to be in isloation to not pass it along to others. 3 days with masks and gowns on our service providers, but we don't need to. We can do it. And now we have a private room! But I hope his cough doesn't develop too much as I would imagine it can't feel good on a recovering sternum! 

Today was a good day. After a restless night, I was afraid Alistair would want to sleep the day away. He did a great job of staying awake and participating in his therapies. His PT called off the end of therapy this afternoon as she could tell the mind was willing, but the body wasn't. Early this evening, Alistair was given a nice, warm shower. I think he was pretty wiped from the day, feeling a little under the weather with his cold that seemed to come on this morning and then had a nice shower to cap off the evening. Papa is staying with him tonight so we could have a night at home after 2 nights in a row there. Hopefully everyone sleeps WELL tonight!

Tomorrow, Seth has decided to stay away even though he seems to be getting over his cold. Instead, he and his Dad are going to drive over to Kellogg, ID to get our new car at Dave Smith Motors. We bought it before we left for Mayo with the thought we could pick it up once we returned, not planning on having a prolonged stay. At this point, we need to get our car! So I will get a glimpse of what being alone at the hospital with Alistair will be like once Seth goes back to work. 

Tomorrow is another day of therapies. He has music therapy tomorrow, which he had on Monday and seemed to enjoy! Alistair will have intensive therapy schedules Mon-Fri, with some breaks worked in. If you think you want to visit on a weekday, give me a holler the day before and I can tell you when he will be free as we get his schedule in the afternoon. Otherwise, he will be free Saturday afternoons and all day Sunday when therapies don't occur. 

Just Say "Yes" to Rehab!

Unlike Amy Winehouse, we are saying Yes, Yes, Yes! We got the word this morning from insurance that Alistair has been approved for rehab...and was so on Friday evening - right after everyone went home for the weekend! Oh well, a yes is a yes and it is happening today! All weekend everyone around here seemed fairly incredulous that he wasn't down there yet and were all on the same page about him going. It had been arranged yesterday afternoon that we would be moving down there this morning regardless of insurance just to be able to have rehab nursing. But if someone was approved for rehab ahead of us, we could be bounced. Nobody is bouncing us now and Alistair is going to begin to get the much needed help and rehab he needs to get back to HIM!

The weekend was fairly quiet. Mom and Dad survived their night with Alistair. Things went fairly smooth and when we came in, he was in his chair and all ready for the day. We had a nice, relaxing night with Gillian. We had dinner at home and put together some puzzles. In the morning Seth made us waffles and some eggs and ham. We got our stuff together and headed in. People hung out for a while and then they took off around lunch time to get south during all the Seafair melee. They took Gillian to her favorite restaurant, Red Robin, in Tacoma and then took her back to Ethan and Jen's for another week of day camp with Katelin.

We hung out for the rest of the day. Uncle Bob and Auntie Ann came by for a visit. We watched the Blue Angels on TV and the kept an eye on the hydroplane races. Eventually they took off and we let Alistair nap for a few minutes. Then we got him in his chair and took him up to the garden for some fresh air. Then we came back, gathered our dinner stuff and headed up to the patio for dinner al fresco. Alistair had a decent night sleeping, only a few agitations. 

We got up this morning and got our room packed up. Around 11am, we wheeled our stuff down a floor into the unit. We are currently in a shared room, but the unit just got the okay to have 10 single rooms if they are all rehab patients! So we are going to be moving into the other shared room, which is a nice corner space. Alistair spent from around 12:30 until 4:30 meeting with all the therapists and then rounded out the day getting his wound dressing changed on his surgery incision. It is healing nicely. Alistair rocked his assessments and impressed the therapists. We let Alistair nap and take it easy this morning so that he would be awake this afternoon. 

Alistair is going to be busy, busy. He has therapies in the morning and then again in the afternoon with speech, occupational and physical, then they fill in with recreational, music, pet, school and other therapies. As we get going, we will figure out when Alistair needs to rest during the day as I am not sure he will be able to sustain all day...but maybe he will.

I am feeling less stressed about him now that he is with people who are skilled to care for him and help him. It is still going to be a lot of work and this is far from ideal, but things are looking up. I can't say I don't feel like getting sick every morning at the idea of spending my day at the hospital. But I just cram down my Starbucks breakfast sandwich and latte and wait for the feeling to subside! Once we are done with all of this, Starbucks and McDonald's for breakfast is never going to happen again! 

A Much Needed Break

Piper is in Olympia now and is hanging out with her brother, Riley. Aren't they cute!?

Last night Alistair had an unrestful night, as did we. He was agitated off and on. I think he got some good stretches here and there, but not restful all night. I think part of the problem is that he has a nagging knot in his right shoulder/neck area that is bothering him. He is also dealing with some muscle tension in his left arm and involuntary tightness, which makes it hard to relax. We were up early this morning. We knew we had lots of visitors today, so we took it easy and eased into the morning. We did Saturday morning cartoons and some lemonade until breakfast arrived. Then we got dressed and were ready to go. Gillian and Natalie came with Nana and Papa and Uncle Jeff also came. We also had Grandma join us today! It was a full house! 

It got real for Gillian today. She thought she was coming to the house to see Alistair and was surprised when she came to the hospital. I took her down the hall to chat and cry after she sat and watched Alistair for a while. She is very sad for her brother and kept telling me she "didn't like this and wished things were different!" Don't we all. She also kept asking how long it would take to make him better. When we got home she told us she didn't want to go to Papa's Retirement Party to the beach if Alistair couldn't go. She is still balancing this out with her own self interest and not getting to spend time with us, but I know deep down she is scared for her brother and wants him to be better.

Alistair had a fairly large emotional breakdown this morning after seeing Natalie. You could say it was his sister and other family members, but I really think it was Natalie. They have a fairly close cousin relationship, it was just them for quite a while before the other cousings came along and I know he thinks the world of her. I think she is pretty fond of him too and she is very sweet and caring. As much as anyone prepped her, she was still affected by seeing him and I think he responded to that and also just that he couldn't do a simple thing like say, "Hi" to her. Everyone took a break and then we all got back together and went on a field trip to the roof top garden. 

Seth and I took off early afternoon to grab Gillian who had left sooner with my brother and Natalie. We left Alistair in the very capable hands of his grandparents. Grandma stayed for a few hours and visited with Alistair as well as my parents. My parents are staying with Alistair tonight so we could be with Gillian at home and have some family time. We didn't do anything exciting or special other than just be at home. I think Gillian appreciated being in her room with her stuff, although we found her on her bed listening to Frozen and thinking about Alistair. 

Later this afternoon, in a text exchange, Seth found out that Alistair's Physical Therapist , Brian, came to visit him. Alistair had been seeing him since October. We were very touched that Brian thought enough about him to come visit him and shared some personal stories with Alistair. I hope that he comes to visit again as I think Alistair liked Brian and I think Brian might have some ways to motivate Alistair down the road. Thanks, Brian, for coming down!

Here's to everyone having a quiet night tonight...here and at the hospital. Tomorrow will be another quiet day. We have resigned ourselves to the fact that nothing will happen until Monday. But if things don't get moving on Monday toward Rehab, we will not sit quietly!