While Tim’s recovery slows down a little we wanted to go back and talk a little more about his transplant day since we only really spoke about knowing that the surgery was going to happen and then that it happened. This is going to be a long post with as much detail as we can remember so we understand if anyone doesn’t want to read through it all.
The story actually starts the night before we found out about the transplant happening. Tim, throughout the entire hospitalization, had been great about it. He hadn’t complained about being there, didn’t really ask about going home, dealt with the playroom drama very well and did what we all had to do and just kept calm and let things happen as they needed to, or in the words of one of his dad’s favorite websites he kept calm and chived on. However, the night before the transplant news Tim showed some rare vulnerability. He was asking about what it would mean to be in isolation after the transplant. He was sad that he wouldn’t be able to spend time with his brother Lou. He was angry about his mom and dad having to wear special clothes just to see him. He was worried about what it would mean to get his new heart. He cried, he got angry and yelled a little bit, he asked to be cuddled. Dad happily climbed into bed with Tim and held him tight, trying to find the right words to help calm Tim’s nerves while also trying to stay strong for Tim. Tim also asked to talk to his mom, so we called her at home and he chatted with her and Lou a bit too. Tim’s nurse, one he’d not had before, also heard Tim crying and came in to talk with him to try and answer any questions Tim might have had. It took some doing, but between everyone Tim’s concerns were eventually eased enough for him to fall asleep.
That night both Tim and dad slept well, which had been a rare occurrence overall. There have been more than a few nights where Tim has slept fairly well, but dad had struggled with getting enough sleep despite the better efforts of most of the nursing staff to keep things quiet. One major contributing factor was that Tim’s nightly diuretic had been stopped in the last few days which meant that he wasn’t waking up every night several times needing to use the bathroom. It also helped that Tim had been about as stable as could be hoped for and so there was very little need to disturb him during the night.
The next morning started as every other had during this hospitalization. Dad’s alarm sounded at 6AM and he started his process of getting ready to go to work. It was after getting out of the shower and looking to get Tim started on his day by trying to decide what to order Tim for breakfast and lunch that we were visited by Dr. McBride (Doctor Mary to our family). It wasn’t unusual to see any of Tim’s doctors at this hour, and they all seemed to drop in at odd times pretty much all the time anyway. Dr. Mary had become a family favorite among the staff during the last few weeks; her sarcastic humor and straight forward approach couldn’t help but make that happen.
Starting our day with a visit from Dr. Mary meant the day was going to start off well pretty much no matter what. She and Tim had been exchanging jokes throughout his stay and we could all tell that she felt a special connection to Tim. In reality, Tim seems to have become a favorite among the staff at the hospital in general. It may be because of him being a pretty unique case in part, but we have also seen Tim’s unique view on life endear him to a lot of doctors and nurses. Whether it was Tim talking about his favorite movies and shows, or about his unique for a 5 year old diet that includes favorites like mushrooms, scallops and sushi, or his caustic wit for some reason the doctors and nurses seem to love him even though some of that same behavior sometimes makes it difficult for mom and dad to like him all the time.
To further prove this point, Dr. Mary started off by telling dad that she insisted that she be the one that got to tell us the good news which is when she then told us that they had found a heart for Tim. Needless to say this brought on a whirlwind of emotions – happiness, excitement, and a little bit of fear. A few tears welled up in dad’s eyes and for once it was hard for him to come up with something to say other than thank you. This of course was the best news we could possibly have gotten. While we had settled into a routine at the hospital over the last several weeks and were prepared to continue on with that routine as long as was necessary it was so wonderful to know that there was now an end in sight and that Tim would have the best possible chance at a long and happy life now. Of course all of this happened while Tim was still sleeping since it was still barely 6:30 in the morning.
After Dr. Mary left dad called mom at home to share the exciting news and to try and plan on what to do for the day. Our cousin Leslie was scheduled to sit with Tim that morning while dad was at work, so mom contacted her to let her know she didn’t need to come to the hospital. We contacted all of Tim’s grandparents to let them know the exciting news too before we broadcast it to all of our wonderful friends. Soon afterwards, when Tim started to wake up, dad got to tell Tim the exciting news too. This brought back some of the anxiety of the night before again, but after agreeing to watch some Power Rangers episodes with him Tim settled down pretty well. Then the wait began.
As with any surgery the wait meant that Tim would not be able to eat or drink. Ever since Tim’s very first procedure we have had an often unspoken agreement that mom and dad don’t eat or drink while Tim can’t eat or drink. We firmly believe that we have no business expecting Tim to do something we’re not willing to do ourselves and that we can’t expect Tim to be stronger than we can be. Many times this policy is easy to abide by, and initially this transplant day sounded like it was going to be one of those easier days. Initial word was that the transplant would likely start in the early afternoon, but as all things that take place at the hospital that was subject to change.
As we’d been told, with a transplant there is a complex ballet of things that have to happen in concert in order to ensure a successful surgery. On Tim’s end it meant drawing lots of blood as with any of his surgeries to ensure proper typing for any necessary blood transfusions, confirm there were no infections and so on. We are sure they also needed to double and triple check to confirm that the donor heart was a good match for Tim. In addition to this operating room time needed to be scheduled, the surgeon’s schedule needed to be coordinated with and doctors from Children’s needed to go out to visually inspect the donor heart to confirm they thought it was a viable heart for Tim. At the same time, on the donor’s side a similar complex set of steps needed to take place including things like securing an operating room and scheduling a surgeon to harvest not just Tim’s new heart but any other organs that were being donated.
On the subject of the donor, we have spent a lot of time talking about our happiness and excitement about Tim’s new heart. This never would have been possible unless another family was experiencing something on the polar opposite end of the emotional spectrum in losing their child. The selfless strength and courage of that family to give the gift of life not just to Tim but to several other children and their families is inspiring. Our only hope is that we, as a family, can live up to that level of courage every day and embrace the life they’ve given our son with all we have. We’ve discussed it as a family and all agree that if ever put into the same position we would make the same kind of choice, but we also recognize that for some families that choice is an agonizing one to make. We can never thank this family enough, yet we may never know them. Be design, the donor program is an anonymous one. In the next several weeks we will be given the opportunity to send a letter to the donor family to thank them for what they’ve done, which we plan to take full advantage of. From there it is entirely up to the donor family if they want to let us know who they are or not and if we get to meet them or not.
So, as we sat and waited for all of the preparation for the transplant surgery to take place we did what we could to keep Tim entertained and distracted. Mom arranged for Lou and Rosie to stay with our friends the Petiprin’s for the morning and then they would stay with their Grandma Jean for the rest of the day. That allowed mom to get to the hospital around 10:00 to help pass the time. Tim had lots of visitors from the hospital throughout the day. Emily, the wonderful child life specialist came by with an iPad with lots of kid friendly apps, including what instantly became Tim’s favorite: a virtual whoopee cushion. She, and the transplant social worker Pilar spent a lot of time talking and playing with Tim throughout the day. Our old friend Dr. Kindel took one last teaching opportunity to have a couple of the other cardiologists listen to Tim’s old heart one last time since the next time they saw him, from a cardiology standpoint, Tim was going to be a whole lot less interesting to listen to. This was especially fun to watch since Dr. Kindel had Dr. Ben and Dr. Lindsay making sound effects to describe what they were listening to – it was all more than a little surreal. In hindsight one of our only regrets is that we didn’t take a similar opportunity to listen to Tim’s old heart one last time too.
In between all the hospital folks stopping by to see Tim he also took plenty of time to just be a kid too. He played basketball and Lego games on the Xbox with dad, and watched a number of movies and TV shows to pass the time. Tim also got to visit some with his grandparents that had come to the hospital to wait for the surgery. Eventually it became obvious that the early afternoon estimate for the start of surgery was not going to happen, mostly because at some point we looked up and it was 3:00 in the afternoon. This was also when Tim started to realize he was getting hungry.
This was when plan B was put into action with dad running out to get Tim a new Avengers Lego set to put together. By the time dad got back to Tim’s room Emily from child life had also stopped by with some Legos sets for Tim to pick from too. Tim chose a Toy Story set and he and dad started putting that one together first. While a good distraction, eventually Tim started getting grouchier from not eating and so some other alternatives needed to be put into play.
Dad had just the thing on his iPad sitting in reserve – one of the Family Guy Star Wars specials. Now, please keep in mind we generally don’t let the kids watch these shows, but they have seen them before by being a little sneaky with the DVR or the DVDs. The raunchy humor and bad language seems to go entirely over their heads and they are just focused on the fact that they are watching a funny version of Star Wars. The show definitely kept Tim distracted for the entirety and it gave Tim a bit of humor he held onto for the rest of the day that also allowed for lots of laughs in his room for everyone. The name Carlos Spicyweiner will be one we won’t forget for a long, long time now.
As the day wore on and people started to linger in Tim’s room a bit too long we did have to start asking folks to step away to give Tim his space if we expected him to remain in good spirits. It, unfortunately, meant that we had to ask grandparents to leave the room on a couple of occasions. At about 7:00 we got a visit from Dr. Backer, Tim’s surgeon, telling us they were getting close to being able to get started and checking to answer any questions we had. He then left to prepare for the surgery. Finally, at about 8:00, the anesthesiologists arrived to get Tim ready for surgery. We got some hugs in, whispered some encouraging words in Tim’s ear and the doctors gave Tim a pre-sedative to calm him down since he’d started to get very anxious about the surgery again. As the drug kicked in he went from tears to giggles and before we knew it he was being wheeled out of the room and off to the operating room. At this point mom and dad took the opportunity to go and finally have something to eat.
On our way back to Tim’s room we got a call from his nurse telling us that we needed to clear out all the stuff we’d moved in. This was a surprise and a minor point of frustration for us as we’d talked to just about everyone we saw from the hospital during the day about what would happen with all Tim’s stuff and had been told by everyone that other than stuffed animals and blankets that we would be able to leave it all in the room. For us, it was less about having to move the stuff than the fact that we’d just told all the grandparents to head home since surgery wasn’t going to be over until early morning and we could have spent the entire day clearing stuff out. We really didn’t care either way what was going to need to happen with the stuff, we just were a little concerned and frustrated about the mixed message.
One thing we have to continually remind ourselves of is that while this isn’t the first transplant this team has dealt with, it is the first one they’ve handled at the new building. With the new building it gives them the opportunity to do things differently for the better and in many cases they haven’t had a chance to work through every detail yet. So, some members of the staff are relying on policies that were in place for the old hospital, others may be working from new policies that may have already been abandoned and in some instances there just may not have been a policy in place yet and everyone is just trying to do their best to come up with a safe and reasonable answer.
Another area of frustration came up shortly after this as we were trying to decide how best to wait for the surgery to be completed. Mom had been planning to head home to get Lou and Rosie and get them to bed at home, but then the options that seemed to be in place during the day for dad to stay started to dry up. At one point we had been told that we could wait for Tim in his room but they now wanted to clean it down so it would be 100% clean for him after surgery – which made sense and was totally reasonable. So, we asked about staying in one of the new parent sleep rooms in the family life center. As it turned out all of them had been taken and were also booked for the rest of the week. This also created some frustration as those rooms were only supposed to be checked out for 24 hours at a time so that parents of newly arriving very sick kids could potentially have access to them. Now, not having one available when requested at 9:00 at night seemed reasonable and not that surprising but the idea that they wouldn’t free up for over a week seemed a little outside the boundary of reasonable.
At this point, without a bed for dad to sleep in at the hospital while Tim was in surgery overnight, we made the decision that it would be best for us all to just head home for the night. Living just 20 miles away we don’t feel that far away, and if we needed to head back in the middle of the night we could make the trip in less than 30 minutes. We also have always taken the approach that there is nothing we can actually do at the hospital other than sit there and wait, which can be done anywhere. It’s not like we can assist with the surgery. Yes, under ideal circumstances we like to be close by, but in this situation it just didn’t make any sense to do so.
We got a call from the OR at about 10 letting us know that Tim was fully ready for transplant to begin and that they had already opened his sternum and were awaiting the delivery of the heart. We then told the nurse we were speaking with that unless something went wrong we just wanted to be updated when surgery was complete. After getting some fitful sleep we got the call from Dr. Backer at about 3:30 in the morning that everything went well and Tim was heading back up to his room to start recovery. This was exactly the news we had hoped to hear and the stress that had been accumulating since Tim was listed for transplant back in March seemed to evaporate immediately. We decided to try and get a few more hours sleep before trying to go back to see Tim since we didn’t have anyone available to watch Lou and Rosie for several more hours and with Tim on the ventilator again we have a much lower sense of urgency knowing that if he really needed us there the nurses would contact us.
That gets us up to date, Tim’s recovery so far has been going well. He hasn’t surprised the doctors with anything out of the ordinary yet. He will remain on the vent for another day or so and then we be spending all of our time with him to help him along with his recovery. These 2 weeks in isolation won’t b e a lot of fun for any of us, Tim will definitely be missing his brother and sister and mom and dad will be spending a lot of time in masks, gowns and latex gloves. For the moment we’ve been told that if we sleep in the room with Tim we will have to remain in those same masks, gowns and loves which will make sleeping difficult at best. However, all of these comfort sacrifices are without a doubt worth it knowing that it means that Tim will be as healthy and happy as possible after the isolation period is over.