I am happy to report that after 3 nights in the hospital Caleb was discharged this morning. He didn’t do much except sleep and watch his iPad for 2 days. He hardly talked because when he did he coughed, and he didn’t feel like eating. Even with all he has been through this was the saddest I’ve ever seen him.
Finally on Tuesday afternoon he started feeling like eating again. Cinnamon Toast Crunch and Cheez-its were his first requests. I could tell he was on the rebound. We have also been monitoring his blood counts closely, and as expected after the chemo, his numbers for both Hgb and platelets were very low. So he received a blood and platelet transfusion while we were there. This always helps him feel better as well.
When I walked into the hospital room this morning Caleb looked like himself again. He was standing up ready to walk himself out of the hospital! I was so happy and so relieved to see his smiling face and cute personality back. And of course I brought his favorite breakfast, munchkins from Dunkin’. He enjoyed them on our drive back to the house.
So, we learned many things during this first stay at a different hospital. First, we are getting to know our knew doctors and so far are very pleased. They have been working hard to learn all they can about Caleb, including talking with Caleb’s doctor at St. Jude. All the staff at Tampa General was awesome. The nurses were very sweet and loved Caleb. The Child Life person brought him toys to cheer him up. Another group stopped by with Santa and Mrs. Clause (Christmas in July I guess ha ha!) and dropped off a bag with a toy and a pair of new pajamas. In that respect Tampa General was amazing. BUT, we have been so spoiled at St. Jude! We knew St. Jude was special but we now appreciate it even more. The hospital rooms at TGH are SO small. At St Jude we had a separate parent room and separate bathroom. The rooms at St. Jude are really set up to make both kids and parents comfortable for lengthy stays. However since Tampa General is so old the room was small!! James, my amazing husband, slept in the sleeper chair for 3 straight nights so that I didn’t have to. I love him for that. I know it was horribly uncomfortable. It was hard and squeaked like crazy! For all those times I was depressed and wishing we weren’t stuck in a St. Jude hospital room, I’m sorry. I realize how spoiled we were ha ha! The other thing different is that at St. Jude Caleb could order anything off the room service menu any time from 7:30am-9pm. ANYTHING he wanted, at ANY time. But at TGH you have to pick your food ahead of time for the following day. When Caleb doesn’t feel well it’s impossible to know what he’s going to feel like eating. Most of the time at St. Jude he would order white rice and butter like 3 or 4 times a day. So, that was very different but Caleb hung in there. We were able to get him all the things he wanted, which wasn’t much since he didn’t eat for a couple of days. Lastly, I thought our days when we got transfusions were long at St. Jude… I was so wrong. TGH’s process to clean the blood took even longer! I think we waited around 7 hours once the blood was ordered for it to be ready. This is for good reason though. The blood Caleb receives for transfusions has to be extremely filtered, and we were also told it’s radiated. They have to be sure there is almost no chance for disease. By the time Caleb receives it almost all the plasma is filtered out and he only receives red blood cells. So, this is a lengthy process to start with, but maybe took 2-3 hours at St. Jude… but took like 7 hours the other day at TGH. So, if he has to get transfusions there on a regular basis we may be looking at some LONG days. Hopefully his body will recover more and that won’t be our norm anymore.
So, I say all the things I say about St. Jude vs. Tampa General not to knock anything or complain. I believe TGH runs at a very normal pace. They still took all precautions they needed to with his care and treated us awesome. However, it did make us thankful for all St. Jude gave us over the last 10 months. It is such a special place dedicated to the very specialized things that can be a little out of the norm for a regular hospital. It also makes me realize even more how going there for Caleb’s care was one of the best decisions we ever made.
We will return to Tampa General on Friday for another count check. Hopefully the platelets and blood he already received will be enough to help him recover and he won’t need any more. We are glad our new doctors here realized that Caleb needs to be monitored closely and went ahead and scheduled count checks on a more regular basis. They are very concerned about Caleb’s well being and that makes us feel better as parents. Knowing your medical team is on your side and just as concerned as you are is so important. It’s the one thing I’ve been the most nervous about with moving back here, but since Caleb had the fever and the virus he needed immediate care and we were kind of thrown right into the whole new routine here. I never thought we would be inpatient one week after moving home. I pray that was the last time, or I’m pretty sure it’s my turn for the sleeper chair ha ha!
For now I’m thankful to once again be home and have Caleb back to feeling great. Tyler was so excited to have him home tonight too, and gave him the surprises he picked out for him while he was with grandma last night. Tyler is so sweet and always thinking about Caleb, especially when he’s not around. I hate that they had to be apart for a few days but they had a blast playing together tonight. I’ll update everyone again Friday after we get his blood counts.
So happy Caleb is home. Hope he is feeling better today. 🙏🙏🙏