Life Outside of the Hospital

Where do I begin? Sorry I have not caught up since Tuesday night announcing that we were being released on Wednesday instead of Thursday. Needless to say, I have been busier than I can ever remember. Honestly, it feels almost exactly like bringing home a newborn for the first time. I have been trying to find my "system" and get it down. You have a schedule to follow, appointments to be at...making sure you have all your meds and feeding items for these appointments. BEING PREPARED. So, I think we are down to a system...I am sure it will change...but for now, it works. I am always open to suggestions for anyone who has ever had to give a large amounts of various medications through the day. :)

A quick rundown of events. Wednesday we were discharged around 5 pm. My wonderful friend, Alisa, came to help with the transition. Once we were at the Ronald McDonald House I start to unpack all the meds, get things in their spot...letting my OCD spill all over the place. Then our home nurse came by to show me how to use the feeding pump and flush his picc line. After that, Alisa went home and I got the little guy to bed. I had a hard time falling asleep, and finally I did. Then I got woken up around 2:30 am, picked him up and he threw up all over me and the bed. SO, by 3:15 am I got everything settled and him back to sleep.

Thursday we woke up around 6:30 am. My mom came this day and during the morning I continued trying to get everything put away and organized (meds, clothes, medical equipment, etc.); my amazing mom stopped at Target to pick up groceries for us and other stuff we needed. After she got here we had OT and PT at 3 pm and 4 pm. Throughout the day Nolan still was having vomiting episodes from time to time. More so than what we had been having. Our transplant coordinator (who is amazing and so helpful!) called to check in and see how we were. I let her know about the throw ups, so we decided to keep a close eye on it during the day because Friday (today) we had an appointment.

OT was NOT a great success. Nolan literally fell asleep in the high chair as our OT was trying to evaluate him. (PS: Nolan is not the biggest fan of OT because he is NOT a fan of eating by mouth!) So, Kim, our OT did what she could and we decided to call it quits. WELL, about 20 minutes later our PT, Elizabeth, walks in and he automatically wakes up. When we got over to the room he was ready to play and roll for her and Lauren (another PT). Such a faker. :) We'll get him Monday. Over the night Nolan threw up a few more times. I ended up stopping his feeds over the night for about 45 minutes because I almost thought he was too full.

This morning we had to be to the lab by 7:30 am. Because he had a picc line in, we need an IV team to come and pull the draws, flush and lock it. Well, the picc line was clogged (probably by little clot in the line). Good thing was they could push fluid through, they just weren't getting a blood return. Because of that we needed to get TPA pushed through the line to break up the clot. To do that we had to go to the ED because that is one of the areas they can administer it and a doctor needs to be there. SO, we headed to the ED and got it taken care of and our labs drawn. We also had a clinic visit today with Dr. Lal and to see our transplant coordinator, Alice. They were also concerned about the continued vomiting, so they had me come to the cardiology clinic after we were done at the ED. While we were there he had an

echocardiogram and we met with Dr. Lal and Alice to come up with a game plan. We ended up having to make some adjustments to one of his antirejection levels and we brought down his continuous feeds at night. I think those were the major items changed. The rest of the day we spent at the Ronald McDonald house. He continued to have a few more vomits, so we were told to give him some Pedialyte for one of his feeds. Since then he has not thrown up and he is back on continuous feeds through the night. Hope it is a quiet one.

That is really what the last few days have been like. Just trying to figure it ALL out. I am tired. I am feeling a little down, but at the same time so happy! Things are going OK, not great...not bad...so, I can't be that upset. He is truly very happy and easy. I just feel so bad for him throwing up. I am sure we will get it all figured out...we are all just anxious about LIFE and what it will be like down the road.

I am really, really tired. Matt comes tomorrow. I may be staying here until Wednesday. It's a two person job right now until everyone feel comfortable. Matt's mom will be here Wednesday through Friday morning next week so Matt isn't alone.

Thank you all for the prayers and support. Definitely needed and for our other friends at CHP.

#nhos