We’re Home!...

Carter with chocolate chip cookie smudge

Carter's Broviac and rash

Driving home from the hospital

Well, all day the doctors and nurses had been gearing us up that we’d be going home this afternoon, but we’ve learned to believe it when we see it. Carter’s hemoglobin levels were low today, so he required his first blood transfusion. Since it would be his first one, they did it over a three hour period and monitored him closely for fevers or signs of infection. He napped through most of it, and did well.

Carter still has the rash all over his chest, and the doctors don’t know if it’s from the adhesive tape, cleaning solution, or medications. We know it irritates him though, because he does start scratching at it. They gave us a hydro-cortisone cream and hopefully it will clear up soon. Also, Carter’s eating (and drinking) hasn’t gotten better. The doctors are allowing us the opportunity to be home to see if his eating increases. We will be back in the clinic for lab work on Thursday, and will have to give the doctors an update. If Carter is not reasonably eating over the next couple days he will be required to get an NG tube entering from his nose down to his stomach. This tube will allow us to pump food directly into his stomach so he can maintain weight and nutrition throughout his treatment. We have been hoping he would eat but these chemo drugs have destroyed his appetite. The NG tube may be our only option.

Then, Matt and I were overwhelmed with the new pharmacy we have to take home with us, along with a different size syringe for each medication, Broviac changing equipment, masks, and so much more. Being at home has been hard tonight. It was easy to ask the nurses what was going on when something strange popped up while in the hospital. Now, we have to take a deep breath and decide what’s an emergency or par for the course. Carter threw up tonight and hadn’t in several days, so it caught us off guard. You just wonder about every little thing. Matt and I just need to get organized and put together a chart of when he has which medications, and lay out a clean work space to flush his IV lines every morning. It’s like bringing home a newborn baby times 1000!!! And it’s crazy in four months, we’ll be bringing home a newborn baby too! When Carter was diagnosed, a friend told me “God only gives challenges to people He knows can handle them.” He must think Matt and I are super heroes!

The good news is Carter went to sleep in his own bed just like the old days. He had a bath, got in his pjs, and went to sleep just talking to himself, as usual. Hopefully, he’ll be able to go through the night okay.

Even though we are home, we are off to UCLA tomorrow to meet with the liver transplant team! Then, two days later we go to the clinic for lab work. Then, two days after that we go to the hospital for a quick chemo visit. And next Thursday, we are readmitted for Carter’s second round of chemo for a few days. It’s a crazy lifestyle, but a necessary one! Please keep good thoughts for eating and drinking and the rash to clear up. Now that we’re home, Matt and I will have to figure out how to be as wonderful as our nurses were at CHOC. It IS nice for the four of us to all be under one roof though!