Two steps forward and two steps back makes it about a break even kind of day for Peter. He had a horrible night to say the least. Dry heaving, really angry, tossing around, hitting, unable to settle down and demanding huge quantities of milk. There was little to comfort him. Finally around 5:30am he wore himself out and we were able to somewhat sleep from 5:30am – 9am when he woke him his normal angelic self and ready to snuggle. I was worn out and exhausted from the possessed version of Peter I had during the night!
The morning seem to be progressing well – he actually ate yogurt for breakfast with a little coaxing. His oxygen needs were dropping until we were able to take him off. Step forward number one! Then based on his enthusiastic drinking through the night, we were able to turn off the IV fluids. Step forward number two! He enjoyed the freedom that came with less tubes and was in a good mood. He relented on Clifford until 2:15pm – so that was a record. Instead we played with toy cars that rapidly progressed into Peter throws cars, Mama picks them up. Then lots of time playing on my phone and checking out pictures of his siblings that he misses so much.
The afternoon was a treat at many levels – not only did all the kids come to visit him, but he was so happy to have his buddy Thad come to visit (thank you Mindy!). Peter and Thad like wrestling and to not let that moment pass – Peter put him in a headlock. Thad may be a bit younger than Peter, but he is a really good sport about it all and plays well with Peter. G loves him too – often calling him Thaddy which sounds like Daddy…..makes me laugh every time!
Overall Peter was pretty happy today which is good. But, he was unable to keep his saturation levels steady so had to go back on oxygen. And, despite a great night for fluids – even with all the coaxing today didn’t drink enough to stay off of the IV – so he is back on it. It is awfully disappointing, but for now, we are thankful his fever is under control which should be a precursor of improvements. His labs were not good today, as we had expected, and his ANC dropped further. Hoping it will pick up here soon and he will be closer to coming home.
With all that said – Peter needs to have 14 days of IV antibiotics which means that even if he gets discharged he must remain “accessed” at the port and we will administer the IV at home. It also re-affirms that Peter can’t make the trip to Montana as he is just too fragile. Still waiting for a call back from Denver regarding his port – and while signs would indicate there was bacteria colonized in his port – the status of his lungs is too weak to put him through any surgery at this time. That will be re-assessed in a couple of weeks. However, it further reinforces the need for the IV antibiotics through the port to fend the bacteria off. Or that is what I gathered in parent terms on little sleep this weekend.
So all in all probably a few set backs in the last day – but still a significant improvement over when we arrived Thursday. We are optimistic Peter will be home sometime this week – and he and I will stay put in Colorado while John takes the rest of the kids up to Montana. It is heart breaking to miss another planned family vacation – but I am hoping the kids will have a great time and create memories together. If all goes well Peter will be my helper on a few de-cluttering projects around the house.
John is spending the night with Peter as I need to work tomorrow – praying that they have a peaceful and healing night!