Rough Days Can Lead to Better Days

Yesterday started off a little rough. We had to be at the lab at 8 am so he could get some blood cultures drawn to see if the infection he was being treated for (the 6 week IV antibiotic) was gone. He had to get draws both from his picc line and peripherally (from an actual poke into his skin). Good sign was that they got his vein on the first peripheral draw which shows that his veins are getting better. Maybe we can get rid of the picc line soon!

Throughout yesterday morning Nolan threw up probably about 6 times. We were in contact with our doctors during this time. For one of his bolus feeds we gave him pedialyte instead of formula. He kept everything down during that time. Matt got here around noon and my mom left shortly after. For his noon bolus feed we went back to formula. He still seemed pretty lethargic, so we called the doctors (again!) and they were going to meet us at the ED at 2. From about 12:30 - 1 pm he seemed to turn a corner. His energy came back, smiley, bubbly...so, we called and let the doctor's know we were going to hold out. Since then, he has been great. Maybe one or two small throw ups, nothing major. He seems...healthy! Not sure why there was a 24 + hour stretch of throw ups and low energy. He did have a lot of blood draws, this was the first 24 hours without any sedation meds (withdraw?)...whatever the case may be, he seems to be back to his happy self.

Last night he went to sleep around 8 pm. We had a wake up call around 2:30 am...but he was back to sleep around 3 am. Then we all slept until his 8 am meds! Matt and I went through his 8 am meds quick, got his formula made for the day, pushed is 9 am meds...we worked well together and I think we have a system down. Now we have a relaxing day ahead of us. We can catch up on work, play with Nolan, basketball is on...all we are truly missing is our Riley Roo. But, I have some confidence that this week we may have news on how much time we have left at CHP. We are lined up with a pediatric cardiologist at Children's Hospital at Hershey (who we were actually originally with at Hershey when this all started) who will follow Nolan at home. I believe we will come to CHP for biopsies and check ups throughout the year(s) (and as far as I am concerned any other surgeries he may need in the future)

So, now Nolan just went down for his mid-morning nap. When he is feeling good he is really a great baby boy. Puts himself to sleep...it's great. :)

More later! Thank you all for the continued prayers and support - and we hope you all have a great Sunday!

#nhos