It is Friday evening in the PICU. I am curled up in bed with Jacob. We have a stack of books to read before bed time. We are then hoping for an ok night. Jacob has shifted his days and nights, since the PICU never sleeps. He is receiving vest treatments and suctioning every 4 hours around the clock. Then there is always a medication or feeding pump beeping or god forbid the pulse ox. Jacob typically catches a few hours of sleep before midnight, and is then ready to start his day around 3 am. There is no understatement that mom and dad are sleep deprived by now.
Jacob has been doing a little bit better the last two days. His secretions are better during the day, not close to baseline, but better from a week ago. He has been able to sit up in his wheel chair the last two days, which is something Jacob has enjoyed very much. That bed gets boring for anyone after 10 days straight! We don't know why, but as soon as the evening comes around he has excessive secretions. This makes it very hard for our boy to rest.
We were supposed to move up to the floor today, which means a step closer to getting home. Unfortunately, the floor is full! No bed available for our boy. We are hoping one will open up tomorrow, but in general there are less discharges during the weekend. Joakim and I have gotten pretty good at predicting Jacob's discharge dates by now. With how Jacob is looking, and with the IV medications on board, we were hoping for a discharge Sunday, at the latest Monday. We are hoping us staying longer in the PICU won't lead to a longer hospital stay...
In the middle of us all getting pretty done with this hospital stay, we can't thank you all enough for your visits, dinners, goodies, cards, phone calls, texts to check in on our boy and the rest of us!
Since we had our first snow fall in Denver today, it is timely that Jacob received two hats this week, both from two of our Mito moms.
Jacob is ready to cheer on the Broncos! Gosh he was puffy this day from too much IV fluids.
What about a customized Colorado crochet hat with a "J" in the back?
Today, Jacob got a special visit. His speech therapist Brittany came to visit him on her day off. Jacob told her that he wanted to color and play bumper cars on his IPad. And as always, he told her he loves her, but also making sure she knew he was "all done" with his talker, and wanted to play on his IPad instead!
And yes, Jacob does need a hair cut!
Cross your fingers and toes we are home next week, but more than anything that Jacob can shake his pneumonia and respiratory virus. We still have a way to go to get back to his baseline. My crew knowing my impatient soul reminds me we need to give Jacob time to heal this time.