Dear Son Update-Almost Home!

Things have improved since last Thursday. Dear Son is breathing on his own as of Saturday afternoon, although he had a little relapse Saturday night and needed more oxygen for a few hours. As of Sunday, he was breathing well on his own, without any distress. His oxygen saturations are around 94-96 now, which is much better.

This is a picture of the bathroom in the hospital room. In every room, there is a series of four tiles that depict children's artwork. The artwork was done by former pediatric patients at the hospital. It is one of my favorite parts of the hospital, because it always brings a smile to my face. Any time you use the washroom in the room, you see these charming images.

Friday was a rough day. The Neurosurgeon was refusing to see me and they were jerking me around. Things came to a head on Saturday morning. I think we have things resolved and I'll share the story when I have a more time. He hadn't come to see me in over two weeks and in light of this ordeal, I think it was appropriate that we have a conversation surrounding this surgery.

Here is a picture of one of the tiles from the series above. It made me laugh.

On a better note, I had the consultation with the Pulmonary specialist Ped Neuro Doc recommended. She is the Section Chief of Pediatric Pulmonary Medicine here at Big Academic Medical Center. She had been here over thirty years and is quite good. She examined Dear Son and talked to me about his lungs. Going forward, we won't need any oxygen or chest pt for Dear Son at home unless he gets to the point where he is coughing and has congestion at baseline (meaning when he's well and it's not due to surgery, like it is now). I am relieved about that. I just need to raise his bed when he's lying, sleeping or feeding and keep him on his right side until he can tolerate lying on his left side. He had some issues lying on his left side due to the fluid in his lungs. She also increased his chest pt and nebulizer treatments to every six hours, up from every four hours.

On Saturday, they did a chest x-ray which was much improved. Both lungs look a lot better. Even though it hadn't been officially read, you could see the improvement. Aside from the x-ray, I can tell by just looking at Dear Son, his breathing is better, his color is better and he wants to get out of bed. Yesterday he started crying when he wanted his diaper changed (just urine) and he's never done that before. I couldn't figure it out until I saw him turn his head to see if the nurse was coming over by him. When he fussed some more, she took her hand and stroked his head and told him she had never seen him cry. He smiled. I think he just wanted her to pay attention to him. A sure sign he's getting better!

Ped Neuro Doc has just been outstanding as usual during this hospitalization. What makes it good is that he knows Dear Son so well and really oversees all of his care. In this case, he functions as our primary doc and does the role of the pediatrician and neurology. Without him, Dear Son's medical care wouldn't be as good. Instead, when these things happen, the docs would just be treating the medical crisis at hand, versus looking at the entire patient and his history, if that makes any sense. He has the ability to step back and look at the big picture for Dear Son. He'll talk about what it means now, what we need to do moving forward and looking back, what we can learn from Dear Son to help other pediatric patients. It's no wonder, he's a favorite of the patients, their parents and the hospital staff.

On a more exciting note, Dear Son's bed is finally finished and ready to be shipped. Gary Owens, inventor and owner of Tendercare Beds, graciously offered to make Dear Son a hospital bed. I've written about it a few times before but if you haven't seen it, be sure to check it out. He makes headboards and footboards that slip on right over hospital beds so the your hospital bed looks like a regular bed. They are just beautiful. I post pictures of it once it arrives.

Thank you for all of the prayers, comments and support. It looks like Dear Son will be released tomorrow, if all goes well. Today, he is getting a 24 hour EEG. If that looks good, we can go home tomorrow. Ped Neuro Doc wanted to keep him over last weekend to give Dear Son more time to recover. Dear Son's been having some seizures, some of which are started from the chest pt. When they turn his vagus nerve stimulator after the surgery, they have to start the settings out low and then increase them slowly. We know the settings were too low, hence the seizures, but we have to go up gradually again and this takes a while. Since the battery was depleting on his old vagus nerve stimulator, they had to keep increasing the settings to compensate for the depletion. When they get the new one, they can't start it where they left off so they have to start lower and work their way back up until they get it to a point that controls most of his seizures.