Dear Son Medical Update #7

Since my last post, Dear Son has fluctuated quite a bit. After the vent tubing was removed, he had repeated issues with desaturations while on the high flow nasal cannula. On Tuesday afternoon, he crashed again and desated around 80 or so (you should be around 95-100). At that point, they removed the nasal cannula and put on the non-rebreather (sp) at 12 liters of oxygen. In addition, they increased the pulmonary toileting, as it's called, to every two hours. Essentially, they do the therapy vest, the cough assist, chest pt and the nebulizer treatments to help open up his airway and lungs. He crashed again at 4 a.m. today but was stable after that.

I spoke with the Attending Physician this afternoon and it appears that we will probably be in the ICU another week or so. Dear Son needs to come off of the non-rebreather before they will transfer him to another floor.

They are working on decreasing the pain medication that he was on while on the ventilator. Because it's a controlled substance, they need to wean him off the medication slowly.

Dear Son has also been losing a lot of weight. He lost 22 pounds in two weeks. The swelling has been eliminated with the Lasix so I asked if he still needed it. They discontinued it today.

He started feeding yesterday. He is on continuous g-tube feedings at 25 ccs an hour, which isn't very much.

The good news is that he opened his eyes today. I think today was the first time that I felt good about this admission. I actually felt he wasn't going to die and would recover. While the doctors thought he could recover, I can't say I was really convinced in light of the issues he had this week. I had been a little jumpy all week worrying they might have to re-vent him. I honestly don't think I could have made it through that.

On Tuesday, I contacted the Director of Nursing regarding the sores behind his knees and the other issues. She checked out the wounds and had wound care do an evaluation of his issues. She'll follow up with me later this week. I think we are moving in the right direction.

So in summary, Dear Son has been in the Pediatric ICU at Big Academic Medical Center since November 1st with the swine flu and a viral pneumonia. The swine flu has run it's course and Infectious Diseases has completed their course and now we are simply treating the viral pneumonia. At the present time, they are:

• Weaning him off of the pain medication.
• Continuing pulmonary toileting to clear his airways and lungs.
• Treating the wounds.
• Continuing g-tube feeds very slowly.
• Continuing the non-rebreather at 12 liters of oxygen.

Overall, this has been a pretty rough hospitalization for him and for me. I was so terribly sick the first two weeks he was there and now am feeling a bit better. I was also terribly depressed thinking he was going to die and that I wasn't going to see his eyes and smile again. I worry that with all of the pneumonias he has had, that one of these times, he won't make it. The good news is that I have really good doctors taking care of him. Ped Neuro Doc in particular has really done a nice job and is always really optimistic. It really helps when we are here that he takes the time to see Dear Son even when we don't have a seizure issue. It makes a big difference during times like this.

I probably won't post again until Sunday but do appreciate all of your thoughts and prayers. I just came home tonight for two hours to pick up some things and then I need to get back to the hospital by midnight to give him his seizure medications.