My little sick boy

Poor Brosie has been sick for weeks. He has had fevers coming and going for the last 16 days (as high as 104.5 degrees) and increased secretions. Then, a week in, as he was seeming to be feeling better, the nursing agency sent us a pediatric nurse with 20 years experience. After one day of training the agency insisted she didn't need any more training because she was so knowledgeable. Despite the fact that she had observed a feeding and learned that Ambrose's g-tube bolus feedings need to go in over at least 20 minutes, she dumped the entire feeding in in about a minute flat and took in upon herself to flush it with a quantity of water almost as large as his feeding, clamped off and removed the G-tube extension, before I even knew she had started feeding him. He immediately started vomiting forcefully and had prolonged desaturations into the 70s while he choked and gagged. That evening his fever spiked and he began needing more O2. (I didn't even mention the sloppy, unsanitary suction technique she attempted to use, suctioning him too deeply, and putting his trach ties on dangerously loosely. Needless to say, she will never be setting foot in my house again!)

Now he has had 5 days of Cipro (following 7 days of Omnicef) and has been on the vent around the clock for the last 5 days, with increased PEEP. (If we didn't have the vent at home he would be in the PICU for sure.)

Meanwhile I have gotten sick myself after being run down from staying up suctioning Brosie night after night and worry that I then exposed him to a new illness, started nursing school last week, and am down a nurse. Stress!

Please get well soon Brosie!

Fun in the Yard

These are some recent pics of some summer night fun in the yard.

Ambrose has been doing very well. A few weeks ago I was afraid he was getting sick. The fevers and increased secretions he was experiencing seem to go hand in hand with the 3 molars he has coming in. He still has some crying spells which break my heart. Ambrose hardly ever cries, but he can. Which just goes to show that he is generally a VERY HAPPY BOY!

Brose Videos

Here's a glimpse of Ambrose's recent activities. The second 2 feature him playing with 2 special toys that were recently passed along to him from the Momny of a special little Angel friend of Sophia's named Talia. The second one is a switch activated bell carousel, which I believe is actually loud enough for him to hear without his hearing aids. I was very excited to receive this as I had actually selected this as one of the toys I got from Make a Wish for Sophia's sensory room, but I had passed it along to someone else. Unfortunately the video cuts off before he reactivates the toy himself.