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.

I don't take Ambrose out very much as I worry about exposing him to germs. Summer is his big chance to get out. We've remained cooped up too much lately due to the intense heat and humidity. I finally took Ambrose out for a walk today and we got caught in a downpour. I didn't mind but it sure did surprise Brosie.

The last time he'd been out anywhere was July 4th, when he got to go to a barbeque and parade. I've been meaning to post these pictures earlier.

Ball Pool

Well we finally got the rest of our stuff out of storage since our move last fall. This is the ball pool that was part of Sophia's Make a Wish sensory room. It is currently living in the middle of our living room floor along with the slide ( the only way to make a proper entrance into the ball pool of course.)

Ambrose holding Sophia

This wonderful photo was taken by Ambrose (and Sophia's) nurse Rebbecca. This is Ambrose's lovely little hand holding "the Sophia necklace." It is my special necklace that contains some of Sophia's ashes. I only take it off when I shower and then Brosie holds it for me. The rest of the time I wear her right over my heart.

Father's Day

O2 break

This afternoon while Brosie was napping I tried taking off his oxygen as he was satting 100 on just a whiff of O2. He satted 93-96 for 45 minutes. This is quite remarkable as he is totally O2 dependent. When he woke up he needed to go back on.

Scrabble

Yesterday, James and I played Scrabble. Despite the fact that he was leading me by over 100 points, I instantly won the game by spelling the magic word: "Ambrose."