Wonderful videos of Brosie at play

Please note the yellow submarine jamies.

Tom's Diner Part 2, 11/24/10

Hey I just noticed we are now at well over 10,000 hits. Yeah! Thanks everyone for your interest in my darling boy!

Cheeseburger in Paradise

Ambrose dressed as a cheeseburger for Halloween. I cannot take credit for making the costume, it is from Old Navy.

Wow! November already!

I cannot believe I didn't make a single post in all of October. Pathetic! Yes, I am very busy, but that is unacceptable!

My darling Ambrose is doing well. He is up to his old tricks of staying up all night, being cuddly, looking cute, a kicking like a madman. He is using his hands a bit more.

One exciting things is that I was contacted by a recent graduate of Dartmouth Medical School. She met Ambrose and I last year while she was working with Ambrose's neurologist. She is now writing a paper about Taybi-Linder syndrome, focusing on the neuroogical aspects. It will include a case study of Sophia and Ambrose. I am very excited as NO ONE has been doing anything about this syndrome. It is so unknown and it seems that no one is interested since the geneticist who it is named for retired many years ago. She asked me for pictures and I have sent several that show their unique features but also show them to be human and special and not just clinical case studies. I hope that comes across some how in this paper.

I still can't figure out how to get more that 5 pictures to post, so I will add another post.

At last...a new post!

Well....Brosie had appeared to be getting better after that last post but spiked high fevers (104.5) again, had a bad rash around his trach (from the antibiotics), and increased O2 needs. He went back on the vent and started Amoxicillin. I took a trach culture and the doctor took a culture from around his trach. Both grew the dreaded MRSA (antibiotic resistant infection) and the trach also grew Hemophilus influenza. He switched to Bactrim for another 10 days.

I was very stressed, thinking that perhaps I brought this home to him from work. I went to the doctor, as I had a bad cough for weeks. I got tested for MRSA and do not have it. I was very glad that I did not give it to him. I suspect he got it on his last hospital admission. He has gotten hospital acquired infections there before: the Norwalk virus, when in the Intensive Care Nursery, and C-Diff, when in the PICU. Sophia got urosepsis in the PICU. She nearly died.

The good news is that he finally seems better!

Isn't this the greatest picture!

It is hard being away from Ambrose so much now that I am in nursing school and working. Fortunately we have found another excellent nurse at last! Ambrose is loved and adored by his nurses: Cheryl, Cynthia, and Rebbecca and we are very thankful for them!

Much Better!

Ambrose has been on the trach collar (OFF the vent!) for 12 hours and doing great! (About to go back on for the night. I guess we're back to night use only. Horray!) He's still up on his O2 but will take a while to get back down. Just finished his last dose of Cipro.

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.