Tuesday, July 20, 2010

Saturday, July 17, 2010

Wednesday, July 14, 2010

11 Months

Unfortunately, James celebrated his 11 month birthday in the PICU (it was Sunday). We decided not to document this hospital stay with pictures, since it's one we would rather forget. James is doing well though. We are scheduled to go home later today.

The whole trip this time has been a little disheartening since by the end of this week he was supposed to be released of all of his specialists (besides his in-home therapists). Now his case has been reopened with cardiology, surgery, and the speech therapy team at CHP.

The Echo James had came back normal, but he has a PDA. This is a small hole that newborns have that typically close on their own by now. James' is not completely closed, but they are not concerned about it at his age. However, he will have to have some follow-up done in a few months.

Surgery wants to see him again in a month to make sure there are no more episodes like the one over the weekend. There concern is that it was caused by reflux, so they want to do what they can to prevent that. James is already on Prevacid. He also can't lie down within 30 minutes after a meal.

James' swallow study was the same at the last one. He aspirated the tiniest bit of liquid and had a delayed swallow. They suggest thickened liquids again and pureed baby foods for now. The speech team wants to do a repeat swallow study in a couple months to check on his progress.

James' developmental progress if coming along. He rolls all over the place now, especially in his bed. He quite enjoys sleeping on his tummy now. He can sit on his own unsupported for about 15 seconds right now and then he falls backwards, so there's no sitting without someone close by. He is enjoying his exersaucer now and loves toys that make noise and light up. Dave and I are very excited for his one year birthday, although now more than ever, we are still unsure of what we are going to do to celebrate it. I think pudding might be in order though.

I'll post some happy picture once we get back home.

Sunday, July 11, 2010

ER Trip #5

This weekend marks James 5th ER trip since the beginning of May. This was by far the scariest trip ever. Shortly after dinner Saturday evening James got fussy because he wanted picked up. My mom, who was visiting, picked him up and we noticed that his cry was off so I took him from her to try to calm him down. At this point I noticed that he was turning blue. At some point he must have aspirated some food left in his mouth or some saliva because he couldn't catch his breath. We did back thrusts and my mom took over (yay for a mom who is trained in infant CPR) as I called 911 and Dave ran down the block to the police station. My mom gave rescue breaths which finally caused a response from James and the ambulance arrived shortly there after. He was rushed to the ER at Sewickley Hospital (about a mile from our house). Once in the ER, they started bagging James immediately and he then he began to return to himself, although he was exhausted from the whole experience. The Sewickley Hospital decided to have him transferred to Children's of Pitt because of his history. Since he had to have CPR, James and I got to fly by helicopter to Childrens. By this point an hour had passed and he was back to himself (Thank God!). He seemed to quite enjoy the ride.

When we got to Children's we waited in the ER for several hours while they got a room ready for us. They wanted to admit him to observe him for 24 hours. Once we got up to his room, James was having a low resting heart rate which concerned them. This is when they decided to transfer him to the PICU for closer monitoring. Overnight he had 2 EKG's, a few chest x-rays, some blood tests, and virtually no sleep (as the tests went on until 3 am). All of the overnight tests appear normal. The ICU docs want to monitor him for 24 hours in the ICU and they had an Echo cardiogram done (we don't have the official results of this one yet, but we are expecting it to be normal). Once the ICU docs feel they have ruled out everything, then James will most likely be moved to the surgical floor for a few more tests, including a contrast study and a swallow test.

The docs are pretty sure it was a bad case of something down the wrong pipe, but because of his history they want to rule out all other cardiac, neurological, and GI possibilities. We will probably be in the hospital until Tuesday. Please pray that this was just a fluke and nothing else is going on with James. He is tired and hungry (he's not allowed to eat until all his tests are complete, which could be a few days), but doing okay other than that. Hopefully tonight we will all be able to get a full nights rest.

Thursday, July 8, 2010

Fun with Cousins

We had a great time with our family over the long holiday weekend, especially once James' tube came out!

Cole, Annie, Bennett, and Olivia had fun times in the front yard with the daisy sprinkler and syringe water guns.
James had fun watching from the porch.
I thought he looked handsome in these overalls that used to be Bennett's.
We all had a great time at the pool celebrating being tube-free!
Sparklers are always a hit.
How many people can you fit on one couch? Cole joined the party shortly after the picture was taken. We were definitely cozy!

Sunday, July 4, 2010


Just a quick 4th of July post to tell the whole world that James is tube-free for the first time in his life!!!!! He will be 11 months old in one week. We have been weening him off it for 10 days now, but today I noticed that the tube was not working properly. We had to take him to the ER. He had managed to pull it out of the track, but not all the way out of his abdomen. It was odd and not at all comfortable for him. The on-call surgeon we saw in the ER agreed that it had to come out and a replacement wasn't necessary since James is doing so well on his oral feeds! It was the fastest and best ER trip ever, and hopefully the last time we will see the inside of Children's Hospital of Pittsburgh.

Right now James just has a bandage over the site. Most j-tube stomas will close on their own in a day or two. We will go see a surgeon in a week or so to have it checked to make sure it closes properly. There is a slight chance he might have to have stitches then if it doesn't close on its own.

We are so excited to have the tube out. We are celebrating by making James' first trip to a pool with his cousins tomorrow!