Tuesday, March 5, 2013

Time flies..

I'm not even sure where I should begin. So much has happened in the last few months since my last post.
The holidays have come and gone. Thanksgiving was spent with family celebrating and eating yummy food. Christmas, however, was germ stricken. Parker started getting sick around the 19th of December and eventually ended up in the hospital. Not until we opened our gifts, though. Since we were a little under the weather, we spent Christmas Day at home, just us. It was actually quite relaxing. I'm thinking of starting this as our new tradition!

Just a few days after Christmas, Parker's cough took a turn for the worse. We found out that it was actually RSV. His oxygen levels were dipping into the 80's and we ended up having to spend a few days in the hospital with a nasal cannula, just to give him an extra boost to breathe.

While he was having such a hard time breathing, we had an even harder time getting him to eat. When he would suck the bottle, he was getting even less oxygen. So, we decided to put an NG feeding tube in to give him some relief.

He tolerated the feeding tube really well, so we left it in. At this point, we were still getting grief from his kidney team to get more calories in him, so this tube made his renal team happy.

Just a few weeks later, Parker ended up getting peritonitis- infection of the dialysis area. This means another hospital stay with antibiotics via dialysis.

While we were in the hospital, Parker learned all kinds of new tricks. He learned to pull himself to stand; therefore, we had to raise the rails all the way up on his crib-or "prison" like we call it.

He learned to clap. He now claps along to music and especially loves clapping for himself. Even when he is being fussed.

Once we were home and germ free for a while, his weight picked up significantly. He is now a whopping 10 kg-the required weight for transplant! We meet with the head transplant nephrologist, Dr. Veheskari on March 27th. Hopefully, he will get the ball rolling on testing.

We found out today that his spleen is enlarged. We knew that his liver and spleen would be involved eventually. It's actually part of this disease called CHF-Chronic Hepatic Fibrosis- that comes with ARPKD. The trick is they cannot tell you when the liver will deteriorate, or how bad it will be. Each case is different. The good news is that Parker's liver looks great other than being really big. We just have to monitor his spleen for now and see how fast it progresses.

Overall, we are doing really well. He is happy, usually healthy, and growing-both physically and developmentally. His therapists are proud of his progress and we are beyond ecstatic. He crawls, scoots, pulls up on furniture, and walks around holding onto the furniture.

- Posted using BlogPress from my iPhone

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