Charlie's Hospital Stay Starting on January 20,2014

On Monday 1-20-14 Charlie got sick with what we thought was a stomach bug.

He had stuff coming out of all ends and had a fever of 101.

Most kids would not have to go to the emergency room for one day of the all of this, as most of you know Charlie is not "most kids". So off to Amplatz Children's Hospital we went. They almost did not admit Charlie but right when they were going to send him home he threw up his medications in front of the Dr.

We were told he would be there over night and then most likely get to go home...

A few days passed and they were still not letting Charlie come home, in that time they had told us he has the virus RSV, but RSV shouldn't keep him in the hospital. We were confused and a little annoyed that we were not able to go home because we wanted our little guy back home. I can't quite remember what day it was but they finally told us why they were keeping him so long and it wasn't because of Charlie's RSV it was because of Charlie's kidney's. Every time they drew blood and tested the blood it was showing that Charlie's kidney's were failing more and more by the day. They were drawing blood twice a day and each draw his kidneys were getting worse. The Dr. told us that Charlie needed to start dialysis as soon as he could. So they set up surgery for Friday the 24th as it turns out Charlie was to sick with the RSV to get general anaesthesia so they decided to put a central line in one of his arteries in his neck so they could give him some medications that are a little much for a regular IV to handle also so they could draw blood from the IV and not have to poke him all the time.

This also meant that Charlie had to go down to the ICU because the Medications needed to be closely watched. Friday, Saturday and part of Sunday Charlie was on oxygen because of his RSV. 

The Dr. also told us that Charlie will not be on dialysis long because he will need a kidney transplant soon. We had genetic testing done on Tuesday the 22nd and that takes about month to get all of the results back. Once we have the results back we can start looking for a kidney donor and get a transplant as soon as we find a match. Once he gets his transplant he could be in the hospital anywhere from a few days to a month after word depending on how well his body takes the new kidney. In most cases they leave the old kidneys and add the new one but because of Charlie's disease they need to remove both of his kidneys. Something else that we learned is that kidneys do not last forever and Charlie will have to have more then one transplant in his life. 

Monday a week into our hospital stay Charlie had a 1:00 appointment to get his dialysis catheters put in. We were told two different times on Sunday so we were not sure what time it would be but it turned out to be 1:00pm and not 8:00am. 

So Monday morning Charlie's Dr comes in and tells us she wants to put in a PD catheter (the one we chose to do) and they might put in the HD catheter (the one we didn't want) if the PD didn't seal up right away during surgery. We agreed that if the PD didn't seal up right away and couldn't be used right away that the HD could be put in. At this point we thought it would be up to the surgeon on the operating table. Well before the surgery the surgeon came in to talk to us about what he was going to do and he told us he was putting both catheters in. We said wait a second we were told it was only going to be both if the first one didn't seal on the operating table. It was poor communication on Charlie's Dr.s side as it turns out. So Charlie ended up getting both catheters put in. On the down side the one Jeff and I did not want put in was off a little bit and didn't work well, so the Dr.s decided they wanted to fix it because the PD wasn't working fast enough for there liking. We were not a fan of the idea that Charlie might go under again to fix something we didn't want in him in the first place. We ended up getting them to wait till today and they decided Charlie's labs were going in the right direction fast enough that they didn't need to put him under to fix the HD catheter. We were so excited.

Right now Charlie is on manual dialysis till they can get him up to a number that is ok to start using the dialysis machine. He is on 24 hour dialysis to start and they have to do it manually every 30 minutes, because of that we are still in the ICU and will be till charlie can go on the PD dialysis machine. Once he is on the machine we can move to a regular room for our training in PD dialysis. Once we are trained we will be able to go home and start doing dialysis at home. 

Once we are home Charlie will need to be hooked up for dialysis for 12 hours a night, my guess is 8pm-8am.

I hope this up date helps you to understand a little bit of what we are going through right now. I am also due to have a baby in February and Charlie's big sister Natalie is spending a lot of time with her grandparents. 

This is hard on all of us so please don't take it personal if we forget to respond to messages of any sort. 

Thank you everyone for all your prayers and support.