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.

The Last Few Months!

In October 2013 our son Charlie started to get a little swollen so we decided to take him to the Dr. to see what was up.

The Dr. had some blood work done and decided that Charlie had hypothyroidism, so we started treating that with some medication. After a week or so on the medication and Charlie getting more and more swollen we took Charlie to the Emergency Department (ED) at The Children's Hospital in Minneapolis. After many different tests is was decided two things one that Charlie was going to be admitted and two that Charlie has some sort of Nephrotic Syndrome. 

Nephrotic Syndrome is a sickness of the kidneys. There are a few different kinds of Nephrotic Syndrome and because of Charlie's age they thought it was Minimal Change Disease. They treat that by giving steroids and it should clear up within 6 weeks. Three hospital stays later the 6 weeks was almost up and Charlie was not getting any better. December 11th it was time to do a kidney biopsy on Charlie. We got the results on the afternoon of December 12th...

December 12th

The Dr walked in to give us the results of Charlie's biopsy our good moods quickly turned to heart break and sadness.

We were told that Charlie has a very rare disease that he has had since birth.

The disease is called  Diffuse Mesaginal Sclerosis.

There is not much information on it as it is so rare. From my understanding it is a genetic disease that in our case is most likely a result of our combined DNA. The hospital we were at U of M Amplatz Children's Hospital which is world renowned for paediatric kidney diseases has only seen what Charlie has 6 times.

At the time of the biopsy Charlie had 30% scar tissue in his kidneys, that is irreversible. The Dr also said that Charlie will need a kidney transplant by the time he is 3 years old. When we got the news Charlie was 22 months old, so two months shy of two years old.

Since that time we have been getting blood work done on Charlie twice a week. Seeing his Dr. once a week and talking to Dr.'s or nurses almost daily. We have been trying to get the correct medication cocktail with it changing a little here or there every week. Charlie currently is on around 13 different medications daily and most are 2-3 times a day. Since his first hospital stay in November Charlie has regressed to the point where crawling was a struggle and walking was out of the picture. He is crawling more and more every day and holding our hands to help him walk. We are so proud of him! It is some times hard to think that a few months ago you couldn't slow Charlie down if you wanted to. He was running, walking, climbing and getting in to everything, then it changed so fast.

Every day we are grateful for our kids!

Natalie has been amazing through all the hospital stays and changes to our lives. It is hard for her that her little brother is sick and that he can't keep up with her any more, but she helps out so much every day. and tells people they have to be careful because her brother is sick. She doesn't understand what Charlie is sick with she just knows that we get to give Charlie lots of medications and that Charlie goes to the Dr.'s office a lot. 

Charlie is also on a strict renal (kidney) diet, he is only allowed 24 ounces of fluid a day, 2 grams of salt a day and he is restricted on potassium and phosphorus. This makes our day to to day meal planing challenging. 

Some of you may or may not know that I am pregnant with our third child.

He or She is Due at the end of February. Both kids are really excited for a new sibling. We are praying that this baby does not have what Charlie has because we were told that there is a one in four chance we will have another kid with the same disease.

If you have any Questions please ask in the comments. 

There is so much more info but this is all my brain can handle for tonight.