Aaron's Hyper IgM Journey

Wednesday, August 29, 2012

Double lumen taken out

Aaron had a double lumen central line put in prior to his chemotherapy in December. He had medicine running through both lines most of the time for awhile. The central line is surgically placed so that Aaron does not need to be poked each time they take blood or give IV meds. One of the lines broke today while the nurse was trying to take a blood sample.

They are unable to fix the line. This central line was placed in Cincinnati and Orlando has a different brand. If we were in Cincy, they could fix this without surgery. Unfortunately, they don't carry the parts here and therefore, Aaron will undergo surgery. This brings on a risk of infection. :(

Aaron has been close to needing a blood transfusion but has narrowly escaped this until now. His hemoglobin is too low for a surgical procedure. Aaron had to get ivig and a blood transfusion in preparation for surgery. They cannot get all of that done today.

With a broken central line (a very serious issue) they will not let us leave the hospital. Therefore, we get to enjoy a little more hospital appreciation time.

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Sunday, August 26, 2012

Skin looking better... Thank goodness

Aaron's skin became the worse it has looked since we were discharged from the hospital back in march.  At this point, the biggest fear is Aaron getting chronic gvhd.  This is usually irreversible and often deadly.  They gave Aaron a large dose of steroid yesterday in the ER and his skin is looking much better.  This is a really really really good sign. The problem is that with his gvh flare ups, we haven't been able to get him off of the immunosuppressive drugs.  He has to get off these drugs before he can recover from all of this transplant stuff and before I can breathe a sigh of relief.  

Aaron will be on a ten day course of steroids.  I am going to take this time to take a break from worrying.  There is nothing more I can do until the steroids are over.  If they work great. If not, we will be heading back to Cincy. 

There is nothing that wastes the body like worry, and one who has any faith in God should be ashamed to worry about anything whatsoever.
Mahatma Ghandi

Saturday, August 25, 2012

Another ER visit

Yes, we spent another night in the ER.   Aaron's skin has gotten worse and very quickly.  I spent an hour or so researching chronic gvh online until I was shaking and scared to death.  I believe the article stated a 50% survival rate and some possible debilitating complications in survivors.  I called Cincinnati and they wanted me to take Aaron to the ER immediately for steroid treatment. We will continue steroids for ten more days. If this doesn't help, we will definitely be heading back to Cincinnati.

I reached my breaking point and broke down. I wanted to give up and I wanted to be done with all of this. So I decided to wave my white flag and surrender.   God is just going to have to take over for awhile (I need some sleep).

Friday, August 24, 2012

Norovirus, hospitalization, and eye issues

At Aaron's doctors visit today, I told everyone happy Monday morning. They corrected me and said it is Friday. This is my life. I don't even know which way is up anymore.

Last Sunday, we took Aaron to the ER. He had low fevers and diarrhea for several days. He has had these symptoms off and on for months now. They hospitalized him and discovered he has norovirus. This is likely what he picked up when my dad was here several months ago and would explain the bouts of fever and diarrhea that come and go. He has no immune system to fight this off. Fortunately, his IVIG has helped keep it in check a little bit and someday when he has an immune system he will be able to fight this thing. This is what people catch from the cruise ships.

The positive spin on this is that now Arnold Palmer treats us like we have some deadly horrible disease and requires Aaron to be rushed to a room immediately and they wear masks and gowns and gloves. This is how a BMT patient should be treated, but no one but the BMT team seems to understand. The doctors and nurses at AP are wonderful and now we are all on the same page. Yay!

The hospitalization was three days. Aaron left looking much better than when we came. They pumped him up with fluids and a round of steroids and he looks great.

We saw the dermatologist (finally!!!). Of course, Aaron's eye looked great that day, but she saw the picture. She said it looks like eyelid dermatitis and she is not concerned. She gave us a bunch of creams to use if needed.

Finally, some more positive news. Aaron's labs are better than ever. His WBCs have been increasing on their own and Aaron hasn't needed the stimulant drug. Aaron's RBCs were on the decline as a result of the stimulant drug. He was one day away from needing a blood transfusion and miraculously the RBCs have started to go back up.

Other than the scary GVH, we have no other issues to worry ourselves about.

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Wednesday, August 15, 2012

The Plan

Cincinnati is finally corresponding with the doctor in Orlando and they are agreeing with all my decisions.  We did go to the eye doctor and they did not know what is going on with Aaron's eye.

I have taken on the role of Aaron's doctor.  I decide when he gets labs, what time of day, which labs to take, when he gets his infusions, how to treat his complications, and everything else.  I even diagnosed his eye problem.  I believe it is atopic dermitis.  This is not a life threatening issue and can be treated, but may not go away for awhile.  Aaron will see a dermatologist next Wednesday and we will see how well I am doing with my diagnosis and treatment.  It is sad that I have to take over with all his care, but my mother would be proud.

Because of Aaron's diarrhea, he is likely not absorbing enough of the cyclosporin (his most important med) to reach therapeutic levels.  Therefore, we increased that dose.  He also got a booster of steroid today.  The steroid will help with the diarrhea and itching.  These are signs of GVH and the steroid may alleviate that (hopefully).  On the down side, we expect Aaron to be raging for the next few days. 

I have gone back to work.  My days as a stay at home Mom are over.  I hate to admit it, but I am very happy to go back to work.  Today I worked in a cubicle; I put on headphones and jammed to some great music while working for 6 hours.  This was a great break!!!!  I am only working 30 hours a week.  Working allows me a much needed mental break and then I am a much better Mom when I am home.

I apologize to anyone that is worried about us after I said I was being taken to collections.  I need to clarify.  I am upset because this was Arnold Palmer Hospital's fault.  They processed the bill incorrectly and told me not to pay until it was reprocessed.  I never heard anything from them again until I got the collections letter.  We do have money in the fund to pay for this and I am working again.  I spend so many hours of my life in the hospital with Aaron, taking care of Aaron, and dealing with bills, insurance companies, hospitals, home health care companies.  I stay on top of everything to avoid situations like this.  That is why I got mad.  Please do not worry that we do not have money to pay our bills.  We will be fine.  We always find a way.  But thank you all who have been concerned for us.

Sunday, August 12, 2012

Things Are Not Good

Where to begin...

I have spent countless hours on the phone this week with insurance issues. Every one of Aaron's transplant bills were incorrect. He has a transplant contract that all of his bills must be processed through and Cincinnati did not do this. I also found out I was sent to collections over a bill that was processed incorrectly. Aaron has two insurances. Last I heard they were reprocessing the claim.

I find it insulting that I am sent to collections. My husband and I have had many struggles over the last few years. When he lost his job, I worked overtime to make ends meet. I have never in my life paid a bill late. My friends, family, and the amazing people I have never met have also donated to Aaron's foundation to help with medical bills. We have always found a way and this really upsets me.

More importantly, Aaron's healthcare is not going well. He is itching all over, has bouts of diarrhea, his lips peel off every day, he has patches of dry skin, red and swollen eyes, and his skin is several shades darker. When I contacted Cincinnati, they said I must defer back to Aaron's local doctor. The local doctor says Aaron shows no signs of gvh and that he is fine. Everyone of these things are signs of gvh. Then I tried to go to a different doctor in orlando that does BMT. Aaron was turned away due to doctors code, they won't see him unless his care is released by his other doctor.

Michael and I have made many calls over the weekend and there will be a decision made about his care tomorrow. If Cincinnati still won't work with us, we may have to drive back there to be seen or else find a new BMT doctor here to take over his care.

There are many other issues going on, but I will leave it at this. I am trying to find a positive in the mix of all this, but right now I can only say: I am thankful to have my son still with us, I am thankful to have such a supportive husband, and thankful for all my friends who keep me going.

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Monday, August 6, 2012

Back at Arnold Palmer

We are back at the local children's hospital, Arnold Palmer for our first appointment. Aaron is enjoying his YouTube videos of trains again.

Aaron is very disagreeable and has been for months. He says no to everything. A little girl was watching him get weighed on the scale.

Aaron: "go away" he says to the girl.
Me: "Be nice and say hi."
Aaron: "No! Who is that girl?"
Me: "She's a pretty little girl."

I thought I could die.

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Sunday, August 5, 2012

Train bed

Aaron is playing trains in his new train bed. He is adjusting really well to home. He has slept by himself every night without crying. Yay for Mom.

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Saturday, August 4, 2012

Welcome Home Aaron

The ride home was interesting and took us awhile to get the hang of the new routine. We stopped about every thirty minutes for the first three hours.  Fortunately, the weather was great and the rest of the drive went pretty smoothly.

When we got home, Aaron was in awe with all of his toys. He went from toy to toy to toy not knowing what to play with first.  We have been home two full days and Aaron hasn't asked to watch the iPad or TV once.  We have watched hours of cartoons every day for the past eight months. I was afraid he would turn into a kid that sits and watches TV all day.  I am very thankful he likes his toys again.   He also has room to move now.   He runs, climbs the stairs, and dances a lot.

Our lives are back to how they were pretransplant.  In fact, Aaron's immune system is worse now than before.  Aaron can't be around other people.  We do not allow visitors yet and he can't be in public places.  As long as Aaron does not have complications, he could be off of his immunosuppressive therapy in December.  This would allow his immune system to improve and our lives will slowly become normal.