Aaron's Hyper IgM Journey

Thursday, February 28, 2013

A Good Trip to Cincy

Finally we had a trip to Cincinnati without any problems. Aaron's treatment went well and he spent a lot of time with his favorite nurse Carol.

We found out Aaron's belly problem is pneumotosis. Gas is trapped in the walls of the intestines. They will not treat him and it should go away on its own in a few weeks or months. We just hope the gas bubbles don't burst or else we would have a huge problem (sepsis).

My heart was lifted higher than ever Tuesday evening. My BMT Mom friend, Kasi, was also at the RMH with her son Kohen. The boys were transplanted a couple of weeks apart. Aaron saw Kohen and smiled and laughed. They compared what was on their clothes (Aaron had a train shirt he was showing off and Elmo pants). Then Aaron chased Kohen around the RMH. He referred to Kohen as his little friend. This is Aaron's first friend and playmate besides his sister and cousin. This is also the first time he has seen a child without screaming at him.

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Sunday, February 24, 2013

We made it

I had no doubt we would find a way to get to Cincinnati.  I can't think of anything that would stop me from getting Aaron his treatment.  However, I didn't know how we would make it...

My car has been in the shop three times in the last week for three different issues.  I feel like every time you bring a car to be fixed, you end up with another problem (or two or three).  Friday my car gave me trouble again and the mechanic said I needed a new computer and the closest one available was in California.  There was no way they could fix the car for awhile.  I tried so hard to be strong, but I broke down in front of the mechanic.  We were supposed to leave the next morning to drive to Cincinnati.  The mechanic was so sweet and even offered to drive me home, but that didn't help with getting Aaron to Cincy.

Michael and I looked at all options including renting a car and buying a car.  We finally settled on buying a cover for the bed of Mike's truck and taking our chances with his clutch that needed to be replaced two years ago.

We made it!!!!!  Aaron will get his treatment and I pray we make it home safe.

Aaron's gvhd has been great.  Slight flares and gone the next day.  His bigger issue right now is that his belly is so swollen, he looks like a he is carrying a basketball under his shirt.   I am a bit concerned and have emailed the doctor.  I am anxious to get to the doctor tomorrow.  As always, his spirits are great and he is a perfect sweetheart.  Barely made a fuss the whole ride up.  His only complaint was that he doesn't like when Mom drives because he wants Mom to sit in the back with him.

Monday, February 11, 2013

Fainting, car problems, line infection

Just when things were looking so good, we got knocked down again.

Friday, we were supposed to leave Cincinnati by 11am to head home after his treatment.  However, he fainted during photophoresis and the nurse pressed the staff emergency button.  I have never seen so many doctors and nurses gather in one room before.  Aaron was completely white with plummeting blood pressures.  He recovered well after some time.  I was not overly concerned, but they took blood cultures and gave him an antibiotic for good measure.  When finally hit the road at 2:30 to go home to Orlando.

Just before getting to Atlanta, we were stopped on the interstate due to an accident for two hours.  During that time, my car decides to rebel on us and stops working.  Michael pulled over on the side of the road at 9pm and  checks it out.  Thankfully, he got it working well enough to continue driving. 

The next morning we got a call at 9am from Aaron's doctor saying that the blood cultures are growing a bacteria and that we need to head straight to the ED for more testing.  For the 6 hours it took us to drive home to the local hospital, I was a mess.  Panic, fear, sadness, anger...  Thankfully I had an audiobook to listen to for some distraction. 

Aaron is now admitted to Nemours hospital where he is fighting a line infection that has spread to his blood stream and a low hemoglobin.  He may require a blood transfusion in the next day or two if things don't straighten out. 

So much for my long awaited one day off every two weeks.  The good news amongst all the bad is that the doctor says of all the infections he could get, this one is the best.  It is very responsive to antibiotics.  Hopefully the infection clears soon.  Otherwise, he will undergo surgery to have his lines removed. 

I think this is the scariest thing that has happened (accept when he almost died of PCP pneumonia).   The problem is the potential of a blood infection to turn to septic shock is terrifying.  Unfortunately, I do not have enough energy to worry as much as I should. 

I must stress that Aaron is truly a gift from God.  He is so happy and funny and loving.  NOTHING gets him down.  As long as he has his trains and his iPad, he could be anywhere in the world.  He laughs and plays.  He does not scream or get angry.  No matter what life throws our way, this kid is happy and his strength pulls me through.

Wednesday, February 6, 2013

Just don't have time

We started a new chapter in our lives when we brought Aaron home last month. The drive home was great. My Dad flew up from Arizona and drove with me to Orlando. He wouldn't let me drive at all. I sat in the back with Aaron. We read books and laughed and played. What a treat for us. Thanks Dad!!!!!

Aaron has been thriving at home. He is getting accustomed to having a nanny while Mom and Dad are working. Tabi, the nanny is wonderful. She is doing crafts with him every day (something mom is not good at).

The two things that I feel Aaron is lacking are preschool activities and socialization with other kids. Tabi is doing a great job with the preschool activities. We got the green light to let Aaron play with his cousin. Hopefully Aaron will play nice.

Lately Aaron is too busy. He no longer screams at people "I DON'T SAY HI!". Now he is slightly more politely and lets everyone know "I am too busy to say hi!".

So far we have made two trips back to Cincinnati. Aaron's skin looks better than ever since transplant. He has lost two pounds which is also great. He did contract norovirus and C. Diff. this past month. He has had some vomiting and diarrhea. We had to switch from oral to IV meds but are now back to oral.

Although Aaron has been thriving, his parents have been suffering. We also contracted norovirus. With the driving to Cincinnati every other week, we are working almost every day we are home. We are exhausted!!! The doctor just told me today that Aaron can come back every three weeks instead of every two. I also found out from work my schedule will be changing and I won't be working six days in a row anymore. This will help a ton and maybe we can enjoy being home more as a family.
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