We just got back from another three days in Cincinnati. Aaron has been doing so well with his steroid wean until now. GVHD is spreading over most of his body. He is also having signs of gut GVHD. We had to go back up on steroids again. Even with the increased steroid, his skin is getting worse. The doctor also said that Aaron will have to keep coming every three weeks (we were suppose to start going every four weeks now).
I really don't know what will happen now. The doctor will have to come up with a new plan. They say GVHD will burn out in five years in most people. I was hoping we wouldn't have to wait that long. Until Aaron can get passed GVHD, he cannot get his new immune system. I am trying to stay positive, but it is really hard.
One day during his photophoresis, Aaron asked me to order him a cupcake and then he fell asleep. I completely forgot to order the cupcake. When he woke up it was time to leave the hospital. I felt bad. We had to leave our room since they needed it for the next patient. However, I ordered the cupcake and we waited near the clinic until it came. The doctor kept teasing Aaron that he was going to eat his cupcake. Aaron was mad!!! He yelled at the doctor, "don't eat my cupcake." When someone says hi to him, he usually yells, "don't say hi to me." However, the rest of that day when someone said hi, he yelled "don't eat my cupcake!"
Sunday, May 5, 2013
Thursday, April 18, 2013
Thursday, April 11, 2013
Photo is working!!!!
Aaron is doing amazing! I couldn't be happier. We have weaned really low on Aaron's steroid with no gvhd complications. Last time when he got this low on steroids, Aaron was so bad off he ended up being air flighted from hospital to hospital. He should be off the steroid in a month. This is the biggest milestone we will hit post transplant. Starting in May, we will be going to Cincy only once a month. Thank you Marsha for being the reason we are getting photo and doing great.
He still has norovirus which causes him (and me) to still be up all night with trips to the potty. Since he still has zero immune system, he can't fight this off. He has had it for three months now. He also still has the huge tummy that is not getting better. Hoping this resolves itself soon. His energy level is great, but his tummy gets in the way of his progress. He could benefit from PT and OT, but we haven't been able to work that in our schedule yet.
We have been enjoying life. My sister came for a visit over Easter and we all went to the coast. Michael is interested in sailing. We found a super cool sailing instructor for him that guarantees he will be on his own in the water after an hour.
Serena has visited numerous times. She is always a delight. We can't get enough of her and look forward to her staying with us for the summer.
- Posted using BlogPress from my iPhone
Sunday, March 3, 2013
Shaking his tailfeathers
Aaron was excited for Mom to get home. He was having a good time with Tabi, his nanny. This video made my day, my week, my month, my life!!!! Times like this remind me that this was all worth it. Glad Aaron has made it so far and brings a smile to those who know him.
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.
- Posted using BlogPress from my iPhone
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.
- Posted using BlogPress from my iPhone
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.
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.
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.
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