Aaron's Hyper IgM Journey

Friday, September 28, 2012

Out Of Jail But On Probation

Aaron was released from the hospital on Tuesday since he is doing well and very stable. Thankfully the steroids work for him. He is eating a ton again thanks to the steroids. He is currently off IV fluids and tube feeds. This means extra sleep for everyone. Woo hoo!

We are not out of the clear any time or any year soon. The doctors say he is showing signs of chronic gvhd and it will take six months to a year or longer to clear up. Chronic gvhd ususlly burns out by five years post transplant. They will be switching around his medications a lot over the next few months and want Aaron to stay local until he is stable on the new regimen.

Aaron is better than ever. He is really happy and enjoying life. I don't think he has been this good since before his chemotherapy last December. The doctors are amazed at how quickly Aaron recovered; they said it is rare to see a patient respond so quickly. He is happier than ever. Makes us wonder how bad he has really been feeling up until now.

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Sunday, September 23, 2012

What a Delight

I can't explain in words what a joy today has been. Mike was in town. I got to workout, shower, and blow dry my hair. I couldn't have started the day off better. Wish I could do this everyday.

Ok, this isn't really about me. I got back to the hospital at ten and we had mat time. Aaron wanted to play hungry, hungry hippos with mom and dad. A HUGE thank you to the wonderful person who recommended this (sorry I can't remember who). We had a blast. Tons of laughter. Then he played with his plastic food toys (he got them from speech therapy and will be sad when he has to give them back). He was feeding the hungry hippos. Aaron LOVES playing with food, reading about food, watching YouTube cupcake videos. So why does this kid not like to eat?

Later, Aaron wanted to look out the window and wave at everyone. He would see someone and wave at them and laugh. But that was not enough. He had to go out in the hall so he could go around to everyone and wave at them. I think my jaw is still stuck open in shock. This is coming from a kid who yells "I don't say hi!" to anyone that even looks at him.

I am so very thankful that he feels better, but I know it is drug induced. Once he goes off the steroids, we will have the same struggles as before. This kiddo still needs tons of prayers for healing gvh or as Elizabeth would say, we need to kick some gvh butt.

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Friday, September 21, 2012

Getting Better

Aaron improves every day. He even ran a short distance today. He had to run to get away from the monster (mommy). This is a game he learned from one of his nannies. He has even laughed a little.

His vital organs and blood chemistries remain fairly stable which reassures us that he is not in a critical state right now. Thankfully, we got to Cincinnati when we did and they were able to halt the progression of his gvh. He hasn't had a fever in three days and he hasn't had diarrhea in 24 hours. Yay!!!!!

We learned that he now has gvh in his mouth and possibly down his throat. All of his gvh has improved greatly since being here. He will likely remain on steroids for awhile. His body still has to fight off gvh. The steroids are causing him to eat and this will help his GI tract heal. They removed his IV nutrition already since he eats like a champ. He is getting too huge. This is not good, but we will take it any day over gvh.

Aaron is starting to come alive and he enjoys all his fun new activities. He is becoming a little more active each day.

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Tuesday, September 18, 2012

Aaron's Status

The doctors decided Aaron has mild gut gvh. They have him back on steroids and he is responding well. His diarrhea has decreased. A separate issue is that his gut does not absorb nutrients. They said that his norovirus scarred his gut allowing the gvh to take over. We are basically going back to the beginning. Aaron will be on IV steroids and then switched to oral steroids once he improves. Then we will have to wean the steroids and then cyclosporine. He cannot develop his immune system until both these drugs are gone.

His started shutting down the past week. He hasn't been able to stand or walk and he barely talks. This morning he woke up with his head kinked to the right side and could not move his neck. I could not understand his speech. He mostly mumbled.

We had occupational therapy, physical therapy, music therapy, speech therapy, and massage therapy all work with him today. My sister got him a cat piano that he interacted with and I got him a hungry hungry hippos game. By the end of the day, he asked for his iPad. I made him stand up beside his bed to watch and out of nowhere he started dancing! He was stopping his feet, shaking his bum bum, and waving his hands in the air. After that, he started chattering like a little chatterbox.

YouTube Video

I am using all of the suggestions people have made and I think it is working. He is getting away from the boredom of the hospital room and opening up. Again, THANK YOU!!!!

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Saturday, September 15, 2012

Test Results

The results are coming in from all the studies and still little answers.  Here is what we know.

All the blood and stool cultures are negative.  He is even negative for Norovirus and Campylobacter, which he had been positive for in the past.  He had a full body scan to detect anything that might be missed from blood tests.  Everything looks great.  He had a full GI scope under anesthesia with a biopsy.  The initial scope looked good accept for a small red area.  The GI is inflamed which is causing the mucus.  Today, the initial biopsy results show that it does not look like GVH.  However, his colon has marked atrophy (deteriorated).  He has barely eaten and drinks so little for such a long time that his GI tract is shutting down.  They also think that the colon has some scarring as a result of the Norovirus.  A full eye exam shows no signs of infection or GVH.

What we do know:  Aaron is screaming and crying throughout the day (not normal for him at all).  He is itching horribly without relief.  His skin GVH is flaring up and dying down throughout the day.  He has a fever almost every day.

The doctors think that the diarrhea is occurring because his colon does not work.  Everything that goes in him comes right out without being absorbed.  They have put him on an NG tube to try and get the GI tract working again.  He is also on IV nutrition since he is not absorbing nutrients himself.  This problem will take a very long time to resolve.

He has an infection on his tongue that does not clear up.  It is likely thrush, but they have been treating it without success.  This could be causing discomfort in his mouth and possibly all down his throat.  This could be one reason he does not want to eat. 

Although, we should be sighing with some relief, I am not.  The doctors have no idea why he has fevers and they do not know why his body is shutting down. 

A HUGE thank you to all of you.  I asked for help and I am amazed at the response from you all.  Some of you have great ideas to get him going and others of you offer such words of encouragement.  I can only hope to be able to return the favors to each of you if you ever have a time of need.  THANK YOU!!!

Friday, September 14, 2012

Aaron Needs Your Help!!!

Aaron is not good.  They have done endless tests on him.  They cannot detect any infections in his stool or blood.  A full body scan came back without any issues.  Today they did a full scope of his GI tract.  His GI tract looks pretty good.  They did a biopsy and the results will come back soon.  The only likely thing at this point is gut GVH.  Although the scope did not look bad, the biopsy can still come back with GVH.  At this point I just want an answer because he is shutting down.

He will not eat; he will not drink; he does not talk; he does not play.  He just wants to lay in bed without stimulation.  I rarely ask for help, but I really need it right now.  Please be creative and help us out.  I need to find ways to stimulate Aaron.  I need activities for him to do, things that are engaging.  For example, crafts with stickers or making paper airplanes.  He does not like to color with crayons and he does not like coloring books.  We do not need any big toys or anything expensive.  He does not need any more movies.  I want something that will require his brain to be active that is fun.  He does not have a lot of energy.

I know I am asking a lot, but I am not creative and I have to get Aaron out of this.  The doctors are working hard to fix his body, but no one is helping with his mind.  I feel like I am losing my son and it scares me to death.

Our mailing address in Cincinnati is:

Ronald McDonald House
Wolsey Room 78
350 Erkenbrecher Ave
Cincinnati, OH 45229

If you do not want to mail anything, but have suggestions, I would appreciate that too.  Thank you all for your love and support.  We have been through a lot and gotten through it.  We will get through this as well.

Not good

Aaron is not good right now. He is undergoing many tests this week. They will not start treatment until testing is complete. He has lost is interest in everything including trains and his iPad.

He will not eat and drinks very little. They have put an NG tube back on him.

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Tuesday, September 11, 2012

Aaron's first plane ride

With a father that is an airline pilot and a grandfather who is an ex-fighter pilot in the air force and then a Southwest Airlines captain, I never would have imagined my child's first plane ride would be a hospital to hospital transfer via a medical plane.

Please do not be concerned. This is actually prayers answered. The hospital in Orlando is not capable of caring for Aaron. He needs BMT experts and that is what he will get. This experience over the last month is a testament to why we chose Cincinnati in the first place.

I don't know what the future holds for us. This could be a short stay or we may stay for months again. Time will tell, but we will make our decisions based on what Aaron needs.

The transition was incredibly smooth. Today is September 11th and I can only imagine all the brave people who helped during the crisis so many years ago. We had a whole set of heros for just one little boy. Aaron was taken by ambulance to Orlando Executive airport, then flown by the nicest pilots to Lunken airport, and then carried by ambulance to CCH. In all, eight emergency personnel and pilots brought Aaron safely from Florida to Ohio. We are so very thankful to these people who do more than just their job.

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Monday, September 10, 2012

Dr Levy

Today was a productive day. Dr Levy was on service and we love him. He admittedly says he knows little about BMT, gvhd, cyclosporine, and how to treat Aaron. Yet he is the best doctor Aaron has ever had here!

Aaron's lead doctor was on service over the weekend and did NOTHING! Aaron came back positive for a bacteria and he would not treat it. His IGG level was 254 (dangerously low) and he did nothing! I begged for them to do something, but he does not want to make a decision.

Dr Levy got Aaron on treatment and called Cincinnati three times to clarify what should be done and set up a medical flight to get Aaron back to Cincy tomorrow.

Aaron's fevers are on the rise and I do worry. I am hoping that because this is a bacteria, they can kill it with antibiotics. Aaron is unable to get rid of viruses because there aren't treatments for most of them.

Thank you all for your support. We need it!

This is Aaron doing his own mouth care and laughing.

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Sunday, September 9, 2012


Just got word that Aaron is positive for campylobacter in his stool.  In healthy people, this is usually self-limiting within one week.  For immune compromised patient, this is not the case.  If this spreads to his blood it can be life-threatening.  I won't know any more until tomorrow.

I feel numb.  I keep thinking that nothing more can happen to this kid, but it does. The hard part is that he is starting to understand everything.  I know we will make it through all of this.  Please keep him in your prayers.

What do you think? If a man owns a hundred sheep, and one of them wanders away, will he not leave the ninety-nine on the hills and go to look for the one that wandered off?  And if he finds it, truly I tell you, he is happier about that one sheep than about the ninety-nine that did not wander off. In the same way your Father in heaven is not willing that any of these little ones should perish.

Saturday, September 8, 2012

Another ER weekend

My heart breaks for my son. We are in the ER again. Had to wake him out of his sleep due to fevers. We were going to wait until morning but the BMT doctors in Cincinnati insisted he go immediately. Anytime there is fever they want to check for a central line infection. He has fevers everyday, but today is higher than normal.

They will admit us and give him IV fluids and antibiotics. I don't know if we will go home this time. I have a feeling they will send us straight back to Cincinnati. I am ok with that. Aaron needs better care than what they can provide here.

Prayers for gvh to go away forever are welcome.

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Wednesday, September 5, 2012

Complications and lackIng sleep

Things just don't seem to be letting up in the Wolsey house.  

Aaron had his surgery.  He was an add on, since the nurse breaking his central line was not a scheduled event.  They made him stop eating at midnight but did not get him into the OR until after 2pm the next day.  He was begging for food and milk.  We did our best to distract him.  The surgery was done and we got home just in time to give Aaron his night meds and go to bed.

The next morning and ever since Aaron looks like he has scoliosis.  His left shoulder is raised up towards his chin and his right shoulder is hanging lower.  We brought this up to the doctor and of course they are not concerned.  This has been the last straw in a heartbreaking series of events over the past few weeks.  I dont even know where to begin to fix this problem. I thought the surgeon should have been consulted but that is not happening.

Aaron has diarrhea 5-7 times a day.  I have to wake up every couple of hours to change him.  We are both exhausted and not getting quality sleep.  Now that I am working again, I spend almost every day off at the hospital.   I am beyond sleep deprived and becoming very emotional.

Thankfully Michael is home for a few days.  I think this has helped lift Aaron and my spirits quite a bit.

Hoping and praying we can make some forward progress soon.  There has been way too many setbacks lately.