Aaron's Hyper IgM Journey

Tuesday, March 27, 2012

The Levee

Aaron and I ventured out to the Levee in Kentucky on Sunday. We went early when few people were there and stayed in the shade. We had a great time. We walked across a huge bridge and spotted boats and birds down below.

Too bad we didn't get to try the grilled cheese donut. Wow. Doesn't that sound interesting.

Aaron is doing well. His roid rage has stopped and his personality is coming back more than ever. I can tell he has been watching way too much tv when he counted to ten in Spanish today He could only count to five pretransplant. I think we saw every episode of Diego ever made while in the hospital.

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Saturday, March 24, 2012

A Night Inpatient

I checked Aaron back into the hospital for a night, but I wonder if I was the one that needed medical intervention.  Since they have lowered Aaron's daily steroid dose drastically, his GVH has gotten worse.  To combat that, they have given him two high dose IV steroid infusions this week.  This sent him absolutely crazy.  He has rages nearly every second he is awake.  Sometimes, we are able to divert his attention and calm him down.  Most of the time we are not. 

Michael left for work Friday morning.  The entire rest of the day, Aaron screamed and stomped his feet standing in place.  The medication they gave me did not work.  I took him back to be reevaluated and they decided to readmit him.  This worked out well.  He has a new medication plan in place that seems to be working better.  Today was a much better day.  He still is not normal, but a little more manageable.  I thought I was going to lose my mind trying to care for him by myself. 

Wednesday, March 21, 2012

A Summer in Cincy

We had a long talk with Aaron's doctor and we got some news.  We will be staying in Cincinnati until Labor Day (if not longer).  Aaron is on REALLY high doses of steroids.  The steroids keep his GVH down.  However, the high doses are preventing his new immune system from being able to generate.  The doctor must lower his steroids knowing that the GVH will get worse.  They will watch Aaron very closely to monitor things.  The doctor is hoping to have the GVH and immune system under control by Memorial Day and then slowly wean off the steroids towards Labor Day (the doctor does everything according to Holidays).  The doctor said if not Labor Day, then hopefully by Canadian Thanksgiving (never heard of it, but apparently it is in October).

Although I am not excited about the news, it really wasn't unexpected.  My only concern is my job.  I would really like to keep it, but that is unpredictable right now.  The most important thing is to get Aaron better.

Tuesday, March 20, 2012

Trains and Popcorn (Day+77)

Aaron is sitting in the front seat with me watching trains. This has become our daily outing.

Can't believe it is already 77 days since his transplant. Wow!

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Sunday, March 18, 2012

One week and in the ER

Overall, Aaron is stable. We have been out of the hospital for a week now. He has enjoyed his new routine at RMH. We found a spot nearby that we can sit in the car and watch trains go by. In twenty minutes we can see four trains. Aaron throws a fit every time we leave. He could sit all day waiting for trains and watch them go by. We wave at them. Today we got a horn back at us!

His skin GVH is getting worse. We are sitting in the ER right now. They decided to give him a dose of IV steroids and follow up in clinic tomorrow. We were also told that we will be in Cincinnati at least a month longer than planned. Aaron's GVH has to be under control before we can go.

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Sunday, March 11, 2012

Two Goodbye Celebrations

When the children leave the hospital, child life has a good bye celebration.  I was making one last trip to the Ronald McDonald House to bring back our things when I ran into Meg, head of child life.  I told her I would be right back and we could have the celebration.  She apologized and said she could not make it because she was in the middle of a bereavement.  That was when I noticed what she was carrying in her hands.  She had a clay mold of a hand imprint that was not even dry yet.  This was just like the ones made of a new baby's hands, but instead of welcoming a new child into the world this family was saying goodbye.  I pray for this family and the other families who have lost their children here. 

This was a reminder of how fortunate we are to have made it this far.  Graft vs host disease is ugly and horrible and is the cause of death of so many BMT patients.  Aaron was given an 80% chance of survival.  I asked the doctor recently if his chances have improved since we have made it this far.  He said no.  Aaron's chances of survival are no better today than when we arrived three and a half months ago.  We celebrate him leaving the hospital and making steps toward recovery.  We don't let one day go by without appreciating our time together.  We know that this fight is far from over. 

Discharged (Day +68)

After nearly three months in the hospital, Aaron is a free man again! Back to the Ronald Mcdonald House for us. Yippee!!!!
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Saturday, March 10, 2012

The BEST Week Ever

This week has been nothing but good news! And there is only one person that gets all the credit - Aaron!!!

He is eating so well that they gradually weaned him off the feeding tube and took it out.

They switched all of his IV meds to oral meds and he is no longer connected to the IV pole (except when he gets infusions). He takes all his medicines like a champ even though they taste awful.

The doctors have given him passes to leave the hospital and we have left a couple of times. Freedom is wonderful.

Finally, the best news of all is that his liver numbers are starting to go down. Too soon to tell if it is meaningful, but we are happy.

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Wednesday, March 7, 2012

Escapees (Day +63)

Michael and Aaron broke out of the hospital today.  What fun to see Aaron enjoying himself out in the fresh air.  We all got to eat dinner together at the Ronald McDonald House.  Aaron ate his pizza and spaghetti.  He eats adult size portions and has gained 5 pounds in the past few weeks.  He is HUGE!!! 

Although Aaron does not look like himself at all, his personality is still the same.  He is adorable.

Aaron continues to do really well.  The doctors are lowering his steroids slowly.  This will be the ultimate test of how his body reacts to his transplant.  His liver is still abnormal.  The doctors still believe it will heal on its own.  Aaron may get to break out of the hospital for good Monday.  We are keeping our fingers crossed.  If he does well over the weekend, we may get to leave.

(Aaron was actually given a day pass from the doctors to leave.  Don't worry, we weren't trying to endanger our kid).  :-)

Tuesday, March 6, 2012

Tequila and Tapas

A huge thank you to Celeste, everyone at Wisdom's Cafe, all the attendees, and those that donated items for the silent auction.

Unfortunately, I could not attend. However, it was a huge success. My parents went and had a great time. The food was delicious and the auction was a hit. There was sampling of different types of tequila.

I can't wait until Aaron is healthy again and we can fly to Arizona and eat at Wisdom's Cafe. They are located near my mothers art gallery.

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Sunday, March 4, 2012

Walking for Food

Aaron's favorite food right now is bread and cheese. Most of his food we order off the menu, but bread and cheese comes from the nutrition room down at the end of the hall. He loves to go and get it himself. He is getting stronger and stronger everyday. He is also getting faster and faster with his running.

The doctors are starting to lower his steroids. He started itching more. We are hoping the skin GVHD is not going to come back. His liver enzymes are also starting to rise a little more. The doctors are still taking the watch and wait approach.

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