Aaron's Hyper IgM Journey

Wednesday, February 26, 2014

Spoiled by Grandpa Gary

For the first time in his life, we left Aaron with someone else to care for him.  My father graciously took on the responsibility of caring for Aaron.

They had a great time together. Aaron showed him all his favorite YouTube cooking videos. They made pizza together everyday. They played trains and cooked with his play kitchen.

Aaron pulled a few four year old tricks on his Grandpa Gary. He told his grandfather what to eat for lunch (Giada's mashed potatos gratin). So my father followed the video and had potatoes for lunch. He told Grandpa Gary that he cannot walk up the stairs and was carried each time. He did not want to get a bath and went almost two days without one.

I think they both had a great time together. Aaron was very sad when his grandfather left and kept asking me when he will come back.

We caught up on some much needed rest, went sailing, and saw many local wildlife. We enjoyed taking pictures of the jumping fish, peacocks, alligator, manatee, and dolphins.

Sunday, February 16, 2014

Touched by three

There have been many people who have helped me survive the BMT journey, but three people have been of the utmost importance for Aaron.

Ms. Carole just might be the love of Aaron's life.  She is his photophoresis nurse.  Aaron loves going to the hospital because he gets to play with Ms. Carole.  When any other nurse takes her place, he is not shy to say 'I only like Ms. Carole!"  She is one of the most beautiful people we have ever met.  She loves Aaron and takes such good care of him.  They spend hours playing trains and watching youtube videos together.  Our lives have been much easier since Ms. Carole arrived. 

Aaron's love of cooking began with a youtube video of Spaghetti Carbonara by Steven Dolby.  Another reason Aaron loves the hospital is because he gets to watch the ipad.  When home, he wants to cook for hours in his pretend kitchen.  The hours of play cooking have been instrumental in improving his strength and stamina. Aaron begs for us to cook Steve's dishes.  They are delicious and surprisingly easy to follow (coming from someone who does not cook much).  I am forever grateful to Steve for being a huge part of Aaron's recovery.  I contacted him to thank him.  He was so moved by Aaron's story that he may dedicate a video to him.  Check out the recipes that Aaron watches all day long every day:   http://stevescooking.blogspot.com/

Finally a HUGE thank you to Philipp from Germany.  Philipp arranged and rearranged his schedule to donate his bone marrow to Aaron.  Aaron's bone marrow type is so rare that we could not find an exact match.  If it were not for Philipp, Aaron may not have been able to have a BMT at all.  The bag of red fluid is Philipp's bone marrow.  The picture of Aaron was taken while the bone marrow was being infused into him.  We hope to meet Philipp someday and thank him in person.  Because of Philipp, Aaron has a chance at a full life.

Monday, February 10, 2014

Update to the bump in the road

All your prayers and positivity hit us very hard this morning. I crawled into bed with Aaron at 5am. By 7am I awoke to several pokes and a loud "Mom get up! I want breakfast, let's cook the dogs breakfast. Mom get up!" And then more pokes.

We got up and Aaron was out of bed for a long time playing. He was lively, energetic, and happy. He did not eat or drink much, but that is only the first meal of the day.

Dr Davies came by and said Aaron is looking great. She was impressed by the valentines day dinner he had chosen for us to make. http://youtu.be/qExAmwHlGRA

She also said we will be inpatient awhile longer. His finger looks better this morning. However, the antibiotic is only IV. His finger must look completely healed and then we will treat a few days more.

So far he has thoroughly enjoyed today's activities. After breakfast, his favorite nurse, Ms Carole came by to do photophoresis. Music therapy also came by and he laughed like I have never seen with another adult.

YouTube Video

After seeing Joshua with his sword fighting yesterday, Aaron wanted to do the same. I ran to Target and got Aaron a sword. He loved it. He helped me make a Lego train. Then, we flipped through his new Pionneer Woman cookbook. Later today he will enjoy playing with his friends from OT and PT.

Thank you all for the uplifting every time we are in need. Each of you has helped with the healing of our whole family. Love you all!

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Sunday, February 9, 2014

A bump in the road

Aaron has been stable for a long time. He has had slight ups and downs with his steroids and his gvhd flares, but no major hang ups. Until now.

Two weeks ago he stopped eating and drinking almost completely. He became more and more tired and wanted to rest most of the day.

We arrived in Cincinnati Wednesday for his monthly treatment only to learn that his electrolytes have plummeted. The doctors allow quite a bit of deviation from normal levels, but Aaron's became critical. They admitted him for a night since he would be hooked up to IVs all night and sent us back to RMH. Friday morning we returned to Day Hospital to find Aaron still is not holding his electrolytes. He also developed a nasty finger infection.

He is much better with eating drinking and energy. But... They gave him so much fluid his belly button is popping out. He is huge and having a hard time breathing. They gave him too much potassium and had to do an EKG to monitor his heart.

We are now waiting for Aaron's electrolytes to sort themselves out. He will go home on IV fluids for ten hours each night (even less sleep for me since he will pee even more all night). I am lucky to get four hours in a row of sleep, now it will be two. Ugh.

We just got word (while I am writing this post) that Aaron's finger has grown back as a pseuodomonas infection. They are changing antibiotics. Not sure yet how this will change things.

We plan to be discharged tomorrow to RMH and drive home Thursday. We are bummed that Aaron will miss out on his home school teacher who is awesome. I will also miss a lot of work.

With all that said, our spirits are good. We are the luckiest BMT family to have Dr Davies as our protective guardian. No one in this hospital is allowed to make a decision without her. Late last night a doctor wanted to give Aaron IV Lasix. I knew this was wrong. I sent Dr Davies a text message. She called the unit immediately and let then know again that NOTHING happens to Aaron without her approval. Did I mention she is the head of the entire BMT department!!!

Aaron has enjoyed sitting in bed a little too much. He requested we get him some cooking magazines. Here is a picture of him perusing.

We made him walk down the hall. He was not happy about that. However, he enjoyed watching his friend Joshua have a sword fight with his nurse. Aaron wanted to show Joshua his puppy dog. I see a lifelong friendship in the making.

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Location:A bump in the road