Aaron's Hyper IgM Journey

Wednesday, February 29, 2012

Lots of Laughter

Aaron is doing GREAT!!!
Sunday, Aaron said "I want to run". I have been praying to hear those words again. And he did run. Up and down the hall three times! His running is mostly stomping his feet and swinging his arms and moving no faster than he walks, but it is the cutest thing.
Sunday, he said he wants to dance I turned on music but he didn't dance much.
Monday, Michael retuned from work and we have spent a few days as a family.
Aaron's liver numbers are not better or worse. However, the doctors say the liver is usually the last to resolve. They are still watching and waiting. They are talking about possible discharge in the next week or so.
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Sunday, February 26, 2012

Green Craft

Child life came in and asked we we wanted anything. Aaron requested a green craft. This is what we did today. We also painted, read tons of books and Aaron walked up and down the long hall all by himself!!!

And did I mention... He eats all day long. Who would have thought my son, who rather do anything but eat, could have such an appetite. That would explain him going from a 3T to a 5T in two months.

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We Miss You Sissy

This is Serena's last soccer game of the season. Michael was able to go visit her and watch the super star soccer player in action. We miss this girl so much. She brings laughter and joy with her everywhere.

Saturday, February 25, 2012

Jumping For Cherries

What a great day we had yesterday. Aaron got out of bed and played for a couple of hours. He ate better than he has in months. He wanted cherries. He stood up and kept jumping with excitement each time he would get a cherry. He ate 20 of them!

He is on an NG tube for feeding. They cut that back to only twelve hours a day since he is eating well. Hopefully he continues to eat well and they can take it out.

Aaron's liver enzymes went down slightly. Too early to tell if it is meaningful but I am hopeful.

The hospital reached an all time record high of hospital admissions. They had to open the same day surgery center and ER for overnight beds. The BMT unit is also over full. They moved more patients to our new unit and they are discharging patients as soon as they can. We will not be leaving anytime soon.

Another thing, Aaron is getting his old color back. He has been shedding the old GVH skin and new soft normal skin is coming in.

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Friday, February 24, 2012

Looking Good

Aaron is looking better and better everyday! He is playing more and walking more with each day.

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Thursday, February 23, 2012

Liver GVHD

I went home for four days to work and check on the house.  I left Michael with his hands full.  Because Aaron's central line broke, he had a temporary IV in his hand.  The IV had popped out and Mike found Aaron in a pool of his own blood Thursday night.  He said it was something out of a horror movie.  Even his nurse shreiked in terror.  Thankfully that resolved easily and the next day Aaron had a new central line placed.  The major risk of the surgery was a possible infection.  However, enough days have passed that an infection would have likely shown up by now.

Then  Saturday there was a horrible smell of sewage coming from the bathroom in Aaron's room.  Mike had to pack up everything and change rooms.  There were no rooms available on the BMT unit.  They had to move to the overflow unit on the 6th floor.  This turns out to be a much nicer area and we are happy here!  The nurses are nicer, the floor is quieter and we have three windows to look outside.  We will stay here as long as they will let us.

Sunday and Monday were good.  Aaron was in a good mood and played with Michael and walked a lot.  When I got back Tuesday, I was pleasantly surprised to see a huge improvement in Aaron's walking and stability. 

Unfortunately, it is not all good news to report.  Aaron's skin is looking better and better every day.  In fact, the doctor said he is no longer concerned about his skin.  The rash is resolving.  They are concerned with Aaron's liver.  His liver enzymes continue to go up and up.  The doctors are concerned about the liver.  They increased his steroids again and it does not seem to be making a difference in his liver numbers.  They have also tried the t-cell depletion without success.  They have more treatments they can try, but these treatments are not preferred.  We will see what they say today.

Friday, February 17, 2012

Successful Surgery

Aaron had his surgery today and all went well. He even ate a decent dinner. Yay! Thank you all for the prayers and words of encouragement. I believe things are only going to get better from here.

Thursday, February 16, 2012

Surgery Tomorrow

I feel absolutely horrible. As if my son hasn't been through enough already. I accidentally broke his central line. They tried unsuccessfully to repair it. Aaron will have to go in for surgery tomorrow for a replacement. I hope he heals quickly. He will get blood and platelets tonight and then again tomorrow after his surgery.

Wednesday, February 15, 2012

Ouchies (Day +42)

I haven't written in awhile, partly because I am reading two really good books, The Help and The Hunting Game. The main reason I haven't written is because things around here have been pretty negative. We lost three children in the BMT unit recently and another mother was told her son wouldn't make it much longer. It is horrible to admit, but I have to try and avoid that woman because it is so depressing and I am doing my best to stay positive. Aaron is doing OK. His GVH rash is finally getting better, but at a huge price. They had to increase his steroids and he has done nothing but scream for two days straight. He has finally learned what ouchies are. Although to him it means itching. His rash cause him to itch terribly that he is tearing his skin in several places. Overall, the doctors are still hopeful that we can control his rash. I don't think he will be leaving here for at least a couple more weeks. On a positive note, he has just screamed himself to sleep giving me a chance to catch up on the blog. My apologies to all of you trying to call right now. It is virtually impossible to make phone calls right now. I will catch up when I can.

Friday, February 10, 2012

T-cell Depletion

The doctor is going to take another approach to Aaron's GVH. Aaron was given a medication to wipe out his t-cells. T-cells are important in attacking anything foreign in our bodies. Right now Aaron's t-cells are from his donor and do not recognize Aaron's own tissues and are causing the GVH. They don't like to deplete t-cells normally because there is not a defense against viruses. Any latent viruses Aaron might have could become active and he will not be protected. They have tested for many infections and haven't found any. Hopefully this new medication will clear up the GVH without causing any further problems.

Thursday, February 9, 2012

Another Step Backward

Just when I thought we were really getting things worked out, we had a horrible day. Aaron's GVH is getting worse and the steroids are really hard on him. He became so combative. He knocked me in the chin with his head and then pulled out all of his IV lines and his feeding tube. The contents of his stomach leaked out all over me and the bed.

Wednesday, February 8, 2012

Moving Day (Day +36)

We packed Aaron and all of his things into the "green bed" and moved to another room on the floor.

His old room has a negative pressure that is very important for people with certain infectious diseases.  They have a patient coming in that will need our old room.  They also like to move patients every 30 days to make sure they are cleaning the rooms frequently. 

Monday, February 6, 2012

Out of the Room

What a great day!  Aaron woke up quiet and withdrawn.  I didn't have high hopes for the day.  However, he got Tylenol, Benadryl, and a good nap.  He woke up from his nap in a great mood.  We played twice on the mat today and we took a walk outside the room.  He is always looking out the window searching for a train.  He walked quite a bit by himself and then I carried him for awhile.  He is very weak and will take some time to regain his strength.  The physical therapist worked with him today and that went well also.

Aaron's primary doctor is the one doing rounds this week.  We haven't seen him in awhile.  He says Aaron is doing OK, but still has 80% chance of survival.  His doctor is blunt and does not ever give reassurances.  He is tweaking a lot of Aaron's therapy.  He decided Aaron is not ready to leave the hospital and will wait to discuss discharge at a later time.

PLEASE, PLEASE, PLEASE continue to pray.  Aaron has a lot of hurdles to overcome.  I am certain he can do it, but we know our strength comes from above.

Sunday, February 5, 2012

Almost a Good Day

Today started off fantastic.  Aaron woke up talking like himself; better than he has in weeks.  The doctors had lots of positive things to say in rounds.  They said overall Aaron is doing great.  His GVH is looking much better.  His response to steroids is a very important indicator of how he might do in the future and he is responding very well to the steroids.  They are also going to decrease the steroids and plan to discharge us by the end of the week.

Then... the day turned bad.  Out of nowhere, Aaron's blood pressure sky rockets to 180/86 and 160/100.  The doctors wanted to wait and recheck several times.  I was freaking out knowing that high blood pressures can cause stroke.  I felt like they waited too long to take care of his fever and I didn't want that to happen again.  Finally, they gave him additional blood pressure medication.  His pressure went down for about 30 minutes and then right back up again.  This went on through the night.  Aaron stayed crawled up in a ball the rest of the day with me holding him.  He would not talk or watch TV. 

Saturday, February 4, 2012

Motivational Walking

Yesterday, Aaron saw this poster on the wall and said, "is it a red train?"  He got out of bed and walked across the room to see it.  Child life made this poster to be a reward chart for him taking his medication.  We pulled the poster down and played with it.  He talked and played for 10 minutes.  I was beyond excited.  The rest of the day, he went back to laying in bed curled in a ball with Mommy holding him.

Today I tricked him into walking across the room to look out the window.  We have a view of the Ronald McDonald House and smoke comes out of the roof.  I told him that there was smoke and he thought it was smoke from a train.  He got up so fast and walked over to the window and was thrilled to see smoke.  He still thinks it is from a train. 

Friday, February 3, 2012

Several Shades Darker (Day +31)

Aaron is getting darker and darker. The doctors say it is from the GVH and his color will fade. Fortunately for Aaron, he can get away with just about any skin color since he has just about every ethnicity in him. :-)

Today was a little better than yesterday. He got out of bed a little and ate more than he has in weeks.

Wednesday, February 1, 2012

Baby Steps... Literally

All of a sudden Aaron got out of bed and walked across the room. His legs were wabbly and I had to hold him for stability. Then for ten minutes he played with his trains and talked. Then he went back to bed and reverted back to the way he has been acting for the last couple of weeks.

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