Aaron's Hyper IgM Journey

Sunday, December 28, 2014

Christmas 2014

Aaron wrote a letter to Santa asking for three lego train sets and a cat to go with his dog family.  Christmas morning he woke up and said he heard Santa while he was sleeping.  He did not want to wait one minute to open his presents.  He was dying to get his Lego train sets.  He went through his stocking tossing everything out quickly with little interest.  Then he moved on to some of the presents Santa left.  Each present he tore open quickly and with each present he showed more and more disappointment on his face.  Finally, he said "Mommy, I am tired.  I want to take a nap."  I asked if he was ok and he said no because Santa was supposed to bring his Lego set.  While he was napping, we brought the Lego train set over from Ronald McDonald House (Santa left it there for some reason).  When he woke up, he couldn't have been happier to see the Lego Train Set and his new cat (named Baby Tiger).

He slowly opened up several more gifts over the next few days.  He really enjoyed Christmas and all of his presents.  He decided Christmas is now his favorite holiday.  He is upset that Santa only brought one of the three Lego train sets.  We are learning what the words grateful and ungrateful mean.  :)

Aaron's health has gone from barely living to fantastic in three short months.  His kidney and liver numbers are so close to normal it is unbelievable.  The doctors didn't know if his kidneys would recover at all and were certain he would need dialysis long term.  Not only does he not need dialysis, his kidneys are performing better than they have since he started chemotherapy three years ago.  His liver numbers have been above 100 and usually in the 300-400s (very, very bad) for three years as well.  They are now consistently below 100. 

Aaron's energy is driving me bananas!  He has so much energy and is so full of goofiness.  Unfortunately, his bone strength and muscle strength are lagging behind.  What he needs is to get out of bed and run around.  He reminds a bit of the days he would run a mile a day and say "Mommy, I can't stop, I can't stop!"  He does get out of bed everyday.  He is working hard with physical therapy and occupational therapy.  He can walk, but still must hold on to someone's hands for stability.

He will be discharged within a week.  He needs photophoresis four days a week which will require us to stay in Cincinnati for a long time.  I am thinking we will be here 6 months to a year.  What happens after that is still unknown.

2015 will be a new adventure.  I don't think I will be posting very much more on this blog.  Although it focuses on Aaron, it was created to share the adventures of our whole family.  With all the changes in my life, I will probably just post smaller updates on Facebook.  I may start a new blog in the future, but I am not sure.  Thank you all for rooting us on during each and every "adventure" we have faced.

Tuesday, December 2, 2014

Thanksgiving Week

Aaron. He never stops amazing me. Before transplant I had the most beautiful, energetic and happy child. I couldn't believe God had blessed me with the coolest kid in the world. After transplant, I saw my child suffer from pain, fear, anxiety, eating problems, motor skill disorders and much more. I actually mourned the loss of the child I gave birth to and began to accept the new child that he had become.
In my wildest dreams, I would have never believed the impossible to happen. My Aaron, the funny, happy, energetic son has returned!!!! Aaron is happier than I have seen him in years. He makes jokes all day. He doesn't scream at the doctors anymore. In fact, he pretends baby dog has eaten chocolate and he has the dog throw up on the doctors and nurses instead. He is having fun with OT and PT and anyone who comes to play with him. He never would interact with people before unless to scream at them.

Aaron still requires oxygen at night. We are going to start trying to wean his tpn. He drinks a ton but doesn't eat enough. We have speech therapy helping with that. He is also not strong enough yet to walk much. His skin looks better than ever. In fact, overall, he hasn't looked this good since transplant. We will definitely be in the hospital for Christmas. Aaron loves the hospital, so he won't mind a bit.

We also had Serena for a week. I absolutely love that girl!!! She and Aaron had tons of fun. They made snowflakes and snowmen. They sang songs. Serena really enjoyed music therapy and made up all the songs during their one hour sessions. Her creativity blows me away. She even helped Aaron with his school work.

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Saturday, November 22, 2014

Life changes

The past six weeks have been by far the toughest time in my entire life. Thankfully, Aaron has pulled through and continues to do well. His kidneys are at 50% and nephrology no longer follows him. He is on oxygen only at night. He is on tpn for nutrition since he doesn't eat enough. He is also making great strides with walking.

We are selling the house. We will live at Ronald McDonald until Aaron is healthy enough to move.

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Tuesday, October 28, 2014

My miracle child

Aaron woke up at four o'clock this morning. He sleeps most of the day, but at 4am he decided he was done sleeping and ready to watch movies. Tired, but elated, I dragged myself out of my chair bed and sat next to him. We watched his new cooking movies he received for his birthday.

Aaron has proven to be one tough kid! The nephrologist came by this morning and said Aaron no longer requires dialysis and we can take out the dialysis lines. He said he is shocked; he was certain Aaron would need dialysis for weeks to months based on how sick his kidneys were. Aaron has been a peeing machine lately requiring frequent bedding changes. Looks like he is making up for lost time.

The physical therapist brought in a table and chairs for Aaron to start working on strength. He laughed and played and smiled and laughed some more as he cooked for his doggies. My heart was overjoyed!

The next step is walking. Aaron can't even stand up at this point. Once he has worked up his strength and can walk, we are out of here!!!!! I really cannot believe it.

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Saturday, October 25, 2014

Out of the ICU.

Aaron has made huge progress in the past few days and has been moved from the ICU to the BMT unit. He is completely off the bipap mask. He still requires a nasal cannula to deliver a low amount of oxygen. His lungs will take awhile to completely heal.

Aaron's kidneys have been improving as well. He has increased urine output from zero to 800ml per day. He is still requiring dialysis for about 50% of the work.

Michael has been helping him try to stand four times a day. He is still too weak. As shown in this picture, he is now able to sit up in a chair for short periods of time. He is still exhausted and spends most of the day resting.

His gvhd is holding steady. They took him off cyclosporine (one of his big gvhd meds). This medicine has hit his kidneys really hard. We hope that his gvhd does not worsen with this big change.

Michael and I take turns caring for Aaron.  Serena is missed dearly.

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Sunday, October 19, 2014

Chocolate, exercise and escape games

Aaron's was extubated from his ventilator Thursday and placed on a high pressure bipap mask (similar to cpap but stronger). He wears this super tight and restricting mask like the champ that he is. He complained at first only because he wanted to drink and they wouldn't let him. After using his sweetest sad face, the doctors couldn't help but give in. Every four hours, the respiratory therapist adjusts his mask and never forgets to bring a very small cup of cold water with him.

Despite several attempt to wean him off the mask, Aaron's lungs cannot handle the decreased pressure settings. Aaron's lungs have significantly improved on X-ray and the doctors are pleased.
The problem lies with his kidneys.
He is barely peeing and has gained over ten pounds of fluid in two days. That is a lot for a 35 pound kid. The fluid is now what is hindering the lungs. Ugh!

Yesterday, he began daily three hour dialysis treatments. The dialysis can take the fluid off no problem. However, his current phoresis line can not handle the dialysis. Today he will have a new dialysis competent central line placed. Hopefully by tomorrow he will be in a better place and he can start to take off his bipap mask.

Although Aaron has peed (hallelujah), his kidney are in bad, bad shape. He only pees once a day. Aaron has bounced back from EVERYTHING (which is a whole lot of stuff) thrown at him in life. He can bounce back from this too. It will probably take weeks to months to years for his kidneys to heal.

Aaron has slept about 22 hours a day the last two days. My diet has consisted mostly of chocolate, a very bad coping mechanism. I try to justify it by exercising 1-2 hours a day. In between eating chocolate and exercising, I read or play brain games on my iPhone. Any suggestions for mind-bending apps? I am so annoyed with my free time. When I am home, I would kill to have an extra hour or two to get things done. Now I sit here stroking my son's hair and doing nothing else productive.

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Location:Cincinnati children's hospital

Thursday, October 16, 2014

He peed!!!!!

Aaron has made another comeback! He is one tough kid! Thanking God for giving me more time with my chef.

The doctors took him off dialysis at 9am. They were prepared to pull out the ventilator, but Aaron was sleeping. Patients who are sedated during extubation can forget to start breathing by themselves. We definitely don't need that to happen. So, we had to wait for Aaron to wake up.

For two days, this kid wouldn't settle down. He got so bad that the nurse restrained his arms last night while I was sleeping. She was afraid he would pull out his tubes. Finally, the big day came and he did not wake up until 12:30pm. The extubation went great. They put him on a bipap (similar to cpap) mask as an extra precaution. If he does well on this, he can get off the mask as early as later today.

After the procedure, I started to bundle him up. He pointed to his pull-up and sure enough HE PEED!!!! His kidneys are working. Not sure what kind of hit they received with this, but hopefully they will recover.

He is not happy about the bipap mask. He finally settled down by watching a 54 minute show called "Hamburger America Documentary." My baby is back!

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Location:Erkenbrecher Ave,Cincinnati,United States