Aaron's Hyper IgM Journey

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.

Posted using BlogPress from my iPhone

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.

Posted using BlogPress from my iPhone

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.

- Posted using BlogPress from my iPhone

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!

Posted using BlogPress from my iPhone

Location:Erkenbrecher Ave,Cincinnati,United States

Monday, October 6, 2014

The events so far (short version)

Tuesday at school, Aaron was too tired to stay more than an hour. The rest of the day, he laid around very tired. At bedtime, he had a fever. Arnold Palmer did a chest X-ray and CT-scan to reveal pneumonia. He had already been started in antibiotics.

Thursday, he was medically flighted back to Cincinnati where his condition worsened dramatically. By Thursday night, he was intubated and we were told "his lungs couldn't get much worse." They went to max settings on the standard ventilator with little success. They changed to a stronger ventilator and that worked.

Friday, cultures were taken from his lungs. Usually, within 24-48 hours, the cultures suggest what type of infection we are dealing with. No such luck for us. Since antibiotics were started Tuesday, it is possible a bacterial infection was already undetectable. Fungus isn't ruled out since it can take up to two weeks (but they would still likely have some evidence at this time). Every virus that can be tested has been tested and is negative. Based on Aaron's presentation and culture results, the doctors believe he has a respiratory virus. There are hundreds to thousands (or more) viruses that we cannot test for. These unnamed viruses also have no treatment. The treatment is letting the IMMUNE SYSTEM fight it over time.

I don't have a choice but to believe Aaron can fight this. I lost all hope Thursday and told Michael to come back from work for Aaron's final days. Aaron has proven me wrong and we will continue to fight for our beautiful family! His vent settings have decreased from 100% oxygen to 50% the past few days. He is on dialysis to help his failing kidneys.

Aaron is sedated but only mildly. He can move his eyes and nod his head "yes" or shake it "no" to communicate. This is helpful. I offered to practice skip counting with him, but he quickly shook his head. He was more interested in cooking shows on the iPad. I will give in to him for awhile, but he won't get out if school for too long. :). My mother went to the bookstore yesterday to get some wonderful entertainment for him. We are looking forward to that. He enjoys reading his books about food and trains.

Your prayers and support, as always, have brought us through another storm. I wish I had the time and energy to thank each of you personally. Please don't stop the prayers! God is good and merciful. When people come together in prayer, He listens. I am proud of my son who has reached out to people across the world to come together to praise God!

- Posted using BlogPress from my iPhone