Aaron's Hyper IgM Journey

Saturday, October 23, 2010

Aaron's 1st Birthday

What fun Aaron had on his Birthday. We actually celebrated Thurs Oct 14th (a day early) because I had to work on his birthday. The day started with a huge birthday cake and sneaking in a balloon that was not allowed. The hospital has a latex free policy, but they let Aaron play with it for the morning. Grandma Cindy had the room very festive with birthday decorations and party hats.

Aunt Katie and Granny Carol came and brought lots of gifts. Aaron's favorite was the wrapping paper and bows to play with.

The musician came in and sang along with the chaplain and the child life director.

Then Aaron had to go into surgery to stop his ulcers from bleeding. After 3 hours of surgery and post-op, he got his first birthday cake. It was the first thing he had eaten in days and he loved it!

After Aaron got home we celebrated again with Daddy and he tried out his Rock, Roll, and Ride trike which he also loves. He is so proud of himself.

Thursday, October 14, 2010

3 1/2 weeks at Arnold Palmer Hospital

Everything begin at 1:30pm Friday September 24th. Aaron had an appointment with the pulmonary doctors. He was getting his initial vitals checked when his oxygen saturation registered in the high 30s. The nurse called EMS and sent Aaron and I by ambulance to the emergency room. Michael followed in his truck.

After a long night in the emergency room, the physicians determined Aaron had a very severe lung infection that covered almost his entire lungs and his immune system was not normal. Aaron was then admitted to the hospital and put on oxygen and antibiotics.

By Saturday night Aaron's condition was determined to be so severe that he was intubated with a ventilator and moved to the ICU. At this point he had the ICU, infectious disease, and pulmonary doctors following him closely at the hospital as well as the pediatric immunologist in Tampa. The cultures also came back positive for PCP pneumonia (extremely rare in infants). He began IV Bactrim (which is on a nationwide shortage and only reserved for patients with PCP pneumonia).

Michael had to leave for 5 weeks of flight training with ExpressJet on Sunday. Thankfully, Grandma Cindy agreed to leave the Turquoise Angel studio in Tubac, Az to come help her grandson for as long as he needed her.

Over the next week Aaron had a dozen tests performed on him. Finally, a blood sample shipped overnight to Cincinnati confirmed a diagnosis of x-linked hyper IgM immunodeficiency. This condition is seen in 2 out of a million people.

After 2 weeks of intensive care, antibiotics and ventilation, Aaron's lungs were doing amazing. He surprised all his doctors with his recovery. However, Aaron had been having bloody stools and required 2 blood transfusions in the past couple of days. The GI doctor scoped him and found 8 ulcers but felt that they were no longer active and did not require intervention at the time.

Then... the scariest day of my life - Monday December 11th. Holly, the music therapist came by and was singing with her red guitar while Aaron was shaking his maracas. All of a sudden he coughed and coughed and blood spewed out of his mouth twice. The next day Dr. Mehta took Aaron to the OR and sealed up his largest ulcer. He was also given another blood transfusion. Thankfully, he has not had anymore blood loss.

Today, he had a port placement for the monthly IV infusions he will need to help maintain his immune system. We are very hopeful about his future. He will need a bone marrow transplant. An identical match would result in a cure. A bone marrow transplant should occur within 9 months to a year as long as we can find a good match.

Through this experience we have learned the enormity of God's love. We have never experienced more amazing people, caring nurses, compassionate doctors, and loving friends and family. We have people praying for us in Orlando, Trinidad, Washington, Texas, Arizona, Mexico, and many others. If there is one thing we have gained from this difficult time is how good people really are.