In Memory Of
^Tyler^ was born December 10, 1994. The pregnancy was perfect and so was the baby. He was in the 90th percentile at birth.
At 3 months-old ^Tyler^ came down with RSV (Respiratory Syntical Virus) and was hospitalized for a week. The day of his follow-up visit I noticed blood in his stool and told the Doctor. They ran labs and it tested positive for Salmonella.
After ^Tyler's^ bought with RSV he had nebulizer treatments for the rest of his life. His health started to deteriorate in other aspects.
He wasn't eating, losing weight, diarrhea, constant diaper rashs, eczema, and the ongoing respiratory problems.
At 9 months I demanded a referral to a Gastrointerologist who admitted ^Tyler^ immediately. By this point he was in the 5th percentile and he was "wasting" away. They scanned him and found out he had delayed gastric emptying and during his stay he tested positive for parainfluenzae.
We continued consulting EVERY specialist at our local Children's hospital. He was admitted several more times from dehydration to oral herpes.
Finally at 18 months a General Peds MD asked a friend of hers in the Hematology/Oncology department to check him out. After his discharge they ran lab work twice a week for about a month when his hemoglobin started dropping.
His body was attacking his own red blood cells in a condition called Autoimmune Hemolytic Anemia. He was admitted to the Cancer Pavilion and given a blood transfusion. The Hem/Onc Doctors asked for the Stem Cell Transplant physician to review all his lab work since birth.
At that point they suspected a Primary Immune Deficiency (PID) and we went to another hospital for a 2nd opinion. Tyler was diagnosed with Nezeloff Syndrome, a variation of SCIDS (Severe Combined Immune Deficiency Syndrome). We had read a PID handbook and knew his life expectancy was >2 years of age!!! Since he was already 1 1/2 years old we were scared.
We proceeded with a half-match bone marrow transplant, using his father as the donor, in March of 1997 after he was obviously not going to improve. Everything seemed to go well. We were discharged after about 6 weeks. We had to go in 3 times a week for labs, blood transfusions, and IVIG.
In May his liver enzymes were elevated and nothing was helping so the Doctors recommended a liver biopsy to check for GVH (Graft vs. Host). GVH is common and can be fatal after a bone marrow transplant. It is when the donor's marrow attacks the recipients cells.
One week later, June 4th, we were readmitted for what we thought was chicken pox. We were to stay for a couple days and go home on IV acyclovir, a medication that treats chicken pox and herpes. ^Tyler^ never came home. On June 5th I noticed he was lethargic, his face was slightly drooping, and he slurred when he spoke. It was obvious after a head MRI, and a chest X-Ray, that ^Tyler^ had been exposed to a very common fungus, Aspergillus, which is fatal to immune compromised patients. ^Tyler^ died at 2:37pm on Saturday, June 14th 1997. We laid him to rest on June 17th.