Saturday, October 17, 2009

Seeing the Light

Jacob got his PICC line in on Monday after a very emotional day of not allowing him to eat. There are only two nurses at Kaiser Fontana certified in PICC insertion, so we had to wait all day before the team of doctors and nurses could assemble for the procedure. In the mean time, Jacob couldn't eat because he had to go 6 hours without food or drink prior to sedation, and we were told they would try to do the procedure yesterday morning, not evening. Poor Jacob had to go without food or drink for nearly 24 hours.

Last Sunday, a blood test for IBDs (inflammatory bowel diseases, including Crohn's disease and ulcerative colitis) came back negative. However, the test for CGD came back positive.

Now that Jacob has been properly diagnosed, he is receiving the best care the doctors can provide. He received a blood transfusion Wednesday night after finding out that his hemoglobin was at a shockingly low 7.4. Thursday morning, Jacob was a new baby! He was so happy and playful. The transfusion was a success, bringing his hemoglobin level up to 11. Thursday night he began receiving his TPN (a nutritional supplement) through his PICC line. A healthy person's nutritional level is supposed to be between a 20-40; Jacob was at an 8. Yesterday I noticed a definite increase in appetite and I hope that he quickly regains a healthy nutritional level. Jacob has been on a mild dose of steriods for the past three days to help calm down the colitis. We should know by next week or so if the treatment is enough to cure the colitis. Once his diarrhea is gone and he is steadily gaining weight back, we will be discharged from the hospital. Jacob is also taking an iron supplement to maintain a healthy hemoglobin level; and a sulpha drug, and an antifungal drug twice a day to help prevent any future infections that could land us back in the hospital. (As a reminder, Jacob doesn't have the specific disease ulcerative colitis, but colitis is a term that accurately describes his gastrointestinal problems.) CGD is a hereditary white blood cell defect which means Jacob is more prone to infections.

Josh and I have both sent in blood to be tested to see who is the carrier of CGD. The doctors also want to test Ethan for CGD because it is more common in boys.

According to one report, CGD affects only 1 in 200,000 people in the United States with only 20 cases diagnosed each year. Another source says that as few as 1 in 1,000,000 people has CGD.

Here's some reading material on CGD:
http://children.webmd.com/granulomatous-disease-chronic-10639
http://www.nlm.nih.gov/medlineplus/ency/article/001239.htm
http://en.wikipedia.org/wiki/Chronic_granulomatous_disease

Thank you for your earnest prayers in our behalf. Although Jacob's diagnosis was a devastating shock to us all, we have been strengthened and uplifted by everyone's prayers, love, and support. Jacob is looking better everyday. Now we're just hoping for the very best results with the steroid treatment so we can get our little angel home.

Here is a meal calendar for anyone who is interested: https://spreadsheets.google.com/ccc?key=tAAegH4xOzJJ6wWljCxIz0Q

2 comments:

Bredsguard Fam said...

It's good to hear things are looking up. Please let us know if there is anything we can do to help out!

Mary Hurley said...

Hi,

Jacob is in our prayers. My husband, Alan, and I have two adult sons that have CGD. Both are doing fairly well. Erik is age 32 and Stephen is age 28. They have completed college and are living productive lives. I was very afraid too when Erik was diagnosed at age 10 days. I learned as much as possible and that helped my fears. We started the CGD Association in 1982 because we didn't know anyone with CGD. Erik also has had blood transfusions recently because of anemia. Anemia is fairly common in CGD patients. Colitis is also. He also has a PICC line for nutrition but will be getting it out soon. Please e-mail me with any questions or just to talk. I care and have been in your place. cgda@socal.rr.com

Sincerely,

Mary Hurley