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:

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:

Saturday, October 10, 2009

Update on Jacob

Thank you to everyone who has been so supportive during this difficult time for our family. I'm so grateful for the many many words of encouragement and support, and to know of all the prayers being offered in Jacob's behalf. He is now on his 12th day in the hospital with no end in sight. He seems to be running into one complication after another and just when I think we've hit the bottom, I find out it can get worse. Right now they're suspecting he may have picked up the flu at the hospital (most likely, swine flu) because of his spiking fevers the past three days, and last night be began vomiting. They did a swab last night and will know the results in a few days. Once he recovers from this virus and the pneumonia (which was confirmed positive in a chest x-ray yesterday), they will decide what treatment will be best to treat the Crohn's flare up. On a positive note, last they checked, his red blood cell count was up from 8.4 to 8.6. Normal range is between 10-14. It's good to see it coming up because if it dips into the 7's, he would need a blood transfusion. We are anxiously awaiting the PICC line because his weight continues to decline. WIth a PICC line in place, he can be nourished through it. Despite the heavy weight of this trial, we truly feel of your love and feel so blessed to have such wonderful friends and family to buoy us up along the way.

Sunday, October 04, 2009

Our Little Patient

Hang in there, little guy!

Grandpa Taylor & Jacob

Big brother, Ethan, comes to visit.

Finally on his 5th day, he is allowed in the play room.

Last Tuesday our little Jacob was admitted to the hospital. He has been quite sick for some time and has not been able to recover on his own. He stopped gaining weight back in April because his body was focusing all of its energy on fighting the ulcers and inflammation lining his large intestine. A colonoscopy revealed that he most likely has ulcerative colitis, a disease that generally affects older teenagers and adults. Jacob has been the most patient little patient. He has endured more than any small child should ever have to go through. He had an IV in his right hand for the first 5 days of his stay, and then they transfered it to his foot yesterday. He is happy to use both hands, but has a hard time walking around with a big board on his foot. I can't handle getting into specifics of other tests and procedures they have done to him because it makes me feel too depressed. Thank you to everyone who is praying for our little Jacob and our family. This has been the most trying experience of our lives and we wouldn't be able to endure it without the support of our family and friends. Jacob is still in the hospital as of today. He has a CT scan scheduled for tomorrow. I hope he is well enough to return home this week. Please keep him in your prayers.