A Little Update

So we got some of the tests back and we are more confident now that he doesn't have cystic fibrosis or Shwachman Diamond Syndrome based on the levels of pancreatic functions they could measure, but the doctors will still not totally rule them out. He did another sweat test and his results were even better than the first time, which is good.

We are still awaiting many tests results and if he can get over whatever he has had for the past several weeks, he will be rescheduled for his CT scan of his chest at least. We are going to try to hold off on the one of his abdomen because they said that one is like getting 40 xrays worth of radiation and so unless we think it will give us some answers, we will not do it right now.

He is tolerating his night feeds a bit better, but we had to cut back to half because the full amount was just messing with his system too much.

He had actually lost some weight when we went to his doc for the post-hospital checkup, but he has weekly checks in the office coming up so we are hopeful he will show some improvements soon.

Jayden is still bordering on going back in the hospital right now though. His breathing is labored and we can only kick up his medicines so many times in a row before it becomes ineffective. Please continue to pray he can regain some steady health at least.

Ethan has been such a good big brother. He loves singing songs to Jayden when Jayden is upset about his treatments and kept rubbing his head to make him feel better. Ethan is getting quite excited about Christmas too.

Hope you all had a great Thanksgiving!

Read more...

Halfway Through

Jayden's Upper Gi came back completely normal today, which is fabulous. It means he does not have anything from the outside pushing on his airways (any growths or tumors). We tried to do the sweat test, but the think he was too dehydrated from not eating before the upper GI because he didn't have enough sweat to test. The doctors are thinking more and more that cystic fibrosis is not the cause of his medical issues, but still want him tested.

We just entered the period of his no eating for the procedures later today. He is on his IV fluids, but it's difficult for babies to understand why they can't eat when they are hungry. He will not be a happy baby come morning, but pray they can get him in the OR early. Also pray for the anesthesiologist and all the doctors who will be looking at his airways. He will have three procedures done and then they may take some biopsies as well to test, especially if they see any abnormalities.

I will update more as more test results come in.

Read more...