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Tuesday, August 10, 2010

Another hospital update

We have some good news and some bad news. Looks like Ben may have picked up a slight cold while here. This morning he woke up phlegmy and sneezing. However, things seem to have been cleared out this morning with his treatments. During his play time in the play room I’ve been a disinfecting monster. I’ve changed his sheets and have wiped down every possible surface. Let’s pray that with the extra treatments he does, we avoid a cold.

The good news is that his vitamin levels are looking good. They draw blood every couple days (from his PICC line) to test his liver function. Too much Tobramycin can affect the liver so they want to make sure he’s on the right dosage and that it’s not causing any damage. Last week his vitamin D level were low so he was also put on an added vitamin D  dosage beyond his typical 1ml 2x a day ADEK intake. So far everything is looking great. Upping his enzymes has helped, his BM’s are back to normal.

On Monday, we plan on running some tests. Tests that we’ve been avoiding doing because they require some sedation. With his PICC line in and us staying at the hospital, it makes sense to get them done now. He will have a high-resolution CT scan done on his chest. It’s basically a chest x-ray that will show us if there is any lung damage or if any air is getting trapped. He will need to be slightly sedated for this because it can take awhile and holding him down is not an option. Dr. N also wants to run a clinical trial PFT test on him. Another Dr. N is coming out from Copenhagen and will arrive the Monday we are due to leave. If Ben cooperates, he will not need to be sedated, it can be preformed during his nap. I’m not too optimistic about that happening so we will see. The clinical trial is a new gas (not too sure of the name, it’s really long!) that gets inhaled into the lungs and can measure lung function in young CFer’s and preemies. Since Ben is around, Dr. N had hoped to perform the test of Ben. Of course, we completely trust him and know that he would not perform anything on Ben that could be harmful. I’m hoping we will get some good results from these tests. They will give us a baseline of Ben’s lung function so we have it to compare later on.

That’s it for now, we’ll continue to keep you updated!!


  1. Margaux, I hope Ben comes out of this hosp. visit just fine, and that you and Ryan get your prayers answered. Good Luck!!!

  2. Glad to hear things are looking up. Praying that if he did catch a little cold, the treatments and meds will clear it away quickly and not cause any setbacks. I will definitely be praying for the upcoming PFT's and CT Scan. Also praying that he won't have to be sedated for the PFTs. Hopefully you can get some answers! Keep us updated. I find the PFT testing on infants/young children very interesting, so would love to hear the results when you know them.


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