Labor Day Weekend 2006

We had hoped this weekend to travel to Killeen, Texas and visit a family who used to live in our neighborhood and to go to their son’s birthday party. We had to put these plans aside because Joshua got sick last week with fever, low oxygen sats during the day and more dehydration. He also had some trouble a couple of days with the muscles in his legs, right arm and back tensing up. I even had to help him get up out of bed, get to the bathroom and to get dressed one morning.

We finally got Joshua in to see his primary doctor (who happens to be his pulmonologist) on Friday. She ordered some blood tests and a sputum culture (by suctioning some secretions from his trach). The blood test showed that his sodium level was way too high, and I believe the doctor mentioned his PH level was high, as well. The results from the sputum culture, which test for infection around his trach, will not be ready until after the holiday weekend. The doctor consulted with his endocrinologist and together they decided Joshua should start taking Cortef (a steroid) and increase his DDAVP (an anti-diuretic pill) to help him retain fluids hoping that will make his sodium levels go back down. The problem with that is it makes Joshua puffy.

The respiratory therapist at the doctor’s office is putting in an order for an oxygen concentrator because we have recently gone through so many oxygen tanks. That may actually be a big help when we go to Chicago, because some airlines will only allow oxygen concentrators – not oxygen canisters onboard.

Speaking of the trip to Chicago, that will be happening toward the end of this month. Josh will be admitted to Rush Hospital the 24th-28th so Dr. Debra Weese-Mayer can evaluate him. She has more experience with patients with Idiopathic congenital central hypoventilation syndrome than any in the San Antonio area. She is also the doctor who performed a test on Joshua when he was in the hospital here last year to check for a PHOX2b gene mutation. He did NOT test positive for it, and we have heard that is common among the patients with Late Onset Central Hypoventilation Syndrome, like Josh.

We are hopeful that Dr. Weese-Mayer will agree with Joshua’s pulmonologist here that he would be a good candidate to receive the diaphragmatic pacemaker. It’s a device implanted in the patient, that triggers his diaphragm to contract and make his lungs take deeper breaths. We think it will help him eliminate his need for a ventilator, which would mean he would no longer need his trach. After Josh gets rid of his trach and his neck heals up, he would be able to go swimming again (we hope) and to submerge in the bathtub again.

As I said before, we do not know what is causing Joshua to still run fevers, but he had a 100.4 temperature again this morning (Sunday). He seemed to feel pretty good and was happy and all. Then, the next time we checked, at lunch, he was down to 98.6 again. He was having trouble with bedwetting that no matter what we did he could not control. When he began taking DDAVP, that problem seemed to go away right away. Now that the doctor has increased how much he takes of it, he woke this morning with a wet bed again. Then, just now, with a b.m., Josh experienced some rectal bleeding – something that has never happened before. It didn’t last long – but is something we will have to keep an eye on and report to the doctor when we next see or talk to her (which I expect will happen on Tuesday after the holiday is over).