Tuesday, August 26, 2008

Family Meeting Postponed

It will be next week sometime, probably next Tuesday. While it means having to wait another week for some solid answers, it also gives us another week in the NICU rather than a transitional hospital. The medical team also wants one of the two nurses that have had him the most to be present. It also allows the head of the NICU to potentially attend as well, he was away this week. He has been following Elias' case and has been particularly helpful. So as usual everything happens for a reason.

It is probably very advantageous for the medical team since there is something going on with Elias that they are not quite able to put their finger on. We are still waiting for the blood culture from Saturday to come back. They also did a urinalysis today. The G-tube site was looking a tiny bit better, but nothing to get excited about. There was some leakage again today that is more significant than what we have been seeing. Bottom line is this thing is really becoming an inconsistent nightmare.

We have started the search for private duty nursing. We received a list of agencies that work with the Waiver Program. There are twenty-eight that participate in our county, so now we begin the daunting task of interviewing them and weeding them out. More tomorrow...!!

1 comment:

  1. His tube site looks horrible! Usually when Sean's looks like this, it is because of both a bacterial and fungal infection. Sean is older now, but we soak in salt baths and do a daily cleansing of hibclens soap, warm water, dry it real well and put on the benedine, let it dry, put on nystatin, then put on 2x2 splits. We do this change many times during the day. We also allow some air time to the stoma. Beth Marcus at Childrens Hospital Los Angeles is the best wound care Doctor around. I know many parents consult her for help. She has saved Sean's life many times.
    We also change Sean's tube each month or more when an infection is present. It really helps keep things cleaner and germ free.

    Good luck as something is not right.

    Sean, 9yrs old VACTERLS


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