Update & Photos

This morning after we arrived we learned that the surgeons decided to do what I call the plug and play. They removed the G-tube from the stoma (opening) and left it out for about 30 minutes, then put it back into place. The stomas for G-tubes close rather quickly and we were told after 30 minutes it was rather snug to get back in. Unfortunately there is no way to tell for sure if this worked except to wait and see. With all the other positive this week, this has to follow suit...we can feel it!

The meeting this morning went fine. We actually did not get any new information, we basically signed paperwork. We should get a response in about ten days about approval. We certainly hope this  scenario works itself out so we do not have to wait for the model waiver. We have narrowed the field in terms of prospective agencies for private nurses. We have found one that actually has us interview prospective nurses and choose several we would like to have care for Elias. We found that aspect particularly appealing. It is still hard to be able to determine what exactly our benefits will be as well as when Elias will be discharged. It still seems to be about a month away at the earliest. We got our checklist on things we need to take care of education wise prior to his leaving. The list was not too overwhelming, but certainly gives us some things to work on. One thing we are going to try the next few weeks is changing the trach with just one person, to simulate an emergency scenario when one of us happens to be alone with Elias. This seems a little more intimidating, but welcomed to have the experience. You work so much on changing it with another person (which is ideally how it should be) but you never know when you might have to do it alone. At least we will be more confident having done it before successfully and it will be one less thing to have to stress over in the heat of battle.  We also discussed some of the community resources that we will need to connect with. Things like making sure the Fire Department knows about Elias trach and which room he sleeps in. Contacting the power company so that our area gets top priority for restoration during a power outage, same with the phone company. Very interesting to know that these community necessities have programs in place to help so much with families that have medical equipment and are dependant on them for their lives. Once we know approximately how much power all of Elias medical equipment will require we are considering getting a small back-up generator to get us through any outages. If anyone has any suggestions on this we are open to hearing them, please share them.

Finally tonight, we leave you with a few photos of Elias after his nurse put him in a swing today. He really seemed to enjoy it. It calmed him down considerably as he had been fussy because it was time for Mommy & Daddy to leave. In some of the photos you can see the tears still around his eyes. It made us very happy to see he enjoyed that so much and we look forward to getting a ton of use out of the one Grandma M bought for him once he gets home.