How tired can I possibly get? I haven't felt like this since Evan was a baby. It's not that Ev isn't sleeping well, he only wakes up once or twice a night. It's not that I am the only one getting up with him; Harold & I alternate nights. It's just that when I try to go to sleep my mind goes into overdrive. Or if I do sleep (& Harold has this happen also) I dream about IV's & flushing lines & sundry medical things. Quick, someone call the waaambulance! (If you've never seen "The Kid" with Bruce Willis, go rent it right now!).
Our trip to the surgeon's & Infections Disease doc went really well. Of course, it took us 3 hours just to pack everything into the van. Oh, and 3 minutes for Evan to maneuver into the van. Hooray! The surgeons spent about 5 minutes looking at Evan. They were pleased with how his hip is healing & his femur hasn't shifted out of where they placed it, which is good. I asked if there was any way to moved the surgery date closer but no go. The antibiotics have to have a certain amount of time to work, so they can't move the date up.
The I.D. doc was very, very, nice and very informative. (We hadn't met her before in person.) The good news is that the type of staph that Evan has in the "puniest" kind, as she put it. The not-so-good news was that we will have to do the IV antibiotic infusions twice a day for the next 4-6 months. (More on that subject later.) The reason is that because there are now metal pins in Ev's hip, & his femur will have metal in it also, the staph germs love to hang out around the metal. If they get there, they become resistant, which is bad. So the infusions have to continue to make sure that doesn't happen. There is an oral antibiotic that would do the same thing, except that it bottoms out your white count & compromises bone marrow production. Since Evan's white count is naturally low because of Down's, that is not an option for him.
On an up note she did tell us that Evan could get out around people, just to try to keep him away from sick people. So we all went to church on Easter Sunday! I don't think I've ever appreciated having us all at church at one time so much before. Of course, it wore Evan out, but he was so happy to go. One of his friends gave his life to the Lord, and Evan was happy to be there for that. It is a big production to get Ev from point A to point B, so we will probably only go out a couple of times a week. But it's nice to have the option for sure!
Now, about the subject of infusions for the next few months. I didn't realize it at the time, but that bit of news really set me back and, frankly, made me angry. (It would take me 3 days to figure out that I was angry about that.) As Harold & I have tried to talk it through, I realize that the prospect of Evan or either Harold or I not being able to be out past 8pm for the next several months was really depressing & frustrating me.
We are in the process of trying to find a way to accommodate this fact. I have a call in to the Bureau of Special Health Care Needs, to find out if they can make an exception to the "no nurse unless she's there for 4 hours" rule, especially since this is a long-term situation. I'm going to try to explain it as a respite care issue & also as a work issue. As a pastoral couple, a lot of what we do is in the evening (Wednesday night service for instance.) Also, good heavens, we do have a marriage to maintain! So our hope is an exception will be made on that basis. We have had a friend or two offer to learn to do the infusions, which we are also considering & will probably do.
Anyway, when I woke up yesterday morning, with a dark, fuzzy cloud over my head from muddled sleep & stress dreams, I thought to myself, "No matter how stressed I am right now, the fact is, Christ has risen and this will all be over one day. I get to go live with Him for eternity." And that is a hope we can all cling to, right?