Sugery Date

We got a call from Cincinnati yesterday with Michael’s spine surgery information. The surgery will be July 23rd, a Thursday. We’ll be in Cincinnati the third week of May and then the third week of June and then the surgery month possibly just the day before, it depends on what all the other doctor’s want. At some point around 6 weeks before they will start tube feedings bypassing his stomach and going directly into his intestines to help bolster him up. They said he’ll be in a minimum of 6 days (may be more given his other issues, that is just what the normal stay is) and then we’ll need to stay in the hotel for at least 3 days after he is released before being checked again and then can go home. They said he’ll be on pretty heavy pain killers for 4 or 5 weeks. Obviously there are a lot of concerns given his other health issues, especially the collapsed airway so many doctor’s will be coming up with game plans to give him the best chance possible.

While we are glad to have a date, it also feels much more final and scary and incredibly overwhelming–the thought of waiting through this 8-10 hour surgery makes me sick. The nurse was very kind and helpful, but there was a lot of stress on his other medical issues and concerns that were, as I said, overwhelming at the very least. His back seems to twist more and more and he is getting more uncomfortable with more pain in his back then he was before, so we are very relieved that at least we have found a surgeon who will fix this. On the other hand we are discouraged after such a long year since we found out his airway was collapsed that he will be going through such a major surgery and in the end we will most likely still be left with the airway collapse issue.

On a more positive note, he had his second dose of IVIG treatment at the hospital last week and other than some headache issues he did well with it. He has had a cold and definitely is more wheezy and out of breath of late, but I feel the IVIG probably helped keep it just a cold and not pneumonia. The plan is to continue these through the surgery and, I’m guessing, during the recovery time after. Another bit of good news, he gained 2 pounds in the month between treatments–while not a lot, I am still thrilled that he gained and didn’t loose weight again!

Finally, on a more personal note, I want to thank everyone for their care, concern, prayers, good vibes, and etc. I sometimes feel guilty that I don’t have something positive to say, that the people surrounding people who are ill are just waiting for that “yay, it’s all better” call, email, text, etc. and I fail to deliver month after month. The truth is that chronic illness is debilitating for the person who is ill, for their family members, and for those who are supporting the family. There is the sense of “never ending” getting hit with one thing after another until you just want to drop flat on the ground to miss the next incoming mortar round. It is hard, for everyone supporting us, I know, to sustain that support through a very long year of not a lot of good news. I don’t know if you know how important that support is to us. Chronic illness is incredibly isolating, your world literally stands still and you can see other lives whizzing by around while the clock moves almost imperceptively moment by moment, especially, for me, the nights. Sometimes you feel like you are literally drowning in fears, concerns, plans, and  information juggling–and that one text saying “how are you” or the quick call saying “I’m thinking of you” or the goofy Facebook message and the shoulder to cry on that knows they can’t fix anything but are here–they literally feel like they save my sanity sometimes.  Thank you.