I’m sorry it’s been such a blogging hiatus. Have you ever been through a period of time that seems to simultaneously fly by and never move at all? I’ve been fixed in this odd paradox of dread and worry over my brother’s health concerns while trying to manage the back-and-forth visits and being busier than I ever have before at work. Of course, all at the same time. I haven’t been this busy in the office for maybe 2 years. What are the odds? We’ve been managing the long drives and I’ve chewed through my cell phone data plan at an alarming rate trying to keep things afloat in the office with everything that was dumped on me in the last month. And do it all with a smile.
So blogging has, unfortunately, been on hold. It’s hard because anyone who blogs knows that it takes months (sometimes years) to establish a blogging base and community and if you stop providing content you lose all of that effort. But, as Ben so often reminds me, I blog first and foremost because I like doing it for me. With all that, here’s what’s been going on behind the scenes of my little world…
I mentioned before that dealing with the hospital has been nothing short of a nightmare. I couldn’t dream up the things we’ve gone through. It’s horrifying and appalling. We’d hoped after several conversations with some of the dept heads that things would be better once the process got moving but instead we would up with so much more misinformation and a lifetime of ramifications Matt will have to deal with as a result.
Major surgery in the best of conditions terrifying. You pray constantly, try and distract yourself, and “think positive thoughts”. Really, what more can you do? Ben and I took three vacation days to be over with the family for surgery and immediate recovery. We had everything packed up the Monday before surgery and left right after work. It was a five hour drive and with one quick dinner stop we arrived in Minnesota at 9:30 pm. The whole next day was spent waiting. We had Matt’s processing appointment at 10 am and would have to sit and wait until his surgery at 5 pm. That’s a long time to wait in a hospital before anything even begins to happen.
Matt’s surgery was the latest planned surgery of the day so once he was actually wheeled down to the OR we were able to spread out in the family lounge and wait without any other people there. We watched Wheel of Fortune, put together a puzzle, and kept family and friends posted via email.
We were told to expect a 90 minute surgery and waited and waited and waited. By the time 8 pm went by we were all beyond exhausted and cranky from worry. Finally at 9:30 pm we were able to go and see him. There’s a lot of things I could say but I owe poor Matt a little privacy. He’s really been through the ringer on this. We stayed and stroked his arm and I was able to track down some paper towels to wipe the dried blood that was all over his non IV’ed arm and hand. Matt wasn’t coherent enough to really talk to us so we left at 11:45 pm with the nighttime schedule in place of who would stay at what time.
The next morning Matt was up and more alert but couldn’t really talk. He was very puffy from all the fluid they pumped him with during the surgery to test the kidney functions. I could tell though that although he was in a lot of pain he was really relieved to have the surgery behind him.
While we were chatting we got word that a huge snowstorm was coming through town. Ben, Alex, and I were going to head back early the next day (I had some “important” meetings come up at work that somehow couldn’t happen without me). We kept a worried eye on the radar and soon realized that we wouldn’t make it home in time unless we went today.
I tearfully said goodbye to Matt and we took off during the beginning of the storm. Our hope was to keep ahead of it enough that the roads wouldn’t be too bad. Meanwhile we received random pictures from Matt of his first meal and I cried for almost the entire first half of the drive because I didn’t want to leave him so soon.
Poor Ben had to try to keep me distracted and also deal with the increasingly poor visibility and road conditions. We left during rain and then it crossed over into sleet before turning back to snow again. Here’s a picture of a farm field we passed and you can see it looks more like a lake:
The 5 hour drive took almost 8 hours but we made it back in one piece! Wouldn’t you know it, all those people who had those pressing meetings ended up not even coming into work the next day because of the bad weather. Sigh.
The first couple of days were really long. I was working 10-12 hr days and then coming home and chatting with Mom and Matt about the recovery. There was always some new challenge that we hadn’t been told or made aware of and nights were spent researching, ordering, and helping with whatever we could do from home.
Matt had a major setback the Saturday before Easter and we drove back to be there with him. He stabilized and then we drove back late Easter Sunday. I have zero pictures for about a week and a half because I was just too exhausted to even take a picture of my coffee cup. It happens.
Boy is Matt one brave guy. I so admire how calm and brace he’s been through all of this. It’s incredible and I can’t imagine doing half as well in his shoes.❤ What a fighter.
Mom and Matt have been staying in a transplant house a few blocks from the hospital. Some transplant patients are allowed to stay there during their initial hospital recovery and it offers a full kitchen, private bathroom, and a place where the patient and caregiver can stay in a safe and sterile environment. Post-transplant, the immune system is completely suppressed so the new organ is given time to settle in and not be rejected. So it’s critical that the patients be away from anyone with any kind of illness.
Each patient gets a shelf in the fridge so they can complete the strict dietary guidelines required. (Matt & Mom had the top shelf) It didn’t look like some of the folks were doing much cooking at all. lol
The transplant house is brimming with baked goods that people from the community bring in. I find this so heartwarming that folks would bring in casseroles, lasagnas, and plenty of treats for these people. Most of the food Matt couldn’t eat but Mom said it was a morale booster to know that strangers were thinking of them during a really difficult time.
Matt’s 31st birthday fell in the middle of the week and unfortunately we weren’t there with him. We attempted some Skype video chats with Matt/Mom and Alex/Dad so we could sing happy birthday and watch him open his presents.
The biggest excitement so far is that Matt’s neck IV was finally able to be removed. Matt said it was horribly uncomfortable taped all around his neck and side of his face, plus the old tubes that were no longer in use were smelly (eww). And, of course, showering was a challenge when you can’t get any of it wet!
I don’t think I realized just how big that needle was until I saw it removed! Yikes. Yes, Matt was ecstatic the day they removed that!
We’re now coming up on 4 weeks post surgery. The water retention is now gone (Matt gained 9 pounds during surgery – all fluids!!) but we’re in that tricky stage of trying to get the right combo of meds. You wouldn’t believe how many he has to take.
Each day I pray for quick healing and less negative side effects. I think most people assume once you get a new organ you are “fixed” or something but his previous issues combined with the new medication cocktails are going to be a lifelong worry. He caught one of those nasty bacterial infections in the hospital and we’re focusing on fighting that now. Don’t get me started on that subject!
But though the days and weeks have felt long and exhausting for me I know they’ve been much worse for Mom and Matt. Mom’s been with Matt every minute since the transplant and has been doing all the caregiving these past weeks so she’s seen and has had to deal with all of the things that have happened up close as well as be the moral support Matt’s needed.
We’re getting through, one day at a time. I think we could all use a vacation and some relaxation time though! It’s been pretty stressful and I’ve been feeling light chest pains on especially difficult days. Not great but just means I need to find a way to breathe more through this process.
So that’s what’s been going on around these parts. We got another little snowstorm on Friday and I think all the birds and flowers are confused about it. All of last week was overcast and gloomy and I think a lot of people are feeling the effects of Spring not being here yet. I could use some warmer weather and clear streets – a short walk during the lunch hour at work would really do me some good – but it looks like we may have one more week to go.
Thanks for sticking around. It’s been a heck of a month but we’ll get through!
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