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We went back to Cincinnati on Tuesday for a pulmonology visit to evaluate his lung function. Michael really struggled to get through the pulmonary function test until he was frustrated and crying and feeling like he was failing–it was obviously worse that the last one in September. The respiratory guy was very kind and gave him a minute and went and talked to Dr. B who came in and talked to Michael–love Dr. B. He talked to him for awhile and said it was up to him if he kept going or not but that it wasn’t meant to be so difficult for him and that he shouldn’t stress about it. Michael said he’d give it another go and he did and they did some milder versions, in the end they weren’t able to get any concrete numbers other than to show he is significantly worse than in September.
He was very concerned about the coming surgery given what he saw of Michael’s lung function. He was trying to phrase his word’s carefully so I had my mom take Michael out into the waiting room and he sat and talked with me for over an hour. He asked me if Dr. C had told us the risks to the surgery and I said we were made to understand that Michael was complicated and that it was going to be a difficult surgery and that there were high stakes, but nothing bluntly stated. I cannot tell you how calm, patient, and compassionate he was talking to me, giving me the blunt honesty but with utter graciousness. It was the hardest conversation I’ve had to date. He said that his concerns were not so much with the surgery itself, but with the days and weeks after it and that he wouldn’t really recommend the surgery being done without Michael being trached first. His reasons were multiple, but boiled downed to serious risks of pneumonia and lung complication without out–with it he will still have serious risks but without it he feels those risks double. Pain management–he feels he will likely be repeatedly intubated (tube down the throat, sedated) and then attempted to pull out, then pain meds make him breathe shallower and they will have to repeat, and etc. Michael will also be under less stress and more comfortable with a trach than with repeated intubation. We all agree that while a trach was the last thing we expected, that the reasoning is sound and worth doing.
The initial thinking was to go in the next week or so and have the trach placed, stay in the hospital 5 days for healing and training. Orthopedic surgeons are routinely concerned about things like trachs/feeding tubes, etc. where bacteria can colonize around the opening and then when they open up the back, there is a risk of the bacteria migrating to the back and settling around the rods. Dr. B (lung) talked to Dr. C (ortho) yesterday as well as Dr. R (ENT) and they all decided that a compromise was to complete the surgery with regular intubation and venting (something they’d do even if he had a trach) and then once his back was closed up they would put the trach in and take the breathing tube out and use the trach.
We had literally just sat down with Michael yesterday afternoon to explain what the doctor’s wanted to do when Dr. B called. Can I just say how impressed I am with him that he called me himself and not his coordinator? Anyway, he explained the above and I was very relieved that they would be doing it during surgery as he’ll be pretty drugged up for awhile anyway and it can heal up while he’s loopy and less stressed about it. He’ll most likely come home with the trach capped off until Dr. B feels he is completely out of the woods of needing it. Michael was, understandably, stressed and upset about this, it is very scary and in many ways he (and all of us) are at the end of our ropes in terms of stress and dealing with yet another thing. He does understand why they need to do it, though, and agreed that it was something we had to deal with and that he was glad he would be pretty loopy for awhile after the surgery.
We are all stretched thin emotionally, we keep thinking we can’t deal with one more thing and then, as I told my friend, “one more thing” walks up and slaps us in the face. I know that we are all strong, but we feel like glass that has crackled and only needs a tap to shatter. We won’t, but it is exhausting trying to hold it all together. We keep moving forward though, as that is the only thing we can do. I am so proud of my children, they are both strong and beautiful human beings and as I have told them since they were born–had I the chance to pick them out of all the millions of children in the world–I would have immediately picked each one of them.
What’s Next? We are heading down to Cincinnati on the 15th and 16th for some last minute checks, his hematologist wants a last check on his status, his GI wants a last check on his nutritional status, and Dr. B (lung) wants to do a 6 minute walk test to qualify him for portable oxygen. They’ll be doing a sleep oxygen test here at home to determine if he needs it during the night–he suspects that that status has changed from the fall and that he will need it.
The week after that is surgery week.
[I know as a writer that there is a fine line between honest speaking and melodrama and that the following can probably be read in either way--but the truth is, I think that sometimes we do the world a disservice in not speaking honestly, that there is something not quite healthy about our societal pressure to say "I'm fine, how are you" whenever we are ritually asked, "How are you today?" Sometimes we aren't fine and that is okay.]
While Cincinnati has been life changing for us in terms of finding out the information we needed to know, proactive in Michael’s care as a complete and complicated individual–to Michael, it is the worst place on earth and we’re heading back there tomorrow. Last night we were talking about it and getting ready for his shot and he said he wasn’t sure any more that he wanted to have the surgery, that maybe his back wasn’t that bad. I had to explain to him that the surgery really wasn’t a choice because if we do nothing, he will, at the very least, end up completely bent over. It was a difficult conversation and, I think, one of many to come over the next two months as we kick into gear getting ready for July 23rd. This week’s appointments have driven it home that it’s moving into “game time” and we’re all feeling the stress. My stomach is a constant ball of knots and sleep is starting, again, to come only at the point of exhaustion with music or a book playing loudly through my iPod so I can’t hear my heart and my brain saying over and over like I was three “I don’t want to do this, I don’t want to do this, I DON’T want to do this.”
I am thankful that we have this option, that we have people willing to do this surgery, but I don’t want to do this. It is terrifying, all the possibilities and the “what ifs” and the doctors “concerns” and I am glad they are thinking over every avenue and I am glad they are covering every base but every time I hear “there are concerns” or “this doctor has concerns” or “he is a complicated case and there are concerns” my stomach gets tighter and I wonder how I will breathe through 8-10 hours of surgery.
So, that’s the unsugarcoated (most definitely not a word) truth. We don’t want to do this, we are tired and scared and time has shrunk again and two months sounds incredibly close.
When Michael was a baby I played the role of superwoman very well, I had it all together, I was strong, doctor’s were impressed, etc. ad nauseum. The truth is, I’m older and I’m wiser and while my first instinct is still to play the superwoman and say “oh, everything is fine, we’re holding together, one day at a time, it will all work out, let’s go plant a tree, and how is your day???”–life is messy. It is glorious and amazing–but it is messy, and that is okay. So, tomorrow I may actually be superwoman for a day or even two or six, but maybe not–regardless, today, I’m not, today I’m a tired and scared mom who only wants one thing, what we all want for our children, that they be happy and healthy and I am sad that the road to not even healthy but ”maybe more healthy” for my son is one that includes this painful experience.
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.
I used to have the whole fabulously integrated uniform of a super hero. I had the armor plated jumpsuit, the all important mask settled carefully into place so as not to reveal my true identity, and a cape that fluttered behind me in the wind. I knew just what to say, just how to act, I was the mom that doctors thought was a nurse because I had it all together, I was the mom that sat in on procedures because I would not fall apart, and I very rarely cried in front of anyone. I’ve cried in front of three friends in the last week and I want to know–who took my cape?
Of course, I was also the one with the terrible “irritable bowel syndrome” thats true medical description was “woman who won’t cry or talk about her emotions or fears and so her body is forced to release all the pent up emotions SOME way so please pass her the Immodium and make sure it is the Advanced formula.”
I know that the way I handled the stress of Michael’s illnesses the first few years of his life was not healthy, I am so much older, and so much wiser, and I have learned so much–so why do I find myself digging through the back of my closet for my mask? I’ll do without the jumpsuit, and really, you can keep the cape, but I need the mask! I find myself annoyed with the world, irritated at the grown women at the mall stealing $6 earrings–really? you really MUST have those earrings even though don’t you realize there are children in the world with serious medical issues and PLEASE just let me buy you those earrings if they are so vital. I am irritated that our whole world has stopped and we are holding our breath yet again and waiting for it to, please, start turning–and the rest of the world keeps moving.
Still. I catch myself breathing little worthless staccato breaths and I stop and take a breath. I am kinder to myself this time around, I look in the mirror at tired, puffy eyes and tell myself it is okay, it is okay to be sad and afraid and it is okay to not be “just fine, I’m just fine, it’s all okay” to myself or to the world in general. It’s also okay to laugh, to stay up too late and watch TV with my kids, to dance around the house singing “I’m a Survivor” with Destiny’s Child while a ridiculous lump builds up in my throat and my daughter laughs and my son groans at what he deems to be the most irritating song ever–it’s okay.
I found a picture the other day when I got the sudden and uncontrollable urge to clean up a little shelf under my records that is full of a mess of everything I didn’t bother to find a place for–even though no one can see it and it isn’t bothering anything but who needs to work on that paper when I need to clean this space out NOW…now would be the time for that breath.
It’s a picture of my grandfather holding me when I was a baby and even though he died when I was eight and he never knew my children I know that he would have loved them so much, and I miss him painfully and inexplicably.
I’ve been thinking a lot about coping the last few weeks, and this is what it looks like. It looks like a woman who is going on too little sleep, cries more than usual, but also laughs and dances, who forgets to breathe but then remembers, who snaps too quickly at her husband but loves him and is glad he is here. Coping looks like me with no armor plated jumpsuit, no cape fluttering in the wind, and no mask. Just me.
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(Note: Originally posted in my personal blog but feel it is relevent for this one as well, still haven’t sorted out how I’ll deal with that in the future)
