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We are all to varying degrees feeling like we are a in limbo, though for myself, I feel more like a huge, heavy bean bag chair is on top of me weighting me down. All of our focus and energy has been towards getting Michael to the surgery that was suppose to take place on Thursday. Now, we’re a bit adrift and needing to get our feet under us again. In the meantime, Michael’s TPN is continuing, his appetite is down so I am relieved that is in place, we’ll be going back to Cincinnati the week of the 17th to see his GI to see if the amount needs adjusting now that we aren’t beefing him up for surgery but are rather maintaining his weight. We’ll also be seeing the SDS/hematologist to pull together a “where do we go from here” plan as well. All of his oxygen supplies are in place now, a respiratory therapist came out to day to do the last bits of things for portability. It is strange having all the paraphernalia around again and it takes me back to the first three years. Michael was frustrated about it but he is getting comfortable with it in the home, it is just difficult and embarrassing for him to walk around in public with it. We found a great deal on a wheelchair on Amazon and that came in, Michael and I love it as it is lightweight, folds up easy, and turns on a dime. I think we are just all disconcerted with the step up in medical needs and the sound of the big processor that we use in the house that pulls the oxygen out of the room air sounds too much like a respirator for my comfort. It will get easier and I have decided tomorrow I will accomplish something, color my hair, clean up, work on thank you cards–something! Michael’s having some friends over and is looking forward to that and Katie will probably sleep all day after being at Cedar Point all day today. Life moves forward as it always does.
We really appreciate all of your continued love, support, prayers, and thoughts as we try to figure out where we go from here!
I remember multiple times I have said or written about wishing that I had a remote control for life with a giant pause button on it. Since the advent of the DVR for recording television, my whole family moans and groans if we are at a hotel and we have to watch TV without being able to pause it, rewind it, fast forward it. Sometimes life barrels forward at such a speed that we just need to be able to hit pause, breathe, and reevaluate it. Thursday morning before “the surgery”—and this day had taken on the quality of quotation marks or capitals giving it weight and substance so that it stood out bold and powerful as The Surgery—we were given a pause button.
“You can face anything properly, elegantly, when you meet life where it is, in the moment,” Ajahn Sumano Bhikkhu, wrote in Meeting the Monkey Halfway. I got this Daily Dharma (a dharma is a Buddhist teaching) on my phone at 4:30am when I was getting ready to go to the hospital. With Michael’s reaction to the platelet transfusion and the way his body struggled with a little fluid in his lung due to the reaction forced us to meet life right where it was, right in that moment. It stripped us of the ability to sugar coat the surgery with our hopes and dreams, it stripped us of the ability to wrap it in wishes and make it the answer to all his medical problems. We were forced to meet life where it was in that very moment and pause and ask ourselves, are we meeting this moment of Michael’s health in the right way? The quote ended, “We live life wisely and compassionately in the beginning, middle, and end.” In that very moment when we had to see his health and the illusion of The Surgery as anything but a surgery with serious ramifications, we were given an opportunity to choose again, to make certain that our choice was the wise and compassionate one and not one in which our grasping at hope had the great potential to create suffering for Michael and ourselves.
While we may continue to struggle with the issue of whether to go forward and pursue a surgery or not, I am grateful for that moment that allowed us to pause and rethink how we choose to go forward and meet the difficulties that lie ahead with Michael. It has reminded us what we have believed from the day he was born, that quality of life is precious and, for us, more important than quantity.
We drove away from the hospital three days latter with a tangle of emotions. There was relief to be leaving the hospital with both my children talking in the back of the van, there was a strange sense of let down that the day we had pinned everything on had come and gone and we were left not knowing what tomorrow holds. Still, we have been reminded not to pin our hopes on a specific day in the future or a specific event like a surgery and had chosen to meet life where it is and life is ever only in that very moment.
Michael’s x-ray shows normal for him and we were able to have an oxygen tank delivered so unless hematology wants something else–we should get discharged tonight. We are staying the night at a hotel just. Have one more night nearby in case anything gets dicey, then we’ll head home tomorrow.
Michael is doing well this morning, last night he didn’t have any fever and slept well, so we feel like barring anything the cultures show, he is probably back to pre-mess health–they are doing an x-ray to make certain. I just spoke with Dr. Crawford, the ortho surgeon, and told him that everyone was in agreement that we would not be going forward with the surgery on Monday and that we would be stepping back and regrouping. He agreed we were between a rock and a hard place and said that should we decide to reschedule that they would open their schedules to that. No information on being released yet, but I think they want to see the x-ray first.
Michael has done much better today with no fever starting up again. He is doing fine on no oxygen when just sitting but definitely needs it when doing any walking, even just to the bathroom. That is what he is now supposed to do at home so we’re getting closer to his normal.
Unless we hear something major tomorrow that changes our minds we are not planning to go forward with the surgery this Monday. We feel that what happened on Thursday was a giant pause button being pushed so that we were forced to step back and really assess how we want to move forward. New risks were brought to light that has made everyone (including some doctors) rethink thos surgery. It is a difficult time that would be unbearable without the support of our family and widening circle of friends.
Last night Michael spiked a fever and was again struggling to keep his oxygen sats up with any movement, his heart rate kept spiking and hovering around 155-160 most of the night. They did an x-ray at around 2am which shows some possibility of pneumonia brewing but it is hard to tell with him. The pulmonary team just came in and they reiterated that it was very difficult to tell on the right side if there was some pneumonia brewing or it was a standard x-ray for that side and even left over fluid from yesterday morning’s reaction. His fever is gone this morning and he is more comfortable but he hasn’t really attempted to get up yet, so we’ll see what happens. Their feeling is to treat it as if it is so that they don’t miss something.
There is question by ortho of rescheduling the surgery on Monday, but we (along with Dr. B and anesthesia) have extremely serious concerns about surgery at this point that need to be addressed before a reschedule at any time is likely–and certainly whatever is going on now would have to be cleared up completely.
Michael had been pretty comfortable all night, playing video games, reading, watching TV etc. but hadn’t really been walking around at all, hadn’t even gone to the restroom. After his 10pm breathing treatment they tried taking him off oxygen and I just kept an eye on his sats. He hovered around 90/91, sometimes going up to 92 (his normal room air is 96). Then he started dipping below 90 pretty consistently so we put it back on but just a very little amount of oxygen and that was enough to keep him 92/93. He had to use the restroom so he walked the very short distance from bed to bathroom, came out white as a sheet, sweaty, shaky, and his sats were 78 until we got some oxygen on and bumped it up. His heart rate is still jumping all over so we definitely still have some fluid on the lungs mucking about in there. I’m not sure if they’ll try again tonight or not, the respiratory therapist (who we like a lot, he has seen Michael here more than once so knows how he “sounds” normally) said the standard rule is usually that they will not release until he can stay off oxygen for 8 hours straight…now, it may be different in that Michael was prescribed oxygen for walking before we came. We’ll see in the morning with rounds. He’s sleeping now on oxygen and staying saturated fine with that.
ETA: The nurse just came in and he has a fever, they’ll be drawing labs and probably starting antibiotics.
Michael is more comfortable now although they haven’t been able to get him off oxygen yet and his heart rate still spikes when he sits up or walks. The plan is to work to wean him off the oxygen tonight and possibly go home in the morning.
I’m sorry for the delay in info-rough morning. Prior to surgery they gave Michael platelets last night and this morning. After the second bag his oxygen started dropping and his heartrate jumped up and he was struggling to breathe. They did two aerosals in a row and it helped but his oxygen wouldn’t stabalize. They took an x-ray and his lungs had fluid in them. They gave him lasix (which is a dioretic to flush out fluids) which helped but he remained struggling with oxygen. They were quite blunt that he had more than a 50% chance of dying if we went ahead and if he lived a 50% chance of brain damage as the would have to give him 10x the amount of blood products in surgery and over all those hours and didn’t feel they could maintain his oxygen levels. We then had a long and painful conversation about the future which I will go into later-very rough day. He is comfortable now, still queazy and having to be on oxygen. We’ll be here tonight but haven’t heard for certain when we’ll go home.
We appreciate all your continued thoughts and prayers.
I will update shortly but surgery has been cancelled for today at least. Regrouping is necessary and I will update.
