After doing Katie’s senior pictures, I had to talk Michael into doing a few pictures for me. By talk, I mean bribe, bargain, and cajole him to let me do “a few” pictures. Joanna and I took him out and got more than a few and I’m thrilled with getting more than twenty of them!! I’ll add those to the portrait ones we did earlier this year and have a nice set of senior pictures for him. I’m not embarrassed to insist my children are gorgeous.

Okay, today is Monday, time to regroup and update where we are at. We are still at the hospital and have a “no earlier than Wednesday” leave date. Michael’s culture’s grow very slowly, so just when they think they are in the clear (and normally would be), the next day they start to grow something. His first three days of cultures grew bacteria, Friday’s we should know pretty well by tonight, which, of course, we are hoping are clear. Apparently bacteria can lurk a bit in corners of the heart and etc. and they want to be sure they have nailed any lurkers, so Wednesday is the earliest.

Of course, if any of the cultures grow anything new, then plan B would have to be enacted. It sounds to me like plan B would be pulling his PICC line and replacing it (although at that point I would discuss whether we could just pull it, be without it for a couple weeks until his central line goes in on the 30th–although they are talking about IV antibiotics at home so then we might as well have the PICC, we’ll see).

Michael is feeling better, no fever spikes, no hives, still a nasty cough but it doesn’t have the really nasty sound of last week. Those cultures (respiratory) are all in the  clear so at this point its just a cold we are dealing with–one benefit of all these antibiotics for the blood infection is I doubt pneumonia even had a chance to grow in that climate!  He is, understandably, tired of being here, tired of being in this room, and ready to go home. Still, as far as hospital rooms go, he has a pretty sweet set up with most of the comforts of home.

One interesting twist, we cringe at colds with him, for good reason. When we hear the sound of a cough shift we get a cold knot in the pit of our stomachs, especially now with his respiratory function so low. In this instance, though, having that (unrelated) cough was hugely important. Sepsis becomes incredibly dangerous if not caught in the first 24-48 hours, exponentially so for kid with compromised immune system. It takes a lot for Michael to have ANY kind of a fever so I doubt that he ever would have gotten a blood culture done that soon if it hadn’t been for us  going in Monday for an x-ray of his lungs. Conversely, without the blood infection he probably would not be nailed with high powered antibiotics which have certainly kept pneumonia away. Just saying. Things happen for a reason and him having two unrelated issues whose treatments interplayed to benefit the other ends up being a good thing—-though obviously having neither would be best!

We had our hopes raised and then dashed today and for an hour or two we thought we would be heading home today. Michael had a rough night last night with coughing, a splurt of hives and a dash of mild fever, and being up all night going to the bathroom from the TPN. This morning his hem (blood doctor) came in and said that nothing had grown and they believed the first culture must have been contaminated and that she was comfortable with him going home. I talked to the nurse as I felt uneasy as *something* was obviously up for him to be doing any kind of fever and his coughing was really awful although everyone agreed it was keeping stuff up and out of his lungs. We hadn’t met with his pulmonologist yesterday so she called and he stopped over to see Michael. He said his lungs sounded good for him and, like the hem, was comfortable sending him home after they did a different culture way down his nose into his throat and that he would call something in tomorrow if any infection was running around there. I still felt uneasy about it but I understand it is important for him to *not* be in the hospital if at all possible so as not to catch something there, so I told Michael that it looked like he would be going home. He was half asleep and said he didn’t want to go home (a first time in 19 years), shocked, I asked him why, and he said he was too sick to go home and went back to sleep. Ten minutes later, his hem Dr. zipped in and said, “Um, sorry, but you aren’t going anywhere.” Apparently Michael knows his own body, the culture from yesterday (which was *after* he was nailed with some heavy hitting antibiotics) had grown more than one type of germ/bacteria/infection whatever you will.

So they did a culture down his nose and into his throat for his lung doctor, we’ll see what that shows tomorrow on that end. The plan is to hit him again with the “big gun” antibiotic that they hit him with Monday and changed up the secondary antibiotic to one they hope is more effective killing the bacteria. As I understand it, the goal is to hit hard and knock it out of his system before it can overwhelm his system and put his body in shock (sepsis). His nurse said not to expect to go home until sometime next week, so we’ll just take it a day at a time.

Hopefully he gets more sleep tonight since it isn’t a TPN night (which makes him go to the bathroom all night), we could use a good night sleep!

Michael has had a cold that got nasty over the weekend, and then on Monday he ran a slight temperature, which with his immune issues is something to pay attention to. We went in to see his hematologist because his lung doctor was very busy to get an x-ray. She went ahead and cultured his throat, nose, and blood and we went home to wait as his x-ray didn’t look too bad. Yesterday morning (Tuesday) his doctor called and said his blood culture was positive for an infection in the blood and that we needed to come in. The cultures take a range of 24 hours to 4 days for full growth so they didn’t have a particular strain or known sensitivity (which antibiotic would best kill it) but they didn’t want to wait that long. He came in and they hit him with two antibiotics, one of which is a “big gun”–which also started some hives, but they caught them quickly. Right now he is on a second antibiotic every 8 hours while they find out more from the first culture and start to get results from the second culture they did yesterday and they took another early this morning. His fever was up last night and he had a bit of a rough patch but he was feeling better around 10 or 11pm and he slept pretty good (other than the normal getting woke up every couple hours being checked) last night with some medication.

His fever is down this morning, though his heart rate was up a bit and he is tired and has some pain around his left rib cage. So we’re just in a “wait and see” mode at the moment as we wait for test results.

We went to Cincinnati just for a quick visit for Dr. P (his GI) to see him as he will be out of town 3 weeks next month so it would be too long between checkups–they usually try to coordinate visits with other doctors. His weight is holding well on the same TPN volume doing it every other day, so that is great news as we really like having “off nights” with no hookup. His potassium was low so he is going to adjust that and retest after a couple weeks. We also discussed the central line as Michael’s local hematologist who will be coordinating all his care now was 100% for the central line. He recommended Dr. Ryckman there because he is the doctor who closed up an old, scarred up feeding tube site this year–we really liked him and found him very gracious and compassionate. Dr. P said he has had recent conversations with Dr. R about the central line and even about his rib cage (Dr. R is a general and thoracic surgeon), so I contacted their office today to get the ball rolling on that. We will be having a BMB done at the same time to make use of the sedation as obviously we want to sedate him as little as possible.

His bloodwork from Monday continued its ever creeping down:

Platelets: 24,000 (all time low I believe, again, just watching for now)

White Cells: 1.8 (this is low for him on GCSF)

ANC: 1200 (above 1000, so just going to watch the next one)

HGB: 10.5 (will transfuse under 10)

I will post when we have a date on the central line/BMB, other than that, I believe our next trip will be in November to see Dr. H and Dr. P and meet up with Sue, Dee, and Clarke from New Orleans

We’re back home now from our trip to Cincinnati after seeing Dr. P (GI) and Dr. H (SDS, hem).

GI: Michael weighed 83.5 pounds, 13.5 pounds up from the start of TPN, fantastic! They don’t want him to put on anymore weight though, and want to find a dosage that holds him steady between 81.5-84 pounds (he is 4′8″ tall). We discussed the fact that Michael obviously cannot go back to no nutritional support or he will simply go back to the way he was pre-TPN. We have to make a long term decision in whether to keep him on TPN and place a central line (same as his PICC, but in his chest–more permanent) OR place a J G tube in his stomach that will pass through the stomach into the small intestine for formula feedings. There are pros and cons for both and we are currently leaning towards the central line due to access for blood draws/IVs and etc. but we are still weighing the options. Either one will have to be placed under sedation, but we are hoping to do his bone marrow tap at the same time and maximize the sedation–we’re waiting to hear back about that. For now, they are going to give him the same mix of TPN every other day to see if that will maintain his weight–it may go to 5x a week if he starts loosing again.

HEM: There is not much to do at this point except watch and deal with each situation as it comes. His bone marrow is obviously declining but without the possibility of doing a bone marrow transfusion we will have to support with regular transfusions when the time comes. His white cells are staying steady with his every other day GCSF shots, he is currently at a dose of 5mcg per kilo, which is acceptable and gives us some wiggle room to increase if his white cells start dropping more or he gets more infections. When you get close to 15mcg per kilo you are running a risk of triggering leukemia. His red blood cells can be transfused when they need to, not getting close on that yet. His platelets are the ones that are steadily dropping, Mondays results being 26,000 and 27,000 (Toledo labs) the week before. They were at 34,000 on Tuesday in Cinci which, while better than 26,000, are still the lowest since Sept. taken in Cinci, so the downward trend is quite obvious. Dr. Harris wants to hold off giving a platelet transfusion as long as possible as a) the more transfusions you get the higher risk of reaction and b) the more transfusions you get the higher the likelihood the body stops reacting to them. Because Michael isn’t running around playing sports, they would like to try and let it go down to 10,000 before transfusing but will start watching for a trigger point under 20,000.

So the goal both nutritionally and hematologically is to keep him maximized as best as possible and watch and wait–and I really don’t do waiting well. It was discouraging to be in Cincinnati without a positive goal to shoot for and to be shifting from proactive to supportive. I’ll be setting up consultations with all his local doctors next week to get everyone on the same page and get input from them as well as to where to go from here.

We’re in Cincinnati tonight for a couple appointments and a get-together. We’ll be seeing Dr. H (hematologist) and Dr. P (GI) to figure out a plan for maximizing Michael’s health. Michael has his blood drawn every week to keep his TPN (IV nutrition) regulated and while we were on the way here the nursing company called me. His platelets had come back at 26,000 which is an all time low for him, she was concerned and wanted to make sure a doctor was made aware. I let her know we’d be seeing doctors tomorrow and she emailed me the counts flagged:

WBC 3.1 LOW (this isn’t too bad for him actually)

RBC 3.41 LOW

HGB 11.5 LOW

HEMATOCRIT 32.9 LOW

PLATELET COUNT 26 LOW

RDW 15.2 HIGH

ABSOLUTE LYMPHOCYTES 0.6 LOW

We’ll go over it all with Dr. H tomorrow and see what needs to be done. Obviously we have to address his reaction to the platelets on the surgery day as he is going to need a transfusion at some point–this is one of the more immediate things that need to be figured out. I’ll post more tomorrow night.

Quite a few people in our SDS group are in town for appointments so there is a get-together tomorrow night of around 7 families, so we’re looking forward to that!

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.