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.
We’re all settled in and situated for the night in Cincinnati. Michael was admitted into the hospital and is getting a platelet transplant as we speak. They’re going to check his counts at midnight and then if he needs more, give him more during the night. They want to keep him over 100,000 if possible (last weeks check was 32,000). Surgery is at 7:30am and the OR is booked for 7 hours. I plan on starting a post and just adding updates to the same post throughout the day with times next to the update so if you check and it’s the same post title, look at the actual post for an update.
Thank you all for your thoughts and prayers, it’s been a long road getting to this point and I know it’s going to be a long road after, but this is an important step in the journey and we’re glad we have all of you to take it with.
We’re wrapping things up at home to get ready to head out tomorrow and one of the things we did yesterday was to have my sister Joanna snap some family pictures at my mom’s house. They turned out really nice and you can click on the above picture to see the rest of them.
Today we’re at Toledo Hospital getting an IVIG treatment for Michael, they wanted to squeeze one more in before surgery. Tonight will be packing and packing and cleaning and then we’re heading out tomorrow morning. I called the Ronald McDonald House this morning and they took all our information, including car make and birthdates and etc. so I’m HOPING that we can get straight in. We’re suppose to call tomorrow and see where the list status is at. My dad has some hotel points to give us a buffer so hopefully we’ll get in at some point.
Tomorrow we’ll be getting Michael admitted and he’ll be getting platelet and plasma transfusions.
Yes, today was a very very crappy day indeed, and exhausting and I’m joining Michael in hating Cincinnati, at least for the day (yes, I love Cincinnati Children’s and appreciate everything they are doing, just, for today, I hate Cincinnati).
Our first visit was to Infectious Disease who are going to work with the doctor’s to make sure Michael is well covered in the right antibiotics to keep him healthy and infection free after the surgery. They gave us an antibacterial mouth wash to use all week leading up to the surgery, some kind of antibacterial nose solution to help staph not colonize in the nose, and some more antibacterial wash to use 5 days before. They also recommended two antibiotics to give by IV just before the surgery itself. We told them our issues with Michael’s poor arm, he really has no solid skin left on his arm due to an allergy to tegaderm that we never knew he had and so they called in the Vascular skin/PICC unit to see what they could do. Unfortunately a combination of the tubing being out too far and the condition of his skin made it so they had to decide to pull the PICC line and reinsert it in the other arm tomorrow. As much as Michael didn’t want to and as much as I wanted to avoid that for him, I completely agreed with the decision as that arm just cannot even hold a patch long because his skin just falls off and with it the patch. It made me sick to even think of sticking something else on it! I explained how we found on brand that didn’t bother his skin as much (Sorbaview) but that we could not get it around us anywhere. They had some! They are in the process of giving it a trial run.
Anyway, they pulled the PICC out (luckily it was painless, just not pulling up the dressing and cleaning his poor skin) and we headed over to see Dr. P (GI), who they had consulted on pulling out the line. He said we definitely did not want to leave it out until surgery as a) we want to maximize him to his fullest and not loose anything and b) they can use the line for pre surgery uses as well. He was pleased with his weight gain (he’s at 80lbs 12oz up from a around 14 pounds in February according to Dr. H’s!!!!) SO, the plan is to put the PICC in his other arm, use a less abrasive cleanser, and use the Sorbaview dressings and hope we don’t get into the same situation.
Next stop was Dr. H, the hematologist that specializes in Shwachman Diamond Syndrome. They drew pre-GCSF shot labs to get an idea how his white count (among other things) looked off the shot and then gave him his shot as I hadn’t brought it thinking we would be home tonight. Theresa (nurse coord) called and said his white count was 2.7 which they were happy with as it will go up with the shot. Hims renal/liver panel looked normal as well as his hemoglobin was 12.4 which they are satisfied with, but his platelets have dropped even lower to his all time low of 32,000. Blech, so, the plan is to admit him on the 22nd so they can do platelet and plasma transfusions and get him up to an acceptable range before the surgery on the 23rd.
Last stop was for an echocardiogram, results of which we do not have yet.
On the way out I was called by Dr. B (lung)’s nurse coord who said that oxygen has been prescribed for Michael for both night time and activity. I wasn’t surprised by this given the results of his walk test, he simply can’t be dropping that low and forcing his heart rate up that high (77 O2 and 169 heart rate). I hadn’t heard the results of his overnight O2/HR but obviously he was dropping at night as he qualified for oxygen. She’s going to have Dr. B call to go over the results in more detail [SEE NOTE BELOW]. While, again, we are glad that we have this information so that he isn’t continuing to struggle, it is a very difficult step to go back on oxygen after all these years–I feel like we have come back full circle to his first three years and it is discouraging.
Needless to say, Michael’s spirits are very low right now, he is tired, he is frustrated, he feels like his body is letting him down every where he turns and it is painful to watch not only his physical problems, but his spirits bowing under the weight of all of this.
Tomorrow we have the PICC line placement and some special x-rays of his spine.
UPDATE: I just spoke with Dr. B (lung) [I might hate Cincinnati today, but I still love Dr. B] on the phone (7pm) and his overnight O2 was fine, well, maybe not normal, but good enough that he doesn’t need to have oxygen at night. His walk test def. showed a problem getting oxygen with even mild activity so he will have a portable oxygen tank to use with any activity (even walking in the house). The nuclear scan showed pretty much what we expected, no air flow in the lower and middle right (didn’t know about the middle) with only the top portion getting air flow. His top right accounts for 20% of his lung function, which means that his left lung is having to make up 80% of the work. His left lung shows patchy airflow, which other scans have shown and this confirms, so it has some issues as well. They can’t say exactly why without doing biopsies, which they are not willing to do, they don’t want to mess with that lung at all. His echocardiogram was fine, he’s never had an issue with his heart, but it was still good to see.
