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.