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It’s been awhile since my last post so I thought I would try and catch everyone up. I know this is my usual LONG update, but as I’ve said before, some people want a nutshell (“He’s hanging in there, oxygen a little tricky, platelets are concerning, weight is fluctuating, YAY, we’re sleeping better.”) version and others want details:
Michael’s PICC line (semi-permanent IV) has held out fine since the beginning of December when we replaced it. The Sorbaview patches that were generously given to us by the company despite not being for sale to individuals have kept Michael’s skin in really good condition. It is still irritating and itchy for him, but his skin is not breaking down and we are very thankful for that!
We were able to meet with Michael’s local pulmonologist whom we haven’t seen since just before the cancelled surgery date. There really wasn’t anything new to learn about that, we all understand the issues of his respiratory status, they upped his oxygen to 3 litres and said it was fine to go up to 4 litres if needed, the next option will be a forced air oxygen that, if I understand correctly, will force a deeper breath when he breathes to get more oxygen. Now in the middle of February he tends to fluctuate between 3 and 4, going to 4 more and more often. Sometimes his sats stay fairly decent, but he has trouble catching his breath between words [especially after being in a particularily hectic video game event 
].
Platelets are the other bane of our existence. His G-CSF shots do a decent enough job keeping his white cells in a low but acceptable range, but his platelets just keep creeping downward. When we put the PICC in at the beginning of December he needed a transfusion as they were at 22,000. They popped up to 37,000 for a bit but have been on a downward pattern since of: 37, 37, 30, 30, 27, 27, 17, and 17,000 again this week (the average platelet count is 150-440,000). We have started to see increased bleeding on little nicks and in giving him his shots, but for now we are, as ever, just watching. The problem with platelets are that giving him a transfusion only improves his counts for a short time, the more transfusions you give, you run the risk of making him immune to the effects of the transfusion as well as up his chances of getting a reaction from them–which he has already had in July. The guideline seems to be 20-50,000 transfusion only with bleeding issue or surgical procedure, below 10,000 requires it regardless of secondary issues.
Weight has still been a battle since the third PICC line was placed. Before we lost the 2nd line due to the blood infection, he had found a zone and we maintained it with TPN (IV nutrition) 10 hours a day, every other day. He lost a good deal of weight in the 6 weeks we waited for the more permanent line to be placed (which was cancelled as too great a risk to put him under) and the new PICC line placed. Since an initial weight jump, we’ve played a walk two steps forward, slide back 2.5 steps game until we are back to his early December weight. Yesterday he was down another pound, but we have a bit of hope as that is down only a pound in two weeks we think because he is finally getting more rest.
Sleep has been a bad and started snowballing into a nightmare the last two months for a combination of reasons, back pain from his back twisting more, leg pain/nerves twitching, probably due to pinched nerves, and the TPN keeping him up going to the bathroom and throwing in some ear ringing to round it off. We tried all kinds of medication combinations, position tries, ice packs, and etc. and we’d get a night of sleep and then back to no sleep for days. It truly was the most frustrating aspect of this whole journey. We can deal with a lot of things, but the cumulative effect of no sleep for Michael and I creates so many problems and makes every aspect of his illness 100x worse to deal with. Thankfully his coordinating doctor, and Liz in particular, never gave up on us showing up week after week exhausted and frustrated and we finally came up with a pill combination that worked the best it could in controlling the back and nerve pain–but we still couldn’t get more than one night in a row of sleep as the TPN kept him up and more aware of the pain and irritation.
The thought of putting his TPN on during the day did come up repeatedly, but it was something that Michael was against. When it is just the oxygen, we can deal with it and get around pretty much as we like, strapping it to his wheelchair. If it was just the TPN, we could deal with that the same way. Having to deal with both the oxygen and the rolling suitcase of IV nutrition just seemed like more frustration that it was worth to him. Over a week ago, I pulled the mom card and we tried it during the day and have done so since then–and he has slept! The combination of the medications at night and not being kept in a light sleep by the TPN has worked wonders–not perfection–but we’ll take it!!
Last week after a few nights in a row of sleep and a new interest in a computer game we are playing together, he was up and walking around whistling and chattering up a storm until I had to tell him to take a breathing treatment. It nearly broke my heart to see him unabashedly happy for the first time in a very long time–I can take a lot, but seeing him beaten down by exhaustion and getting little joy out of life was crushing and left me with a new level of feeling hopeless. I guess the moral of the story, if there needs to be one, is to keep trying and trying and trying and trying–giving up can’t be an option.
