It’s Saturday (2/7) and we are finally on an upward trend! Here is the scoop…

Friday we finally figured out the diuretic piece and no more leg cramps over night or during the day. Phew! Electrolytes are a little more appropriately balanced and now to just figure out the platelet debacle. Hematology came back Friday night and essentially said “we don’t know WHY they aren’t staying in a normal range BUT we do know how to keep them supported and in safe range”. Safe range for most anyone else is above 100. I feel good about anything over 50 (low bar, I know). We typically start seeing outward bleeding (bruising, petichiae, bloody noses, etc.) under 20 so above that is my comfort level. The doctors would like it to be a bit higher of course. One of the treatments for low platelets is IVIG treatments, of which Brooklyn is already getting montly at home. They are comfortable with us using those right now to help support the platelets and we will repeat bloodwork every so often to make sure it is working. Ultimately it looks like Immunology will have to adjust our IVIG schedule at home, though they seem to be totally uninterested in weighing in right now. They are on my list of “people to hunt down when we get out of here”. Insurance is on that list too…watch out!

So today is Saturday and there is another snow storm in Boston. Weird, I know. One more day of playing with diuretics and getting things organized for home (new meds, etc.), and the plan is to bust out tomorrow! Goal (no pun intended) is to be home for the SuperBowl! Summary of plans for home at this time include:

1. Monitoring weight daily/weekly and adjusting diuretics at home based on weight gain (fluid retention)
2. Maintain a high protein and low (bad) fat diet
3. Monitor bloodwork and outward symptoms for platelet and IgG levels
4. Use supportive Oxygen at night to help with pressures around the heart and lungs

Thanks to everyone who has checked in, entertained Kennedy, covered for me at work, and sent things to Brooklyn. This is a fantastic place for so many reasons, but gets old real quick. We are very excited to get back home to Tommy, Kennedy, Whiskey, and Luca and to return to work and dare I say…school!!!