Sunday, January 01, 2006


"Hmmm..." That's what Max's nurse and I are doing tonight. We are contemplating what exactly Maxwell is doing. Hmmm...we are just not sure what to think.

Some days his respiratory rate and oxygen sats have been great, other days not so great. Today his O2 requirements were triple what they usually are and he still was not maintaining a great saturation. He did this one of the first nights he went home and the nurse almost thought he should go to the hospital, but then he didn't do it again. And then today every time he fell asleep, his sats would not stay up for anything. I tried every position I could...finally I would just wake him up. They wouldn't drop very low, but the problem was to keep them at a decent level, his O2 was high. Frustrating, scary, confusing...

Tomorrow we go to the hospital (in town) for his weekly blood draw and then the following day we have our weekly doctor's appointment. I am also going to put another call into our pulmonologist at Children's to get his thoughts. Hopefully this issue will self resolve again within a day or so....but it could be a sign that something is happening with his lungs. There was an obvious change in the sound tonight.

Other than that, Max has adjusted quite well to being at home. He is quite calm and happy and we are trying our best to get a routine. It is VERY difficult "logistically" to keep it all together. There are a million medicines to keep organized and on a perfect schedule...pumping, making (gets extra calories) and organizing his milk (and then washing pumps and bottles about 10 ten times a day...yikes!), giving his various ointments, checking his respiratory rate, rotating oxygen tanks, refilling prescriptions, reordering equipment, changing his tape/cannula/oximeter on a regular schedule...BUSY, BUSY, BUSY! And then of course there are just the usual "baby" duties...and the therapy to keep up his developmental progress. But each and every minute and stress is worth it to have him home. He is absolutely incredible! And I think he is truly going to thrive being at just requires 24/7 care, love and dedication!!! :)

Please keep sweet Max in your prayers for a continued smooth transition to being at home...and most importantly improvement with his lungs, breathing, and O2 saturations. Thank you everyone for your love and support...greatly appreciated!!!

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