Together we are finding our new way around here. Life is full! We're trying to keep up with Jack's new routine of medications, blood pressure checks, weight checks, and 3 weekly visits from a home nurse to draw blood for lab work. Harry has crazy excel spreadsheets going to keep us organized and I have my cell phone alarm programed to go off 5 x's a day to administer Jack's meds. It's comical and yet overwhelming. Jack is slowly getting his feet moving forward and very interested in new foods. WOW!Hooray! Our biggest challenge right now is sleep. For some reason, this is when Jack is most uncomfortable. We're trying to determine if it is the feeding pump, medication, or simply the interruption of his own rhythm after being in the hospital environment for 2 weeks. I trust this will subside as Jack regains comfort and some of the meds taper off.
Unfortunately, Jack had to go back into the hospital last night as his lab results yesterday indicated low sodium levels and a few other less than desirable lab results. We were told to expect this occasionally the first year until we get the medication levels optimal and regulated. Of course, you can never be prepared for this even though we know it to be true. So, we dragged our heels for 5 minutes and then quickly pulled it together for hopefully just an overnight until his blood levels improve.
So, in true yogic fashion we are trying to go WITH the flow of life instead of resist it. Even though Jack is back in the hospital, I could hear him on the phone this morning laughing in the background and keeping smiles on the faces around him.
1 comment:
Dear Ali and Harry and Sam and Jack---Wow!!! What you've been through!!! Real teamwork---But it sounds like everything is going just as expected---What a blessing this new good health will be!!! Just know that you're always in our thoughts and prayers---Love, Loren and David
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