Delaney Update: 5/9

Delaney Update: 5/9

An uneventful morning was an easy start to the day. A few phone calls, one to refill a prescription, nurse Burke checked in, and one to set up an appointment with Dr. Doshi for Delaney's pulmonary workup. We returned from our appointment to find that a certain Border Collie had been engaged in a little mischief. We capped things off with a lovely odor with good friends.

As we got up today, we really seem to feel a sense of normal. Just getting up and making breakfast, checking on the needs of Delaney and each other. It was Mommy duty night last night and even though that was the case I couldn't ignore the alarm of the Pulse-Ox sensor going off. It was acting a little erratic and probably do to the sensor dislodging slightly off of her foot. We could tell that she needed suction with the "Junky" sounds that came from her lungs. I helped out with the technology and some auctioning and wandered back in the sack. We find that it's much better if one of us gets a full night sleep, although we long for the days when we could both share that joy.

I fell asleep pretty easily and woke to the sound of our Home Care Nurse. She was just calling to check on Delaney (we just love that she does that). I gave her a generally good report and she was genuinely excited to hear about her increased voluntary movement and responsiveness. We will see her for the second time tomorrow, where she will check on little d's vitals, weight, and feeding regimen. We are hoping we can increase the feed sober can move her more towards regaining that weight she has lost.

We did call Dr. O'Shea's office to refill the Phenobarbital which initially was not a problem and then the pharmacy called to say they didn't have enough...then retracted the statement while we were on the phone. I was relieved, I didn't want to go through another goose chase for meds. We need this medication for seizures that were discovered at Children's, we are hoping that they have since subsided and we can wean her off of that.

The referral process was started for U of M Neurology department. We are nervous but anxious to see the results from that. I think There has to be an increase in activity, since we are obviously seeing such an increase in her behaviors.

We met with Dr. Doshi which was a very positive experience. Je was friendly, gentle, kind, and well-spoken. We just don't need any more other details getting lost in translation. We received orders for blood work and a chest x-ray. We really like his approach, mAking this next phase of treatment much more appropriate and tolerable.

Falling asleep...

Love,
B