in the hospital. Alli officially made it home for a week. And what a busy week it was! Full of therapy evaluations, doctor appointments, and just enough time to catch a cold.
Her schedule looked something like this:
6:00 am - meds
8:00 am - meds and respiratory treatment
10:00 am - meds
12:00 pm - meds
2:00 pm - meds and respiratory treatment
6:00 pm - meds
8:00 pm - meds and respiratory treatment
10:00 pm - meds
12:00 am - meds
Mixed in to that were her doctor appointments and outpatient therapy evaluations, time to do PT, OT, and pleasure feeding at home, nursing Joshua, unpacking from the hospital, grocery shopping...yikes! Hardly a moment to sit down. We are looking forward to getting our home nursing in place once we are done with this hospital visit, as the current schedule leaves very little time for Josh and SJ. We did have a couple of nice nights with some family time after dinner. I think that was my favorite part of the whole week. We had all 5 of us in the living room. Jason was snuggled up with Samantha watching Curious George. Alli and I were down on the floor working on some of her exercises and Josh was next to us building some core strength in tummy time. We are looking forward to more of that.
We met with the pulmonolgist this week. We have a new one. She is wonderful and had some great tips for us. We have seen her a few times in the hospital and she has always taken great care of Alli...and let's face it...she takes good care of mom too. We have been struggling to keep a couple of Alli's meds down and she had a tip for us that has been successful for several days in a row. Huge relief!
We also met with our ENT. We love her too. She is full of personality and knows her stuff. Alli will likely need ear tubes at some point, but given her sedation/anesthesia history, no one is in a big rush to put her under. At some point we will have to break down and do it, as she has fluid built up behind at least one of her ears. We will have a sedated hearing test at the same time. It seems she has hearing loss in her left ear and they are not able to conclude on the right ear.
Currently Alli is in the hospital, not in icu (thankfully!), with a cold of some sort. We were managing well at home, with the exception of her being able to cough up what is sitting in her lungs. So, we are here for the respiratory therapy - deep suction and round the clock breathing and vest treatments. Our goal is to avoid the ICU and make this a short stay. We'll hopefully just need to get her over a hurdle and be on our way back home. Please say some prayers that this is resolved quickly and without incident for her.
We had another offer on our condo this past week. This one seems more promising than the last. Samantha and I have been saying the novena to St. Joseph and will continue to do so, until the paperwork is finalized. It will be a relief to not have that hanging over our heads any more.
That is the update on our end. We said goodbye to Grandpa John this past week. He was so wonderful to have around. Eager to help in any way we needed (and in some ways we didn't know we needed) and always so flexible. We hope he (and nanny) come back soon!
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