a collection of random thoughts and ideas from me, her, and sometimes us
the last four days: everyone
BBA: Last Wednesday, we were doing pretty well and anticipated having some good news so were taking a few days to be happy with normal. On Wednesday, July 29, we had anticipated a Friday discharge, and BBA being home for the weekend. On Thursday morning, his blood sugar dropped again (after just over three hours of not eating). That was a signal to endocrine of some potentially life-threatening issues if he does not eat in a specific period of time. As such, they would (obviously) not sign off on his discharge. They restarted the insulin medication to give his pancreas a bit of a break. On Saturday night, they conducted a six hour fast for him to see how long he could go without eating before his blood sugar dropped. He had to make it the full six hours in order to be discharged on Sunday. He made it five hours . . .
The insulin medication was increased on Sunday and they will restart the six hour fast tonight. If he makes it, we can discuss discharge tomorrow.
With all of this, we have been doing discharge planning. John’s Hopkins is amazing. The staff are supportive, they provide comprehensive resources (both tangible and people), and they think of everything. BBA will come home on seven medications (and one emergency medication, so eight, really) two of which are administered by needle, four which are twice a day, and three that cannot be mixed together when put in his formula. Our NICU team has spent much time walking us through administration of the medications, practicing giving the shots, and talking through the use of the emergency medication. We have been assigned a case manager just for our pharmacy needs. Home nursing will be working with us and coming to the house every three days to check on him.
Once he comes home, the fun does not end! We will be meeting with the pediatrician once a week (John’s Hopkins LOVES our pediatrician practice which is a huge win to not have to go into the city every week). He will need bi-weekly blood draws as long as he remains on the blood thinner; monthly visits with endocrine; and consistent follow-up with neurology, cardiology, hematology, endocrinology and frequent repeat testing. We are anticipating honorary medical and pharmacy degrees once we are through this.
We will post an update early tomorrow if he made it through the fast.
BBB: he has been doing really well. He continues to eat and sleep well, consuming more quantity each feed. He has been awake much more during the day and has amazing head control for a one month old. He wants to look around (possibly to see where @littlepund is and what she might be planning to do to him next). He loves noise (a win when there is a two year old around). We tried a bath again; he did not enjoy it as much as the first one, but we will continue to work on it.
@littlepund: she has been having a ball helping with the baby and can finally say both of their names. She has stopped trying to pull BBB’s feet off, but is still working on giving gentle hugs. And she keeps wanting to steal his pacifier. A work in progress really. She is great though.