a guy and a bee

a collection of random thoughts and ideas from me, her, and sometimes us

Wednesday: BBA 

Electrolytes dropped again overnight. Started on a prescription for…wait for it…salt this afternoon. Retesting levels again overnight. 

Also, we would like to share a few things not to say to parents of multiples and/or parents with children in the NICU/hospital (experiences BP had today):

  1. It must be nice to only have one of the two babies at home. 
  2. You must be so happy you can relax and get so much rest. 

Tuesday: BBA

Good news: he passed the fast and his blood sugar held. 

Bad news: because of the medicine and the diuretic he is on to stabilize his blood sugar, his electrolytes are now dropping. 

They are doing some more tests tonight and we will know more about next steps tomorrow morning. 

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.

Wednesday: BBA

He fully understands day and night!  He is eating well during the day (almost every hour) and sleeping well at night (being woken up to eat). They are working on getting him onto a more consistent and less frequent eating pattern so he has more food (calories, protein, sugar) in his system at a given time. His blood sugar is doing great!

He is now on a medication to lower his bilirubin. They will do some follow-up tests Saturday morning to determine how long he will remain on that medication. 

He remains on his blood thinner. The repeat ultrasound to look at the clot is scheduled for August 14.

Overall, he is doing much better and we may be able to get him home soon. We will most likely not post an update until the tests come back on Saturday. 

Monday: BBA

Blood sugar doing well. PICC line was removed today. Ate 55mL of his bottle; only 5mL had to go via tube. Has to get to 60mL every feeding by bottle to go home. 

Got a bath last night. His hair was super fuzzy today. And he smelled so good.

The weekend: BBA

Blood sugar is holding steady. They are moving to only checking it twice a day…finally some relief for his heels. 

Food has increased to 65mL every three hours. He gets tired and doesn’t eat it all each feeding, resulting in the leftover being administered via feeding tube, which is prolonging his stay, in part. He has to be able to eat consistently every three hours by bottle to be discharged. 

His bilirubin and TSH (impacting the liver, gallbladder, and thyroid) have been decreasing but are still higher than normal. Abdominal ultrasound came back normal, but they are looking to run some more tests to figure out what is going on/if he has an infection. More answers on that later in the week. 

Friday: BBA (part two) and BBB

BBA: He has been off glucose for five hours and blood sugar is remaining steady. He continues to eat well. Waiting on results of an abdominal ultrasound. Bilirubin dropped today on its own, negating the need for the medication they were going to start (yay). 

BBB: BBB got his first bath tonight. His hair is fuzzy again, reigniting the competition with BBA on who has better faux hawk potential. 

Friday: BBA (part one)

Thursday: BBA

Wednesday: BBA

Made it for rounds today. Medical team was very optimistic about his progress and decided to challenge him today, giving him more food per feed and dropping his glucose significantly. And he met the challenge like a champ!  May be weaned entirely off of the glucose by tomorrow afternoon.  

Several tests scheduled for Friday morning to assess bilirubin concerns and decide on a final plan. 

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