a collection of random thoughts and ideas from me, her, and sometimes us
Been a busy week or two. Last week, we took BBA to his follow up pediatric gastroenterology appointment. We really had no idea why we were going but come to find about jaundice and liver concerns fall under GI. Since his bilirubin levels hadn’t gone all the way to down to a normal level, the doctor (after an hour of trying to figure out why we were there and reading his chart) decided we would go on a 5 day medicine treatment to clear him out and then perform a HIDA test. If they didn’t prove to be useful, we would need to get a liver biopsy and possibly exploratory surgery by the end of the week. They were looking to run out a rare condition known as biliary artesia. After the 5 days of medicine and being on pins and needles assuming we would be the 1 in 10,000 they did the first test. We were scheduled to get follow up tests all day Wednesday every 4 hours.
Thankfully after the first set of tests, they could see the tracers and all the digestive organs and there are no problems with liver, gallbladder, bile ducts, etc. And we didn’t have to go back for any more. As well, his d bilirubin levels have come down from where they were and should be stabilizing around the normal level. Have to follow up in a month.
Next came an ultrasound on his arm to see of the blood clot from the PICC line in the hospital resolved itself. Another good result. No trace of the clot at all! At our follow up with pediatric hematology, we were officially removed from the blood thinner which means no more injections or ports in his leg. Down to oral medications.
Since then we have also been removed from another medicine. Hematology is trying to get up one of his numbers that relations to fighting infections. We have a follow up blood test for that this week.
Also have their 2 month checkup this coming week. Hard to believe it has already been two months! BBB meanwhile is a championship eater and burper. And generally sleeping through the night for a week or two. Both still need to work on tat pooping regularly thing but they byare coming around.
For the late night/early morning readers, we just got home. Labs came back fine enough. Ultrasound was definitively ok. A couple of his medications need adjusting.
It’s us again. We thought we would not be doing a post for a while but things have changed. Currently hanging out in the pediatric emergency room at John’s Hopkins. BBA has had some issues over the past few days at home and following a blood draw this morning with concerning results, we headed here. We hope to have some new answers in the morning.
BBA is settling in and realizing what home is like. He seems to love being reunited with BBB. They are excellent co-snugglers.
Days are getting down to a routine. Nights are a little harder. BBA is eating every two to four hours, and really loving deciding he is hungry when BBB is set to eat (BBB is on a set schedule for eating). They both sound like ducks when they cry and hearing them in unison is adorable/hysterical and loud/oppressive all at the same time.
We have a long road ahead of us for BBA. The home nurse visits a couple times a week, we have weekly blood draws, and we have monthly appointments with every speciality and the pediatrician, averaging out to at least a visit per week. We will update the blog as we get updates and make meaningful progress or have notable setbacks.
Thank you all for reading along with us so far. We so sincerely appreciate your support of positive thoughts, well wishes, prayers, and finger crossing.
If you know us well, you know we are numbers people, so after …
9.59% of 2015 or 5 weeks or 35 days or 840 hours or 50,400 minutes or 3,024,000 seconds
BBA was released from the NICU today. #reunitedanditfeelssogood
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):
- It must be nice to only have one of the two babies at home.
- You must be so happy you can relax and get so much rest.
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.
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.
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.
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.