Friday, I woke up and thought I’d spend the day getting some cleaning up done while my mother was over to help watch Dorrie, and we’d get to start implementing our plan to prevent meltdowns during breastfeeding sessions.
Dorrie woke up and thought she’d like a helicopter ride.
So just around 11 she put her plan into action and had one of her super fun laryngospasmic episodes. Mommy got to try out the ambu-bag and the suction and we got to see just how fast the fire department and EMS could respond to a 911 call. Dorrie got her first ride in an ambulance to the ER, where she discovered that she did not like the ER at all. She especially did not like the fact that no one gave her anything to eat. Luckily a team from the ICN came down with their helicopter and rescued her from the emergency room, taking her back to the place she knows best where two of her primary nurses were waiting to greet her.
Bob headed up after the helicopter by car, and mom and I went back to the house to collect all of Dorrie’s equipment and to pack up some stuff for us for the weekend.
I am eternally grateful that the attending neonatologist (Dr. Optimist) who was on on Friday declared that Dorrie did not have to go to PICU or Pedi and could just come back to the ICN. While I was not thrilled by the fact that she had to go all the way up north, it was also clear to me that the ER had no idea what to do with her. They were understandably confused. They got told a baby was coming in who had had “respiratory arrest” and they received an 11lb baby who shrieked, writhed and was generally mad as hell for the whole two hours she was in their facility. None of their sat probes worked on her; they couldn’t get an IV; they thought her chest X-ray showed she’d aspirated until I pointed out she had BPD and that’s what her lungs look like all the time.
We got back up to the ICN by around 5:45 that evening and Dorrie was still riled up. She had slept a bit on the helicopter flight, but the baby transport box was too small for her (the weight limit is 5kg and upon arrival she weighed in at a whopping 4.975kg) and made her overheated and furious. She pitched a mega-fit, demanding to be taken out, and her temperature remained high for quite some time. Even finally getting fed didn’t do a great deal to make her happier.
She had a good night though, having been completely exhausted by all her upsets during the day, and by morning her O2 requirement was back to normal. Though originally they had intended to keep her at the ICN for observation until Monday, after the RSV and flu screens came back negative and she was clearly not suffering from any illness, they changed that to Sunday and then later said ‘you can leave whenever you want’.
We decided to stick with Sunday just to make sure nothing turns up overnight. We might not have done this if her primaries hadn’t happened to be on this weekend, though.
They decided to tinker a bit with her meds, so we’re now doing a Pepcid trial.
Being home has been new and crazy.
It may seem like you’re doing a lot of the care for your child in the hospital, but… it’s not the same. Not by a long shot.
I feel fortunate that we were able to spend 4 days (and nights) in the Koala Suite at the hospital before we left, taking care of Dorrie and doing everything for her ourselves. It gave us a good feel for what we were in for, gave us practice at all of the parts of her care that we hadn’t really been doing, and generally left us with a far more realistic idea of how we would be able to handle this.
[I'm writing this here in the living room while Dorrie is asleep and OH MY GOD her sat probe SUCKS tonight. It has been constantly alarming or getting no reading at all when clearly she has a pulse and is breathing fine.]
Home is yet again different from the Koala Suite, but in a good way, aside from the lack of housekeeping service. We’re waiting to see how the routine falls out; for the time being we’re more or less sticking to the ICN’s every 3 hours schedule and trying to get her sleep times to be a little more predictable. We’ve been out twice in the car — once to the pediatrician and once to the ICN’s outpatient clinic in Manchester — with only one notable choking episode. I think the next week will hopefully see us getting a bit less frazzled with all that there is to do, and maybe we can actually start sleeping at the same time again.
Weight: 4.560kg (+185g)
Height: 50.5cm (+1.0cm)
Head: 37.5cm (+0.5cm)
Weight: 4.375kg – (+215g)
Height: 49.5cm – (+2.5cm)
Head: 37cm – (+0.5cm)
Dorrie’s now officially heavier than any of my mother’s children at birth. She’s not caught up to us in length, though.
Though late, the surgery on Monday went well. Dorrie was pretty displeased with the world while she was NPO, so it was a relief when they finally came to take her. The 2 procedures (G-Tube and ears) only took about an hour and then she was back.
Like when she had her eye surgery, it took her a lot longer than anesthesia claimed it would to shake off the effects of what they gave her. She came back up still on the vent, but woke up enough to protest that in about an hour. But she wasn’t really quite prepared to be extubated, as the lingering remains of the pavulon kept causing her to pass out again and forget that she needed to be breathing. So we had an exciting few hours of it from about 5-10 where she kept needing to be bagged every 10-15 minutes.
At that point the joint decision was made to put her on CPAP for a while to see if the pressure would help minimize the amount of work she needed to do and if the irritation of it would help keep her from losing focus. Whether it was the length of time that had passed or the CPAP, her issues almost immediately vanished. After one last issue (resolved by stim only) at around 1am, she was able to keep herself going for the rest of the night.
By the following morning the last of the anesthesia seemed gone and we were able to move her back to her low flow again and she got to try some food. It seemed quite fast to me but she was back to full feeds by mid-morning (they even increased her amount!!). So far, 48h post insertion, she appears to be tolerating things well. She’s still very cranky, but it’s less than it was yesterday so we’re hopeful that by the end of the week she’ll be feeling completely herself again.
The ear tubes apparently threw the ICN for a loop. Though hardly unusual, they’re mainly for babies a bit older than Dorrie so they do not recollect ever having had a patient get them. Doesn’t seem like they require much maintenance, though (some drops for a few days), so it shouldn’t really add much to their workload.