26
July
2008
Things Dorrie likes to have in her mouth:
- Teal Soothies pacifier
- Blue Hippo
- Telephone rattle
- Glitter Baton rattle
- Breastmilk
- Ribbit frog
Things Dorrie does not like to have in her mouth:
- Pink Soothies pacifier
- Sweet Potato
- Pears
- Popsicle
- Ice cream
- Spaghettios sauce
- Chocolate frosting
- fingers
- Spoon
You may notice a trend in these lists.
In other news, Miss Dorrie has not been feeling well for the past few days. Looking back, it probably started on Wednesday when she fell asleep early for her nap (1:30) and slept away the entire afternoon, waking only for her bath at 5:30. She had a similar long nap on Thursday and then it was pretty clear by Thursday night that she was feeling blah. She had a slight fever on Friday morning, and though that was gone by noon, she was pretty tired and irritable for the rest of the day. She hasn’t required -more- suctioning than usual, but her secretions are definitely mucousy and not the usual spit. She had another long nap in the afternoon and really only woke up for a very short time before going down for the night. So far she seems to be doing ok with increased attention given to keeping her cool and some extra oxygen, but it’s hard to tell if things will get worse or better over the next couple of days.
Posted: moving forward... or not, our little witch, trying to stay healthy
19
May
2008
Things have not exactly been smooth this past week-plus-weekend, but they have not been disastrous either. Mom came down with a cold Saturday of the week before last, possibly picked up from her mother, who had been sick for several weeks earlier. Then last night, I pulled a back muscle while taking care of Dorrie, making it hard to stand up and sit down, let alone doing anything that involves being on the floor with Dorrie. And to top it off, it is looking like Dorrie has caught Mom’s cold in spite of our best efforts, as she is needing extra oxygen, she’s cranky, and the secretions we’re getting from her trach are looking more yellow than they usually do. Naturally, the latter issue is our greatest concern.
I called the pediatrician’s office, and the nurse I spoke to recommended going to the emergency room. Anyone who’s read this blog can guess how we feel about that idea. So, we called Dr. Optimist, who has more faith in our caring skills, and she felt that with the change in her secretions, it was time to start treating her with some antibiotics, and that we should have prednisone on hand in case she starts to run a fever. As long as she is not having trouble staying saturated, we can choose to either visit the pediatrician tomorrow, or if she seems stable, we can try to hold out until Dr. Optimist comes down to see her this Thursday. Granted, our luck so far with trying to hold out and hope Dorrie’s condition stays stable hasn’t been good, but we’ll see — I’m not going to jinx things by saying anything predictive.
Posted: trying to stay healthy
19
April
2008
Way back when Dorrie was still in the ICN, we had our first adventure with trying to get her in to see audiology after her hearing screening tests would not give us a result. It took us a great deal of wrangling to get down there at all, and of course, the trip did very little since she was upset and uncooperative by the time the test was ready to occur. Our second test was a few weeks later, and sedated, after snow allowed some cancellations. At the time, the results were inconclusive, and the main result was that she had tubes placed in her ears when she got her G-tube put in.
She was supposed to have a follow up hearing test about two weeks after the tubes had gone in, but we weren’t able to get another appointment before we went home. And then our second appointment didn’t happen because Dorrie was not feeling like going in the car on the day it was to take place. So since we’ve been here and she’s been on the road to recovery, we’ve been harrassing our doctors to harrass audiology to try and get us in before we leave once more.
It seemed like it might not happen, and we’d even gone so far as to make a regular appointment in June, but suddenly on Thursday they called up and within an hour someone was here to try and repeat her ABR test. We gave her a bunch of versed to try and quiet her down enough to do it, and for a while it seemed like she wasn’t going to let us, but at the last possible moment she went to sleep and the test was successfully performed.
The result was that the ABR patterns observed suggest that she has auditory neuropathy (also called auditory dis-synchrony). Unfortunately, that’s all they can tell from the patterns; they do not know how to read them to judge if she has any associated hearing loss, the severity of the AD/AN, or anything else. The diagnosis is very specific and yet extremely vague at the same time — it boils down to: we’re pretty sure she can hear sounds, but we don’t know how well she hears them or when she does, what she hears (ie, if what her brain is told is what the sound actually was). And we can’t really find out until she gets old enough to indicate these things to us.
It’s possible an MRI of her ears might give us some more information, but we haven’t talked to the ENT yet (he was on vacation last week) to hear what his opinion about physical causes might be. We’ll have a follow up visit with audiology over the summer sometime to see if we can get any more information. She may be old enough by that point to at least look in the direction of sounds to let us know she’s hearing them.
Posted: moving forward... or not, our little witch, trying to stay healthy
27
January
2008
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.
Posted: moving forward... or not, our little witch, trying to stay healthy
28
December
2007
To record for posterity, Dorrie’s list of issues past and present: esophageal perforation (healed), PDA (resolved w/indocin), BPD/CLD (severe), Klebsiella pneumonia, Serattia pneumonia, GER(D) w/ALTE, ROP stage 3 w/PLUS (resolved w/laser surgery), adrenal insufficiency (theoretically resolved), delayed swallow, MSSA colonisation, failed ABR (follow up in 3 months), 3 months on vent (2 bouts of oscillator, 1 Jet, 1 conventional), pulmonary hypertension (treated w/nitric oxide).
Posted: our little witch, trying to stay healthy
25
December
2007
Not being familiar with other hospitals, I am not sure if the situation here is typical or not. But regardless of how common it is, it’s an enormous problem where we are.
There are five attendings who rotate responsibility for the ICN. When they’re on, they are the primary physician for every baby in the nursery (30 beds). None is ever on for longer than two weeks at a time and they’re often gone for 6-8 weeks before they appear again. While they supposedly consult with one another and pass along information on the patients, they all have their own opinions as to the best course of action, parameters for success and status of the babies. What this boils down to is that what Dr. This Week is doing may bear no relation to what Dr. Last Week was working on and that none of it matters, because as soon as Dr. Next Week comes on, the whole plan is out the window.
For babies who aren’t in the hospital for very long or who have issues with simple answers, this doesn’t really matter, but for a complicated and long term case, the consequences are different. There’s a huge lack of focus that filters down into the rest of the care team; the parents and the nurses are forced to play games to manipulate the situation; opportunities are lost and the hospital stay is extended. I firmly believe that this carousel of attendings contributed to her being on the ventilator for so long — it was not the only factor, but it had consequences.
But the lack of continuity isn’t just from the attendings. It extends all the way down the ladder. There are a half dozen NNPs who bear the primary responsibility for most of the cases (a rotating roster of Residents handle the rest), but no one NNP is in charge of a particular baby. A bare handful of the nursing staff have actual set schedules, while the rest of them are on at random and unpredictable times. It’s almost useless to pick out a primary, because it seems like half the time you don’t get them assigned anyway — or if you have more than one primary, you can pretty much guarantee they’ll both be on at the same time.
So twice a day we sit in tense anticipation to find out who our nurse for the next 12 hours will be. Will it be someone we don’t trust? Will it be someone we’ve even seen before? (Yes, we have been here five months and we are STILL getting nurses we don’t even recognize.) Will it be someone who hasn’t had Dorrie since August? And if any of those are true… we find ourselves in the fun fun position of trying to teach the nurse about our daughter and how best to deal with her without causing a meltdown on both sides. And then we get to wait and see if she’ll actually listen to us or fall back on her own habits, which may or may not be ideal for Dorrie.
Every day at rounds we sit and listen intently so that we can correct whatever misinformation is in the process of being spread today. It’s incredible how many details get messed up in the game of telephone that is the chain of command in this place. But this is the information that is being used to decide her care, and it really matters that it be known that she was at 1/10L O2, not 1/5L, she breastfed 4x, not 3, she had one major spell, not two. For example, when she was having trouble on the bottle and choking, we wanted her evaluated by the speech therapist. But somehow (and I know this is still the case in the minds of several of the team) her problem was communicated to the therapist as reflux (which she also has) and not swallowing related. Another week’s delay was the result. It is and has been exhausting to try to keep on top of all of this, but it has become increasingly clear that if we don’t do it ourselves, it’s not going to happen at all: no one else actually has her whole case in their head, because they are only involved with her intermittantly.
Posted: hospital crack, our little witch, trying to stay healthy