28
December
2007
Dorrie was supposed to have a G-Tube placed today, but the Ped. GI specialist could not get one of the Ped. Surgeons to stand by on backup (they were too busy) so it was put off until Monday.
This gave Dr. ENT a chance to come up and take a look in Dorrie’s ears to see if he could see any fluid in there. Naturally she objected most strongly to his insertion of his scope thing into her ears and he was not able to get a very close look. So he proposed that he will look on Monday while she is sedated for the G-Tube procedure, and if he does find fluid/strongly suspects fluid, she will get some tubes in her ears to go with the one in her stomach.
Having had ear tubes twice myself (the first time at 8mos.) I can’t say I’m particularly concerned by this procedure, especially as I hope and suspect there have been advances in the last 30 years since I first got mine.
I am more concerned about the G-Tube, as I’m still feeling worried that we’re jumping the gun on it and she may get up to full PO feeds relatively soon. She’s made so much improvement with her breastfeeding over the past couple of weeks. I’m worried about messing with her stomach, that it will aggravate the reflux, and I’m worried about the procedure itself given her lung and breathing issues. Compounding all of this is the fact that the Ped. GI doc has STILL not been able to come and talk to me (though she made an unexpected visit on Monday — the one day in about 3 weeks where I had gone out — and talked to Bob). I am told today that she will probably be in between 7am and 9am on Sunday so I should be sure to be at the hospital during that time.
Posted: hospital crack, moving forward... or not, our little witch
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
27
December
2007
Bad News: Woke up this morning to find Dorrie’s nurse for the day was one I had been dreading getting again since she had her once back in July. We rushed over to the hospital to find that after being on a scant 90 minutes she had already decided to change the oxygen regulator (1L - 100mL) to a different one (200mL - 25mL). Her explanation: Dorrie needed more oxygen than the first one was giving. When Bob pointed out the obvious (1L > 200mL) she stared at it for a second, said “oh” and then SUDDENLY changed her tune. “The other one wasn’t working right.”
Whatever, lady. I notice there were no further issues with it after we made you change it back.
I’d grabbed a few granola bars as we rushed out in the morning, so I spent the whole day in the ICN after Bob had to go to work.
Good News: Apparently Dr. New Guy (who I quite like) has had some kind of issue crop up, so instead of him being here at the end of this week, Dr. Optimist is coming back early. Yay! We had several questions for Dr. Optimist and I’m glad that we’ll be able to deal with them before next week.
Posted: hospital crack, our little witch
25
December
2007
I suspect I’ll be using a lot of random abbreviations and terms which some visitors may be familiar with, but which are mystifying for others. So I’ve added a glossary page which will be specific to this blog. If I talk about something in a post that isn’t clear, leave a comment and I’ll add it to the glossary page.
Posted: we interrupt this blog
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
25
December
2007
Weight: 4.16kg - (+210g)
Height: 47cm - (+0cm :( )
Head: 36.5cm - (+0.5cm)
Posted: little fat fairy, moving forward... or not, our little witch
21
December
2007
Dorrie finally had her repeat sweat test on Thursday morning, and this time she sweatted up a storm!
Even better, the test came back negative for CF. It’s nice to have some good news.
Posted: moving forward... or not, our little witch
19
December
2007
All babies get a hearing screen before they leave the ICN. As I understand it, the screen works by sending soundwaves into the ears and sensors measure if there’s a response or not. It does not actually measure hearing, but a “pass” indicates that the measured response was great enough that there are unlikely to be hearing problems. A “refer” means a more detailed test is required.
Of course, Dorrie never likes to do anything the same way as everyone else, so instead of kicking back a pass OR a refer, the three times they tried to run the screen on her, it just ran and ran and never came up with an answer at all.
And so began the audiology saga. The ICN called audiology to try and schedule an appointment for her to have an actual hearing test, since the screen would not work. They were told audiology was fully booked and the test would be scheduled for some time in February. I said this was not acceptable — if there’s a problem, we need to know now, not in February, so intervention can begin.
So they went back to try and make the appointment sooner and ran into some sort of a bureaucratic brick wall — Dorrie did not have a “refer” result, so she could not get an appointment period. Argh! After asking about this at rounds for five or six days and seeing that the usual suspects were getting nowhere, I hit upon an idea: screw the proper channels. I came in the next day determined to have the nurse page the unit’s PT, but was pleasantly surprised to find her already at Dorrie’s bedspace, apparently having heard the whole ridiculous story and wanting to talk to me herself.
The next day, she had Dorrie an appointment with audiology.
We managed to get in earlier than that, though, due to snow related cancellations. After some debate as to whether or not she was allowed to go at all — the room in audiology is just a regular office and does not have suction or oxygen in the wall like the hospital rooms — Dorrie and her entourage (respiratory tech, nurse, mom, transport) headed off. We got down there to find that the door, normal sized, would not admit her transport bed.
Some maneuvering got us in through the door, but that was where Dorrie’s cooperation ended. She had slept peacefully on the way down, but as soon as they started sticking things in her ears she was having none of it. She was hungry and she was annoyed and she would not calm down unless she had her pacifier. Which, along with her normal snotty breathing, was far too loud for the test to show useful information.
From there, the only options were to somehow get into the Pain Free Clinic for a sedated test, or wait until she was older and perhaps would tolerate the regular test better. Since early intervention is the key, we naturally didn’t want to wait however many months it might take for her to be ready to sleep through it on her own. Pain Free it was, and fortunately it didn’t take very long before there was another snowstorm to create an open space for Dorrie.
The sedated test itself went okay right up until they were nearly done, at which point Dorrie decided she was tired of the sedation and would stop moving air properly. Because she never actually stopped breathing as far as I could tell, I don’t think I would call this the same as one of her little “episodes”, but the result was very similar: major desat, bradycardia. She only got pale, though, not blue, so I’m not sure I believe the numbers as they displayed. I also can’t say I was thrilled with how anesthesia dealt with the problem, but they eventually got the job done, and I’m sure that interfering would have been the wrong thing to do — at least as it went. If it had gone on much longer it would have been another story.
For all that, though, the results of the test were… inconclusive. Sigh.
At least this time we know that the test was done and the lack of a reading is the fault of her ears, not her breathing or some outside interference. The only problem is that we don’t know why the test didn’t give a good reading. It could be indicative of a hearing loss (but they couldn’t get a good enough signal to test for that), it could mean she has a hearing disorder (auditory dyslexia?), or it could just mean she has middle ear issues, such as fluid. Or any combination of the previous. But we won’t know what the answer is until she gets an ENT consult re: fluid and is retested in a few months so we can see if the disorder observed has resolved itself or persisted.
In the meantime, we’ll have to operate on the assumption that everything might be true.
Posted: moving forward... or not, our little witch
17
December
2007
Dorrie hit five months old today (6 weeks adjusted). She’s still shy of 9lbs, still on oxygen, still taking most of her feeding via ng tube, and still in the hospital.
But at least we’re five months closer to coming home? Whenver the hell that will actually be.
My personal gut feeling is that we’re still here for at least another month. Hopefully it won’t be two, because I’m not sure I could handle two… but then, I thought I had hit my limit when we reached three months and she was back on the ventilator.
Today was an okay day as days have gone lately. She managed to breastfeed three times (in a row even), she didn’t have any major spells or desats, and we finally managed to get an actual appointment with the Pain-Free clinic for her sedated hearing test (Wednesday). We had an excellent nurse for the day and one of Dorrie’s primaries for night.
Posted: moving forward... or not, our little witch
17
December
2007
Weight: 3.95kg (8lbs 11.5oz) - +100g
Height: 47cm - +0cm
Head: 36cm - +0.5cm
Posted: little fat fairy, moving forward... or not, our little witch