The Emma Report

…is when Emma is scheduled to have the swallow study test. The team met today and decided that Emma should have 2 separate studies, one to see if she is aspirating when she swallows (tomorrows test), and another to see if she is refluxing after she feeds. Unfortunately, the two tests can’t be done at the same time, so we’ll have to wait another 5 days to have the 2nd test.

To clarify a bit, the docs aren’t convinced that Emma is aspirating when she swallows. While she is at a higher risk of aspirating (given that her left vocal cord is paralyzed in an “open” position) she hasn’t shown the “classic” symptoms, doesn’t choke when she feeds, and hasn’t had problems protecting her airway. Nevertheless, the team wants to have the swallow study done to completely rule this out as a potential contributor to her respiratory distress.

The docs believe that reflux is the main problem. They think that Emma might have always had some reflux, but the combination of her age (reflux seems to ‘develop’ in babies between 1-4 months of age and Emma is now 9 weeks, corrected age), her recent respiratory infection, and the fact that she is now taking greater amounts of milk at each feed have conspired to cause her current difficulties. Reflux is a common gastrointestinal problem in premature babies. It occurs when the stomach acid and partially digested food flow back up through the lower esophageal sphincter into the esophagus. All children and adults will naturally reflux throughout the day, especially after eating. However, if the muscle opens too frequently and refluxing occurs too often, complications can develop.

Premature infants have an increased risk of developing reflux. There are several medical conditions that can cause reflux, but in preterm infants, the most common causes are immature muscles and abnormal breathing from chronic lung disease. If the lower esophageal sphincter is weak or underdeveloped, it can remain open when it should be closed, letting the stomach contents flow back up the esophagus. When a baby breathes abnormally because of chronic lung disease, the muscles used for breathing work harder. As these muscles work hard to breathe, they can pull on the muscles near the top of the stomach, stretching the sphincter and causing it to remain open. When the stomach contents flow inappropriately up into the esophagus they bring acid from the stomach. As the acid irritates the tissue inside the esophagus, it becomes inflamed and reddened (which the scope last week indicated). If the reflux is severe, the stomach contents may go high enough into the esophagus to be aspirated or spilled into the lungs causing choking, color changes, frequent respiratory infections, apnea (breathing slows or stops) and/or bradycardia (slowed heart rate). So, Emma will have another test in 5 or 6 days to assess the reflux situation. In the meantime, she’ll continue on the reflux meds. If the study tomorrow shows no (or very minimal) feeding aspiration, she should be able to go come home later this week, as long as she no longer needs supplemental oxygen. As of now, Emma has not needed any oxygen for 14 hours. She has to go at least 24 hours without O2 in order to go home, so she’s well on her way

Emma has had a quiet weekend, after keeping Eric up most of the night/early morning on Saturday. Since then, she’s been much more settled. She’s still getting a whiff of oxygen (we tried taking her off a few times over the weekend, but she desated again rather quickly, so she’s obviously not quite ready to give up the nasal prongs). She’s getting all of her feeds via the NG tube, but seems to have adjusted to it, as she’s no longer trying to pull it out. She’s been charming the nurses and docs with her quick smiles and sunny good humour

We hope that Emma will be able to have the Swallowing Study tomorrow or the next day. In this study, she’ll be fed a bottle of milk that contains an added radioactive substance which can be visualized on xray. A computerized scan of her abdomen can then show whether or not milk is entering into her airway or is being aspirated into her lungs. The study will also show the presence or degree of gastroesophageal reflux (though the docs have already started her on medication for reflux). If the results show she is aspirating, Emma may need to have an NG tube in place for several months. Hopefully we’ll have more answers soon…

By the way, if anyone else has the misfortune of having to spend a lot of time at CHEO, the hospital has free public WiFi.

After a short sleep, we got not only a wired baby, but also one that became angry with dad because he wouldn’t give her a bottle. Real angry. Angry as in spit out the soother, look at daddy, and scream at the top of our lungs while turning bright red angry…on and off for a few hours. I’m sure that by now Emma figures dad is retarded for not responding to the customary “I want my bottle” cues.

Now before anyone gets worried, she is being fed, but she’s on a continuous feed of 28 ml per hour. She’s getting the same volume, but it’s spread out evenly throughout the day, as opposed to a meal ever 3 or 4 hours. While this will hopefully help the reflux, it also means that she doesn’t get the full belly feeling that she’s used to (and probably helps her get to sleep).

Little Emma had a tough night, but she finally tired herself out and now that it’s morning, she’s having a good sound sleep.

We also have the misfortune of having the worst pulse oximeter imaginable in this room. The slightest motion causes it to alarm instantly. The sad thing is that it’s not an old first generation unit — it’s clearly microprocessor-based with an impressive looking screen and scads of configuration options. I’d love to have the software development team for this product spend 24 hours in a room with a baby connected to their abysmal product. Johnson and Johnson should stick to shampoo…

…or perhaps they should sell their product to the US Military. I can see suspected terrorists voluntarily standing in line to spill their guts rather than spend another night in a room with a baby connected to one of these pieces of junk.

Emma had a tough day, and it has been hard to tell if she’s restless due to respiratory issues or the NG tube combined with the improvised gloves to prevent her from removing the said tube.

We didn’t want to give her a mask of epi and end up with a wired baby, but by 2:15 am she seemed to be working harder to breathe and the nurse agreed that it was time.

10 minutes after finishing the mask, you’d expect a wide-eyed Emma, like every other time. Nope, sound asleep. I, on the other hand, having held her on my lap and thereby inhaled some of the same…

Did I ever mention how much TV sucks at 3am?

The docs were finally able to ’scope’ Emma late this afternoon. Our baby was a real trouper, and despite a very unpleasant exam., she was smiling again a few minutes later. The results show that she does have a paralyzed vocal cord, something we had already suspected (given her hoarse and quiet cry). This is most likely the result of the surgery she had at age 2.5 weeks to repair her PDA (see posts from late-August). The docs are simply going to follow her for this, because in some cases the paralysis may resolve on its own. Even if one of her cords remains permanently paralyzed, it should not affect her breathing, but rather the sound of her voice. The doc said that a third of children with unilateral vocal cord paralysis have “weak/breathy” voices, another third have “hoarse/wheezy” voices, and the remaining third have virtually normal-sounding voices. We simply won’t know about Emma’s voice for some time yet.

The scope procedure also revealed some inflammation, indicating that she may have reflux as well. To further investigate this, Emma will have a swallow study test next week to see if she is aspirating or refluxing when she feeds. Given that she is at increased risk for aspiration (due to the vocal cord paralysis), she’s won’t be able to feed by bottle/breast until she has the test and she now has an NG tube again (she will be fed through a small, flexible tube that is inserted through her nose and goes directly into her stomach — she had one for months while in the NICU). She’s also been started on medication for reflux, so hopefully that will help some too. Eric is staying at the hospital with Emma tonight and reports that she is not settling well and is trying to pull the tube out. Poor Boo

Finally, the team is trying to wean Emma off oxygen, but so far, she hasn’t been able to maintain her sats without the supplemental O2. So, it looks like she’ll be in hospital for at least 4 or 5 more days.

Emma’s doing about the same, she is not able to maintain her oxygen levels without some help and she’s congested, which is delaying the scope procedure.

Emma had a pretty good day. She actually slept for most of it. I guess the extra effort she’s been putting into breathing is tuckering her out. She was able to come off oxygen for a couple of hours this afternoon, but is now back on again. Her chest xray did show a few areas of lung inflammation, in keeping with viral bronchiolitis. For now, we’re just waiting for her to improve enough for the ENT doc to do the scope procedure. Hopefully it will be done tomorrow. Depending on the results of that exam., the team may start therapy for reflux. Still no discharge date in sight…

Not so much.

Emma has been to CHEO 4 times in the last 2 weeks. It is frightening how quickly her condition deteriorates. Last night, Emma was fine (with O2 sats. above 95%) at 11:00 p.m.., but 3 hours later she was in respiratory distress. Seeing her struggling to breathe is very difficult. It quickly brings back memories of all the scary early days in the NICU. The back-and-forth between home and hospital is also draining, emotionally and physically, for all of us.

Thankfully, as of this evening, Emma is doing well. She’s still on oxygen and is receiving nebulized racemic epinepherine treatments every 3 hours which seem to help her breathe more easily. The team was a bit concerned she may be developing a bacterial pneumonia, but she hasn’t had a fever and her chest xray looked OK (though we still haven’t heard from the radiologist who was to review it yet). For now, the docs aren’t sure why Emma has been having these ups and downs. As Eric said, they’re wondering if she might have reflux and may be aspirating very small amounts of milk into her lungs after her feeds, resulting in the respiratory distress. The ENT specialist came in to see her this afternoon, but doesn’t want to perform the ’scope’ for a couple of days (hoping that she will then be less congested and the procedure will be easier on her). We should know more then. So, it looks like we’ll probably be at CHEO at least ’til the end of the week…