All Kinds of Check-ups

Here are the nitty-gritty after-visit summaries of Verity's recent appointments and a quick word about an upcoming visit.

GI, September 29, 2017
Stats:
BMI: 15.33 (14th percentile)
Weight: 11lbs, 13.5oz (< 1st percentile)
Height: 23.31" (< 1st percentile)

1. Swallow study ordered. [Scheduled for November 30--in the meantime, we need to work with Verity to help her swallow more than she currently is!! The study requires at least an ounce, and she only takes about 5ml on a good day.]
2. Zarbees multi-vitamin recommended [now using daily]
3. Trial of a powdered probiotic recommended [now using daily]
4. Follow-up in 2-3 months to check on weight, feeds, etc.
5. Call or message with weights every 2-3 weeks.
6. Work toward 105-110ml per feeding.

Since this appointment, Verity's reflux problems have resurfaced. Every time we try to bump up her feeding amounts, it seems we see an increase in vomiting and discomfort. We had gotten her up to 95ml, but we went back to 90 the last couple of days and she is still acting uncomfortable during her feedings and shortly after. We've slowed the rate down as well. I spoke with a nurse from the GI office and we are planning to do a pH scope to determine the level of reflux and use the information to help us decide the next course of action. Seemingly, there are two options: medication and a Nissen fundoplication. We do not yet have a date for this test.

ENT, October 16, 2017
Stats:
BMI: 15.80 (23rd percentile)
Weight: 12lbs, 3.9oz (< 1st percentile)
Height: 23.35" (< 1st percentile)

[This doctor was very thorough with his notes! I'm going to copy most of them here and simply link to definitions of the more unfamiliar terms and place explanations in brackets.]

"Verity is a 7-month-old female with a hx of Trisomy 18, hypotonia, aspiration with G-tube placement and bilateral hearing loss. Most feeds are happening through the G-tube. Family had a sleep ABR [Auditory Brainstem Response] back in May of this year that showed severe CHL [Conductive Hearing Loss] in the right ear. MOC feels that the hearing has improved over the last couple of months, no wearing hearing aids at this time. Family has not been evaluated by an ENT prior to today. There are concerns about sleep apnea based on her sleep patterns, retrognathia, hypotonia and her diagnosis of Trisomy 18.

Examination today showed poor tone, not able to hold her head up. Bilateral external auditory canal stenosis, unable to view the ear drums [her ear canals are abnormally narrow]. Some soft tissue narrowing of the nose at the vestibule, improved nasal airway on the mucosal side. Flexible laryngoscopy was performed and showed some mild nasal narrowing in the midportion of the nose, no adenoid obstruction, intermittent collapse of the pharynx when she was bearing down. The vocal cords were mobile with a good view of the larynx, no prolapse of the tongue.

I would like to repeat the ABR during sedation and obtain bone conduction for both sides. I would recommend hearing aids of some form sooner than later. We will order a sleep study to rule out sleep apnea. I would like to see the family back after the sleep study and the hearing test."

Currently the sleep study is scheduled for January 8, but we are on the waiting list in case something opens up sooner. If so, it would be a same-day deal, so we'd need to drop everything and make haste to the sleep lab!! I hope we can get some answers sooner rather than later...these awful nights are killing us!

Orthopedic, October 17, 2017

I don't have a lot of written notes on my paperwork, so I'll try to remember the main points...

1. Verity has responded very well to the boots and bar--we are cleared to use it for nights only and not concern ourselves with nap time since her sleeping habits leave much to be desired.

2. They did change the angle her boots were fixed to the bar so that her feet are not turned outward nearly as much. We hope this is making it more comfortable for nighttime sleeping! 

3. New boots will be fitted on Monday, as her toes are nearly hanging out of her old pair!

4. They took an X-ray of her hips, as there was concern about less movement in her left hip. Things look all right for now, but there is danger of her hip coming out of socket. We are to do certain stretches with her diaper changes to help with this issue.

5. They want a follow-up with the PT in 3 months and with the doctor in 6 months.

Coming up: 

Cardiology (Echocardiogram), October 26, 2017

This appointment is to give us a baseline echo of Verity's heart; when we last examined it in April, everything looked wonderful. The VSDs were all closing, everything was balanced, no heart murmur. However...at the ENT visit on Monday, the doctor heard a murmur, the first time this has happened. He said that if HE could hear it, then it definitely needs checked, since that isn't his specialty. :-/ So...I wasn't concerned about the echo appointment before, but now...I am...a bit...

Nursing Care

We recently learned that we are eligible for skilled nursing care for Verity through the ECHO program, with Medicaid picking up additional hours. I still need to figure out what paperwork to do for the latter, but ECHO has been on the ball, calling me several times in the past week or two. The bottom line is that we can get nursing care 8 hours a day for 5 days a week, to be used however we want! This is both exciting and rather unnerving--now that things are in motion, it is all happening so fast. ECHO recommended a particular local nursing agency, and they contacted us last week and did a home visit to meet Verity and ask even more questions, lol. We met a nurse a few days later--shocking, since the case manager had indicated that it can sometimes take up to 6 weeks to find someone. Not surprisingly, the candidate prefers daytime hours...we are hoping to find nighttime care at least 1-2 nights a week so that we can have reliable sleeping hours, but daytime help will be a blessing for sure.

After I interviewed the home nurse, I felt comfortable telling the nursing agency that we are ready to try and see how things go with her. She is an older lady with 26 years of nursing experience including extensive experience with feeding tube patients. She has 5 years of exclusive pediatric experience and has lived in our state for almost a year. My friend Joyce was visiting us and sat in on the interview, and she gave favorable input as well. The nurse will come Monday, October 16, for her first day...Ted has Oct 16-18 off work, so he will be here to assess how things start.

I suppose it's normal to have mixed feelings about this. In some ways, we feel Verity is "low maintenance for being so high maintenance," as we sometimes tell folks. She's not on oxygen; she doesn't have a trach. She's hardly been sick, though she has been fighting a sniffle the last week. (As far as we can tell, she only had a fever for a couple of HOURS! Hooray for Thieves and other essential oils!!) At the same time, she is definitely high maintenance compared to our other 8 babies...and I feel extremely stretched JUST caring for Verity (usually on very little sleep), let alone being a wife, mom and homeschool teacher to our other kids, feeding the troops, keeping the schedule, etc. Despite the "what in the world is this going to look like" questions, I've found myself noting times in the last few days when I think..."When the nurse is here, I'll be able to [insert activity here]."

When the nurse is here, I can give undivided attention to the child who is ready for a new math lesson.

When the nurse is here, I can read a story to my littles.

When the nurse is here, I can sit with my teens and discuss their literature.

When the nurse is here, I can pump without perching precariously in a position that keeps me in reach of both Verity and...whatever. (My breakfast, the coloring toddler, the child working on handwriting, my paperwork...)

When the nurse is here, I can TAKE A NAP AFTER LUNCH!

When the nurse is here, she can do more therapy activities with Verity, things I would like to do but simply cannot--not every day, not very long, or not at all.

These are the things I'm telling myself. I'm not feeling any guilt, really (trust me, I usually excel in that department); but I think my main struggle concerns me not having control. But if I'm honest, how much control do I really have on a daily basis anyway?! Our schedule is in chaos, and so much of our daily activity depends on what is happening with Verity at the moment. And there are all too many moments when I am simply exhausted, overwhelmed, and unable to think clearly.

So. I have decided to assume the best with this new scenario. I know it will take some time to adjust to having another person in the house--I imagine it will be difficult for me to hear Verity fussing or crying and yet continue doing whatever I am already doing with the other children. But hopefully--prayerfully--we will strike a healthy balance, and my other children can have a more rested, less stressed-out mama during the weekdays! Please pray with us about this transition!

Verity's Vision

On October 3 we saw a pediatric ophthalmologist to assess Verity's vision. I was pleased to hear he had worked with other Trisomy 18 patients, and he was obviously well versed in our kids' needs. I was also pleased to hear that Verity's eyes are in good shape: her optic nerve looks fine; she is a bit farsighted (common for this age), but at this point she does not need little bitty glasses (somewhat common for T18 kiddos). Dr. B wants to see us again in 6 months and especially wants to monitor her right eye because of the slight droop. (It's so endearing to me, but I didn't think about how it could affect her eyeball!)