My soul melts away for sorrow; strengthen me according to your word!

This is my comfort in my affliction, that your promise gives me life. (Psalm 119:28, 50 ESV)

Wednesday, May 16, 2018

Update: Spring Appointments

Recent posts have detailed the couple of respiratory illnesses that Verity had in March and April, so now it's time for a general update on the slew of other appointments we've had over the past few months! October was our busy month in the fall as the referrals finally went through and we started seeing her specialty providers, and April of course was the 6-month mark for follow-up. So here is the list of what all we've been up to!

March 22: Pulmonology
The pulmonology follow-up was scheduled even before Verity's first illness struck, but it was timed well as she had been out of the hospital about 10 days or so. At that time her lungs sounded amazingly good, and since we had never had any lung issues before, the doctor said she would leave it up to the Sleep Clinic doctor as to whether or not she would continue to follow Verity. Of course, little did we know that Verity would have pneumonia about a month later! Sleep clinic is scheduled for May 25...

April 2: Ophthalmology
We drove 45 minutes to get to Ft. Carson to spend a whopping 5 minutes with Dr. B, who assured us Verity's eyes are looking great and he doesn't need to dilate them again until our fall appointment. Okie dokie then.

April 17: Orthopedics
At this follow-up appointment we got another hip X-ray, which indicated her left hip is still stiff but not any worse than in the fall. Her feet are looking good and we are to continue using the bar (supposedly naps and nighttime but in reality more like 2-3 hour chunks a couple of times a day).

April 19: Pediatric Visit
We needed a doctor to look at Verity's umbilical hernia, which was repaired with her G-tube surgery May 2017 but has been flaring up again recently. She ordered an abdominal ultrasound. (This is the day we realized Verity was getting sick, and at 3am the next morning we took her to the hospital, where she was diagnosed with aspiration pneumonia.)

April 24: Renal ultrasound and barium enema
The ultrasound looked normal (per the follow-up the next day), and the barium enema did not reveal any particular reason for Verity's difficulty pooping, although it did show a "tortuous" pathway. (Once she gets started going she does pretty well, but we frequently have to give her a liquid suppository to start the process.)

April 25: BAHA fitting
Verity got her Bone-Assisted Hearing Aid, which fits on a headband! We learned lots of details about how to use this device and have a whole bag of STUFF to go along with it. She wears it in stints, as it is very overwhelming for her to have it on all the time at this point. Slowly we are working up to it! She isn't terribly responsive, although we know for sure when she is DONE!

April 30: Adaptive Stroller Shopping
We went to an equipment provider that we know of through The Resource Exchange (our home therapy program) to look at and take measurements for an adaptive stroller for Verity.

May 3: Echocardiogram
Our cardiologist is very optimistic about the way Verity's heart looks right now. Her large VSD has completely patched up! She still has a teeny tiny one that causes her heart murmur, but everything is balanced, and he does not think PH will be a problem. Whew! He feels comfortable waiting another year before we do another echo.

May 4: Post-hospital follow-up with PCM
Verity had been off oxygen for some time before we had this appointment, and she looked quite well. Her PCM was pleased.

May 7: Abdominal ultrasound
This was a pretty quick appointment, but we didn't hear anything about the results until I asked a week later. We have a referral to see a pediatric surgeon since clearly the hernia is there.

May 15: Dietitian assessment
Our Verity weighed in at 14 pounds, 14 ounces!! And she is 26 inches long now!! In less than 2 weeks, she will be 15 months old...15 pounds by 15 months!!! Clearly she is growing and thriving on the Nourish formula. Now that she is 100% on this whole-foods mixture (plus plenty of water), our next step is to meet with the GI doc and formulate a plan for compressing her feeds so that she can get on more of a bolus feeding schedule. Her vomiting can still be a problem, particularly when she is bearing down to poo or pass gas, but it is much less frequently to be sure. I'm not going to lie...I would LOVE for her to not be hooked to the feeding pump 24/7. But...counting my blessings. Our baby is growing and thriving and becoming SO much stronger and sturdier!

In between all the above listed appointments were nearly weekly visits to the chiropractor as well as nearly weekly occupational and physical therapy sessions in our home.

COMING UP:
May 25: GI follow-up and Sleep Clinic

May 31: Surgery consult

June 6: Speech evaluation

June 7: BAHA check

Whew. That's all for now, folks!!!

Friday, May 11, 2018

Pneumonia and Recovery

About 6 weeks after Verity's overnight hospital stay in March, we were back again after monitoring her at home being unable to keep her sats up. I had taken a nap in the early evening, knowing it was going to be a rough night, and spent hours tweaking her o2 and watching the numbers fluctuate on the pulse oximeter. When her heart rate soared over 200 and wouldn't come down, I woke Ted and we packed up for the hospital.

Unlike the previous ER visit, this one involved lots of tests. We were admitted with the diagnosis of aspiration pneumonia. Since I had been awake all night, I drove home after Ted and Verity finished the admissions process, swapping out with him the following day (and bringing a diffuser plus essential oils, lol).

The scariest part of the whole thing was watching Verity's labored breathing. Her retractions were unlike anything I had ever seen. I was hoping to get her on CPAP or BiPAP, something that we felt would ease the difficulty she was having with her breathing, but they only do that in the PICU (at this particular hospital), and we were in the pediatric acute care unit. (Don't ask me why they can't bring it to those rooms!!) The doctors did listen to my concerns and said they were monitoring her to see if she needed to move to PICU. She never did. Amazingly the nights were not too terrible; it was the afternoons where she seemed to have the acute episodes.

This visit was three days and two nights, and once again we were discharged to come home on oxygen (1/16L prescribed, but we did have to adjust depending on her sats). Verity had an IV in the hospital, but we were given a prescription for "oral" (i.e. G-tube) antibiotics at home. Thankfully she did not have any adverse reactions to the medicine.

It has been about 3 weeks since our hospital visit, and we have had a number of appointments since then (many unrelated to her pneumonia). Overall she is doing quite well, although she has been noticeably sleepy (regrettably not always during the night--hence my writing this at 2:30am!). Every now and then we see a low grade fever, and she has had days where getting a smile out of her is nigh impossible. But for all the fussy periods, she does have her happy, playful times as well, and thankfully her vitals keep looking good. She came off oxygen maybe a week or so after we got home from the hospital. (These weeks have been a blur with all our appointments, which I will detail in a separate post.)

I am thankful Verity seems to be robust and healthy enough to bounce back so well from such a scary illness. But I confess that I will never be able to shake the sense of dread that looms over us whenever we are making a hurried trip to the hospital--we've seen too many babies fly to heaven to take for granted that we will always be able to bring her home.