Bustin' Out

It looks like we will be heading HOME before too long! Verity and I are looking forward to sleeping in our own beds tonight! I intend to make this a QUICK update:

* Her sats have been 96-100 the whole time (except for when she's kicking her legs, lol).

* Last night was not terrible but not great. Kinda normal for Verity...waking every 15-30 minutes for a couple of hours, and then once an hour for a few hours, and then 3 hours of straight sleep...starting about when the sun was coming up and Mom was waking. Sigh.

* Verity had an amazingly happy, content wake time for about 4 hours in the morning! She was interacting with me and the nurses, even giving the other ladies smiles!

* She has done great with all of her feedings. Every now and then she gets squirmy and fussy about halfway through, but she hasn't vomited a single bit!

* Three poops in the last 24 hours! Substantial ones, lol. She typically is an every-day pooper, but the last week she was going a couple of days between poos.

* Verity is still a bit congested but not bad. I haven't had to suction her nearly as much as yesterday, and when I do, it's a lot less "gunk." (Tip: Holding the lid of my peppermint oil under her nose makes her get really still and inhale deeply!)

* I finally saw the doctor just after noon. She said that today we switch from IV antibiotics to oral, and if Verity tolerates her next feed (which begins in about 15 minutes!), we can get discharged!

Verity is snoozing at the moment; she napped about an hour or so, woke up and fussed, then pooped, and then promptly fell asleep after her diaper change.

All in all, things are going well. I'm going to pack up my stuff in anticipation of being discharged as soon as possible once 3:00 comes! (Her feeds are 70ml over an hour.) I'm grateful we caught the UTI early...it certainly wasn't on our radar, but God is good and directed us to where we needed to be. And getting the reflux under control will make a HUGE difference in our everyday life at home. So, while a PICU stay wasn't in our plans for this weekend, we'll take the end results with gratitude!!

Hello from the PICU

Here's the long story of what's been happening with little Miss Verity of late, the upshot of which has us spending a couple of nights in the PICU...

In the last medical update I gave, I noted the increased problem of reflux with Verity's feedings as well as our difficulty getting any medical appointments on the calendar. So in this update I will give a rundown of both the Insurance Saga and the Current Medical Status. If your eyes glaze over at the thought of reading about insurance woes, feel free to skip to Part 2!

Part 1: The Insurance Saga

After Verity was born, a clerical error resulted in a Verity Irene Jacobson as well as a Vertiy Irene Jacobson in DEERS. This is a database of military members entitled to Tricare benefits. Not only was there a misspelling of her name, but also two digits of a social security number were transposed. Obviously this was going to cause problems with insurance paperwork.

Finally, after much hoopla and hoop-jumping, the errors were corrected. (Life lesson: Kids, make sure you DO YOUR JOB RIGHT THE FIRST TIME!!) 

The good news: Verity was enrolled!

The bad news: Verity was enrolled...in Tricare Standard, not Tricare Prime.

By the time everything was corrected, more than 60 days had elapsed since her birth, and in the middle of our fog of not sleeping and attending what seemed like hundreds of doctors' appointments, we didn't finish the process that we needed to in order to get Verity onto Prime.

Meanwhile, our pediatrician, our case manager, the EFMP (Exceptional Family Member Program), we parents, EVERYONE assumed Verity was on Tricare Prime. We had no problems getting referrals for her specialty care, which is a blessing. The problems came when, months later, we began receiving bills for these specialty appointments...because the system thought Verity was on Standard, which meant a lot of co-pays.

At some point after we had moved and were beginning to feel somewhat settled, we learned that Verity was not, in fact, on Prime. Ted did the necessary paperwork, but her official Prime enrollment would not begin until September 1. We were able to schedule her first regular pediatric appointment at the military clinic for September 11. The application for retroactive enrollment was approved, so, once everything gets settled...the bills should be taken care of. However, we are making phone calls and trying to avoid having them go to collections in the meantime. Sigh.

Part 2: Current Medical Status

The last few weeks Verity's reflux problem has only been growing worse. When I realized we were not going to be getting any specialty referrals anytime soon due to the insurance situation, I began asking other Trisomy parents for input and doing some reading about how other tube-fed babies' feeding schedules look. I learned there is a wide range, and many comments in response to my question gave me ideas for how we might approach tweaking Verity's feeding schedule to help reduce these horrible reflux episodes. For those who haven't dealt with reflux...imagine most of the feeding coming back out through the nose and mouth. :-( It's awful. And there is always the concern of that going into the lungs.

We started tweaking things on Monday and were finding success: slowing her feedings down so that they take a full hour; and stretching out the feedings to every 4 hours instead of every 3 hours (which allowed us to increase the volume a bit). Overall things went well! We noticed she was more alert and content during her wake periods instead of constantly screaming or fussing (although she still had those periods too, just not as often). Nights were decent...she would go right back to sleep when given her pacifier. The only problem was that 8am feeding--every morning she would get almost to the end and then everything would come back up. So we were talking about changing that overnight feed so that there would be more time between the end of that and the beginning of the first full feeding of the day.

And then late Wednesday night came, and Verity was a mess. She had caught something or other and was congested and miserable. She slept pretty well when I put her beside the diffuser with Thieves and peppermint essential oils, but she was definitely not breathing all that well, and the reflux seemed to be coming on again.

So Ted brought her to the ER (after we called the Tricare appointment line to see if any acute appointments were open--this was the last day of August, the last day of her being on Tricare Standard, and so only acute appointments could be granted to her. There weren't any, so it was a moot point). It was Thursday afternoon. He took enough breast milk for two feedings, thinking he would be home in the evening.

To make this shorter:

* Her lungs were clear and there was no fever.

* They ordered an ultrasound. There was too much gas in her belly to see anything; they ordered another one after her feeding had had time to settle.

* The second ultrasound was also unsuccessful.

* They ordered X-rays. First round of X-rays was inconclusive.

* They ordered more X-rays. They thought there might be an obstruction.

* A surgeon was called. Eventually he declared there was no obstruction; however, he was concerned about what he termed "rectum malformation." (This is not the text you want to receive from your husband when you're anxiously waiting for an update.)

By this point it was past bedtime, and Ted and Verity clearly were not going home. He dozed with her on the ER bed until they finally got to go to a room in the PICU, where they slept fairly well considering the circumstances. They discontinued breast milk feedings for Verity and gave her Pedialyte/IV fluids through the night.

This morning:

* Verity's white blood count was high, and cultures revealed what seems to be a UTI. 

* Thus, another day/night in the hospital.

* Three criteria for going home: getting the UTI under control; consistently good sats; tolerating feeds.

* The "rectum malformation" that I had spent much time stewing about?? Um, she has a small rectum. As in...our small baby has a small butt. She may have constipation issues when she moves past breast milk. Seriously?! I worried for THIS?? Does this doctor know ANYTHING about Trisomy 18 babies?? Shaking my head here...

This afternoon:

* Verity got a dose of antibiotics for the UTI.

* I left my kids at home with their Grandma J and Great-Uncle Rande and Great-Aunt Jo so I could come to the hospital.

* We got to meet the GI doctor on duty, who "happens" to be the very one that our GI doc from Omaha recommended to us! He was wonderful and confirmed much of what we were thinking. We look forward to working with him as we go forward. 

* Verity started regular feeds again at 2pm, with 70ml of breast milk every 3 hours. She seemed uncomfortable halfway through the 2:00 feeding but slept completely through the 5:00 feed.

* Ultrasound of her kidneys and bladder (she slept through the whole thing).

This evening:

* Visit from Rhonda, Rande, and Jo.

* First dose of Zantac (I think?), a reflux med

* Instead of a 10-hour continuous feed through the night, we will do 8 hours.

That's all I know! Hopefully we can rest tonight and go home tomorrow??!