Weathering Verity's First Real Sickness

March was a busy month for Verity! In between her big birthday party and getting her first car, we had an emergency trip to the hospital along with a brief (30-hour) stay in the pediatric unit. The week leading up to Verity's party, a few of our kiddos had been sick with some kind of respiratory junk, the first time in a long time we've really battled anything other than minor sniffles. Thanks to our wellness regimen, we were able to contain things pretty well--the kids who did get sick were better within a couple of days, and we managed to keep them as far away from Verity as possible. I had every diffuser in the house kept busy disseminating our essential oils into the air, and we oiled everyone's feet at night and drank a lot of Thieves tea! It seemed that Verity, Rhema, and I were going to escape unscathed.

But alas, in the end Verity did succumb. Frankly, I'm amazed that she was the last to get sick! Her immune system does not seem fragile at all! But of course it hit over the weekend...our nurse warned us on Friday that she suspected something was coming on, and sure enough, Saturday morning Verity was just not herself. She had a low grade fever Sunday afternoon, and we decided to put her oxygen on for a bit of support. We were hopeful that we could ride it all out at home.

But Sunday night things took a turn for the worse. We were so grateful that we had a nurse on duty overnight! She worked with our oxygen tanks as needed but our supply wasn't enough (we only have 2 tiny tanks because we were prescribed a minimal amount--which we aren't even currently using--to help with OSA). We learned later that one of our valves was faulty, so we had an empty tank we thought was full.

Anyway--by 4am we were making plans to take Verity to the hospital, but before I could collect my thoughts and my things, our nurse told me I needed to call 911 instead. Verity was non-responsive and turning dusky. The EMS team arrived quickly and gave Verity a nebulizer treatment and more oxygen before we strapped her into her car seat and secured that into the ambulance. I rode along with her, and it was obvious that the treatment had helped significantly--she simply sat quietly, looking around!

They never did any testing to find out what respiratory thing she was fighting, but whatever it was, it didn't knock her out too long. We were admitted to the hospital and stayed overnight. Verity slept almost the whole time we were there. We knew she wasn't feeling well because she never fought her cannula! The next morning, though, she was doing well on minimal oxygen (she was only at 1/4L after arriving anyway), so we were discharged with more tanks from our medical supply company and orders to keep her on 1/8L probably for "a couple of weeks."

Three days later, we followed up with her PCM, and after a half-hour trial, we were able to ditch the oxygen! Of course she was heavily monitored, but praise the Lord we never did have to give it to her again. And a follow-up with her pulmonologist a week after that also gave good news--she doesn't think Verity needs to be followed, as her lungs are (and always have been) so clear. However, we did put another follow-up appointment on the schedule just in case the sleep clinic (scheduled for the end of May) doctor decides that Verity should be seen by pulmonology again.

GI Mystery

A recap of Verity's GI issues for those who don't know the history:

• Fed by NG tube from birth through 2 months (Feb 28 - May 1)
• Fairly severe reflux from 4-6 weeks; vomiting stopped when we quit using formula fortifier to give extra calories to her breast milk feedings
• G-tube placement on May 1; began oral feeding attempts
• From 2-4 months of age (May - early July)--very little vomiting or spit-up episodes; making gains with oral feeds
• Starting in month 5 (mid-July, following a move to higher altitude), more and more reflux and vomiting episodes, culminating in a trip to the ER shortly after her 6-month birthday (Aug 31)
• During the hospital stay, discovered and treated a UTI with a round of antibiotics; started Zantac
• Zantac gave little visible relief; however, we discovered the "open syringe" method of feeding (like a gravity feed, allowing venting to happen during feeding times), and Verity had significant improvement. Hooray!
• Good feeding times lasted about 4 weeks (mid-September through mid-October)
• Discomfort during feeding, vomiting, and erratic bowel movements surfaced and lasted several weeks, getting progressively worse. 
• Several doctors' visits plus pH probe in late October; increased Zantac dosage.
• Discovered another UTI after taking a culture October 27; treated with another round of antibiotics

Last weekend, almost immediately after returning home from the 24-hour pH probe in the hospital, Verity began having severe intestinal difficulties. The vomiting was insane; there was no sleep for any of us; and every feeding was incredibly stressful, to the point we skipped a feeding on Sunday and bought Pedialyte in a last-ditch effort to get something into her body so we could avoid an ER visit. We were having to scale back the volume of her feedings, at one point going as low as 70ml (we had been up as high as 95ml in early October). 

I called Verity's GI doctor and her PCM; I discussed things in depth with our home nurse; I posted in Verity's Facebook group asking for prayers; and I posted in one of my Trisomy parent groups asking for insight. From Sunday night to Tuesday morning a huge transformation took place, and it became clear that we were on the right track!! So many people offered ideas and suggestions, and I promised to give an update, so here it is as best as we can put things together. As is probably often the case, multiple factors are undoubtedly in play, and we are hoping and praying that we have hit the right combination of things so that the relief she has had in the last 5-6 days will be long lasting indeed.

Here is what we did:

1. Many people stated their children had reacted to antibiotics a week or so into the regimen. Verity had been on hers for a week, and we had seen a definite correlation to her major vomiting episodes and the feeding times that contained her antibiotic doses as well. So, starting Sunday, we separated the medicine from the feedings and instead gave it between times with plenty of water. Voila! The vomiting stopped!
2. Unfortunately, the discomfort during feeding times did not stop. We wondered if the antibiotics were not adequately handling the UTI--both this episode and her other infection showed the E-coli strain of bacteria, and, having learned that their barbed shape makes them difficult to actually get rid of, we turned to a more natural solution that we felt good about giving Verity (unlike the antibiotics--which we dutifully finished despite our dislike of them). A friend recommended U.T. Vibrance, which Ted picked up on his way home from work on Monday. We gave Verity 2 doses Monday afternoon and evening, and by Tuesday morning, our nurse was amazed, saying, "This is not the same child I left yesterday!" Verity was completely relaxed all day Tuesday, and Tuesday through Thursday nights we actually got some decent sleep! She slept several hours straight, and then when she did wake up, it was only once an hour for a few hours. I think Ted was actually able to sleep one of those nights all the way through!

This tells me that Verity's UTI was indeed probably the biggest underlying cause for the vomiting and discomfort. Poor baby was MISERABLE, and it was absolutely heart-wrenching to hear her crying and to see her writhing her little body in pain. I would have done anything to take the pain and agony from her.

At the same time, we know we are still dealing with significant acid reflux--this morning Verity vomited for the first time in a week, and there are still times when she is fussy and we can tell she is feeling the acid in her esophagus. When I spoke with her GI doctor this past Tuesday, he told me that the pH probe showed that the acidity in her reflux is concerning...she was already on the highest dose of Zantac they could give her, and that was in her system during the test, so the levels of acid that she was STILL dealing with meant that we needed to take another step in relieving this for her.

Thus, a new medication, Prevacid, is on order. We were unable to get it for several days due to it being a "special order," and so we hope to have it in hand tomorrow so we can begin giving that to her (in place of the Zantac) and see if that makes a difference. If not...well, then I'm afraid we will have to consider surgery.

Meanwhile...it is Sunday evening, a week after our nightmare weekend, and I am incredibly thankful to be on the other side of THAT awfulness. Verity is resting peacefully during her feeding right now, almost but not quite asleep. We have had better rest than we've had for a long while, even though she has still awakened us multiple times the last couple of nights. Overall, we feel the trend is positive!

Many folks know we love our Young Living essential oils! And my report wouldn't be complete without sharing a couple more ways we have supported Verity's health with natural means:

1. When constipation became a problem, we began putting a drop of peppermint oil in a clean diaper and letting it soak in before putting the diaper on her. I am pleased to say that not only has Verity pooped daily...but she has also produced multiple times a day for most of those days!
2. Usually we rub a "Wellness Blend" on the bottoms of our feet nightly; when we wondered if the UTI was just being stubborn, we began applying that to her feet throughout the day as well. The blend is a homemade blend using the following Young Living essential oils: Lemon, Oregano, Frankincense, Thieves, and Melrose. (Side note: lemon in particular supports good urinary tract health! And those other oils have constituents that really support our immune systems!)

We are grateful for the many prayers offered on our behalf for sweet little Verity. I look forward to visiting with our dietitian, who comes to the house on November 16. By then Verity will have (hopefully) a few days with the new medication in her system, and hopefully we will be able to further increase her intake. (She is at 85ml per feeding now; we tried 90ml for couple of feedings on Friday but it seemed a bit much.)

Thanks for reading if you made it this far! We will keep you posted!