Tuesday, February 28, 2012

A big old update on Miss Priss!!

I am hoping this post helps to make a little sense of my absence. First, let me say, in the end, everything is OK!!! Kinsley Anne is great, we are doing well. But, it has been a scary and stressful ride the past several month. I apologize if medical speak is boring to you but this post may have a bit much of it. I also want to take a moment to say I take my hat off to all moms & dads who have medically challenged or medically complex children. I know you don't have a choice in the matter, but it is not ever easy to watch your child endure pokes and prods & I don't believe it ever gets easier, no matter how often you watch it.

When Kinsley was born, she went to NICU. We found out about her little left lung. Everyone focused on this as her primary medical issue. She did great, she was our little fighter. Her pulmonologist even recommended that she NOT get the RSV vaccine (despite my better judgement) because she was doing so well. When she was a few weeks old, she got bronchiolitis. It was RSV season, this didn't surprise me. She did breathing treatments, she ended up on Advair, a twice daily inhaler to prevent recurrences of these breathing problems.

my sweet girl in the NICU before I went to see her!
One of my supervising MDs texted me this picture from the NICU..

The Advair was a fight. I promise to do a post on this. We ended up on Pulmicort eventually. Pulmicort is given through a nebulizer (the steamy looking vaporized solution). She does great with this. She is now on Synagis (the RSV preventative shots) this RSV season & although it's horrible to watch her get shots, she's been healthier from a breathing perspective.

in the waiting room waiting on her Synagis shots

Between the age of 4 months old & 9 months old, she had a lot of congestion, we briefly saw the ENT & got clearance that her nasal passages were not involved in the "littleness of her other airways." We treated her with the direction of her pediatrician with allergy medicine when she became old enough. First, Claritin..nothing. Then, Zyrtec. We felt like we gained some benefit. She stayed on this. Eventually, we added in Singulair via the pulmonologist. This helped the most with cough but not congestion.

When she was about 9 months old, she began getting ear infections. She got 4-5 before she was 1yr. She would also get sinus infections with them...as in, goop out of the eyes, sneezing out green goo, throwing up mucus, etc. Yum. She was on & off antibiotics constantly. We were referred to the ENT and saw him on a Monday. That Wednesday morning, she had tubes put in her ears & her adenoids taken out. We all thought this was going to be a miracle. It was for her ears. She has only had 1 ear infection since...knock on wood. However, she has continued to have sinus infection after sinus infection. She will finish antibiotics on a Saturday & look GREAT. By Monday, she's draining again. I do not rush her back to the doctor in hopes that this time, it's "just a virus," but sure enough, within 7-10 days, she's got fever, breathing problems, vomiting, no eating, green goo, etc all over again. One of the pediatrician's nurses witnessed this recently because on her 15mo well visit (a Friday) she was on antibiotics. Everyone joked about how "healthy" she looked. She finished antibiotics the next day. The following Monday, we were in the pharmacy picking up a prescription, and the nurse saw her & commented on how nasty her nose was. She talked with Kinsley Anne's doctor and she was referred to an allergist. That meant no Zyrtec until her appointment.

We saw him ~10-12 days later and by that time she had a full-fledged sinus infection. I would post the picture of her from that morning but one of my coworkers teared up from seeing it. It's that pitiful. She couldn't breathe out of her nose because it was completely blocked. Her eyes were puffy beyond belief, she looked blotchy, she had a fever, she.was.sick. We went to the allergist who I felt like is very good. Unfortunately, he did have to prick her back with a couple of allergy trays. She, fortunately for us, came back allergy free. But it left us totally perplexed. He explained that there is a "triad" of illness including anatomy [adenoids, tubes, "ENT stuff"], allergy [which he had just ruled out], & immune system. He wanted to go ahead and do an immune system workup on her since she was so sick all of the time. He also swabbed her nose and it was all bacterial cells in her nose so he restarted her on another antibiotic, however, this course was potentially going to be 1 month long instead of 10-14 days. So, we went to the lab and had 2 pages of bloodwork done.

He also mentioned a very scary test that we may need to have done if her immune system labs came back normal. He asked if she had ever had a sweat test done. Now, to a non-medical human being, that might sound insignificant, but to a nurse practitioner mommy, I didn't want anyone thinking down those lines in reference to my little girl. A sweat test is a test that's done to rule out Cystic Fibrosis. I immediately panicked inside but kept calm outside. I said no and he knew that she saw pediatric pulmonology. He explained that her having CF would be like Kinsley Anne getting "struck by lightning twice" considering how she already had a lung anomaly that couldn't be explained. He figured this is why she hadn't been tested. But as a mom, I immediately wanted it ruled out. So, the next week, I talked with the nurse practitioner at the peds pulmonology office and asked what the odds were that we could go ahead and get that scheduled rather than waiting to have lab results 3 weeks later. She agreed and got it scheduled for last Friday. Still a 1 week wait, but better than 3.

during the stimulations that made her sweat for the sweat test.
it doesn't hurt, but she doesn't like anything being hooked to her...understandably.
wearing the discs that collected her sweat.
she got to play in the children's hospital inpatient playroom & eat a snack while the test was running.

Kinsley Anne has been a trooper through all of this. I am not going to lie....She hates doctors. She hates nurses. She hates offices. She hates scales, stethoscopes, otoscopes, gloves, syringes, you name it. But, she recovers in time. She snubs for hours but with TLC, she returns to our sweet girl giving hugs & sugars.
see? she recovers!

And the most important thing is, that we know that our sweet girl's immune system labs & CF test all have come back normal. We don't know what that means as far the "next step goes" or if we will agree to taking "a next step." But, Kyle and I feel like we have ruled out the most significant & obvious things. She goes back to the pulmonologist next week & the allergist/immunologist the following week. We may get some direction then. For now, we are just giving miss KA a break from doctors while we can. She is still on antibiotics from the allergy appointment & therefore "healthy." Multiple people have asked me to have her evaluated by the pediatric infectious disease specialist here and I may do that, but I can't promise that I will let them draw umpteen labs on her. "Preventative antibiotics" was something else that has been brought up to me by the pulmonology group which is certainly an option we are considering if that is something they want to pursue. We are really hoping that she's just susceptible to "the crud" and will outgrow it as she grows.

kinsley anne has begun loving on all babies.
Kyle is not a fan of this baby doll [he thinks she's freaky.
but she's my childhood baby doll...."Apple Pie Baby"]

I just wanted to give everyone an update on what's been going on in our life & why it's been relatively quiet on the blog front. I couldn't update too much when I had no answers.

the above are from a mommy daughter date at Chick-Fil-A

We are openly accepting prayers & positive thoughts. Our sweet girl has always had a happy smile to share no matter how sick she is & we know she will continue to do that. We continue to recognize that we are beyond blessed. A recurrent or chronic sinus infection is nothing compared to the children's hospital full of patient's that are facing life-altering diagnoses. I realized very quickly how one sentence from a doctor's mouth can put everything into perspective. Fortunately, Kyle and I feel the comfort of a family who loves us deeply, friends who will stand by you even in the scariest of times, & a God who never abandons us.

Until Next Time..
Love, Jen


Anonymous said...

So glad to hear it is not CF! When my son who is now a healthy 26 year old was 2 months old his pediatrician told us he thought he had CF and I was freaking out. Fortunately his sweat test was normal. While we faced many sicknesses, resp. arrest x 2, numerous hospitalizations the first 3years of his life, he is healthy as a horse now. Will keep your precious KA in my prayers! Suzanne Ulmer

Jennifer Gilbert Settle said...

Suzanne, just read back on my old posts. That is terrifying. I am so glad he's healthy & it gives me a lot of hope!!!!! She did great this summer but has already shown signs of illness as the weather changes. I think she's just going to be one of these "asthma kids" who has a rough time in the winter.