Living the Life of Rylie

So, last Monday, I came home from work and there was this teeny little kitty in our yard. Being the softie that I am when animals are concerned, I got it a little bowl of food and milk. I noticed something wrong with its little face, like it might have been caught in something and got ripped.
The next night, it was still here, but had decided to venture onto our back deck. So I did the humane thing and moved its food to the deck. And that's when it let me pet it. I told husband, "He let me pet him!"
Husband went out to try and pick it up - and the kitty let him! He brought him inside to get a better look at its injury. It was BAD. So, I took him to the vet.
Two days later, and against my better judgement, meet Rylie J. Hall.

CT Results

Levi had a 2nd CT of his sinuses today. Even after a 21-day cycle of antibiotics, his sinuses are blocked. So, sinus surgery is in the future. As is a tonsilectomy, repeat adenoidectomy (apparently they can grow back), and new ear tubes. Dr. Rose thinks Levi will feel much better after having this done. We appreciate that everyone keeps us in their prayers.

Tomorrow is Levi's Procedure at Duke

Tomorrow is the day that my peanuts butters goes to Duke Children's Hospital for his Upper Endoscopy with Biopsy.

We will leave home around 6 am. Check in at Duke Children's Hospital by 8 am and begin the pre-op procedures. Then, his actual procedure will take place.

WARNING: READING ANY FURTHER MAY RESULT IN BEING GROSSED OUT

The doctor will be running a tube with a light/camera/pinchy-thing on it through his esophagus and stomach to the top of the small intestine. There, they will take tissue biopsies to look for ciliac disease (the inability to process wheat products). On the way out, they will stop off in the stomach to take tissue biopsies there to determine if ulcers, infection and/or gastritis (inflammation) exist, as well as any other disease processes. Finally, they will stop in the esophagus and take tissue biopsies to look for infection and disease process as well as looking for: inflammation (a sign that his gastric problem is, in fact, reflux - what he's been treated for since May 2009); increased eosinophils (a sign that the problem is actually Eosinophilic Esophagitis aka "EE", which is what 4 of our 5 doctors highly suspect with the 5th accepting it as a possibility).

Levi always has a hard time "waking up" after anesthesia. We're hoping he's grown out of that (it's been 9 months since he was last anesthetized) but just in case, will you say an extra little prayer for my baby boy that it'll be easier than the other times? Especially since he's going to have to go through it again on Tuesday of this coming week for his CT at UNC.

The plan is that we'll speak with the doctor who will tell us what he saw while doing the procedure, but that we will not have a definitive answer on the result of the biopsies for about a week.

I appreciate that any of you reading actually care. It means a lot.

Take care.

Anna

Just be thankful...

DISCLAIMER: In no way, shape or form do I intend to minimize the very harsh reality of children with terminal illnesses.

My baby boy has chronic respiratory and sinus illness. Since he was 5 weeks old, he's had a nebulizer machine at home to administer his asthma medications. Since he was 3 months old, he's taken the highest-possible-for-his-age/weight-dose of Prevacid to treat the symptoms of reflux. He's had 4-6 courses of oral steroids each year. He is almost 29 months old.

His current list of medications includes:
Pulmicort Respules 0.5mg nebulized, twice per day ($35)
Albuterol 2.5mg nebulized, every 4-6 hours as needed for coughing and wheezing ($10)
Prevacid 15mg tablet, twice per day ($60)
Zyrtec 2.5mg, once per day at bedtime ($10)
Flonase Nasal Spray, once per nostril per day at bedtime ($10)
Prednisone 15mg, twice per day ($10)
Omnicef 250mg, once per day ($35/10 days)
Multivitamin + Omegas ($20)

At 29 months old.

I blogged a week or so ago about his specialists appointments at Duke. He also sees an ENT at Chapel Hill. He had his first set of ear tubes at just shy of 7 months old. His second set at 18 months, and his adenoids removed also at that time.

Two weeks ago today, Levi was admitted to the hospital for an asthma flare. While there, and while opportunity presented itself, our Pediatrician ordered a sinus CT to see if there was indication that blockages could be to blame for the always running nose. All of his sinus cavities were blocked. She asked us to follow-up with the ENT he sees at UNC about this. Yesterday was that day.

Now, let me just preface by saying, I feel so very blessed that Levi is not sick with a terminal illness. And my complaints about my child's illnesses are in no way meant to detract from the realities of those with children with terminal illness. I know that, even at his worst, we still have it pretty good.

But, combine the sleepless nights, side effects of all the different medications, loss from missing work due to doctor's appointments and illnesses, loss of money spent for child care he can't attend due to doctor's appointments and illnesses, and loss of money spent on medications that treat ONLY his SYMPTOMS and not the root cause of the chronic illnesses, and you have a pretty exhausted mom. With very little patience for doctors making 6 figures who walk into an exam room, listen to my chief complaint about my child, look me in the eye and say, "Be thankful it's not terminal."

You think I'm NOT thankful? I'm absolutely thankful. But I'm sick of helping pay your six-figure salary with the measley pay I get after I pay bundles for health insurance and child care, so you can blow me off by saying, "he just gets more colds that are more severe that the average child." NO, REALLY?!? That's why we're here. So you can tell us WHY. AND FIX IT. That's your JOB. That's why you make so much more money than I do.

Let me end by saying that if you're reading this blog post and you ARE the parent of a terminal child, my heart goes out to you. I cry for children like yours. And I pray earnestly for them and their families.

But, my heart also goes out to other parents of chronic children, while your children's illnesses may not be terminal, I know, first-hand, how frustrating they can be.

I'll go shut up now, and just be thankful.

Good-Gosh-A-Mighty Mamma!

The things kids say. smh

Levi was an early talker, with many words before he was a year old, 3-4 word sentences by 18-20 months, and full-blown conversations on his "cell phone" and with "Scout" at 24-28 months.

We've already shared his anecdote, "Lord-A-Mercy" in an earlier blog post. Well, a new one is "Good-Gosh-A-Mighty Mamma." I'm sorry, what? Yea...like, good gosh a mighty Mamma, I'm hungry. Don't ask me where he picked that one up, but at least his pick-ups have been clean...so far.

Well, except for the "s" word. Noooo, that that "s" word. But, the s-h-u-t-u-p one. I thought maybe I'd misunderstood when my darling little angel child said, "Shutup Mamma." Excuse me, what was that? "SHUTUP MAMMA." (followed by a silly little giggle) Ok, A. We don't use that word in our house (shush or be quiet are our words). B. EXCUSE ME?!? Did you REALLY just tell your own mother, the one who carried you in her belly for 39 weeks, and was in labor for 4 days, and was cut from hip to hip just to get you here, to shut up? Surely you didn't. So, yea. We had a nice little discussion about how that word is an ugly word and we don't use it in our family. He tried to pull it once more, this time, aimed at his Thomas the Train bathroom toys while playing in the pool. That was nearly a week ago. We haven't heard it since. Fingers are crossed that we don't hear it again.

And, the cutest new thing? Each night when I'm putting Levi to bed, we have a routine. Bathtime. YumYums & Chewies (medicine). Nose spray (allergies). Fish mask (breathing treatment). Love Daddy night-night. Crawl into bed. Mamma reads a 'tory'. We say bed-time prayers. We give kisses and noses. I rub his back for just a minute. I leave the room. Well, last night, I guess I was dragging a bit and didn't get to the back rub in time, so I get this: "Mamma, you pet me!" Pet. Well, I guess we've referred to he and Bailey as brothers for so long, Levi's starting to think that he's a dog. Who needs to be pet. Do we win the Parents of the Year award for that one?

Oh, and one more thing...

To my Daddy, Granddaddy, Father-in-law, Stepdad, and Husband, I wish you all a very Happy Father's Day! Here's a picture of me with my Daddy and my Husband. I love you guys so much!

Report from Duke Pediatric Specialists

Our most recent journey to finding the root cause of Levi's frequent respiratory illnesses led us to Duke Pediatric Consultative Services. In April we met with the Allergy/Immunology Specialist where Levi was skin tested for allergies and had some bloodwork done. In May we met with the Gastroenterology Specialist to discuss Levi's diagnosed "reflux" and how it's management affects his asthma symptoms. And, today, we met with the Pulmonology and Sleep Specialist to discuss his asthma care plan, next steps, and sleep disturbances.

Allergy/Immunology: Skin test was negative for all triggers. And after the test, specialist tells me that, while the test was negative, this does not mean that he does not have allergies because many children will not show a proper allergic reaction during a skin test until they are at least 36 months of age. The next step was bloodwork. The results are really inconclusive, but did show decreased levels of Ig-M (Immunoglobulin Type M - which aid in the creation of T-Cell antibodies), good immunological responses to all diseases against which he's been vaccinated, and a very elevated white blood cell count. The doctor is, at this time, not concerned with any of the results and we will follow up in August to see if things have improved.

GI: There is some concern that we have been treating Levi for diagnosed "reflux" since he was 3 months old when his symptoms sound more like Eosinophilic Esophagitis (EE for short). While the treatement for GERD (reflux) that Levi has been on is a part of the treatment plan if he does, in fact, have EE, there will be an added medication to help reduce the swelling and inflammation associated with EE (which may be exacerbating his asthma symptoms when he gets a cold). In order to test for EE, Levi will need to have an Endoscopy. GI specialist will defer to Pulmnology before scheduling endoscopy because Pulmonology may want to do a Bronchoscopy and because Levi will need to be "asleep" for both procedures, it's best to do them at the same time.

Pulmonology: No bronchoscopy at this point so GI Specialist will proceed with scheduling endoscopy. Despite testing negative during the skin test for allergies in April, his diagnosis is Asthma/Allergies from the pulmonologist after speaking with the allergy & immunology specialist we saw there. Will defer to GI to schedule and perform the endoscopy, determine diagnosis of EE, and start treatment if diagnosed. Will follow-up in September to allow for diagnosis and at least 30 days of treatment of EE (if diagnosed) to determine if there has been a significant improvement in asthma symptoms. Anticipate scheduling a sleep study in October to test for Obstructive Sleep Apnea (OSA). If diagnosed, will recommend removal of tonsils, and follow-up to see if there is improvement. Assured us that while he's not making any changes to treatment plan now, he has "a few tricks up his sleeve" but wants to make sure all 3 of our specialists are in agreement on the plan moving forward and can't do that without the results of the testing we anticipate taking place in July.

Basically, we want to be sure that we are treating the ROOT CAUSE of Levi's frequent infections and not simply the symptoms. His frequency and depth of asthma flare-ups are more than are to be expected from a child his age, with his history, on the treatment plan in place right now.

Have I mentioned that I LOVE THIS LITTLE BOY?!?

The New Classroom and Adjusting

So...when there's a change in your child's life, how long is "normal" for adjusting to it? Levi was moved up the first of May. Since moving, he has cried. Every.single.morning. when I drop him off. What is wrong with my kid? For months upon months, he hadn't cried at drop off unless he was sick. He's not running a fever and doesn't have any abnormal complaints, so sick can't be the problem.

Is it normal for it to take a month or more to adjust? Is it just because the first week, he missed 3 days, then the 3rd week he missed 3 days (he was sick that time), and now, going into the first week of the new month, he had a 3-day weekend that was extended by one day on account of a doctor's appointment, making it a whole 4-day weekend? Sure, maybe that's all it is, and once we can settle into an actual "routine," he'll settle down. Right?