Skip to main content

March 2014 --- In like a lamb, out like a lion!



March went out like a lion for the Marshall family, as Ethan battled illness for the last two weeks of the month.  Ethan went to school on Monday, March 17th (St. Patrick’s Day) and didn’t get to return until March 31st (yesterday).

 

After Ethan came home from school on the 17th he had a nasty little cough, so the next day I kept him home from school to take him to the doctor. Ethan had a little bit of clear nasal drainage but besides the cough he seemed to be feeling okay. However, since we don’t like to take chances, we wanted to get Ethan checked out. It was a quick visit and there weren’t any signs of anything serious so we headed home but I figured it would be best to keep him home from school the next day anyway.

 

This ended up being a good decision since the clear nasal drainage started to turn into major yellow and green boogies and Ethan developed a fever as well. We treated the fever with a combination of ibuprofen and Tylenol, but overall Ethan was just miserable.

 

On Saturday evening Ethan appeared to be well enough that Jeff decided it would be okay for him to the Sportsman Banquet at church. Unfortunately, I ended up having to call him and ask him to come back home after Ethan threw up his entire dinner, all over himself, when I put him in his crib for the night.  Ethan doesn’t throw up often, so I knew that something had to be going on. I called and spoke to the doctor who was on call, who knows Ethan pretty well, and she thought that the amount of mucus in his tummy was probably the root cause of Ethan’s vomiting.  It was a very rough night.

 

Sunday we stayed home from church. Monday morning I called the doctor’s office because although Ethan seemed to be feeling better he kept running a fever, which had me concerned. We were able to get an appointment in the afternoon, and planned on getting Ethan’s first “big boy” haircut following the doctor’s visit.

 

The doctor’s visit did not go as we had planned. I had expected the doctor to say that there wasn’t anything to worry about and that we still had the green light for our cochlear implant activation the following day up at Carle. Instead, the doctor was concerned enough that he sent us to St. Mary’s for a chest x-ray and blood work to see if they could figure out why Ethan couldn’t keep the fever broken. So, Ethan and I headed to the hospital. On the way I called to let Jeff know what was going on, and reassure him that we’d be okay on our own, and then I called our friend Amanda, who is a hairdresser, to cancel our appointment to have Ethan’s hair cut.

 

If I had to describe the hospital visit in one word it would be HORRENDOUS.  We were there for nearly 3 hours. No one could get blood, and eventually they had an anesthesiologist come to the ER and he had to take blood out of a vein in the groin area! After they finally got blood, we headed to radiology for a chest x-ray, to rule out pneumonia. The x-ray was pretty simple and although Ethan wasn’t fond of the experience, it was not nearly as traumatizing.

 

As we were finishing up, Jeff was able to meet us at the hospital and took Ethan home while I ran to the store to get more Pedialyte, Tylenol, ibuprofen, etc. Once I got back home we got Ethan settled and I put a frozen pizza in the oven. Before we were able to finish dinner, our doctor called to let us know that he didn’t like how some of Ethan’s blood tests looked, and that he wanted us to head up to Carle to be admitted to the hospital. So, we packed up our bags and headed that way.

 

We arrived at the ER about 9:30pm. If the visit early in the day was HORRENDOUS, our time in the ER that evening was HORRENDOUS on steroids. Between just the regular process of being admitted to the ER, not being able to get an IV started, not having the results from the tests completed earlier in the day, it was almost 2 in the MORNING before we were settled into our room on the pediatric floor and had Ethan asleep and on IV fluids. I don’t believe that I am exaggerating when I say that minus the day that we learned that Ethan had PBD-ZSD; this ER visit was one of the most emotional days of my life as Ethan’s mommy. Ethan would scream every time he was laid down, because he “knew” someone was going to poke him again. He was crying so much he was making himself sick. It was horrible.

 

After getting Ethan asleep around 2am, Jeff and I tried to settle down for the night as well, but it didn’t last long, since Ethan woke up at 4am, and was up for the day. Tuesday, Wednesday and Thursday were long days and looking back sort of blur together. All the tests came back negative, it wasn’t one of the respiratory viruses that they checked for, it wasn’t a UTI, it wasn’t rotavirus, etc. So, since the doctors couldn’t figure out what was causing Ethan to be sick, they didn’t want to treat him with IV antibiotics, so he simply received IV fluids, and we sat in the hospital for “observation.” The doctors and the nurses were great, but we were so excited to be released on Friday! They never figured out what was going on, but since Ethan seemed to be feeling better, we were sent home.

 

Although we despise being in the hospital there were a few “highlights” to our visit.

One of the medical students completing her pediatric rotation was a young woman named Jasmine who had bilateral cochlear implants. Jeff and I had the unique opportunity to speak with the future doctor as well as with her interpreter. Jasmine wore hearing aids until she was 5 years old when she was implanted on one side. She received her second implant only a few years ago and shared that it doesn’t sound the same as the one she had placed when she was younger, but that she believes that having both gives her more access to sound. She grew up oral and did begin learning ASL until late junior high/early high school. She is “bilingual” now, and finds that in noisy situations such as the hospital, while her CI’s are very beneficial she is very thankful for ASL because it can be hard at times to localize sounds and if people are wearing masks, she cannot rely on her lip reading ability. Jasmine shared that she believes that children who receive cochlear implants should still learn ASL. It has been her experience that being both oral and fluent in ASL has made her live richer and enables her to communicate effectively in any situation. The future doctor Jasmine is an amazing young woman who I believe is going to be a very successful physician. She shared that she is considering specializing in anesthesia.

 

In addition to meeting Jasmine, we had the opportunity to share our experience with Ethan getting a feeding tube to a young mom who needed to make that decision for her daughter. As many of you know I am pretty open about all of this stuff, so I didn’t have any problem sharing. What made the experience unique is that the mom was Puerto Rican and since I only know a handful of Spanish words/phrases we spoke through an interpreter as well.

 

Who would have guessed that our hospital stay would be such a multilingual experience?


Comments

Popular posts from this blog

"God Chooses Mom for Disabled Child" by Erma Bombeck

I don't think this is exactly how it works, but I had to share anyway. I believe with all my heart that God does not make mistakes, and although I will fully admit that it hurts my heart that any child is born (or develops) disabilities and/or life threatening illness, I know that God is sovereign and that He has a divine plan (even when we don't understand it!). I believe that God brought Jeff and I together and that He knew Ethan even as he was growing inside of me. While this is not the journey we would have dreamed of or chosen, and there are going to be times (and have been already) when we struggle, stumble and fall  it is our hope that in the end that we will bring glory and honor to the Lord.  God Chooses Mom for Disabled Child Written by Erma Bombeck Published in the Today Newspaper Sept. 4th, 1993 Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mother

Faces of Peroxisomal Biogenesis Disorders

This Saturday we are hosting the first annual Pancakes for PBD benefit.  All the proceeds will go to the Global Foundation for Peroxisomal Disorders to help offset the costs for our family and others like us to attend this summer's 2012 Family Support Conference in Orlando, FL.  We hope that this will become an annual tradition and allow us to help raise awareness and money for peroxisomal biogenesis disorders. Here are just a few of the faces of PBD. 

So much and so little to write about...

When I started this blog I don't think that I could have imagined a time would come in which months would go by without me writing. However, that is what has happened. So much has changed over the last almost eight years since Ethan's birth and subsequent diagnosis with PBD-ZSD, yet at the same time so much hasn't. Unlike parents of typically developing children we find ourselves still parenting a child with complex medical needs who's developmental skills range anywhere from 9 to 18 months. Ethan still has PBD-ZSD, and right now his uncontrollable seizures are a major issue. We still fight PBD-ZSD the best we can each day with a basket full of medications and supplements and other medical interventions (feeding tube, cochlear implant, AFOs, etc), numerous therapies, school (which Ethan loves), and prayer. We advocate for him and all children and families impacted by PBD-ZSD and related peroxisomal disorders through our involvement in the Global Foundation for Perox