A letter from the Doc

Jonah's pulmanary doctor gave me a copy of the letter she sent to our insurance company. It was perfect in explaining Jonah, and his diagnosis thus far. I know even I get confused when trying to explain it to friends and family, so I thought I would post it so you too can understand the big picture. It is testimony to me that miracles do happen, and Jonah is angel... So is his doctor for putting up with mama bear and carring for mr. complicated.
Warning...very long!

To whome it may concern,

Summary: Jonah is a 16mo infant born without complications. At 2 months of age he developed severe RSV bronchiolitis and pmeumonia.He also had Hemophilus influenza bactermia. He was intubated and ventilated, infact, requiring High Frequency Jet Ventilation. He was very close to being considered for cardiopulmonary bypass. At one point, there was discussions regarding withdrawing support, due to the degree of C02 retention.

He survived, and was discharged in early Feb of 2008, having been admitted on 1/14/08

He was subsequently readmitted on 3/26/08 with respiratory distress. He was hospitalized again in Aprilfor 2 weeks with Parainfluenza Bronchiolitis. He had human metapneumonvirus in June 2008. Despite, frequent ER visits and very close outpatient attention, he required a 4th admission in Sept of 2008 for respiratory distress. During that admission, he had a Nissen Fundoplication and G-tube placed for dysphagia and gastroesophageal reflux.

He has continued to require frequent ER and outpatient visits and constant telephone monitoring. He is on a significant amount of medication, yet is chronically in respiratory distress. He is now suffering the consequences of steroid dependence.

Hospitalizations: Between January 2008 and present, he has been hospitalized 4 times for a total of 105 days of hospitalization.

ER Visits: Between March to present, Jonah has had 14 ER visits

Diagnosis to date:
Chronic Airways disease
Chronic Lung Disease
Mild subglottic stenosis
GERD-s/p Nissenfundoplication and G-tube placement
Dysphagia
Sleep Dissordered Breathing
Steroid Related Obesity
Developmental Delay-related to chronic pulmonary disease
Recurrent C. Difficile positive diarrhea

Laboratory Tests & Procedures, To Date:
Extensive Immunologic Workup
Cystic Fibrosis Workup: Sweat Test & Mutation Analysis
Echocardiogram
"to many to count"CXR's
Polysomnogram
Numerous overnight oximetries
Flexible Fiberoptic Bronchoscopy & Bronchoalveolar Lavage
UGI
pH Probe
NG/NJ placement
Nissen & Gtube placement
Allergy Testing (RAST)
Swallow Studies-numerous

I have been caring for Jonah, as his pulmonologist since March 2008. In spite of appropriate care of his lungs and airways, as noted above, he continues in chronic respiratory distress. His base line is one of noteable increased work of breathing and audible wheezing. It is particularly concerning that he is now suffering from the side effects of steroids. Unfortunatley, neither myself or any of the physicians at PCMC have been able to adequately imporove his respiratory status, to the point that he can be weaned off of steroids. I am requesting a second opinion, with the objective documentation of Pulmonary Function via Infant Pulmonary Function Tests at National Jewish Center in Denver, Colorado.

There are no centers, no facilities in Utah, or anywhere in the west, closer then Denver, that perform Infant Pulmonary Function Tests. In addition, National Jewish Hospital/National Asthma Center is renowned for it's research in lungdiseases.

Jonah's health is static-clinically, his degree of pulmonary comprimise has not improved, despite attention to GERD and dysphagia, nutrition, airways infection and inflimation, yet the detrimental cosequences on his health of continued steroid use are mounting.

I desperately request authorization to allow Jonah to visit National Jewish Hospital and Asthma Center for consultation and testing.

I have more then 200 pages of hospital, ER, labs and outpatient visits for your evaluation, if so requested.

Thank you for your time and attention.

On behalf of Jonah,

Day Dreamer

We are looking forward to our much needed family vacation. I catch my self daydreaming about being on the beach with Isaac and the kids, showing them the Redwoods and such. Only five more days. It's fun to escape reality and recharge. I think everyone in this house just needs a break. We are really excited.
I have not heard a word from our insurance, when I call I am shuffled from person to person, computer animated "people" who are incapable of directing me to the pre authorizing office. So I have not made much progress. I am going to be more fierce.
Morgan's toe is semi healed without any anti biotic since she spit them out. I'm not sure if she should go back in to the doctor's again or if I should just wait and see if it completely heals. Jonah is still wheezing, I am in great hopes that being in the lower altitude he will breath with a little more ease.
Well, the kids are both up so it is time to put my mom hat back on. The quiet was nice while it lasted. We have a day full of appointments so we will be busy today. We also found a new park that is so much fun. Jonah doesn't care for the slides but he loves watching his big sis go up and down on them.

grabbing for straws

Last Sunday as I was getting ready to leave for church my mom called. My Grandma (who is my only relative here in Utah) was rushed to the ER. I went up to the hospital as soon as I could arrange child care for the 2 kids, as Isaac was at work. (Thank you Beth!) It was a long day filled with tests and blood draws. She suffered a mini stroke aka TIA. Right before my eyes my 81 year old grandma was growing as inpatient as a nine year old boy. When she was admitted I started to fill out her paper work, as I was asking some of the questions, I noticed she was getting more and more confused. Although she is 81, she is a very intelligent woman with a medical background. I did not expect this kind of confusion and memory loss. I was very upset by the whole idea that my grandma might not be the same. She was discharged 2 days later. Her memory is still hazy and the expected time the Dr's gave for it to return has passed. I am scared and have been at her house every day this week to take care of things. Tomorrow my aunt Lisa is flying out for a week to help . It is hard. I feel like there are not enough hours in the day to take care of all these people who I love. I feel like I keep giving and giving but it just doesn't matter. Life moves faster then I can.
Morgan has an infection in her big toe and fights me to not have to take her medicine. When I finally get it in her mouth she drools it out. As my Patience was running thin I finally threatened an early bed time, she gladly excepted my offer. Jonahs asthma is growing out of control, and he is once again back on oxygen. I have become desperate. On Monday I will take him to master Lu for some acupuncture. Keep sending blessings they are more then welcomed here!

The Right Now's

I have had the chance to speak with the patient coordinator from NJ (National Jewish) She let me know that Jonah will be scheduled to stay for a minimum of two weeks. More or less depending on the findings. They have most of his medical records in hand and are now primarily waiting on Insurance. While I have received four phone calls from NJ, I've received none from Malina Health Care. The Rep told me to just keep on them and call every other day. As my brain has more and more time to absorb what is going on I am starting to have anxiety. I hate not knowing what the out come is going to be. My brain is exploding with questions that no one can answer. Will all of this soon just be a memory? Will Jonah be "normal" again? Will he be okay off of steroids now that his body is dependent on them? I don't know, I don't know, I don't know. My biggest fear is that we will walk away with no new information. I need a real and true diagnosis.

Yes. Jonah's doctor has diagnosed him with having CLD (Chronic Lung Disease) but I have spent many hours on the computer and in the research library at PCMC and am amazed that not one case of CLD has come from RSV or developed from ventilators on previously healthy lungs. I have found many cases of CLD in premature babies, COPD patients and in overall
unhealthy children but not in any full term healthy babies. I did, at Jonah's last appointment bring this up to the doctor and she agreed, Jonah is complicated... thus another reason for a second opinion.

Jonah has been off oxygen in the day time (except napping) for five days. This is great progress. He is still chronicly wheezing but his stats are staying stable. The doctor said to ease up on the medication that controls the wheezing (it's another inhaled steroid, She doesn't want him to become reliant on that too) It is hard to hear him breathing like this. I try to ignore it but how do you hold your baby and pretend it's okay?

I often wonder what lesson is to be learned and who is being taught. What I have realized is that I need to depend more on the Lord and keep the holy spirit close to my heart. I need not dwell on the questions, the what if's or the future. I need to stay focused on the right nows. And right now I have to go get ready for church.

Things may be looking up!

We got Jonah's labs back. They did not read the way we had hoped. Jonah's pulmonary Doctor agreed that it was time for a second opinion. She is referring us to a well renowned hospital in Denver, Colorado. It is a research hospital by the name National Jewish research and medical center. Nationaljewish.org The hospitals main focus is Immunology and respiratory. Jonah's doctor has many In's there and feels that there will be great communication between her and the other doctors. The process of an out of state referral through our insurance is a long drawn out process that may take up to three months. Jonah's Doctor called me today, letting me know she faxed the first step of paper work. Although this is frustrating I know that there will be an answer when all of this is over... Yay! I just got a phone call from the specialty hospital in Denver. They still need to get the okay from our insurance but the woman I spoke with said that I will here something soon. She also said that he will most likely be going through the out patient facility, the stay will be at least five business days. She also mentioned that we will be able to stay at the Ronald McDonald House (phew, that cuts a hotel price in half then in half again!) I am trying to stay positive although I am very scared. I guess my biggest fear is that something else could be going on, on top of what we're dealing with. Honestly though, all I want is an answer, a real diagnosis and a cure... Really, is that too much to ask for?

Wheeler Farm

We decided to go to the farm to see the animals and feed the geese. (Morgan's favorite part) As soon as we walked on the property the geese started to call one another and were literally chasing Isaac and I. (Isaac was holding the bread) So I guess they were chasing Isaac but Isaac wouldn't stop following me. Morgan was standing by the fence post screaming for me and I am yelling at Isaac through my laughter, to just drop the bread, while running with Jonah in the stroller. Finally he just started ripping small pieces off and tossing it to the birds... I got away! It was so funny! We were both laughing the whole time, but still a little scared. I made a comment to one of the workers and his reply was this, " Oh, those birds are just starving." Um... yeah Mr, maybe you should do something before they eat my first born... Or Isaac's hand. He got bit a few times but not too bad.

Events of Today

It's already been a day and it's only 1:00pm. We got up early this morning for Jonah's apt. It was a clinic up at PCMC that will focus on Jonahs eating and over all weight. We have been waiting to go to this clinic for over 4 months. It is called the FUN clinic, but to my surprise it wasn't fun at all. (Follow-Up Nutrition) I imagined a big room with lots of toys and very spacious. Maybe a few tables so that the parents could sit and chat with the doctors...Nope, all wrong. When we arrived I was given a stack of papers to fill out (really? All of his procedures and hospitalization have been done here why can't they do some research?) I had about five minutes before they called me back to the room. I told the RNA I was not finished and she said to just finish it up in the room. The room was about the width of a pantry, but long. they're were no toys. Just a regular examination table and a sink. Very boring! the social worker came in first and chatted about our families well being through all of the events this past year and asked lots of questions about Jonah's medical history (a story that I am so sick of retelling) while she was talking to me another woman came in and was later introduced to me as the nutritionist. The nutritionist was there for the remaining of the apt. She had great knowledge of what would work best for Jonah, how many calories he needed and wrote up a meal plan. The doctor assisted her with this and I feel so much better about the whole thing. The concern is that Jonah is overweight for his height. He is 26in and weighing 19.4 lbs His BMI is 97% this is causing the gross motor delays. He is short due to the long period of time on steroids. Today I learned he is also overweight due to the steroids. The Dr. informed me that the steroids are causing a whopping 80% of the problems...hence, he needs the steroids to breath. I'm tired and worn down by all of this, half the time I can't even register it. We will go back to the not so fun FUN clinic in April to see where we are.
After the Not so fun, FUN Clinic Jonah and I went down the hall to register him for some labs. We went in sat down waiting for his name to be called. A little boy and his mom walked in and sat across from us, we got to talking and she told me her little guy is also 15 months. He was walking and talking, just being a toddler. Once again it was thrown in my face that my baby, my son, my Jonah was not "normal." I can't even explain that feeling. it's like being the last person picked on the team, feeling. It makes my heart just ache. I just want to yell It's not his fault. I know the other mom felt bad for Jonah which almost makes the situation more uncomfortable. Jonah's name was finally called and we left the waiting room.
writing this I have had to take a couple moments just to cry. I have become such an emotional person and quite the "mama bear." I don't mean to make those of you with healthy children feel bad, rather celebrate how lucky you are. I am so grateful for every ones support and love. I do recognize that this is something that Isaac and I are going to have to live with for a while, but it is hard to control mama bear feelings, so please just understand.

He still has his cheeks

Yay! Jonah is 15 months old and today we celebrated by taking him to our favorite doctor. Jonah was scheduled for his 15 month old well child check, since we just saw him last Monday not much had changed. When he was examining Jonah (and I write this laughing) He said "Jonah, your hair is getting a little scraggly. "I went on to protest that in some Hispanic cultures they don't cut the child's hair for years...(just something I've heard) Parzych went on to tease me about Sampson & Delilah. I think only two maybe three people agree with me that Jonah's hair is cute "scraggly." Everyone else thinks we should cut it. (This includes Isaac) So I thought about it and on a crazy streak I asked Isaac to get the "shavers." I CUT HIS HAIR! I'm not sure if I like it, he looks like a big boy now. No more Fohawk. No more scrunching the curls. No more crazy sideburns. Now just a Jonah boy with short hair. But on the bright side, he still has his cheeks!

It's dancy dance time!

Today Morgan started Ballet and Tap Dance. As you can imagine I was more excited then she was. Last night I got a phone call from Miss. Terri (dance teacher) She said she had an opening but Morgan would have to start right away so she could lern the dance routine in time for the recitle. We had been talking about putting her in dance for a while but of course that costs money, and we lack that. So then I had a brilliant idea, Morgan's birthday is coming up and instead of toys & clothes we could have those who were going to do something just help with the monthly dance tuition. So we talked to family and it's a go. The iceing on the cake is that auntie (who has a background in dance) found a great deal on ballet & tap shoes. Yay!!
So I took her at ten this morning and at fisrt she was very hesitant to jump right in. Miss Terri helped her and was showing her the ballet moves and now I can't even get her to lay down for a nap. She loves it! Thank you everyone, this is just the perfect gift for our little mo!