Very Lucky Mom

I have had such a quiet day. It's unusual in this house. This morning a friend invited Morgan to a church activity, so it was just Jonah and I since Isaac was at work. We had wonderful bonding time. As Jonah is now "crawling" I have to constantly move his legs into the right "start" position. He tends to go through his legs like as in doing the splits. The Physical therapist has told me over & over that if he keeps doing this he will need a hip replacement (I'm not sure if she is teasing) When he does this his hip bone is rubbing into his hip socket. Anyways, I was working with him & I could see he was tired so I just held him and started rocking him back and forth for some extra stimulation. I have never heard this boy laugh so hard. It was a full on belly laugh! Laughing is contagious and warms the soul.

Morgans dance recital is approaching fast. The dance teacher sent home a copy of the dance music with her voice on it walking the children through the steps. Morgan has to practice at least 15 minutes a day. My little dancer is wanting to practicing for 30-40 minutes a day. She just loves it. I am so proud of her! She has found something she really likes to do. Morgan has also found a new obsession... balloons. Every store we go to she wants a balloon. Any house we go to that there is a balloon, she thinks it's her balloon. Even driving down State street and seeing the balloons at the car lots, she demands that I pull over to get her a balloon. Are you kidding me? Thank goodness for the dollar store!

So Morgan went in for her three year old check up and I heard words that I have not heard in forever, if ever...YOUR CHILD IS HEALTHY, AND LOOKS GREAT! well at least one kidlit is doing good, right?

Jonah's doctor called me Tuesday. He will not be going to NJ. Instead she is sending him to Denver Children's Hospital. I'm kind of bummed but I understand. She needs Jonah to take a specific test that they no longer preform at National Jewish. It is called the Infant pulmonary function test. It is a test that will require Jonah to be mildly sedated. They will then inflate a vest that will apply pressure on his lungs and then the mask that he will be wearing will measure his lung function. It sounds interesting. I have read a little about it online and learned that it will be about 2 hours long. I am sure other tests will be done as well, since he will be there for a bit. The doctor also let me know that he will need to get a CAT scan, and possibly have a lung biopsy. Both of these things will be done here at Primary Children's. I am not sure when, I will keep you posted.

I wanted to thank those of you who are praying for my family. Everyday I see new blessings. How lucky am I to have these two specia littlel spirits know me as their mom? Very Very Very Lucky!

California

We had such a great trip to California! We even ended up staying a day longer then planed. We left early (5 am) on the 9th, and after much feeding tube chaos and Teletubby hell we arrived in Sacramento at 5:oo pm. We were all ready to be out of the car! We had a great visit with Isaac's Grammy, his mom and his sisters family. We then travled a short distence to Manteca to visit with my aunt. It was time to load up and take our travles to the bay area. We first stopped in Santa Cruz to take a coastal drive. It is a drive that I have enjoyed since I got my license... okay since I got a car. We then located my mom who was still working and decided to follow her home, since we had never been to their new place. We had so much fun! The next day I was able to drive to San Jose with my Mom and the kids to see Gramma & Gampa Miller. It was ssuch a nice visit. The kids and I went to the beach, the Monterey Bay aquarium, and to the " Big Ball Park." We had a nice visit with Grandpa Doug and aunty Ashly. They took Morgan birthday shopping at Toys-R-Us. Then we met up with Isaac's aunt Kathy Jo and family at my mom's house. Kathy jo brought cup cakes and we sang happy birthday and celebrated Morgan and cousin Robin's birthdays. Then we went to the beach again to let the kids run around. Jonah hung out with me and ate sand...he did. I didn't. my mom had cooked a wonderful dinner and I had invited two of my best childhood friends and their families over. This was the highlight of my vacation. My sisters were there, my aunt Lisa my mom and step dad my friends, and my beautiful family. It is at these moments in my life that I am thankful for all of the blessings given to me. The blessings will always out weigh the grief! This is what I needed to be reminded of. It was the reason why I needed to go "home." Now that I am back in my real home I am ready... So bring on the rain!

Potty Talk

So I made the decision to use "regular" paper diapers for our trip to California. I was not sure how well the cloth would hold up while sitting in the same position for hours at a time. It might be kind of gross to be logging around dirty diapers for that fun 14 hour drive. I was also uncertain if it would bother Grammy or my mom & step dad to be washing poopy diapers in their washing machine so yes I broke down and bought a butt load (ha ha.. get it?) of paper diapers for the trip. My good friend Becky has recently converted to this amazing world of cloth diapering for her son, and said when she tried to use paper diapers for a medical reason he broke out in diaper rash. Guess what Jonah's hide is raw. While in California I was tempted to soak his rump in the ocean to see if it would dry it up, maybe I should have. The poor guy is now giving me pouty lips. He sure L-O-V-E-S his cloth diapers!...and baby powder.

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.