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,