:( sad and in need of advice

NCgirl · Dec 2, 2003

I know nothing about NICU/peds, but just wanted to say that Jacob, you, and your entire family will remain in my thoughts and prayers!

nurse62 · Dec 2, 2003

My neice has RSV, diagnosed 11/27/03. She is 11 months old. I pray for your Jacob as well.

Sharon · Dec 2, 2003

Bronchiolitis obliterans is a rare manifestation of an autoimmune disorder in which the body attacks the tissue in the bronchioles. When the body, especially in an immature immune system, activates the immune system to fight off massive infection the body can misdirect its attack against a massive infection to body structures. Another example of this is our great concern for treating Strep Throat. It is not the Strep throat we are concerned about it is the high rate of inappropriate immune system response targeting heart, renal and joint tissue in the presence of this infection.

The most recent outbreak of Bronchiolitis obliterans has been due to the chemicals in butter flavored microwave popcorn. We have limited use of this snack item in our workplace to rooms with direct ventilation to the outside without re-circulating air though out the department.

Prognosis depends on if and what other organs are involved in the autoimmune response. Pulmonary vasculartitis with accompanying pulmonary hypertension significantly limits the life span. Overall mortality for bronchiolitis obliterans is 10 to 15%. Once the child, especially a newborn, is recovered enough a through Immune system evaluation will need to take place to determine if there is an underlying immune system disorder such as severe combine immunodeficiency. During the past ten years there has been dramatic advances in thie field of immune system dysfunction. Improved diagnostics and the recognition of adults who are affected by this class of disease are just two types of the advances in this field. The diagnosis of an immune system disorder in a newborn is not viewed as the death sentence it once was.

I have cared for college students who have had the disorder from early childhood and were still surviving and thriving in college settings

The Primary Immune Deficiency Foundation has had parent support groups the web link is http://www.primaryimmune.org/pid/whatis_pid.htm. Another good resource is the National Organizations for Rare and Orphan Diseases http://www.nord-rdb.com .

purplemania, BSN, RN · Dec 2, 2003

so sorry. what a huge worry for such a little guy. My experience with pedi ICU was that we offered mostly symptomatic support. Steroids are offered sometimes. There is no viracide that I am aware of that works like antibiotics do with bacteria. Have you looked at About.com/pediatrics? Bronchopulmonary dysplasia is often seen in preemies with "lung problems", but these kids do so much better when they are old enough to sit up on their own. My prayers are with you.

Sharon · Dec 2, 2003

Shelley,

I realized after I posted that you are in the UK. The International Patient Organization for Patients with Primary Immunodeficiencies is very active in the UK. Their web site is http://www.ipopi.org/index.php?page=http%3A//www.ipopi.org/publications/living_with_pid/

FranEMTnurse, CNA, LPN, EMT-I · Dec 3, 2003

Sharon,

God bless you for finding that info for Shelly. I'm sure she's very grateful.

Shelly,

Sharon has come through for you very well. I also have a link you might want to check out. It's http://www.COPD-international.com.

Because I have Chronic asthmatic bronchitis, I'm a member of that group, and can attest to their validity.

There are a lot of caring and knowledgable individuals there. They even have a chat room and many references to cardiopulmonary disease located in their library.

In addition to all of that, they also send you all current information on respiratory drugs, including the ones that are recalled.

I wish you and baby Jacob.

A big (((((((((((HUG))))))))for you sweetie. You can use all you can get right now.

Fran.

jacobsmum · Dec 3, 2003

Thanks so much for your help. I really appreciate it.

Jolie, BSN · Dec 3, 2003

Just wanted to add my best wishes and prayers. I'll be watching for an update.

crankyasanoldma · Dec 9, 2003

I see Jacobs' mom on another site sometimes. Jacob, while still seriously ill, is looking like he'll pull through afterall. She said they are looking at a trach and a long hospital recovery. Keep up your well wishes for Jacob and his mom!

jnette, ASN, EMT-I · Dec 9, 2003

Originally posted by crankyasanoldma
I see Jacobs' mom on another site sometimes. Jacob, while still seriously ill, is looking like he'll pull through afterall. She said they are looking at a trach and a long hospital recovery. Keep up your well wishes for Jacob and his mom!

Keeping the candle burning for young Jacob... dear Mum. :kiss

Please keep us posted. Our hearts are with you.

Tweety, BSN, RN · Dec 9, 2003

What jnette said.

Burnt Out, ASN, RN · Dec 10, 2003

You and your Jacob are in my thoughts....praying he makes a full recovery