Friday, January 18, 2013

Good and Bad - Day 52 in the NICU

The good thing is that I had success with Social Security. The woman from the Little Rock Social Security office, Freda, tirelessly worked on this. She called the hospital, social worker, doctors, vital records, etc. She got the info and faxed it all to the social security office here.

I went to Social Security here. After the obligatory two hour wait I got to the window. I told the whole story to the woman. She went to the FAX machine and was able to locate the FAX from Freda. Jack's Social Security card request has been processed. The said I should receive it in one to two weeks.

After I got back from Social Security Freda called me back to see how it went. She said she should be able to access the number on Tuesday. She said she would call me and tell me the number even though it will take a bit for the card to come.

I am pretty happy about this and it means I should be able to get Jack on my insurance and then maybe transferred to a hospital closer to home.

Now for the bad part. Jack is no longer considered stable enough to transport. He has had a number of oxygen desaturations and a really bad one today where they had to bag him (ventilate) for awhile. I am hoping he gets to be more stable while I wait for all the insurance issues to play out but that might not happen.

Jack had a chest x-ray today. When I called to ask how it was they just said "hazy." Hazy is bad. Because Jack was on mechanical ventilation for so long and continues to be on oxygen there is a good possibility he has BPD. They have not actually diagnosed him with it but it is looking like he probably does.

Here is some info about BPD:

Bronchopulmonary Dysplasia (BPD)

What is it?

Babies who still need oxygen at 4 weeks before their original due date are considered to have bronchopulmonary dysplasia — one of the most common chronic lung diseases in infants in the United States.

What causes it?

Bronchopulmonary dysplasia occurs in different infants for different reasons. It can happen in full-term as well as premature infants and doctors believe that it's due to an individual infant's response to a number of possible factors.

The combination of the premature baby's immature lungs and the treatments (including machines and oxygen) to help the little one breathe is thought to cause damage (or scarring) to the lungs. Infections and pneumonia can also lead to the condition. Milder levels of damage are called chronic lung disease of prematurity (CLD). As the babies mature, they grow more lung tissue, which can improve their breathing over time.

How is it diagnosed?

The diagnosis of bronchopulmonary dysplasia usually doesn't occur until 2 to 4 weeks into the infant's life. At that point, the doctors make a diagnosis based on whether there was lung damage or an injury at birth and whether the infant has needed extra oxygen for a prolonged period of time. Chest X-rays can also help determine the extent of the lung damage.

How is it treated?

Bronchopulmonary dysplasia is sometimes treated with steroids to decrease the amount of scarring. However, because steroids can cause side effects, doctors usually wait as long as possible to begin steroid treatment. Steroids are never used without a complete discussion with the family about potential benefits and risks.

Other, more commonly used medicines include diuretics (which make the baby urinate, or pee, and help eliminate excess fluid that can build up in the damaged lungs) and bronchodilators (which relax the muscles that surround the airways and allow them to open up).
Babies with the disease also sometimes need ventilators (breathing machines) at home to help them breathe. And although it's uncommon, in severe cases, the surgical insertion of a breathing tube in the neck (called a tracheostomy) may be required so the baby can go home on a ventilator. Occasionally, babies need home oxygen therapy for several months.

How long will my baby be in the NICU?

Bronchopulmonary dysplasia is a serious condition that calls for longer stays in the NICU, sometimes up to several months. The smallest infants are usually the ones who develop the disease, so their stays are longer to make sure they're stable before they're discharged.

Jack has already had steroids and diuretics. He has not done well when they try to reduce his oxygen. But he is breathing on his own. He just forgets sometimes. I am hoping he does better with this soon.

They won't feed him into the stomach because they think his reflux is giving him some of the breathing problems. He is gaining weight.

People ask me all the time if Jack is going to have long term problems. I do not know. No one knows if any child is going to have long term problems. If he does I will deal with it and get him every possible type of help I can. I can retire and stay home with him full time to work with him if he needs that.

When Julianna was born they told me there was a good possibility she would have problems. She did. However, they were all things I could deal with, umbilical hernia, clogged tear ducts, urinary problems, reflux, colic, food aversion, projectile vomiting due to immature pyloric valve, breathing issues, slow gross and fine motor development, slow speech, etc. It was a rough road at times but she seems completely fine now except for being very small for her age.

So, I do not know what is in store for Jack. I do know that we love him and can't wait to get him home.

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