swollen airways

February 6, 2004

Hi,

A couple of other people mentioned recently that their babies had

trouble with swollen airways early on that made breathing more

difficult.

is having a lot of trouble with this. She was doing much

better last week. She had stents put in. We put her on maximum

Zantac and Reglan, and an OJ tube to help with reflux. She was in a

humidity tent. She was getting inhaled steroids. The nurses had

orders to try to resist suctioning her unless she her O2 saturation

was bad (which it hardly ever is). She seemed to be getting

better. Her breathing was getting easier and respiration rate was

down. She was even finding her voice so it seemed the swelling was

going down.

On Sunday she started getting worse. We think maybe she caught a

cold and the additional secretions with a constricted airway were

just too much for her. Her respiratory rate varied between 90 and

120 and it sounded like she was trying to breath through molasis.

It was aweful. She was approaching utter exhaustion yesterday and

they had to put her on a respirator. She is doing much better

today. She is so much more comfortable and calm. I never thought

I'd be relieved to see my child intubated.

Anyway, I was wondering if any of you had success with getting the

swelling to go down and what it was you think did the trick (other

than a trach which of course we like to only use as a last resort).

Thanks,

Rochel

February 6, 2004

Hi Rochel,

I'm sorry to hear that has been having more difficulty requiring

the respirator, however, I am glad to hear she is doing better with it.

Thank goodness the equipment is available when we need it.

Our daughter is one of the children who had trouble with swollen

airways. Unfortunately in her case, a trach was necessary. However,

what we learned later may have been able to help prevent the necessary

trach. After two years of the trach, still with no answers of why she

needed it, we took Kendra out of state for a second opinion. The

doctor, a pediatric cardiologist, even knew on the phone before we

brought her there that there was a high likelihood that there was an

anomalous subclavian artery or a double aortic arch. Although it was

very difficult to find, it turned out she had a double aortic arch.

The echo did not help the doctors to diagnose the condition. A barium

swallow or a bronchoscopy helped in visualizing the condition. What

allowed for the diagnosis was an angiogram. The doctors could see the

area that was constricted on the tapes.

For our daughter, the double aortic arch caused significant narrowing in

the trachea and in the esophagus. The double part of the aorta wrapped

around those two structures causing the narrowing. Follwoing the

surgery to repair the double aortic arch, Kendra was put on a protocol

to wean her from the trach. I have always wondered what might have

happened if the double aortic arch had been identified originally and if

she may have been able to avoid the trach. In her case, without that

information, a trach was necessary and saved her life.

The double aortic arch may not be the case for , but since it

happened to us, I imagine it could happen to another charger. I haven't

heard of a lot of other children who had this condition, other than

Kendra. But there are a few others on the list whose child has a double

aortic arch.

I also have done a lot of reading recently about the immune system and

am amazed that such things as sleeping in a completely dark room can

have a positive influence on T cells. This is fascinating to me and

since it is non-invasive and inexpensive, it encourages me that the

information will lead to better health for some.

Best wishes with your daughter,

swollen airways

Hi,

A couple of other people mentioned recently that their babies had

trouble with swollen airways early on that made breathing more

difficult.

is having a lot of trouble with this. She was doing much

better last week. She had stents put in. We put her on maximum

Zantac and Reglan, and an OJ tube to help with reflux. She was in a

humidity tent. She was getting inhaled steroids. The nurses had

orders to try to resist suctioning her unless she her O2 saturation

was bad (which it hardly ever is). She seemed to be getting

better. Her breathing was getting easier and respiration rate was

down. She was even finding her voice so it seemed the swelling was

going down.

On Sunday she started getting worse. We think maybe she caught a

cold and the additional secretions with a constricted airway were

just too much for her. Her respiratory rate varied between 90 and

120 and it sounded like she was trying to breath through molasis.

It was aweful. She was approaching utter exhaustion yesterday and

they had to put her on a respirator. She is doing much better

today. She is so much more comfortable and calm. I never thought

I'd be relieved to see my child intubated.

Anyway, I was wondering if any of you had success with getting the

swelling to go down and what it was you think did the trick (other

than a trach which of course we like to only use as a last resort).

Thanks,

Rochel

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February 6, 2004

> The double aortic arch may not be the case for ,

Mmm, interesting. had a coarchtation of the aorta that was

repaired 7 weeks ago. I wonder if the surgeons would have noticed

if there was a double arch. Maybe I should contact them and ask if

that part of the anatomy was exposed during the surgery. She hasn't

had an angiogram. We were planning on giving her a gastric tube as

soon as she regains her strength. The surgeons don't want to do a

fundoplication unless her esophagus is normal so I think they were

planning on doing a baruim swallow today or early next week. The

ENT took a good look at her trachea under anesthesia before they

intubated her specifically because he wanted to see if there was

some other problem other than swelling, but he didn't notice

anything. But I can imagine something like that could be missed.

Thank you SO MUCH for the information. I will be forwarding this to

the nurse practitioner.

Rochel

February 7, 2004

Rochel,

Please do keep us posted on the results of any tests. I will be hoping

for good answers soon that help .

I do not know if Kendra and have the same or similar conditions,

but it never hurts to consider what may be possible explanations, in my

opinion. Especially when the condition is causing many difficult

problems. I do not know if having the coarchtation of the aorta

precludes also having a double aortic arch, or not, and I do not recall

anyone, so far, mentioning on this list that they had both of these

conditions. However, in my mind, almost anything is possible. A double

aortic arch is different from a coarchtation of the aorta in that it is

actually an extraneous portion of the aorta. Gestationally, several

major arteries come together to form the aorta. In Kendra's case, the

'coming together' process was incomplete leaving a 'double' or extra

section (one of the several arteries that should have combined into the

aorta) of the aorta. Just as many body parts did not completely close,

like colobomas or TE fistulas, or cleft palates, the aorta did not

complete its development. It is my understanding, and I may be wrong

about this, that the coarchtation is more of a narrowing in the aorta.

Your descriptions over the last weeks, have sounded, to some degree,

similar to what Kendra experienced. Perhaps it is for similar reasons,

but it also could be for different reasons.

Best wishes in finding answers soon.

Re: swollen airways