About Me

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Wife to Sean, police officer and carpenter. Mom to Maeve, 5 year old fashionista who happens to have an extra chromosome. And 1 year old Michael, future Steeler and ladies man. This is my attempt to share the behind the scenes of a real housewife who idolizes Martha Stewart, follows in the family footsteps in the art of sewing, navigates the world of special needs and tries to keep her head above water.

Thursday, January 14, 2010

Frequent Flyers

One evening at our meeting for the Family Forum at Children's Hospital of Pittsburgh, one of 2 board positions I hold, the suggestion was jokingly made that we should distribute frequent flyer miles. Everyone laughed, but I know that all the parents on the board where secretly thinking, as was I, "Hmmmm, wonder what we could get with those miles?"

If you are a parent, you no doubt have made frequent visits to your childs pediatrician and have probably made one trip to the Emergeny Room. But if your child has special health concerns, the number of visits to doctors might be triple that of a "well" child. There are months on my calendar that hold one, sometimes two appointments a week - I have appointment cards paperclipped to future months as a reminders of all our upcoming appointments.

And because we live in Pittsburgh, we are lucky enough to be in the shadow of one of the top pediatric hospitals in the country, Children's Hopsital of Pittsburgh (CHP). And we really are in the shadow of the new hospital - we can see the buildings from our front porch. Almost all of Maeve's doctors are exclusive to CHP and we see them all on the main campus.

Hence, we are "Frequent Flyers" - hospital staff know Maeve by name and remember when she was a newborn. Boy, the milage we have after only 3 years.

So, yesterday, Maeve had her surgery day.

And her lungs were clear, so everything was a go. She was only in the OR for about an hour from start to finish. We were at the hospital at 8:00AM. They didn't take her back until almost 11:00AM. We saw the surgeon a little before noon and they got good samples for the biopsies and they repaired her incision. Sean left to go to work. They didn't take me back to recovery until almost 1:00PM. Maeve was not happy and was holding her tummy and whimpering - her incision repair was hurting. So they gave her some happy drugs and she fell back asleep. Around 2:00PM we moved to the step down and as soon as Maeve drank some juice we could go home.

Well, she drank some juice and then projected it across the room. Very unladylike if you ask me. So she fell back asleep and then we tried again with the juice. Same response. So around 5:30PM we finally got her something for the nausea and Maeve fell back asleep. When she woke up I convinced them to let her have some Pepsi, not technically a clear liquid, but she likes it. And see drank it. Yipee!

Finally, around 7:30PM we were allowed to go home. 12 hours in the hospital. Not my idea of fun. But we survived another trip. Only to prepare for another one... sigh...

This morning Maeve had a CT scan of her sinuses and then a consult with our ENT. She had her first sinus infection a little after her first birthday and they have been getting more and more numerous and harder to treat. It seemed that this year she had one a month, and as soon as she ended her antibiotics it would start all over again. This summer she was sick off and on from July to September and then she has been sick continualy since the first of November. She only had 5 days she wasn't on anitbiotics.

So, back to the CT scan. First of all, they are really cool. Tissues are grey, bone white and air is black. It was like putting your head through a bread slicer, Dr's words not mine, and seeing each "slice."

First we see the tip of Maeve's nose and then her mouth, the 2 missing teeth that are coming in way back behind the others (that's a whole other story), her eye sockets... and then her sinus cavitities.

As an adult you have four sets of sinus cavities. Young children only have 2 that are developed, the ethmoid and the maxillary sinuses. Your sinus cavities are filled with air and when you get a cold or infection, the tissues swell and you feel pressure in your face and nose, you become congested, your eyes water and boogers gather for a party (my words not the doctors).

So, in a disease free sinus CT scan, those cavities should have presented as black areas. Maeve's left sinuses were completely grey and she isn't even showing signs of infection currently. There was no air anywhere in either left cavity. The right side wasn't as bad. Her ethmoid sinus was only partially obstructed and her maxillary sinus had one little pocket of air in the middle. For someone so young, there was a lot of sinus disease.

Our options aren't great. We can keep doing antibiotics, but that isn't a long term solution and can lead to other problems. We've tried saline washes - if you ever want a fun night, borrow a toddler and squirt salt water up their nose. We have a script for steroids, Nasonex, but even that will only reduce the swelling so much. We might have to squirt an entire bottle up there to see any results. The Dr suggested a script for 4 months in Flordia every winter, but was pretty sure insurance wasn't going to cover that. Darn. And we have endoscopic surgery.

Part of the problem is blamed on Down syndrome. Our kids are known to have tiny insides - Maeve has the tiny ear cannals and tiny tear ducts. And we now know where her tear duct problems are coming from. We knew the structures that open and close between the sinus cavities, turbinates, were occluding her tear ducts because they are normal size and her tear ducts are tiny. And with all this swelling, it's any wonder she was constantly tearing up. Now we can blame her tears on the chronic sinus infections.

So, we are going with the surgery, even though I have a lot of reservations about it - mainly because of the anesthesia. The anesthesiologist made a comment about going under "too much", although we - the staff at CHP - want to give Maeve all the advantages possible so that she isn't having to deal with illness and delays. I don't want my child to have any surgeries, but what can I do? I want her healthy, I need to know some answers to some of her health mysteries. And until they invent a way to do tests non-invasively, she has to go under for some of them.

I'm thinking that this next trip might get me enough milage for a flight somewhere warm... a frequent flyer can always wish right?

PS: I completed W2D2 of C25K this morning - got to look good for that trip to the beach : )

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