I realize I promised last week that we would post more pictures and then never got around to it.... I am very very sorry for letting people down.
Now on to the good stuff:
This morning Brent, Deborah and I made the trek up to Children's hospital for two appointments. I bravely scheduled them 1/2 hour apart from one another (I know not my most brilliant move, but it worked). We met with surgery and the radiology. Let me summarize both appointments.
Surgery: The visit was scheduled as a 3 month follow up to the G-Tube/Nissen surgery to make sure the surgical site was clean and to discuss any challenges we may be having with the new set up. We covered that topic in about 30 seconds and moved on to MY real reason for being at the appointment. Two weeks ago I was in New Orleans for a work conference and while there Brent's parents so graciously offered to help out by coming and taking care of Madeleine so Brent wouldn't be up to his eyeballs in my absence. Of course I obsessively called every 2 hours or so and kept hearing them tell me that her colostomy bag was falling off. I figured it was just that the weren't doing it right ( no offense Kay & Rick) and that once the old pro got back we would get back on track.... Ohhh no. I was wrong. It seems that while I was gone Miss Madeleine decided to start rolling and doing commando moves all over our living room. As you can imagine this is not conducive to keeping a colostomy bag on for any length of time. As a result since the 31st of July we have changed the colostomy bag every single day. To give you some context, under normal circumstances this should only need to be changed every 5 days. To keep it clean- we have had some MONUMENTAL blow outs (think head to toe) since Madeleine has become more active.
So, back to today. Over the past week I have met with or spoken to every one of her specialists to discuss the idea of doing the reattachment surgery ASAP before the Flu/RSV season hits in late October. We had initially thought that we would reconnect in the early spring however the prospect of changing bags every day from now until April was daunting, to say the least.
After staying up much of the night worried about how the conversation would go and how we would have to plead our case on how awful it is to change that stupid bag every day the doctor walked in and said "So I hear you want to do the reconnection soon, great! I'll put you on the schedule in the next few weeks" It seriously could not have been any easier. Actually, I felt cheated out of a good health medical debate, if you must know the truth. We are waiting for the scheduling team to call to put us on the calendar. I know it WON'T be the first two weeks of September b/c her Cardiologist will be on vacation and doesn't want her in the hospital while he is gone. If we could do it tomorrow, I would.
Radiology: We went down to the fluro lab where Madeleine is nearly a rock star from back in the days of her constantly pulling out the NJ tube (this is where we would go to get it put back in). Today we were there for a Modified Barium Swallow (MBS), otherwise known as a Swallow study. Over the past few months we have been introducing food so that we could get her to learn to like having food in her mouth again. We started by playing with it and then slowly we started giving it to her in very small quantities. Last August, when many of the really big problems began, we determined that Madeleine was not able to protect her airway and this lack of protection is why she would get aspiration pneumonia's on a biweekly basis. The Nissen surgery helped us make great strides with the reflux and once she recovered from the surgery the next step was to do the MBS to determine if she was now able to protect her airway. If we could prove that she was able to eat properly we could start advancing mouth feeding. Easy enough, right? Wrong. You can't just expect a child who has not had anything in their mouth for almost exactly a year to say mmmm peaches or yummy pears. So after slowly introducing food and spitting 90% of it out for the past month we determined earlier this week that she was swallowing some of it! Thank god, b/c the appointment was set and I didn't want to reschedule because she wasn't ready.
Today we went in, strapped her in to the chair and gave her barium while they did continuous x-rays to determine whether or not food was going down the right way and she was able to protect her airway. As you can imagine she wasn't a real big fan of the chalky baby food we presented her with, but after prying her jaws open we were able to get some in her mouth and she swallowed it perfectly!!! We moved on to 'thin liquids' aka juice, and she did very well with that as well. Overall, we got an A+. We were given the directive to continue to 'advance feeds' and meet with our GI doc next week to determine our future course of action. I think it is safe to say it will be a very long time until Madeleine gets the majority of her nutrition via her mouth, but the fact that she can have food in her mouth is monumental.
All in all, a fantastic day at the hospital.
As for the rest of the summer we have had quite the whirlwind including a family vacation to the Outer Banks, a get away for Brent and I to New Orleans, a visit from old friends and coming up soon a trip to visit the Michigan clan. Madeleine is on a much more normal schedule with longer naps and an earlier bed time and she plays very hard during the day. She is off the vent 8 hours a day (two 4 hr periods) and we are working towards only being on the vent when she is sleeping.
I cannot say enough how much fun we are having and how the little things remind us of how far we have come. Here are just a few tid bits:
- Madeleine is incredibly tickleish. She laughs with her whole body when you tickle her.
- Diaper changes can be likened to a WWE event
- When we go to the doctor her medicines all fit on one page (this was a victory in my book!)
- She gives hi-five
- She loves blowing bubbles with me
After writing this I need to once again thank Brent for the hundreds of posts over the last 18 months. It is a lot of work that I often took for granted.
Take care, hope to see you soon. Check out a few *hundred* more pictures on our picassa site.
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