Monday, January 26, 2009

What a day!

These pictures are from when we got home. Maryam had been in the car since 7:30am, having only got out for a quick trip to Target for diapers and then into the doctor's office. We thought it would be good for her, despite the cold, to get outside and run, run, run!!!

Now for the news.... We took Maryam to the appointment at Children's Hospital of Orange County today. We met with a Gastroenterologist Dr. Katz (we thought that was hysterical by the way, I totally use to LOVE that show) and we went over Maryam's medical history. He told us that he thinks she is a good candidate to meet with the feeding team. The feeding team decides whether or not Maryam qualifies for the 3 week inpatient intensive feeding program. Dr. Katz told us that their program has been around for 4 or 5 years and during that time they have only had 28 patients go through the program. IF Maryam is selected, she'll be one of the lucky few. If she is not selected for the feeding program, at the very least she'll have been assessed by professionals who will still be able to help her. They are going to evaluate Maryam as she eats and see what she's doing or not doing that they can help her work on. Once they see that, they should be able to offer up advice and suggestions that can help us better her progress towards eating like a normal toddler. IF she does get selected we would check in on a Monday and stay for 19 days, checking out on a Friday. Dr. Katz said that we have to stay in the first weekend, but on the second weekend we would get a day pass.
Dr. Katz asked what he called "the stupidest question of the day". "Why are you here?" I don't think that is a stupid question at all! I think many families come to him for help and they may all have different reasons. But I think the root of his question stemmed from wanting to make sure that we, as parents, don't have any unrealistic expectations of what this program can do. I answered him as honestly as I could. I told him that my goal is to ensure that Maryam doesn't start pre-school with a Mic-Key button in her stomach and I view the program as a wonderful jump start in that direction. He said that my goal is not unrealistic and he was happy that I viewed the clinic as a jump start as opposed to a cure all.
During the office visit today he prescribed a medication to Maryam that should help her get hungry. Its actually an antihistamine that has a side affect that causes hunger, who knew? He said that this may help induce hunger to the point that she'll want to swallow the food to help get rid of the hunger. Also he said that we should bring her calories back up so she can gain weight. He informed us that IF she gets into the program that she'll probably drop a few pounds right away, so we need to make sure she's a good weight before we start.
Before the next appointment she has to have an upper GI, which we have scheduled for Friday through Kaiser. He said he would just take their report. And she has to have a pulmonary assessment. He wants to make sure that she is healthy respiratory wise so that any weight loss won't affect her breathing. Part of the reason that Maryam is on such a high calorie formula is so that she could grow bigger because the bigger she is, the more mass her lungs have, the more mass her lungs have the scar tissue from her Chronic Lung Disease becomes smaller.
After we met with Dr. Katz we got to meet with Robin the Nurse Practitioner in charge of the feeding clinic and her assistant Valerie. It was a pleasure meeting them both! Its always nice being able to put a face to a voice. Unfortunately Valerie had to tell us that the soonest we can get in for the team meeting will be March or April. BUMMER!
But right before Valerie gave us that news, she brought in a cute little doggy to visit Maryam! It was a 10 year old black and white cockepoo (cocker spaniel and poodle..I think?) that came in and won all of our hearts. The volunteers escorting Tucker gave Maryam a baseball card like picture of Tucker to take home with her. She LOVES dogs, so this was a very special treat for her. Everyone we met at CHOC was amazing. It was a sobering experience to see all the other children there with GI problems.
So, now we wait. We're going to take Dr. Katz' advice and give Maryam the antihistamine as prescribed, go back to doing brushing and joint compressions before every meal and increase her formula back to the 960 mls/day that she was on back in October. We should be hearing from Valerie this week or the next for a specific date for our meeting with the team. In the meantime, Maryam has PT tomorrow, an upper GI on Friday and then OT after that. Another busy week for our little one!

Posted by Picasa

1 comment:

Idyll Musings said...

Weight loss is hard as an adult, I can't imagine what it must be like for Maryam!! I've had such a horrible time this past year with my stomach and eating and I get so hungry, but can't keep foods in. If she can swallow them, have you tried giving her milkshakes with Pediacare in them? She'll get the calories from the milk, ice cream, etc along with the calories from the Pediasare. When Zacky used to get pneumonia as a wee one, this was all I could get him to eat/drink!! And he still lost weight. Keep us posted about the feeding clinic and I will keep you both in my prayers!