Yesterday we had a busy day of evaluating Jordan! We started at MFB with a weight check. Jordan was down to 14 lbs 4 oz - That's back to where she was a month ago and almost a pound down from where she was 2 weeks ago. Although it is frustrating and somewhat concerning to see her losing weight, we had to take into account the fact that we have completely changed everything about her eating in the past month. She has been weaned from breastfeeding and had to start using formula through a bottle and a Solo cup for her liquids. We have messed with the formula itself - thickening it by using yogurt and pudding - foods she wasn't used to. And introducing an additional "meal" of solids and stopping 2 milk feedings. I guess if someone messed with my "normal" I might not eat as much either! On the good side, she did grow in length a small amount showing that she's getting enough nutrition to grow!
Nurse Jane and Ellen explained that Jordan has been getting enough nutrition to either stay healthy or grow. She chose to stay healthy, which is why she is almost never sick (other than a few colds during the winter and her 2 recent ear infections). If she had chosen to grow, she most likely would have been sick quite frequently over the past year. They were both amazed that she never had bronchitis or pneumonia!
After the weight check, they confirmed that I need to switch her to Pediasure for the additional calories. Good think I stopped at Meijer last night and bought some!
Then we headed over to St. Mary's for the videofluoroscopy. We put Jordan in a little seat and strapped her in. The radiologist took his position next to the machine, and Ellen (our therapist) was ready with all of the different liquids and foods mixed with barium, and the bottles, cups, and bowls. We tried various types of thicknesses in various ways (bottle, cup, spoon) to see how she would react to it. Jordan wasn't on her best behavior but wasn't on her worst either. Ellen was recording everything so that after we were done, she burned a dvd and we headed back to MFB to review the video.
There were several things that the video showed. Jordan had penetration (where the food/liquid starts to go into the lungs but stops before it does and then continues to the stomach), aspiration (where the liquid actually goes past the flap into the lungs), and she also had a hard time managing the food (actually swallowing it all the way down - it would stop 1/2 way down and just sit there). She also had some going up into her nasal passages. Ellen wanted to evaluate the video more and will have a full report for me next week.
In the meantime, I was given some additional instructions for feeding her. I can give her a bottle of nectar thick liquid only if she is very cooperative and doesn't start getting sloppy/sounding gurgley/spitting out the bottle - I have a 5 minute timeframe on the bottle because then she tires and gets sloppy with her swallowing. For meals, I can give her a Solo cup with honey thick liquids unless she starts getting sloppy/sounding gurgley/coughing/gagging. At that point, I have to thicken the liquid to a honey/pudding thickness and feed her by spoon. I also need to thicken the liquidy stage 2 purees to a pudding thickness. She told me to observe her clinically when I am feeding her. Ellen told me that she know this is very labor intensive, but that she wants to make sure Jordan gets as much as possible without tiring or having problems swallowing which can cause serious complications.
Nurse Jane and Ellen together discussed that I need to closely monitor Jordan in the next few days for dehydration and/or bronchitis or upper respiratory issues. Ellen was going to call the pediatrician's office and inform them that if I call with any concerns in the next few days that I am not an over-reactive parent but that my concerns are legitimate since we know that she is not getting a lot of fluids and she is aspirating while drinking/eating. They also decided that they definitely want her to be evaluated by Dr. Burdo-Hartman at the DeVos Children's Hospital.
I was gone from 10-1:45 for this appointment - I was exhausted when I got home!!! I am glad we were able to see what Jordan is doing and I look forward to seeing what Ellen wants to do. She mentioned there are 2 types of feeding tubes that we may need to use to ensure Jordan gets enough nutrition and fluids. I don't necessarily want to have to go to that extent, but I just want to make sure that we do everything we can to ensure Jordan is getting everything her little body needs to stay healthy and grow!!
This information, together with the neurologist's report, I am hoping and praying will be enough to qualify Jordan for our insurance coverage. Although, we will still be following through with the Children's Special Health Care Services.
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