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Thursday, September 12, 2013

09.12.13

Our Mayo update:

Glad to say that we are back home and only have one appointment left for this recent round of tests- a hearing test. We opted to have this done at Grant Wood to take advantage of their free hearing screens. 

Preface: Over the last week, I have (sort of) successfully switched Hannah to a blenderized diet. She still has to have a bit of formula overnight to make up for calorie needs, but as I am getting a better handle on making our own blenderized food and increasing calories without increasing volume, we aren't too far off goal. Yes, it takes a lot more time than mixing formula, but is so worth it. Hannah has not down-cycled for a week now. That is huge progress. She is more happy, she's laughing, more active and she started with 'ba' and 'da' noises! We are thrilled, and very thankful to have this happy girl back.
As for Mayo test results...

Blood tests for the metabolic panel will not be back for a few days/weeks. These would show if a metabolic problem could be to blame for this down-cyclic business (I'm hoping not as there may not be a 'fix' for a deeper metabolic issue).

The GI team seems relatively happy with the blenderized diet results so far. They have a very relaxed approach to what I feed her so long as she continues to gain weight. 

ENT, pulmonology and the sleep team have joined forces as of late to help with Hannah's lung issues. The results of her sedation this week showed that there is still lung damage happening. Weak muscles in the throat and airways can still be seen. The results of her sleep study showed that she is having apneas that are 4-6 seconds long. ENT still believes that Hannah's swallow is safe and the swelling and aspiration in Hannah's airways is not coming from swallowing. All together, that means that the most likely scenario is that while Hannah is sleeping, saliva pools in the back of her throat where muscles are weak. She will have an apnea for about 5 seconds, and then take a deep breath in, sucking all of the pooled saliva right down into her airways and lungs. There isn't really a good fix for this, but the damage will only continue to get worse if we don't do something. Options on the table include botox injections to the salivary glands, a CPAP machine, various medicines and lastly, a tracheostomy. Obviously, it will take a lot of convincing for me to agree to the last one. 

Finally, the hearing screening today will be a good indicator of whether or not the fluid in Hannah's ears is causing problems, or just draining very slowly and is nothing to worry about.

Between this new diet and needing to make a few decisions for lung treatments, we've got a bit on our hands, but it sure seems more do-able with this happy girl we've gotten back. She is such a little blessing! Now, to get her to say 'ma, ma, ma'...

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