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'...
Thursday, September 12, 2013
Thursday, September 5, 2013
09.05.13
Is it really September already!?
Once again, I've fallen behind on the updates, so here goes with a brief version of the last 2+ months...
Hannah is proving to be the teacher of all things 'patience'. She really has had a rough couple of months, beginning with a diagnosis of (and completely unrelated to her genetic conditions) cyclic vomiting syndrome. After about half of the summer in the hospital, doctors labeled Hannah's sleeping/retching/overall miserableness on cyclic vomiting- which basically meant that there was nothing we could do about it. When I asked about ways to treat this, the answer was to try an allergy med that is often used in conjunction with treating migraines (as cyclic vomiting is a migraine variant). When I asked about a timeline for the length of time we might be dealing with this, the answer was, 'Well it could last two years, it could last seven years.' Because of the risk of Hannah increasing the damage to her lung with vomiting, we decided to switch to a gj-tube. This tube allows us to completely bypass Hannah's belly and feed directly into her intestine.
At first, we thought, 'Ok. We can deal with this.' Initially, Hannah was down-cycling on schedule every 2- 2.5 weeks until July when everything got messy. Since then, we've not had much 'cycle' as to when Hannah will be good or bad, or a sign that bad is coming. And that means more tests.
Last week, Hannah and I made a day trip to Mayo for an MRI. The team did not want to wait for our routine follow-ups to rule out brain swelling or fluid build up that could have caused the most recent problems. Good news. They didn't find anything of the sort.
We continue to try different things, changing feeding times, using the j-tube side, a different allergy med, and most of all- lots of good prayers from our support system. This coming week we head back to Mayo for more tests and -hopefully- an answer or two.
For me, Hannah not feeling well has been the most trying piece we've dealt with. But, it just goes to show, that the Man upstairs is listening. Each time I have a down day, God steps in by using those around me to say 'Just hang in there.' I am continually blessed with a note from an old teacher reminding me to look for God's small miracles, by a card from a prayer group that reads, 'We know what you are going through,' and by the song on the radio that says I don't have to take this journey alone. I should not be surprised by this reassurance, but I am always in awe of His presence when I seem to need it most.
One last thing. A few weeks ago, my Grandpa passed away. This man was amazing. I wish that words could explain the love he had for his grandchildren and great-grandchildren. When I reflect on memories, I keep circling back to a picture of grandpa holding Hannah and crying over her. If you wonder what selfless love looks like, you need only to think of that image.
Once again, I've fallen behind on the updates, so here goes with a brief version of the last 2+ months...
Hannah is proving to be the teacher of all things 'patience'. She really has had a rough couple of months, beginning with a diagnosis of (and completely unrelated to her genetic conditions) cyclic vomiting syndrome. After about half of the summer in the hospital, doctors labeled Hannah's sleeping/retching/overall miserableness on cyclic vomiting- which basically meant that there was nothing we could do about it. When I asked about ways to treat this, the answer was to try an allergy med that is often used in conjunction with treating migraines (as cyclic vomiting is a migraine variant). When I asked about a timeline for the length of time we might be dealing with this, the answer was, 'Well it could last two years, it could last seven years.' Because of the risk of Hannah increasing the damage to her lung with vomiting, we decided to switch to a gj-tube. This tube allows us to completely bypass Hannah's belly and feed directly into her intestine.
At first, we thought, 'Ok. We can deal with this.' Initially, Hannah was down-cycling on schedule every 2- 2.5 weeks until July when everything got messy. Since then, we've not had much 'cycle' as to when Hannah will be good or bad, or a sign that bad is coming. And that means more tests.
Last week, Hannah and I made a day trip to Mayo for an MRI. The team did not want to wait for our routine follow-ups to rule out brain swelling or fluid build up that could have caused the most recent problems. Good news. They didn't find anything of the sort.
We continue to try different things, changing feeding times, using the j-tube side, a different allergy med, and most of all- lots of good prayers from our support system. This coming week we head back to Mayo for more tests and -hopefully- an answer or two.
For me, Hannah not feeling well has been the most trying piece we've dealt with. But, it just goes to show, that the Man upstairs is listening. Each time I have a down day, God steps in by using those around me to say 'Just hang in there.' I am continually blessed with a note from an old teacher reminding me to look for God's small miracles, by a card from a prayer group that reads, 'We know what you are going through,' and by the song on the radio that says I don't have to take this journey alone. I should not be surprised by this reassurance, but I am always in awe of His presence when I seem to need it most.
One last thing. A few weeks ago, my Grandpa passed away. This man was amazing. I wish that words could explain the love he had for his grandchildren and great-grandchildren. When I reflect on memories, I keep circling back to a picture of grandpa holding Hannah and crying over her. If you wonder what selfless love looks like, you need only to think of that image.
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