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Author Topic: Medical testing-o-rama  (Read 1003 times) Average Rating: 0
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Quinault
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What about frogs? I like frogs!


« on: August 02, 2013, 12:01:01 AM »

Our son Taz has a myriad of health issues. He has some follow-up testing tomorrow to try and get more answers. The hope is that he has grown out of a couple of those health issues that require prescriptions. We will be going to the local Children's hospital as a family for a good chunk of tomorrow. I can't take our 2 month old (or any of the other children) into the room during the swallow study. But I need to be there to speak to the nutritionist and pulmonologist. We have no clue how long we will be there, so babysitting isn't an option for the eldest 4 children. The last time we went for a 1 hour appointment, I ended up being there for 4+ hours. And quite obviously the breast-fed 2 month old needs to stay with mama. Grin Fortunately the hospital has a supervised sibling playroom for children between 3-12 years of age. So they shouldn't be too bored out of their minds while we are there.

Prayers that we can find answers would be appreciated. I hold little to no hope that he has grown out of all his issues. It would take nothing short of a miracle for that to occur. And while I believe miracles can occur, I don't expect them. I just hope and pray that we can construct a treatment plan that can grow with him and allow him to develop outside of his conditions as normally as possible. A 18 month old incapable of having unthickened fluids, drinking out of a bottle is sort of pitiful Undecided
« Last Edit: August 02, 2013, 12:03:43 AM by Quinault » Logged
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« Reply #1 on: August 02, 2013, 12:04:00 AM »

Will be praying!

Lord have mercy
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« Reply #2 on: August 02, 2013, 12:07:18 AM »

Lord have mercy.
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« Reply #3 on: August 02, 2013, 02:47:55 PM »

Lord, have mercy.
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« Reply #4 on: August 02, 2013, 02:58:29 PM »

Prayers for you and your family.  Lord have mercy.
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« Reply #5 on: August 02, 2013, 03:07:14 PM »


Lord, have mercy!
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« Reply #6 on: August 02, 2013, 03:18:49 PM »

Lord have mercy!
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« Reply #7 on: August 02, 2013, 03:28:21 PM »

Lord have mercy!
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« Reply #8 on: August 02, 2013, 05:32:59 PM »

Lord have mercy!
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Quinault
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« Reply #9 on: August 02, 2013, 08:21:37 PM »

Good news:
Taz has gained a significant amount of weight, and his breathing is much better than it was. The pulmonologist and nutritionist were practically giddy with his progress in those areas.

Bad news:
Taz's aspiration issues are *worse* not better. The SLP is suggesting that we switch him from nectar to honey thickness for his fluids. He is silently aspirating the unthickened fluids, and he is having "deep penetration" without full aspiration with nectar thick fluids. Before he was OK until he tired, now he is having issues from the start of feedings. We need to thicken his soups etc to pudding like consistency.

Good news:
Taz has no problems with solid foods whatsoever. The SLP believes this could be an anatomical issue.

Bad-Good news:
If this is an anatomical issue, Taz could require surgery to fix it. The video we took of one of his breathing episodes was very helpful in pointing us in the direction of an anatomical problem

Future plans:
Referral to ENT, likely scope under general anesthesia, then possibly surgery. We will keep up the flovent/albuterol protocol.

Thanks for your prayers.
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« Reply #10 on: August 03, 2013, 09:50:02 PM »

Lord have mercy on Taz and Quinault and the family.
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« Reply #11 on: August 03, 2013, 10:02:10 PM »

Lord, have mercy.
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« Reply #12 on: August 03, 2013, 11:26:47 PM »

Lord, have mercy!
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« Reply #13 on: August 03, 2013, 11:50:17 PM »

Throught the intercessions of Cosmas & Damian, LORD have mercy!
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« Reply #14 on: August 04, 2013, 08:22:31 PM »

Through the prayers of our holy fathers, O' Lord Jesus Christ our God, have mercy on us and save us. Amen
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Quinault
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« Reply #15 on: August 08, 2013, 10:03:01 PM »

He has an ENT visit scheduled for Monday. They said they would do a quick look with the scope. I suspect they won't see anything too obvious since the last time he had a quick scope they saw nothing. My husband can't come with me this time. So I will have to take all the kids with me. That will be...interesting to say the least if the sibling playroom doesn't have room for all 4 of the older kids.
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« Reply #16 on: August 09, 2013, 07:38:16 AM »

Lord have mercy.
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Quinault
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« Reply #17 on: August 12, 2013, 08:23:31 PM »

The ENT appointment went extremely well today. The ENT was simply awesome. He did a quick scope down Tazzy's nose and saw nothing obviously concerning. I was given the option to just keep waiting it out, or have a scope done under general. I opted for the scope under general. His aspiration has worsened since February, which means he needs honey thick instead of nectar. He agreed with the SLP and us that going thicker is better for him.

So right this moment Taz will go in overnight for a scope in October. The ENT doesn't believe it is likely that there is any sort of neurological or pathological issue that is causing the dysphagia. It is possible it was a result of the intubation, it is possible that part of his anatomy has a "notch" in it that causes him to be unable to protect his airway when he is drinking. If it is the "notch" they can fill it with something sort of akin to collagen. A week after the procedure, he has a repeat swallow study. The ENT was very surprised that he looked as good as he does considering the extent of his dysphagia. To be quite honest that sort of made me feel good. He said he is absolutely fascinated to find out what is going on. He is confidant that even if there is nothing fixable, that it might self correct given time. How much time? They have no idea. But 90% of the cases he has seen that are uncorrectable surgically self correct eventually.

Thank you everyone for your prayers. The last 18 months or so have been a real roller coaster. We just have to keep him VERY healthy between now and then so that the procedure doesn't end up being delayed due to illness.
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Quinault
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« Reply #18 on: January 13, 2014, 04:15:48 AM »

Taz had an exploratory procedure under general anesthesia last Wednesday (the one in October was cancelled due to a horrific celiac reaction that landed him in the ER and on IV fluids). The ENT found a notch in his vocal cords and applied a filler in it. If the filler works (which only happens 40% of the time) there is a permanent fix that can be done. If it doesn't work, then we have to wait and hope that his body will adapt so he can drink fluids safely.

Thank you for your prayers. This procedure was a big hurdle to overcome.
« Last Edit: January 13, 2014, 04:17:31 AM by Quinault » Logged
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« Reply #19 on: January 13, 2014, 08:23:51 AM »

Lord, have mercy.
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« Reply #20 on: January 13, 2014, 08:01:26 PM »

Lord, have mercy on Taz.
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« Reply #21 on: January 13, 2014, 08:29:21 PM »

Lord have mercy.

St. Pantaleimon, pray for us.
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« Reply #22 on: January 13, 2014, 08:38:12 PM »

Lord have mercy.
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« Reply #23 on: January 13, 2014, 09:33:27 PM »

Lord have mercy!
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« Reply #24 on: January 14, 2014, 11:25:43 AM »

Lord have mercy.
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« Reply #25 on: January 14, 2014, 11:34:57 AM »

Lord, have mercy.
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« Reply #26 on: January 14, 2014, 11:21:22 PM »

O' God, be merciful to me, a sinner.
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« Reply #27 on: January 16, 2014, 12:10:34 PM »

Lord have mercy on Taz and his loving family! Amen.
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