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Tuesday, September 29, 2009

Update From Cincinnati #3

Today was a long day...not sure how much detail I can provide before heading to bed, but we'll give it a shot.

We arrived at hospital at 9:15AM. First up was a cat scan on Josiah's chest. We had told him he wouldn't have to get anesthesia (he calls it "anastasia") since he didn't have to on his last cat scan; however, once we arrived we were informed he would have to have it since they needed to carefully control his breathing during the procedure. Even though this doesn't hurt at all, as it was a change to what he was expecting it was a bit upsetting to Josiah. I do have to say that Shelly and I were able to be with him when they put him to sleep, and we both thought it was pretty funny how quickly it happened. The cat scan went well and once he woke up he was full of energy and excited (most kids are sluggish and grumpy), so we took a break for lunch and called Silas on the phone.

After lunch we saw several doctors and specialists, including ENT (ear-nose-throat), pulmonologist, and GI. Overall Josiah did well today, but there was a period of about an hour that was pretty rough when he learned he'd have a scope today (a camera probe is put down his nose and he has to talk so they can view his vocal cords, which is a key reason why we're here). Josiah's vocal cords are moving only minimally, which is a cause for concern relative to airway reconstruction/trach removal. He went through this procedure once before in ABQ and remembers it vividly...although I don't think it's particularly painful, I'm sure it's strange and involves discomfort, and he HATES it. Once he learned he had to have the scope, he was so anxious that it affected some of the other tests that really weren't so bad because he was dreading the scope. They recorded him with a microphone at a computer making sounds with his voice (how high pitch he could go, how low pitch, how strong of a voice without screaming, etc.)...he did o.k. with this but we could tell he was starting to get tired. When they tried to put a mask around his nose and mouth for another recording test, he melted down mentally and physically so much that they stopped the test. They said with 4-year olds it's 50-50 as to whether they make it through that test...suffice to say that Josiah is very strongly in the "No" 50%.

After calming him down, it was time for the scope. The procedure lasted less time than the one in ABQ and overall Josiah did much better during it, but it was still pretty traumatic for him. Fortunately he recovers very quickly after such experiences. They had to use a very small probe to go down his nose, which means they couldn't see quite as well as they could've with the larger probe. However, the ENT doctor felt he got good information, including some things the doctors will investigate further during his procedures tomorrow.

After the scope, we still had 2 more doctors to see. Fortunately, most of those appointments consisted of answering questions and discussing rather than procedures, so he did o.k.

All of the doctors we've seen have spent much time with us, answered our questions as best they could (which has for the most part been very good as they truly are very experienced with Josiah's issues), and impressed us with their knowledge. We'll know more tomorrow when we meet with them after his procedures, and we're still processing much of what they told us. However, whereas our ABQ doctors felt there was a possibility his vocal chord damage could prevent us from reconstructing his airway and removing his trach, the tone of our discussions today seemed to focus more on simply being careful to determine an airway reconstruction/trach removal plan that minimizes increased risk of aspiration, negative and permanent impact on his voice (could always sound "breathy"), etc. (i.e., finding a way to fix the most significant problem without making other problems worse).

A tiring day, a day of massive amounts of information we're still processing, but a good day in that we're speaking with experts and gaining information, which is why we brought Josiah to Cincinnati. Also, we love the team approach utilized by the different departments here, which was something we also appreciated when we were at Chapel Hill. Also, we ended the day at a Reds game, sitting in the 7th row between home plate and the dugout (approx. 30 feet from Pete Rose himself!). We left after 5 innings so Josiah could get to bed, Shelly could pack, and I could catch up on work, but it was a great experience.

We have an early morning tomorrow with a bronchoscopy, endoscopy, and then an overnight Ph test. His procedures should be over by late morning (followed by additional meetings with his specialists), but then he'll have a Ph probe tube down his nose the rest of the day and night so they can explore possible reflux issues more thoroughly than past tests have made possible. Josiah and Shelly will actually spend tomorrow night in the hospital. On Thursday he'll have another scope (he must eat during this one) called a FEES, then we'll hopefully have time to meet a friend of mine from college before boarding a plane and heading back to NM.

We know many people are praying for us this week and we value your prayers. THANK YOU!


  1. Wow, what a long day. I'm glad you are getting the team approach over there. I've prayed and will continue to pray for your family. Tell Shelly the weather was great for PE today :)
    Lisa D.

  2. Hi Guys! Just wanted you all to know that we are thinking about you all and praying for you daily. Of course the boys pray for Josiah everynight..but especially more so this week. Hope you have a safe trip and at least a little bit of fun too!
    Much Love, Chela

  3. You are loved and prayed for in the Boone home this morning. We are actually getting ready to go to St. Joseph's for Tommy's EUS (Endoscopic Ultrasonography) to take a look at the gastrointentinal stromal tumor that was found in his stomach lining last October. He has to be put to sleep and it sounds much like one that Josiah had yesterday. We are praying "the thing" is GONE! What a testimony that would be to all the doctors and nurses who were sure last year that it would have to be removed (a major surgery for Tommy). Will continue watching your blog for Silas updates. This child is a trooper!

    We are also praying for your girls and for you to have a smoother adoption process that you can even imagine. Jeremy and Tamara are with a village orphanage in Jinja, Uganda, and NOTHING is easy. Many times, well MOST times, nothing that is planned for a specific day/time even happens. Jeremy and Tamara are "sponsoring" a little boy whose family has just "dumped" him and all the legal things are just "falling through the cracks". They got the child before he was actually "put on the street" so they have HOPE and so do we. We are going over on October 29 and will return December 5. We will get to meet little Joeel (Jo-ellto us). If you get a chance and want to see more about "street children" and "village orphanages" Uganda, check out their blog at www.boonesinafrica.com.

    Will continue to follow your journey with all that you have going on. Our prayers are for you daily.

    Sandra and Tommy too!!!

  4. So great to hear an update about all that's going on in Cincinnati! How hard it must be to be for Josiah to be probed and prodded and tested for so many days. Will keep praying!

  5. Thank you for keeping us updated! I'm praying for you all--especially precious little Josiah :) I miss you guys!