tag:blogger.com,1999:blog-13009251742323897072024-02-19T02:01:43.673-05:00KT-QT Surgeries 2011 - 2017Katie, the animal lover, with her dog Oreo and her cat, Katniss!Colonelhttp://www.blogger.com/profile/15732841232964769114noreply@blogger.comBlogger195125tag:blogger.com,1999:blog-1300925174232389707.post-65138780808304723092018-03-12T16:57:00.001-04:002018-03-12T16:57:36.540-04:00Dr. Dellon - again! <div dir="ltr" style="text-align: left;" trbidi="on">
6 Mar 2018. We went down to Las Vegas to meet with Dr Dellon about Katie's jaw pain. In a matter of 2 minutes, he expertly diagnosed and identified ntify the offending nerve in her face. He showed us how he could repair that nerve by burying it, and give her some pretty immediate relief. So, we're planning to go to Baltimore in June to accomplish that. Hopefully, this time we can get insurance to cover it. If not, it is very expensive! But we've got to find a way to get her out of this continual pain. And we know his methods work, because he was able to rid her of the cheek pain a couple of years ago.</div>
<div class="blogger-post-footer">"...and he took their little children, one by one, and blessed them, and prayed unto the Father for them (3 Nephi 17:21)."</div>Colonelhttp://www.blogger.com/profile/15732841232964769114noreply@blogger.com0tag:blogger.com,1999:blog-1300925174232389707.post-23512996907473202662017-06-28T07:13:00.001-04:002017-06-28T07:13:48.172-04:00Free the Jaw - June 2017<div dir="ltr" style="text-align: left;" trbidi="on">
Monday, 26 June 2017<br />
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Finally, 6 weeks after the revision to the initial jaw surgery, Katie got "unwired" today! She was so happy to be freed, she was all smiles in the recovery room. Thankfully, we got into the Ronald McDonald House again - these people are SO kind to us! We only stayed from late Saturday night until Wednesday afternoon. We flew here from Houston, where we had been visiting for 2 days for my granddaughter Adelle's baptism. We'll fly back to Houston, where Pam is, for a few more days' visit before heading home to make our big retirement move from St. George to Payson, UT. We're right in the midst of having a house full of boxes, packed and ready to move! Makes for a wild life right now.<br />
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The new combo bone in her jaw, from hip and rib, has evidently come together and healed well. It's not a common combination, and Dr. Matthews says it was new territory. But it seemed to work. He reports that her jaw moves well, and that the bone will continue to strengthen with use. He cautioned her to eat only soft things for at least the next month, to give the bone plenty of opportunity to solidify. <br />
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As to "next steps," he says she must work with her prosthedontist in SLC to see what he can do in expanding her upper teeth so that they meet the bottom teeth better. Dr. Matthews figures that is the best, and maybe only, approach from this point. He got a little emotional when he said goodbye to us, as if he didn't expect to see us again. I think he has stretched himself quite a bit in accomplishing this much, and he doesn't have any more ideas. So I hope Dr. Nick Egbert in SLC, the prosthodontist, will be able to do something. <br />
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Step 1 is to get her some serious dental work. She has a lot of cavities, as you can imagine, after having her jaw completely wired shut for 3 out of the last 7 months. During this most recent wiring, she fell when she got out of the bathtub one time early on, and hit her mouth guard hard against the door handle. At the time, she felt like she broke a front tooth, and sure enough, when she got unwired, the right canine tooth is chipped. (Dr. Matthews didn't find tooth fragments during the surgery though.) That needs to be fixed ASAP as well - KT reports that it is very sharp.<br />
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<tr><td class="tr-caption" style="text-align: center;">Charlotte NC - The NASCAR Hall of Fame</td></tr>
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The pain in her right lower jaw area, well below the new bone area, was caused by some infection starting to develop around the wire that was holding her mouth shut. "Grannulated tissue" he called it. He thinks it will resolve itself, by draining into her mouth or through the incision, and he did not feel it necessary to give her antibiotics since the bone isn't involved. It is still very painful to her, and I hope he's right about that - I do NOT want to see another full-blown infection arise out of this! She did sleep very well the first night after surgery, but last night was not quite as comfortable. I think it would be prudent to just get her on antibiotics to ensure this clears up.<br />
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KT and I got to go visit the Charlotte NC NASCAR Hall of Fame yesterday. It was THE best museum I've ever been to, and I'm not even a race fan! So educational, and so well done - I'd highly recommend it to anyone visiting this area.<br />
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On, now, to get KT back on the normal track of her life - of course, with continued efforts to get her bite to close for eating...<br />
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<div class="blogger-post-footer">"...and he took their little children, one by one, and blessed them, and prayed unto the Father for them (3 Nephi 17:21)."</div>Colonelhttp://www.blogger.com/profile/15732841232964769114noreply@blogger.com0tag:blogger.com,1999:blog-1300925174232389707.post-21935319837819996482017-05-16T17:02:00.000-04:002017-05-16T17:02:48.118-04:00Revision to December Jaw Surgery<div dir="ltr" style="text-align: left;" trbidi="on">
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Katie and I (Dad) arrived back in Charlotte NC late Saturday night for Monday's surgery to strengthen KT's new jaw. About a month ago, the left rib bone that was grafted to make her a jaw joint "popped," causing her a lot of pain. After analysis by a CT scan, it was indeed found to be a fracture. The screws were hurting her badly. <br />
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We only plan to be here a week. Dr. Matthews suggested we use some of her iliac hip bone to add between the rib bone and the original jaw bone to strengthen it all into one strong jaw bone. Katie had to make the decision on the spot in pre-op to decide whether she wanted: a) to merely take out the offending screws and go on allowing the rib bones to eventually completely dissolve; b) go in and fix the left side only, which was the fractured side; or, c) go in and strengthen the right side as well, since it was also very weak and could eventually fracture as well. It was a HARD decision, and she asked what I thought she should do. It was difficult for me to tell her that I plain just did not know! I received NO inspiration at all, and told her it was entirely up to her. She thought, decided she should do the whole thing - both sides, and told Dr. Matthews so. He then left to prepare (along with Dr. Franks and a Dr. Sanchez).<br />
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As soon as they left, Katie asked me if she had made the right decision. Again, I told her that I didn't know, even though I was secretly thinking that it surely would be a lot easier if we were just to get the screws removed, which would alleviate the pain, and move on. But, I told her, Heavenly Father knows, so let's ask him. She had me say the prayer. I asked her what she felt after - because, again, I had NO inspiration! She said she thought she made the right decision.<br />
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The rest of the pre-op wasn't real positive. They couldn't get an IV in, so that traumatized her. They finally gave up so they could get it in under gas anesthesia once in the OR. She was very brave right up to the last minute, but lost it when she heard her Mom's voice on the phone. "I wish Mom was here." I'm definitely not as good a comforter.<br />
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Screws can come out now. He thinks we left her wired shut too long last time (because of the infection). The jaw needs to be used to strengthen. So it will only be wired shut 4 weeks this time. He says we're in uncharted territory - he really doesn't know exactly how to approach this.<br />
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I was SO glad she decided to go ahead with it once I got the report from Dr. Matthews. 3.5 hours after rolling her back, Dr. Matthews just came out. I felt the Spirit strongly as he reported to me, which is great, because I left it totally on KT to make the decision this morning. Here's his report: bone taken from right hip - stuffed in between the rib graft and the mandible (jaw). Rib graft was "viable" on both sides, meaning it was alive and bled, which is really good - that means it hasn't died. Soft tissue will hold the new graft in place while it adheres or molds into the bone on either side of it to make a strong, total structure. Screws were removed (yeah!). No new scars - used same old incision points. She will stay in the hospital tonight for sure. He didn't think the face intrusion would bother her much at all, as it wasn't as severe as last time. However, that has not proven to be the case! The first 24 hours have been pretty difficult and painful.<br />
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I told her I didn't think the hip thing would be too bad, because I had hip bone graft taken out when we were trying to save my leg several years ago, and it didn't bother me at all (that I can recall, anyway). That has not proven to be the case either, as her hip is extremely sore. She can barely walk on it right now.<br />
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Dr. Matthews looked me in the eye as he reported all this to me - in December, his eyes kept shifting away from mine, so I knew he wasn't totally confident in the results last time. I truly think KT made the right decision here, and that this will ultimately strengthen her jaw bone and make chewing a reality. I am SO happy! Your prayers have been heard, and they have given me strength, and blessed KT tremendously.<br />
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The secretions haven't been a big problem this round - they were one of the scariest parts of the recovery last December. And of course, we are CERTAIN there will be no infection this time, which was the real big trial back then.<br />
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THANK YOU FOR YOUR PRAYERS!!!! We still plan to go home Sunday, so she can be with family and Oreo and Katniss, her animals.</div>
<div class="blogger-post-footer">"...and he took their little children, one by one, and blessed them, and prayed unto the Father for them (3 Nephi 17:21)."</div>Colonelhttp://www.blogger.com/profile/15732841232964769114noreply@blogger.com1tag:blogger.com,1999:blog-1300925174232389707.post-1078042313680833172017-02-17T22:16:00.000-05:002017-02-17T22:38:02.764-05:00End in Sight!<div dir="ltr" style="text-align: left;" trbidi="on">
Katie's jaw was supposed to be wired shut for 6 weeks, which would have been 2 Feb. However, we were all devastated when the CT scan at that point show very little healing, and the Dr. informed KT she had to go two additional weeks to allow more time for healing. There was some question as to whether the union of the new bone graft was happening, and Dr. Matthews was concerned.<br />
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So, instead of going back out to Charlotte NC last weekend to bring Pam and KT home, I went out for a morale visit, and left them there. The visit was really nice - we ALL needed it very much. Hugs, kisses and tears were shared. I know I came away much rejuvenated, as I had been a little down about the whole process. Katie and Pam needed my love, too. So it was good. <br />
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KT had her 2-weeks later CT scan on Wednesday, and today Dr. Matthews said it showed enough healing that he was going to go ahead and do the surgery to cut the wires on Monday. KT is elated! She's already got the first few meals planned, because all she's been able to eat for EIGHT & 1/2 WEEKS now has been Ensure, soups and an occasional milkshake. <br />
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Interestingly, the surgery has opened up her throat and mouth enough that she has started SMELLING things that she's never smelled before! We didn't expect that little bit of change - she'll ask, "What is that smell?" when a car with bad exhaust is in front of us, or when we're outside and there is a strong floral smell outside, or a good meal cooking somewhere. So that's been fun. <br />
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Even though the fusion of the bone, and the new bone itself, isn't as strong as the Dr had hoped they'd be by now, he feels that allowing her to chew will put pressure on the bone and help it get stronger. So, we're not completely out of the woods yet - please continue to pray that the new joint will stay together and continue to strengthen. We know that it is by faith, prayer and fasting that this much progress has been made, and we thank you for your part in that!<br />
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Here are some images of the new jaw joint - BEFORE, and both immediately after surgery 8 weeks ago, and just this week. What to make of it all???<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjaJC6w5yNN6aCJic33tAgqgmSthJBn3hyphenhyphenNycxab1Ozunh4c1XZBzE5f7IZHAHxHvhRt6cqzL8UQ68aNRs3bYshn34ZOk91fmF-k4bzA6hsyU23jLtr5RpI0qfWqZa3l1MX23aE_3i2iczB/s1600/Katie%2527s+2016-2017+Jaw+Surgery+-+left.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjaJC6w5yNN6aCJic33tAgqgmSthJBn3hyphenhyphenNycxab1Ozunh4c1XZBzE5f7IZHAHxHvhRt6cqzL8UQ68aNRs3bYshn34ZOk91fmF-k4bzA6hsyU23jLtr5RpI0qfWqZa3l1MX23aE_3i2iczB/s400/Katie%2527s+2016-2017+Jaw+Surgery+-+left.jpg" width="400" /></a></div>
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<div class="blogger-post-footer">"...and he took their little children, one by one, and blessed them, and prayed unto the Father for them (3 Nephi 17:21)."</div>Colonelhttp://www.blogger.com/profile/15732841232964769114noreply@blogger.com0tag:blogger.com,1999:blog-1300925174232389707.post-75292401255180131622017-01-13T09:25:00.000-05:002017-01-13T09:25:32.463-05:001/2 Way There! With A Pleasant Surprise!<div dir="ltr" style="text-align: left;" trbidi="on">
<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dxeIdBBDHLF-2uzF4qyac3X5ftzRoHb2fyAsbP__B-T1arllplWofmhfYMGYrC7Bq4ki4-5S7bwxvNlrGmjuw' class='b-hbp-video b-uploaded' frameborder='0'></iframe>Talk about an eventful day! Daughter Jami showed up magically at the airport right while we were trading rental cars! Imagine that! It was a well-coordinated surprise that was very effectively carried out by all concerned. Both Pam and KT were pleasantly surprised, and Jami's assistance came in a very timely manner, as I depart today to go back to work. Thanks for coming, Jami!<br />
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We also had a nice visit from Judy Mosher during dinner time, a friend who coordinates all the Treacher Collins Retreats. She and her daughter both have TCS to a lesser degree than KT, and they are superb advocates for families who need resources to learn about and deal with the syndrome. She is, in fact, the one who first directed us to Dr. Matthews here in Charlotte, because he performed all of her and her daughter's surgeries.<br />
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Yesterday marked the halfway point of KT's jaw being wired shut! She has learned to sip soup through a straw in the side of her mouth, and to use baby food squeezables to get a bit of flavor in her diet. She has begun to be able to smell, which she's never been able to do before, so that has increased the intensity of taste. She says everything tastes so strong! So that's a nice little unexpected benefit of this latest surgery. The infection continues to diminish daily, and we continue to pray the bone itself will hold up and fuse where and how it's supposed to.<br />
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<div class="blogger-post-footer">"...and he took their little children, one by one, and blessed them, and prayed unto the Father for them (3 Nephi 17:21)."</div>Colonelhttp://www.blogger.com/profile/15732841232964769114noreply@blogger.com0tag:blogger.com,1999:blog-1300925174232389707.post-76676864680280014122017-01-12T08:33:00.000-05:002017-01-12T08:33:17.164-05:00Progress & Visits<div dir="ltr" style="text-align: left;" trbidi="on">
Sorry I haven't updated for awhile. Things have gone pretty smoothly, though there is still no confirmation that the new bone grafts have "taken." We met with Dr. Matthews and Dr. Franks on Tuesday. The infection is under control, though the abscess continues to drain some each day. They will take CT scans towards the end of January to see how the bone is doing. The infectious disease Dr. is treating it as if it's osteomyelitis, though all 3 doctors think we caught it early enough that it didn't go further than the soft tissues. Thus, the PICC line, which we are managing quite well here at "home." The antibiotics make KT very tired, but she is not in much pain at all - in fact, less pain than the last six years! That is what's so amazing.<br />
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Her face definitely looks different, and the two rib grafts are apparent as the swelling goes down. Having her mouth wired shut with her big tongue stuffed into the back of her mouth is putting pressure on the front teeth, so they'll need to be readjusted when this is all over. She figured out how to drink tomato soup last night with a straw by stuffing the end of it way back into one side of her mouth! She's also used baby food squeeze packs to get a little bit of taste in her mouth. All other nutrition is provided by the g-tube. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBlrwQxRbxRkBSN957yW6vqNlUoDr4a5Y5XDKvrDEXY6WeX0LDquhX8niCWFGqAF4XV4SBV9tyggqYendeSF0Fbh1vQrv47X9yrkBXKRBgtUdwaL_xVqrwtKYMlE3BCKwlwRQwRrgcpsWg/s1600/Robin+Kargoll+Visit.jpeg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBlrwQxRbxRkBSN957yW6vqNlUoDr4a5Y5XDKvrDEXY6WeX0LDquhX8niCWFGqAF4XV4SBV9tyggqYendeSF0Fbh1vQrv47X9yrkBXKRBgtUdwaL_xVqrwtKYMlE3BCKwlwRQwRrgcpsWg/s320/Robin+Kargoll+Visit.jpeg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><b>Robin Kargoll's daughter Faith has Goldenhar Syndrome,<br />with lack of facial bone similar to KT's. There is a TLC<br />special on this syndrome called, "A Face Like Mine"<br />if you want to look it up. We enjoyed Robin's visit!</b></td></tr>
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We've had some very lovely visits: one from Anita Aldrich Birley, a gal from our Virignia Ward who now lives down here near Charlotte, and one from Robin Kargoll, the Mom to a young girl with a facial syndrome closely related to Katie's Treacher Collins Syndrome (TCS). Her daughter, Faith, has undergone the same types of surgeries KT has had to endure. We've been in touch by phone and over the internet before, but this is the first time we've met in person. Lovely people! Today we expect another visit from Judy Mosher, who organizes worldwide retreats for families with TCS.<br />
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Yesterday we had another very great blessing, in that we were finally able to resolve the insurance issue for KT. Because she turns 21 next week, her military health insurance coverage changes. So we've been worried about which of 3 options to pursue to keep her insured. The best alternative hasn't worked out yet (it still may, down the road), but the 2nd best option came through, which was much less expensive than the 3rd option! So we're happy about that!<br />
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KT wanted to get out of the house yesterday, so while Pam napped, I took her to the Discovery Center in downtown Charlotte. We had a nice time, and it got her moving pretty good. I leave tomorrow to go back to work, while Pam and KT will stay here for up to another month.<br />
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Thanks for your prayers. Please continue to implore the Lord that these new bones in her face will heal correctly, be infection-free, and be mechanically effective as a jaw joint, as that is the entire purpose of this. </div>
<div class="blogger-post-footer">"...and he took their little children, one by one, and blessed them, and prayed unto the Father for them (3 Nephi 17:21)."</div>Colonelhttp://www.blogger.com/profile/15732841232964769114noreply@blogger.com0tag:blogger.com,1999:blog-1300925174232389707.post-88230721073555273422017-01-05T23:46:00.005-05:002017-01-05T23:46:59.262-05:00Nausea - the current hurdle<div dir="ltr" style="text-align: left;" trbidi="on">
The nausea continued today - we thought it was doing better. These antibiotics must really throw her system for a loop! But she's definitely much stronger - it was a good day overall, and she'll thrive better outside of the hospital. Dr. Franks promised her she could go home to the Ronald McDonald House tomorrow, so she's excited about that.<br />
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Not much else to report. The swelling continues to decrease, and the pain is minimal now. The cyst has mostly drained, though it still has a ways to go. She's sleeping calmly right now. Thanks to everyone for the prayers, and for putting her name in the Temples.<br />
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- Glenn</div>
<div class="blogger-post-footer">"...and he took their little children, one by one, and blessed them, and prayed unto the Father for them (3 Nephi 17:21)."</div>Colonelhttp://www.blogger.com/profile/15732841232964769114noreply@blogger.com0tag:blogger.com,1999:blog-1300925174232389707.post-65063723334036373972017-01-05T07:28:00.002-05:002017-01-05T07:28:51.439-05:00Under Control, 2 weeks after surgery<div dir="ltr" style="text-align: left;" trbidi="on">
It looks like her nausea is under control, finally. It must have been the vancomycin that caused it, and the extreme weakness. Yesterday, she was able to walk down the hall 3 times, and shower, and tolerate feedings. She got stronger and more steady with each walk. Her infection in the face looks better and better as well. She still feels wiped out, and keeps signing that she's "done with this!" But once we get back over to the Ronald McDonald House, she'll be fine. Today marks 1/3 of the way through the 6 weeks of having her mouth wired shut.<br />
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Dr. Franks just came in and said that if she has a good day today, he'll release her to the RMH tomorrow. So Katie is all for that, and will make sure she has a good day, just so she can get out of the hospital! I asked if we'd lost any bone healing time due to the infection, and he thinks not. So 6 weeks is still the goal - one month from now. Even though they'll treat it as if it was a bone infection, it likely wasn't - they just want to ensure they treat it aggressively so as not to have further problems.<br />
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All's looking brighter. Thanks for your prayers.</div>
<div class="blogger-post-footer">"...and he took their little children, one by one, and blessed them, and prayed unto the Father for them (3 Nephi 17:21)."</div>Colonelhttp://www.blogger.com/profile/15732841232964769114noreply@blogger.com0tag:blogger.com,1999:blog-1300925174232389707.post-31663689897803576352017-01-03T23:55:00.000-05:002017-01-03T23:55:02.094-05:00Bacteria ID'd & PICC line<div dir="ltr" style="text-align: left;" trbidi="on">
The cultures from her face came back today, and specified <i>e coli</i> and <i>candida</i> as the two main culprits infecting Katie's face. That kind of surprised me - I'd never heard of contracting <i>e coli</i> other than from eating undercooked food! However, in researching it a bit, <i>"</i><span style="background-color: white; color: #333333; font-family: Georgia, "Times New Roman", Times, serif; font-size: 14px; font-style: italic;">These bacteria can also cause infection of the prostate gland (prostatitis), gallbladder infection, infections that develop after appendicitis and diverticulitis, <b>wound infections (including wounds made during surgery), </b>infections in pressure sores, foot infections in people with diabetes, pneumonia, meningitis in newborns, and bloodstream infections. Many </span><span style="background-color: white; color: #333333; font-family: Georgia, "Times New Roman", Times, serif; font-size: 14px; font-style: italic;">E. coli</span><span style="background-color: white; color: #333333; font-family: Georgia, "Times New Roman", Times, serif; font-size: 14px;"><i> infections affecting areas outside the digestive tract develop in people who are debilitated, who are staying in a health care facility, or who have taken antibiotics." (Merck Manual). </i> I guess it is definitely contractable from surgery.</span><br />
<span style="background-color: white; color: #333333; font-family: Georgia, "Times New Roman", Times, serif; font-size: 14px;"><br /></span>
<span style="background-color: white; color: #333333; font-family: Georgia, "Times New Roman", Times, serif; font-size: 14px;">So they changed her antibiotics to target these two bugs very specifically. It has wiped her out - she had no energy at all today, though I did finally convince her to take a short walk this evening. Then we played a game of chess and watched a movie, plus a sweet video of Cami's family that she sent to us. She's started wanting to drink, but can only swallow very small droplets of water from a straw at a time.</span><br />
<span style="background-color: white; color: #333333; font-family: Georgia, "Times New Roman", Times, serif; font-size: 14px;"><br /></span>
<span style="color: #333333; font-family: Georgia, Times New Roman, Times, serif;"><span style="background-color: white; font-size: 14px;">She got her PICC line inserted today, as she'll have to be on these antibiotics for 6-8 weeks. We have to be very aware of any nausea, because since her mouth is wired shut, vomiting would be dangerous, as she could inhale it through her trach. So we have a pair of wire cutters by the bed, and if she has to vomit, we are to cut the mouth open to allow proper expulsion. But they want to avoid that at all costs!</span></span><br />
<span style="color: #333333; font-family: Georgia, Times New Roman, Times, serif;"><span style="background-color: white; font-size: 14px;"><br /></span></span>
<span style="color: #333333; font-family: Georgia, Times New Roman, Times, serif;"><span style="background-color: white; font-size: 14px;">Katie is still very discouraged - any notes of encouragement directed to her personally would be appreciated. You can Facebook, Instagram, SnapChat, email, text, or use any other form of contact. She likes getting messages on her phone. Email me if you'd like her contact info: whick@juno.com. </span></span></div>
<div class="blogger-post-footer">"...and he took their little children, one by one, and blessed them, and prayed unto the Father for them (3 Nephi 17:21)."</div>Colonelhttp://www.blogger.com/profile/15732841232964769114noreply@blogger.com0tag:blogger.com,1999:blog-1300925174232389707.post-4172771796325418422017-01-02T19:39:00.003-05:002017-01-02T19:39:52.099-05:00Drain Removed<div dir="ltr" style="text-align: left;" trbidi="on">
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjABCX-IBlbwrV-ZXaT7OFzbYGE5ge6cAOPCBYR6IkZxy91FPSO1xCkH603KfvFFFTLvRrvpzxrnmP2PnlAggNoUdKGlUpkbr2IQ7YjRaHDGrNi303RaOncpOTqsQ8fTcaOO6-xhnMepyFo/s1600/drain+cropped.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjABCX-IBlbwrV-ZXaT7OFzbYGE5ge6cAOPCBYR6IkZxy91FPSO1xCkH603KfvFFFTLvRrvpzxrnmP2PnlAggNoUdKGlUpkbr2IQ7YjRaHDGrNi303RaOncpOTqsQ8fTcaOO6-xhnMepyFo/s1600/drain+cropped.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><b>The drain that was put in during<br />surgery on Saturday and removed<br />today, because it wasn't effective.<br />The washing out of the infected<br />area was effective, however.</b></td></tr>
</tbody></table>
Evidently, the drain they put in the side of her face during the surgery on Saturday wasn't working as advertised, so Dr. Franks took it out at her bedside today. That wasn't pleasant! The infectious disease Dr (Richardson?) said they haven't yet got a firm ID on the "bug" that has attacked her face, but there are a "lot" of different bugs growing in the petri dish. She says that's a bit unusual for a facial infection, but may indicate there was some communication between the mouth cavity and the jaw joint during the initial surgery, as the mouth DOES have many varieties of flora growing in it.<br />
<br />
She can't tell if any of the infection has entered the bone, but thinks at this point that there are good signs that it has not: no fever, and a much improved look to the infected area after only 48 hours. In any case, whether it's only affected soft tissue or not, she'll be on strong antibiotics for an extended period. The vancomycin really zaps her strength! Her intestines started working today, so there's another sign of progress.<br />
<br />
I extended my stay here for another week. I hope things are more settled by then.<br />
<br />
- Glenn</div>
<div class="blogger-post-footer">"...and he took their little children, one by one, and blessed them, and prayed unto the Father for them (3 Nephi 17:21)."</div>Colonelhttp://www.blogger.com/profile/15732841232964769114noreply@blogger.com0tag:blogger.com,1999:blog-1300925174232389707.post-33284748363270002692017-01-01T19:54:00.002-05:002017-01-01T19:54:50.765-05:00Improvement<div dir="ltr" style="text-align: left;" trbidi="on">
Today, Katie made some good improvement. She's back to eating (Ensure, on the pump), she showered, she sat up in the chair for 3 hours, and the swelling and redness has diminished. They took her off one of the 3 antibiotics they had her on, and her pain has been under control. <br />
<br />
I've made arrangements to postpone my departure from here (Charlotte, NC) to next week so we can get her out of the hospital and back to the Ronald McDonald House (RMH) before I leave Pam and Katie alone here for the remainder of her recovery. There is no way we could do this without the both of us while things are so critical. Once we get a good routine going at the RMH, then I think Pam can handle it. But right now, there is so much that needs to be done at night, and one person can't handle the care both day and night.<br />
<br />
Thanks for your prayers - they're working!</div>
<div class="blogger-post-footer">"...and he took their little children, one by one, and blessed them, and prayed unto the Father for them (3 Nephi 17:21)."</div>Colonelhttp://www.blogger.com/profile/15732841232964769114noreply@blogger.com0tag:blogger.com,1999:blog-1300925174232389707.post-30916590342414012792016-12-30T23:48:00.001-05:002016-12-30T23:48:56.543-05:00Dreaded Infection!<div dir="ltr" style="text-align: left;" trbidi="on">
After KT got out of the tub this morning, her FIRST morning out of the hospital, Pam noticed an abscess forming on her left jaw. NO! We've been here before in 2011 - not a happy development.<div>
<br /></div>
<div>
Dr Matthews is evidently out of town, so he sent Dr. Franks right over to the Ronald McDonald House to examine her. He said he needed to aspirate the cyst in his office to see if it was clear fluid, or pus. So we went on over there, and sure enough, it was purulent, full of infection. So he readmitted Katie to the hospital tonight. Katie was beside herself with grief! Since she's been through infection from a previous surgery, it really scares her. Surgery is scheduled for 0730 tomorrow for Dr. Franks to go in and reopen her up and clear it all out surgically. We're hopeful that it hasn't compromised the new bone in her jaw.</div>
<div>
<br /></div>
<div>
This is all twisting, turning journey that we'd have love to have avoided. I called the local Bishop today and he sent over the missionaries, who helped me give KT a blessing. Please keep her in your prayers. And thanks for the emails, cards, texts, SnapChats, and packages that you've sent. They have all helped to keep her hopeful. But I will say, she is extremely discouraged right now.</div>
</div>
<div class="blogger-post-footer">"...and he took their little children, one by one, and blessed them, and prayed unto the Father for them (3 Nephi 17:21)."</div>Colonelhttp://www.blogger.com/profile/15732841232964769114noreply@blogger.com0tag:blogger.com,1999:blog-1300925174232389707.post-69739827534545361702016-12-29T10:58:00.002-05:002016-12-29T10:58:15.627-05:00DAY 7: Discharge!<div dir="ltr" style="text-align: left;" trbidi="on">
KT is so thrilled to be able to transition to the Ronald McDonald House today! It is such a comfortable place, and they have therapy dogs that come each week to visit with patients - how do you beat that?! Plus, it has a tub, and although she won't be able to fully submerge, because of the rib incision, she will be able to soak the lower half of her body. They removed the bandage from her chin this morning, change her prescription from Loritab (it gives her a bad headache), and got everything else in order for us to go "home." It'll be nice to be off this night shift - I feel like a zombie...<br />
<br />
Ok, for some humor: since KT's jaw is wired shut, she cannot speak, so she uses her iPad app to do text-to-speech. For several days, she used a British female voice, which was sometimes hard for me to understand, so yesterday, she switched it to a deep male British voice. Imagine me dozing off in the middle of the night, and suddenly being brought to consciousness by the deep male voice saying, "Sorry, Daddy, but I have to go potty!" Oh, man, it just made me laugh! My goodness, it's nice to find humor in what has been a very stressful situation.<br />
<br />
I got my ticket last night to return to work on the 5th of January. It'll be hard to leave Pam & KT here alone for the last month of her jaw being wired, but it will work. When I come back to get them, maybe we'll go do something fun together here on the East Coast.<br />
<br />
She's got a long way to full recovery still, but things are going in the right direction, for which we are very grateful. Thanks for your prayers in her behalf.</div>
<div class="blogger-post-footer">"...and he took their little children, one by one, and blessed them, and prayed unto the Father for them (3 Nephi 17:21)."</div>Colonelhttp://www.blogger.com/profile/15732841232964769114noreply@blogger.com0tag:blogger.com,1999:blog-1300925174232389707.post-27656234113204171652016-12-28T09:45:00.002-05:002016-12-29T10:43:26.085-05:00DAY 6: Discharge Soon?<div dir="ltr" style="text-align: left;" trbidi="on">
EVERY single time I got KT settled down last night, someone came in to disturb her and woke her up. She didn't have a very restful night for that reason - our timing was off horribly! But...I monitor her pulse rate pretty closely all night, and last night was the first night it has ever gone below 100 bpm, which is a sign that her pain is decreasing overall. In fact, at one point early this morning, I saw it at 67 bpm, which is pretty normal. She was resting so well at that moment, and of course, someone came in and woke her up. If it's not the main nurse, it's respiratory, or labs, or vitals, or housekeeping or something else. <br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-dtuQaMMRRfMWb8HtnD2HP62a6Ca8o_0hPXChaZRJ_GBpwKiqo0HGuleAcLKwwLxewlZ6R3_3SBjCB4AQG0xlSRXfc4ezRJ6Ntg5ODbX5fN7fgdtefIFFbgfhPTpnx6r4Xqsd5F9CYik2/s1600/Feeding.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-dtuQaMMRRfMWb8HtnD2HP62a6Ca8o_0hPXChaZRJ_GBpwKiqo0HGuleAcLKwwLxewlZ6R3_3SBjCB4AQG0xlSRXfc4ezRJ6Ntg5ODbX5fN7fgdtefIFFbgfhPTpnx6r4Xqsd5F9CYik2/s320/Feeding.jpg" width="180" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><b>Saline solution for hydration, <br />and feeding tube for milk. If<br />she can get discharged today,<br />we'll blow this joint!</b></td></tr>
</tbody></table>
Her sense of humor is coming out on occasion, though she still feels pretty sorry for herself: "Why do I always have to be in pain?" She says she's ready to blow this joint and get over the the Ronald McDonald House (RMH), so we'll see what the Dr. says today. Her swelling has definitely gone down, and the regular nebulizer treatments have thinned out her mucous substantially, so no more troubles with plugged trachs. I think we could handle her care from the RMH, which would make her so much happier (and us)!<br />
<br />
Her blood pressure is still pretty low, but we went for a good walk this morning. She's not as dizzy, just weak. It's nice to see her giggle every once in awhile now while watching a movie (The Avengers). I'm getting QUITE good at understanding her sign language now, if I do say so myself, though she continues to use the text-to-speech app on her iPad when I don't quite get it, or when she communicates with the nurses. <br />
<br />
We had a SECOND fire alarm on the 3rd floor last night! Crazy. Seems very unusual to have two fire alarms in one night from the same floor, different hallways. Haven't seen Dr. Matthews yet this morning. Pam's been working on getting the equipment and other supplies needed for us to care for her from the RMH. <br />
<br />
Thanks for your prayers - things are definitely improving!</div>
<div class="blogger-post-footer">"...and he took their little children, one by one, and blessed them, and prayed unto the Father for them (3 Nephi 17:21)."</div>Colonelhttp://www.blogger.com/profile/15732841232964769114noreply@blogger.com2tag:blogger.com,1999:blog-1300925174232389707.post-10300424028051601372016-12-27T21:56:00.000-05:002016-12-27T21:56:04.844-05:00DAY 5: Trach Scares!<div dir="ltr" style="text-align: left;" trbidi="on">
KT must have a lot of thick junk in her lungs, because we keep having panicky incidents where she gets a trach plug and cant breathe. This hasn't been such a problem during previous surgeries, because she usually has her mouth to breathe through as a backup, but since it's wired shut, her trach is her only source of air. I've handled 2 incidents on my own (I'm on the night shift), and Pam's handled 3 such emergencies during the days. When it happened again this morning, I hadn't yet put my leg on, so I frantically tried to get my leg on while hopping over to grab the replacement trach to change it out, and KT really got hyper-panicked! I yelled out the door, "EMERGENCY!" and I found out why they have a Quick Response Team! Within SECONDS there were 6-8 people scrambling into the room, including an ENT Doctor, and they took over for me. KT finally coughed up a big clog, and then everything started settling back down, but it spooked her badly. She's had a pounding headache all day from that scare. <br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhlBHDR9oT8bA3X9Tqrnac_sPxsFuRYIFyXlgKW61TzDBGDwo-W8C3WBhcPMgDevT6uwOPg3UeSbc66gseSR75ewUaRrdixmrcwc8iPXVGo_Na-Dz1Obruzom3egKh-oqjPCCacD6zhbE9C/s1600/Pain+electrode.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhlBHDR9oT8bA3X9Tqrnac_sPxsFuRYIFyXlgKW61TzDBGDwo-W8C3WBhcPMgDevT6uwOPg3UeSbc66gseSR75ewUaRrdixmrcwc8iPXVGo_Na-Dz1Obruzom3egKh-oqjPCCacD6zhbE9C/s320/Pain+electrode.jpg" width="274" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><b>She has 2 of these battery-powered electrodes to <br />control pain on her rib harvest sight and one on each jaw.</b></td></tr>
</tbody></table>
<br />
Dr M believes the swelling has peaked and will decrease from here. He is concerned about the firmness of the gland area under the left jaw area and started antibiotics today as a precaution. Her blood pressure has been a bit low for 24 hours now (~90/60), so they've stopped the IV medication Dilaudid. That also puts her a step closer to being able to come home to the Ronald McDonald House<span style="font-family: "Times New Roman", serif; font-size: 13.5pt;">,
which is only 3 blocks from the hospital.</span> She's light-headed when she walks, but her rib pain has significantly reduced, which is great news! I think the little battery-powered stimulators that Dr. Matthews put on her ribs during surgery (see photo to the left) really helped accelerate that part of the recovery process. Two days later, he put the same little gadgets on each of her lower jaws, but they haven't seemed to be as effective in that location, for some reason.<br />
<br />
She's been quite loopy today, but Pam and she had a calm day since the trach incident this morning, which happened before Pam got here. KT showered and walked today.<br />
<br />
They just had a fire alarm on the 3rd floor of the hospital. They told us to stay put and keep our door closed. We're on the 5th floor. 15 minutes later and I haven't even seen a fire engine! Weird. </div>
<div class="blogger-post-footer">"...and he took their little children, one by one, and blessed them, and prayed unto the Father for them (3 Nephi 17:21)."</div>Colonelhttp://www.blogger.com/profile/15732841232964769114noreply@blogger.com1tag:blogger.com,1999:blog-1300925174232389707.post-91683579948648191882016-12-26T08:51:00.002-05:002016-12-29T10:59:35.458-05:00Day 4: Post-Christmas<div dir="ltr" style="text-align: left;" trbidi="on">
<div class="MsoPlainText">
She had a very rough Christmas night. Her swelling and pain are still
very high. I keep hoping we're about to the turning point. She's scared, but there's no real sign of
infection; just a low-grade fever of 101.7 that's persisted for over a day now. The nurse (named "Honor") was so worried she called Dr Matthews early this morning and he added a med - phenergan. She went right to sleep within 4 minutes of the dose, and has now been asleep for over 2 hours. This is the first sleep other than 2-minute naps she's had all night. Please keep up your prayers, and include a request that she can get over her fears. She's been through some pretty rough recoveries before; thus, the anxiety.</div>
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<div class="blogger-post-footer">"...and he took their little children, one by one, and blessed them, and prayed unto the Father for them (3 Nephi 17:21)."</div>Colonelhttp://www.blogger.com/profile/15732841232964769114noreply@blogger.com1tag:blogger.com,1999:blog-1300925174232389707.post-49204351650243781062016-12-25T09:16:00.001-05:002016-12-29T10:59:23.705-05:00Day 3: A Hospital Christmas <div dir="ltr" style="text-align: left;" trbidi="on">
<div class="separator" style="clear: both; text-align: center;">
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgk-8KMa-imBrSMUKj1ftejcBoGBUdvyWJ04QBm_2tiL1NLkv2Mk7QiPCuRi2PpICZWc8hLc7KjBbkDhWtXsUTcpf7wAOO0EjD54ykcWmmko6XxZQobKUDZZVOBvhk9KpmpRFXNUBIgoQQM/s1600/merry-christmas-hand-lettering-vector-21448838.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="197" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgk-8KMa-imBrSMUKj1ftejcBoGBUdvyWJ04QBm_2tiL1NLkv2Mk7QiPCuRi2PpICZWc8hLc7KjBbkDhWtXsUTcpf7wAOO0EjD54ykcWmmko6XxZQobKUDZZVOBvhk9KpmpRFXNUBIgoQQM/s640/merry-christmas-hand-lettering-vector-21448838.jpg" width="640" /></a><span style="text-align: left;">Katie didn't sleep very well last night, but she was calm. We watched "A Christmas Story," which doesn't deserve it's place in classic films, IMHO. She's started getting tube feedings, which is increasing her strength. She's used ice packs, which have reduced her swelling. Still dealing with a low-grade fever, but no one seems to be too concerned - seems to be considered normal post-surgery. She's getting stronger, and walking helps clear her lungs - been suctioning a lot. Pain is still a significant issue - I think we'll be in the hospital at least one more night.</span></h3>
<h3 style="clear: both; text-align: left;">
<span style="text-align: left;">Nothing else to report. Have a wonderful Christmas, and thanks for your prayers! </span></h3>
</div>
<div class="blogger-post-footer">"...and he took their little children, one by one, and blessed them, and prayed unto the Father for them (3 Nephi 17:21)."</div>Colonelhttp://www.blogger.com/profile/15732841232964769114noreply@blogger.com0tag:blogger.com,1999:blog-1300925174232389707.post-65188035165816038992016-12-24T10:02:00.001-05:002016-12-29T10:59:11.143-05:00Day 2: Carolinas Medical Center<div dir="ltr" style="text-align: left;" trbidi="on">
Katie slept pretty well last night, but woke up in a lot of pain. This morning, she got out of bed at Dr. Matthews insistence, feeling quite light-headed. The rib pain makes it hard to move around much. We've started g-tube feedings to get her some strength, and have been trying to get a nebulizer treatment, as she says her chest hurts, but they still haven't filled that request. She has a low-grade fever, but the Dr. expected that.<br />
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<div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUY9-yoIo345BZLRVAZnfkKwq4hhWl4WrPXmkPl-oTle9iU4j4inGTI19G-kXOk_1FLTw8r0DgwYjB5HTwoC09gQBn0HqCW9OPtL6s_Kj0Uu6_7_MmYfHTQnJDfIcVVOId80sTETU27Gqn/s1600/Carolinas+Hospital.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUY9-yoIo345BZLRVAZnfkKwq4hhWl4WrPXmkPl-oTle9iU4j4inGTI19G-kXOk_1FLTw8r0DgwYjB5HTwoC09gQBn0HqCW9OPtL6s_Kj0Uu6_7_MmYfHTQnJDfIcVVOId80sTETU27Gqn/s320/Carolinas+Hospital.jpg" width="297" /></a> I'm not real impressed with this hospital - they are very slow to respond to requests, and they don't automatically do anything that is considered standard for trached patients. It's a very good thing that either Pam and I are here 24/7 or she wouldn't get the care she needs at all!<br />
<div>
<br /></div>
<div>
Today, she'll get to shower. Her tongue is quite swollen, so she can't swallow yet - I think that's the thing that panics her the most. Her pain is mostly under control, though we feel like we have to beg to get the meds when needed. Both Pam and I have been pretty insistent, and have thus inadvertenly scared off one of the cute young nurses. </div>
<div>
<br /></div>
<div>
This is not a great way to spend Christmas Eve and Christmas, but we knew that coming in. Enjoy this beautiful season, and keep Katie in mind as you pray.</div>
</div>
</div>
<div class="blogger-post-footer">"...and he took their little children, one by one, and blessed them, and prayed unto the Father for them (3 Nephi 17:21)."</div>Colonelhttp://www.blogger.com/profile/15732841232964769114noreply@blogger.com0tag:blogger.com,1999:blog-1300925174232389707.post-9040538783516005742016-12-23T11:19:00.001-05:002016-12-23T11:19:15.735-05:00Address<div dir="ltr" style="text-align: left;" trbidi="on">
If you'd like to send Katie a letter or card, here is the address where she'll be for the next 6 weeks:<br />
<br />
Katie Whicker<br />
C/O Ronald McDonald House, Room 212<br />
1613 East Morehead Street<br />
Charlotte NC 28207<br />
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This is a WONDERFUL place to stay. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi412xtUpjCy6j2gkf1SEPilbqt7Z8G54eviAZt5wfcH8q-F5Sz6dqP6G1y90p0EFBN6tbUcQT32tXS4RG0H-LvmxKe3asP1WmNZg-mH9dQsAwo9C4P3gDpShPLELtOnVisb0LF13uDWESO/s1600/20161223_105058.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"> <img border="0" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi412xtUpjCy6j2gkf1SEPilbqt7Z8G54eviAZt5wfcH8q-F5Sz6dqP6G1y90p0EFBN6tbUcQT32tXS4RG0H-LvmxKe3asP1WmNZg-mH9dQsAwo9C4P3gDpShPLELtOnVisb0LF13uDWESO/s400/20161223_105058.jpg" width="400" /></a></div>
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<div class="blogger-post-footer">"...and he took their little children, one by one, and blessed them, and prayed unto the Father for them (3 Nephi 17:21)."</div>Colonelhttp://www.blogger.com/profile/15732841232964769114noreply@blogger.com0tag:blogger.com,1999:blog-1300925174232389707.post-33492113459167353712016-12-23T09:50:00.000-05:002016-12-29T10:58:55.004-05:00Day 1: Post-Surgery Blues<div dir="ltr" style="text-align: left;" trbidi="on">
Yesterday was a very anxious day, as we were awaiting word on Katie's surgery, which turned out to be 6 1/2 hours long! It was a success, as declared by Dr. Matthews, which is good, but Katie was extremely agitated when she woke up. It's been a very difficult 24 hours. She looks good - much better than I expected, but the swelling hasn't really started yet. He harvested two adjacent ribs to create the ramus, condyle and fossa for her jaw. She's completely wired shut from the inside, which gives her a sense of claustrophobia, I think, and that's perhaps what made her so on edge last night (besides the pain). She's been resting very well since about 6 am.<br />
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Today she has to get up and move some, to prevent pneumonia, even though it will be painful. Dr. Matthews expects the ribs to be especially painful, but Katie kept telling me last night that her ribs didn't hurt, until 6 am. That's likely due to the constant electrical impulse buttons he's sutured into that area.<br />
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They'll change her meds this morning to oxycodone via g-tube so she doesn't itch so much with the morphine, though they already switched to dilaudid for the latest dose. We've done lots of suctioning of nose, mouth and trach through the night, I've sang to her and read to her, and we've prayed for calm. I'm anxious to trade places with Pam this morning so I can go back to the Ronald McDonald House and get some sleep. She went back at about 10:30 last night while I stayed here with Katie.<br />
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Thanks for all your prayers. Watching my 'little' girl go through this kind of ordeal is certainly NOT my favorite part of being a Dad! We all need to continue to pray that the rib grafts will take so that this jaw joint will stabilize. He'll get her on some Vitamin D this morning to facilitate the fusion of the bones.</div>
<div class="blogger-post-footer">"...and he took their little children, one by one, and blessed them, and prayed unto the Father for them (3 Nephi 17:21)."</div>Colonelhttp://www.blogger.com/profile/15732841232964769114noreply@blogger.com1tag:blogger.com,1999:blog-1300925174232389707.post-34909298283710791222016-12-20T10:46:00.003-05:002016-12-20T10:46:35.417-05:00High-Res 3D Imagery - Pre-Surgery<div dir="ltr" style="text-align: left;" trbidi="on">
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="clear: right; float: right; margin-bottom: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEieFRgXbOxKOSZcBN2kjk9YQXB-DKc3vL6iMFg-YnxuEAMRaN7rWNgF8YV0ffyfWgUh8_xuoiMfSyaXUwe3rGWU2iMIut2OWEwdxddVxUxcmNPYFq8k6bfNfqnrHQdLI9J4ceREb93XN0yV/s1600/left+jaw.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="308" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEieFRgXbOxKOSZcBN2kjk9YQXB-DKc3vL6iMFg-YnxuEAMRaN7rWNgF8YV0ffyfWgUh8_xuoiMfSyaXUwe3rGWU2iMIut2OWEwdxddVxUxcmNPYFq8k6bfNfqnrHQdLI9J4ceREb93XN0yV/s320/left+jaw.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Left Jaw</td></tr>
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<h3 style="text-align: left;">
These 3D images from the Mayo Clinic show Katie's jaw anatomy much more clearly than anything we've ever seen before. Most of us have a vertical bone (the ramus), which extends from the base of the skull downward. Then, the jawbone itself is meant to attach to the bottom of the ramus, and extends horizontally so as to align with the upper jaw.</h3>
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<h3>
Katie is missing the ramus entirely. Instead, she has only the lower jawbone, which is rotated upward without anything to attach to. This is what causes her open mouth posture, and the small mouth that her tongue cannot fit into.</h3>
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<h3>
In the surgery this Thursday Dr. Matthews will fashion two ramus (vertical) bones from her own ribs, and will attach the new bone from the base of her skull to the end of her jawbone, forcing that lower jaw to rotate upward. It is doubtful that he'll be able to completely close her bite so that her front teeth meet, due to the limitations of the soft tissue (skin, muscle, ligaments), but he will be able to get some of her back molars to meet, allowing her to once again chew.</h3>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnzyeV6uT4GuaS7UghIwnl_Szemg3xA_OaA5G71lvgvaqzD7XxEGJaOHumaI1c8VUAef3LMmOHhRVikLImh1LWPtL0WFHAk3vP3nUEQFTWqQzjfg9kxJV9GQn_Fj9SFDRD9BPZytoA5Plo/s1600/rigth+jaw.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="308" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnzyeV6uT4GuaS7UghIwnl_Szemg3xA_OaA5G71lvgvaqzD7XxEGJaOHumaI1c8VUAef3LMmOHhRVikLImh1LWPtL0WFHAk3vP3nUEQFTWqQzjfg9kxJV9GQn_Fj9SFDRD9BPZytoA5Plo/s320/rigth+jaw.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Right Jaw</td></tr>
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<h3>
The Dr. expects her to experience more pain from the removal of the ribs than from the face, which is interesting. She'll have her jaw wired shut for up to 6 weeks while the new bone heals and fuses. Pam & Katie will likely stay in Charlotte for that entire period, though I have to return after 2 weeks to go back to work.</h3>
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<h3>
This is an entirely different approach than we've taken before. Previously, the attempt was to GROW new bone through osteogenesis, and then "bend" the new bone while it was malleable, to rotate the lower jaw upward. Soft tissue forced that bent bone back into its original shape, and thus nothing was gained. This attempt makes much more sense mechanically, as it creates the normal architecture that makes for a functional jaw.</h3>
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<h3>
Katie was and is totally in control of the decision to proceed with this surgery. Now that she is an adult, we relegated all decision-making to her, and this is the result of much prayer and fasting. We pray for great success, and invite you to join with us in those prayers!</h3>
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<div class="blogger-post-footer">"...and he took their little children, one by one, and blessed them, and prayed unto the Father for them (3 Nephi 17:21)."</div>Colonelhttp://www.blogger.com/profile/15732841232964769114noreply@blogger.com0tag:blogger.com,1999:blog-1300925174232389707.post-54191509865204382272016-12-13T10:29:00.002-05:002016-12-13T10:29:20.924-05:00Jaw Surgery Deliberations<div dir="ltr" style="text-align: left;" trbidi="on">
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnuoJDZto95csythkkuJFEiNhadLL25ohrAMvgCB3pQEVblIWN5CNwKQWq4luqW-czW_MbNPRzcRXLpiSH3sDxm84D5VPFnC20ojrMIQC5Wk5NKex8lYchI42Nb4bOVtdy46sFOfs_lVka/s1600/KT+cat+%2526+dog+carrier.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnuoJDZto95csythkkuJFEiNhadLL25ohrAMvgCB3pQEVblIWN5CNwKQWq4luqW-czW_MbNPRzcRXLpiSH3sDxm84D5VPFnC20ojrMIQC5Wk5NKex8lYchI42Nb4bOVtdy46sFOfs_lVka/s320/KT+cat+%2526+dog+carrier.jpg" width="180" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><b>KT & her Christmas dog carrier;<br />We celebrated early due to surgery.</b></td></tr>
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<span style="font-size: 12.0pt; mso-bidi-font-size: 11.0pt;">Let
me share with you our path of deliberation over the last several months. We have been so determined to find a solution
to Katie's deteriorating jaw and teeth, that we decided to do a medical
"blitz" and see all the very best craniofacial doctors and hospitals
in the country last summer. Of course, we didn't go
back to Cincinnati, because our experience with Dr. Chris Gordon there was so
catastrophic. Here's what we have done,
however, along with a very brief synopsis of what we've been told:<o:p></o:p></span></div>
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<span style="font-size: 12.0pt; mso-bidi-font-size: 11.0pt;">1.
Dr. Nathan Adams (SLC): can't do anything about the jaw because there isn't
enough bone at the base of KT's skull to act as a backstop to a jaw joint. Wanted to try titanium, but decided it wasn't
feasible.<o:p></o:p></span></div>
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<span style="font-size: 12.0pt; mso-bidi-font-size: 11.0pt;">2.
Dr. Amir Dorafshar, Johns Hopkins (Baltimore): can't do anything about the jaw
because there is not enough bone. Anyone who says that CAN fix her jaw is way
off base and you should not consider their opinion. He also was considering the titanium route.<o:p></o:p></span></div>
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<span style="font-size: 12.0pt; mso-bidi-font-size: 11.0pt;">3.
Dr. Kevin Arce, Mayo Clinic (Minnesota): not sure if we can do anything, so we'll make
a 3D model of her skull and study it. Schedule surgery for 22 Dec and we'll let
you know whether or not we feel we can use titanium to build a jaw
or not. He has since stated that he cannot do the surgery right now - he needs more consultation and study with Dr. Matthew Carlson, Neurosurgeon, and Dr. Jonathan Morris, Neuroradiologist. He will call us on the 15th to discuss his findings.<o:p></o:p></span></div>
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<span style="font-size: 12.0pt; mso-bidi-font-size: 11.0pt;">4.
Dr. Matthews (North Carolina): famous for fixing jaws using bone and cartilage
from the patient (no titanium); received insurance approval to do jaw surgery on 22 Dec
(EXACT same day as Mayo Clinic's "holding" date), to work her jaw
with rib grafting.<o:p></o:p></span></div>
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<span style="font-size: 12.0pt; mso-bidi-font-size: 11.0pt;">So
you can see our confusion: from "Can't
be done!" versus, "Hey, I'm ready to do it." Katie desperately
wants to chew, and we know and trust Dr. Matthews, renowned for his jaw work. He is also the one who has been so instrumental in relieving her pain through the miHealth machine. We are concerned, however, about the use of
her own bone and cartilage, though we haven't ever tried that route - all of the past attempts have been through trying to grow "new" bone through osteogenesis (which didn't work). We have decided that titanium, which the new science generally
prefers, probably wouldn't work with her because it might eliminate some of her existing bone, which is very sparse to begin with. With own-body bone, there's
always the problem of resorption, which we have experienced twice during previous jaw distractions, but there is also the
issue of ankylosis, which other craniofacial doctors have warned us against,
when using the patient's own bone.<o:p></o:p></span></div>
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<span style="font-size: 12.0pt; mso-bidi-font-size: 11.0pt;">Katie has fasted and prayed about it, and since she is almost 21, we have let her make the decision. She has decided to go ahead with Dr. Matthews in North Carolina on the 22nd of December. He will take two ribs from a single side of her rib cage, to form into the ramus and condyle missing in her jaw. Then he'll wire her jaw shut for up to 6 weeks to allow it to heal. Pam and Katie will be out there in NC for the entire 6 weeks; I'll have to come home on 4 Jan to go back to work.</span></div>
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<span style="font-size: 12.0pt; mso-bidi-font-size: 11.0pt;">We are NOT looking forward to this - it is HARD! But Katie thinks it's the best option. She has been quite stable lately, since the nerve repair in early October really did help reduce her pain significantly. We certainly don't want to get her back into a situation where she suffers from nerve pain for another 5 years! Please pray with us that this will work successfully. Katie has had a couple of dreams about it, and feels she has received confirmation to go ahead with it, so we're supporting her decision.</span></div>
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<div class="blogger-post-footer">"...and he took their little children, one by one, and blessed them, and prayed unto the Father for them (3 Nephi 17:21)."</div>Colonelhttp://www.blogger.com/profile/15732841232964769114noreply@blogger.com0tag:blogger.com,1999:blog-1300925174232389707.post-11925162675115261102016-11-30T11:24:00.000-05:002016-11-30T11:24:12.982-05:00Peripheral Nerve Surgery<div dir="ltr" style="text-align: left;" trbidi="on">
5 October 2016, Wednesday<br />
<br />
Katie had the nerve surgery today that will hopefully eliminate her facial pain. Here was his consultation report:<br />
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<b><span style="font-family: "Times New Roman","serif";"><i>"It is my impression, based upon
the history and physical examination, and nerve blocks, that you have a painful
neuroma of the zygomaticofacial nerve. This neuroma can be resected by going
through the existing scar, with the nerve being cut back and placed deeply into
whatever soft tissue or maxillary sinus remnant that we find. The positive nerve
block suggests a 90% chance of a good to excellent relief of pain."</i><o:p></o:p></span></b></div>
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<div class="MsoNormal">
<span style="font-family: "Times New Roman", serif;">We did get the surgical report, but I don't have access to it right here. I'm writing this 2 months later, and Katie's pain has substantially been reduced, though not entirely eliminated. We are very happy with the results, and feel that further healing time will lead to even better results. Thank you, Dr. Lee Dellon and Dr. Amir Dorafshar!</span></div>
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<div class="blogger-post-footer">"...and he took their little children, one by one, and blessed them, and prayed unto the Father for them (3 Nephi 17:21)."</div>Colonelhttp://www.blogger.com/profile/15732841232964769114noreply@blogger.com0tag:blogger.com,1999:blog-1300925174232389707.post-55979130612363340152016-08-26T22:25:00.003-04:002016-08-26T22:26:00.000-04:00The Mayo Clinic<div dir="ltr" style="text-align: left;" trbidi="on">
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We were very impressed with the facility, doctors and staff
at the Mayo Clinic yesterday. A Resident
Doctor Ettinger first spoke with us; he seemed well prepared, having obviously
studied Katie’s CT scan from 2013 very well, thus being aware of her lack of
facial bone. He spoke very intelligently
about the challenges of being able to create a ‘fix for her jaw. He created no false hope, stating from the
outset that they would have no immediate answers for us, and would need time to
meet with craniofacial, maxillofacial, prothedontists and the company who
manufactures the hardware they would have to use. </div>
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" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img alt="Image result for mayo clinic logo" border="0" height="200" src="data:image/png;base64,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" width="178" /></a>Then, Dr. Arce came in.
Originally from Puerto Rico, we really liked him. He, too, offered no false hope, emphasizing
the reality of Katie’s situation. Their
goal is to ensure that whatever they do, they do not make things worse. He implied that due to her previous
surgeries, scar tissue, and other soft tissue limitations (i.e. skin) and the
osteomyelitis (bone infection) would significantly restrict anything they could
do. He stated that there was <u>no</u>
possibility of getting her front teeth to meet, so he asked Katie what her goal
was. Katie stated that she’d merely like
to have a couple of back teeth meet so she can chew again. She told him she’d lost almost 20 pounds in 4
months because those teeth that used to meet back there no longer met at all,
and that her diet had been extremely restricted because of the new situation.</div>
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<br /></div>
<div class="MsoNormal">
We liked that he asked what her desires were. </div>
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<br /></div>
<div class="MsoNormal">
We also learned a few things: </div>
<div class="MsoNormal">
</div>
<ul style="text-align: left;">
<li><span style="text-indent: -0.25in;">It is likely that the lower jaw distractions
previously done (2004 and 2011) have NOT retracted as much as we’d thought;
rather, the length gained is still there, it is just that Dr. Gordon’s
(Cincinnati) method of trying to “bend” the elongated bone, rotating the lower
jaw upward, didn’t hold, and instead, straightened.</span><span style="text-indent: -0.25in;"> </span><span style="text-indent: -0.25in;">Now, it is likely that that lower jaw bone is
too long for a rebuilt jaw joint.</span></li>
<li><span style="text-indent: -0.25in;">Building a jaw joint may not be possible,
depending on what the skull base surgeon finds.</span><span style="text-indent: -0.25in;">
</span><span style="text-indent: -0.25in;">In other words, the jaw joint is a ball-and-socket joint similar to a
hip joint.</span><span style="text-indent: -0.25in;"> </span><span style="text-indent: -0.25in;">The “ball” part of the joint
has to have a stopper behind it called a </span><i style="text-indent: -0.25in;">fossa</i><span style="text-indent: -0.25in;">.</span><span style="text-indent: -0.25in;"> </span><span style="text-indent: -0.25in;">Dr. Nathan Adams in SLC did not continue with
Katie because he did not think the base of Katie’s skull had enough bone to
provide that fossa, and that the ball, or end of the ramus (vertical bone of
the jaw) would be able to push beyond the base of the skull into her
brain.</span><span style="text-indent: -0.25in;"> </span><span style="text-indent: -0.25in;">That’s why he referred us to the
Mayo Clinic, saying that they are the ONLY group that could even potentially
perform such a surgery.</span></li>
<li><span style="text-indent: -0.25in;">They would not use bone or cartilage from her
own body, if indeed they can do anything.</span><span style="text-indent: -0.25in;">
</span><span style="text-indent: -0.25in;">They would have an artificial jaw manufactured.</span><span style="text-indent: -0.25in;"> </span><span style="text-indent: -0.25in;">Dr. David Matthews (North Carolina) has proposed
using rib and leg bone to build the jaw joint.</span><span style="text-indent: -0.25in;">
</span><span style="text-indent: -0.25in;">Such efforts are prone to </span><i style="text-indent: -0.25in;">ankylosis,
</i><span style="text-indent: -0.25in;">where bone pieces grow together causing stiffness and ultimate seizure of
any movement.</span><span style="text-indent: -0.25in;"> </span><span style="text-indent: -0.25in;">Artificial material has no
ability to grow into itself, thus preventing any such complication.</span><span style="text-indent: -0.25in;"> </span><span style="text-indent: -0.25in;">(Though obviously, there are other
complications with artificial materials.</span></li>
<li><span style="text-indent: -0.25in;">The </span><i style="text-indent: -0.25in;">condyle</i><span style="text-indent: -0.25in;">
is the “ball” part of the joint, which, of course, is completely missing in
Katie.</span></li>
</ul>
She had a new CT scan at the facility, with the goal of
creating a 3D model for the team of doctors to study. The team meets this Thursday.<br /><br /><br />
<div class="MsoNormal">
We also saw their prosthodontist on the team, named Dr.
Salinas. None of these doctors was
convinced that a denture would be able to be devised to help in Katie’s case
because of the lack of bone. We had to
inform Dr. Salinas that Dr. Egbert, SLC prosthodontist, was convinced that
dental implants were not possible in most areas of Katie’s mouth due to the
lack of bone density. (He once did a
bone density measurement and found much of her jaw area to have a <i>negative</i> density reading!)</div>
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<br /></div>
<div class="MsoNormal">
They sent us up to the medical photographer, who took
pictures of her face and inside her mouth. </div>
<div class="MsoNormal">
<br /></div>
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They will use those, and the new CT scan, to build a 3D model of her
facial anatomy.</div>
<br />
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
They will contact us with a plan when they have time to
study it and put a plan together, and then they will notify us of what they think they can and cannot do. A very worthwhile visit!</div>
</div>
<div class="blogger-post-footer">"...and he took their little children, one by one, and blessed them, and prayed unto the Father for them (3 Nephi 17:21)."</div>Colonelhttp://www.blogger.com/profile/15732841232964769114noreply@blogger.com1tag:blogger.com,1999:blog-1300925174232389707.post-45505667296761398582016-08-07T11:20:00.001-04:002016-08-07T11:20:34.860-04:00Prosthodontist & MRI<div dir="ltr" style="text-align: left;" trbidi="on">
We sure enjoyed staying with our friends, the Lawvers, in Dale City VA Thu & Fri nights. They are so gracious to make us so comfortable!<br />
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Friday was a real adventure. Dr. Dorafshar, the craniofacial surgeon, wanted us to see the proshtodontist he works with before we left, so we went directly to the office of Dr. Sinadi for a quick visit. He was awesome! We really liked him, and we liked the fact that these guys want to work as a team (surgeon and prosthodontist). We again got great reviews about Dr. Dorafshar. We thought we'd have a team approach at Cincinatti Children's Hospital in 2011, but Dr. Gordon instead worked alone, and thus, it was impossible for him to accomplish the overall goal.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLzyVX06r2f-1wOk07QbSedx_ef2M27c8Ps-ExcJdGuFBGXHKJgHBghKG_5xth0vCCpybC2tsc3KCCyeuttu9wWwEGyLXoJAJRIHeFo7H_7TYSaCotZe9xZfHaaI6UusP3caHI0Wht24uA/s1600/2016-08-04+12.44.34.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLzyVX06r2f-1wOk07QbSedx_ef2M27c8Ps-ExcJdGuFBGXHKJgHBghKG_5xth0vCCpybC2tsc3KCCyeuttu9wWwEGyLXoJAJRIHeFo7H_7TYSaCotZe9xZfHaaI6UusP3caHI0Wht24uA/s640/2016-08-04+12.44.34.jpg" width="360" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This is actually Drs. Dellon & Swanson from Thursdays nerve exam</td></tr>
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Next, we went to get the "Tesla" MRI, which is supposed to be 3X the resolution of a regular MRI. We ran into some difficulties when we couldn't get the steel caps off of KT's ear implants - which MUST be removed before any MRI can happen! The implanted part of her hardware is all titanium, and is MRI compatible, but those caps are steel, so they can connect to the magnets that hold on her prosthetic ears. Luckily, Paul Tanner, the guy who made her ears, has a colleague RIGHT THERE at Johns Hopkins, who does the exact same type of work he does. So, while waiting for the MRI (they were way behind schedule), we ran over to Juan Garcia's office, and he removed those steel caps. He had real trouble with one of them, it was on so tight. So even if we had the right tool, if we'd have tried to remove the caps, we'd have ended up removing the entire abutment, which would have immediately closed over and been impossible to get back on. <br />
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Unfortunately, after all the hoopla of getting insurance approval on time to be able to get this special MRI while we're still in town, the hardware in her head made it impossible for them to get the 3X images, and instead, were only able to get 1.5X the normal resolution. Oh, well - we did what was humanely possible.<br />
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Because we had to delay the MRI until Friday, we didn't get back to see Dr. Matthews in NC for one last pain treatment, so KT's pain skyrocketed yesterday on our drive from VA to NC, and she's quite miserable as we prepare to fly home today (Sunday).<br />
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I purchased our tickets to Minneapolis for later this month, so we'll continue our medical blitz so we have all options in front of us for KT to make a well-informed decision as to which way to go. </div>
<div class="blogger-post-footer">"...and he took their little children, one by one, and blessed them, and prayed unto the Father for them (3 Nephi 17:21)."</div>Colonelhttp://www.blogger.com/profile/15732841232964769114noreply@blogger.com1