Saturday, April 27, 2013
Sweet Sleep
Jaw Distraction Day 4
Friday, April 26, 2013
Ready to Leave
Chipmunk Cheeks
Wednesday, April 24, 2013
Surgery Went Well
It's 7am on Wednesday morning, Faith's surgery went really well yesterday but I was too tired to write anything so I just uploaded some photos from my phone.
The surgery went relatively fast yesterday, she went in at 10am and was out by about 12:30. Dr. Cotton (ENT) looked at her airway first and they decided to wait to do her tonsillectomy at the next surgery when her jaw is bigger and she has more space for them to maneuver in. I was a little annoyed with this because we could have done surgery last week if they weren't going to do the tonsillectomy and now Dr. Cotton will be in England when we do the next surgery (May 22), so he said someone else can do it, which is another change when we scheduled it over the phone. Then he told his schedulers that he needed to be the one to do it. Rescheduling wouldn't be a big deal, if it hadn't been for her missing her last days of school, but in the big scheme of things it will all work out fine. I am planning to throw an end of year /welcome back Faith party and invite all the first graders (really just a park gathering with a big cake!)
Anyway, Dr. Cotton did a bronchoscopy and then came out and spoke to me, showed me pictures of her airway, the tonsils, her trachea and the top of the bronchi (where the two branches of the lungs split off at the top). He said her airway looks very good, no issues other than her jaw. So they will plan to remove her tonsils and do a scope through her nose to look at her adenoids to decide whether to remove those as well.
Once Dr. Cotton completed his part then Dr. Gordon started working on her jaw. First he took off the metal plate that was connecting her original jaw with the new scapula bone they added last summer and he said it has healed really well. Then he decided where to make the cut on each side. On her left, where they did the graft, he cut in front of that on her original jaw bone, on her right side which was not missing any bone, he cut further back starting in the ramus bone and going through the mandible bone. It's hard to explain in writing, but it's called a saggital split, in other words, instead of just cutting the bone straight across the bone, it's a length-wise cut, giving much more surface for new bone to grow. Think of it like putting the palms of your hands together then then sliding one forward and one backward, compared to just your fingertips meeting and then being pulled apart.
After making the cuts, I think he put a wire through the front of her jaw, across the chin and that wire comes out of jaw through the skin and attaches to the purple halo device, called a Rigid Extraction Device (RED) which is screwed up against her head (not into the skin/skull, just pressing against the sides of her head). So this is completely different than his traditional external jaw distraction or the internal distractors she had when she was 2. There are no actual pins, just this wire tied to the RED device and anchored to the front of her jaw. We turn two screws on the RED device that shorten the wires, which pulls her jaw forward a milimeter each time we turn it. We have to turn the pins twice a day, so about 10mm/1cm every 5 days. I think we will be turning for about 3 weeks and then we stop and let it consolidate for aother week or so.
I turned the pins last night and again this morning which didn't seem to bother Faith. It will probably get a little more painful as she heals from the surgery itself and as the skin and soft tissue around the jaw becomes more stretched out. This is one of the things I hate about Dr. Gordon's distractions - they end up looking like the character from the Scream movie and apparently thats what they tell parents nowadays!
We switched Faith from Morphine to Oxycoton (sp?) this morning, which is given orally (or through the G-tube in Faith's case) and not the IV so they were able to disconnect her IV tubing which means she is able to get out of bed a lot more easily to go to the bathroom. She's been getting out of bed since yesterday evening to do that and it was a pain having to disconnect her from the pulse ox and the leads for heart monitor and her feeding tube and then unplug the power to the IV pole, and maneuver that around the bed and bathroom door that were too close together, oh and help Faith get out of bed and give her a hand in case she felt wobbly. We still have to disconnect the pulse ox and heart monitor, but just not have the pole to deal with was a big improvement! Faith is doing well sitting up and getting in and out of bed by herself now, but she still can't use her left arm because they won't actually take her IV out until we are ready to be discharged tomorrow. I'm guessing we could have gone "home" today, but it's good to have one more night to have more time to ask questions and have access to any supplies we need. The other big challenge is that I'm having to suction her every 15 mins or so, and it's very tiring! They have her bed low so she can get in and out of it easily but that means I'm bending over a lot to suction and my back is aching!! I've also gone through dozens of suction catheters, maybe a hundred by now! And since we almost never suction her at home, we definitely didn't pack enough to get through the rest of the weekend at the Ronald McDonald House if this keeps up!
Faith is doing pretty well overall, not talking but trying to sign and is using more of her finger spelling for signs she doesn't know or remember anymore. I think she'll start trying to talk soon, although it might be even harder to understand her right now.
Well that's about it for now. It's taken me almost 5 hours to write this as I've had to stop and suction or help Faith get out of bed to go to the bathroom, or talk with the residents or nurses. Being in the hospital is hard work!! Looking forward to being back at the Ronald McDonald House tomorrow night. I'll try to post some more pictures soon after we try to clean up some of the dried blood on her chin.
Thanks to everyone for reading, posting comments, sending emails and all the good thoughts and prayers, we really appreciate it.
Day at the Cincinnati Zoo
This was Faith's favorite animal at the zoo, the Cheetah. They do a wonderful show running two Cheetahs. This is the older one, Sarah.
Tuesday, April 23, 2013
Monday, April 22, 2013
We made it to the Ronald McDonald House!
We got here safe and had some fun tonight checking out the house and playground and of course saying hi to Ronald! Hope you can watch this video!
Sunday, April 21, 2013
It's Finally Here - Cincinnati Trip
I don't know why it's taken me so long to post, maybe I just didn't want to say anything again until it was definite, or we were just busy, but that's always the case for everybody, isn't it?
Faith's surgery is happening this week, it was delayed from last week to this week because the ENT surgeon who is doing her tonsillectomy was not available on the 18th, so everything moved out a week. So, we fly out tomorrow, into Dayton OH, the hospitall shuttle will pick us up and take us to the Ronald McDonald House which we got into for both before and after the hospital stay.
Surgery is Wednesday where they will do the jaw distraction and a tonsillectomy & adenoidectomy. Then she will be in the hospital for 2 nights and then we go back to the Ronald McDonald House for about 4 days and fly home on Monday, 4/29.
Faith is mostly excited about it and a little nervous at the same time. I will see if we can get some tickets to do something fun on Tuesday, before the big day, maybe the zoo or maybe another Cincinnati Reds baseball game.
I will plan to post some "before" pictures tomorrow/Tuesday if I can.
The one thing I've been pretty bummed about since it was rescheduled is that Faith's last surgery is now on her last day of school, which means she will miss everything from now until school is out. So, her last day of school was this past Wednesday - we took her out a week before the surgery so we could keep her healthy.
Her class held a little party for her and she brought home about a dozen beautiful cards wishing her well. It was super sweet. She loved them all, but especially the card from a boy in her Deaf Hard of Hearing class who she says is her boyfriend!! I won't say his name here since I'm not sure if he knows he's her boyfriend!!
Last weekend we were in Branson Missouri for Fred's niece's wedding, which was so beautiful and a great little family reunion for all the Kargoll's. Everyone was there and it was a really nice time. Faith especially enjoyed getting swung all around by her cousin Ian who is a gymnist and coach and loved picking her up and throwing her around!! It was actually the first time they had met as Ian lives in Alaska and we haven't seen him in many years!!
Lauren brought Carly (now 3yrs old) and Dana and Aaron brought baby Hallie and Ryan came as well, so we had a total of 10 in our traveling group! We had so much fun, plus two slightly scary pool incidents. The first one was with little Carly who is taking swimming lessons now and is quite comfortable in the water, but not tall enough to stand in the 3 foot section, so she was mostly playing on the stairs and then started holding on to the edge of the pool and walking around the edge of the 3 ft section. I had been playing with her in the pool and then I left her on the stairs (about 5 feet from where Lauren was sitting outside the pool) and I took Faith for a ride into the 5ft end of the pool. So, next thing I saw was Carly kinda floating on her back in a bit of a sitting position, but actually sinking just a couple feet away from the stairs. There was no way I could get over to her quickly especially with Faith in my arms, but luckily both Lauren and Fred jumped up and Fred jumped in quick and grabbed her before she really went under. She was just staring at Fred with these big eyes and just starting to get scared. She was fine and all was well. The next day though, I let Anthony and Faith go swimming again, but I didn't get in. Faith is tall enough now to stand in the 3 ft end with the water just up to her armpits so it's fine for her trach. But she decided to play with a litttle blow-up float and was trying to sit on it. I told her she had to stay by the stairs and hold onto the railing because of course the float would pop out from under her and she could fall under water. Becasue of her trach this could immediately drown her since the water could just flow right into her lungs. And then it happened. She got a foot or so away from the stairs (basically the same exact spot where Carly started sinking) where she was playing with Anthony and the float when she went under. I jumped up and ran to the edge of the pool yelling for Anthony to grab her which he did without any hesitation and then I was able to lift her out of the pool. Amazingly, it appeared that she didn't have any water. I really can't explain how no water went down her trach tube, it doesn't make any sense to me, I thought for sure she would need to go to the hospital but she was perfectly fine. Justt coughed a couple drops out of her trach! Anthony was so fast in grabbing her and lifting her up, he was a hero! Grandma and Grandpa were sitting with me at the pool when it happened and they told him how proud they were of him and he was so modest about it -- he said, "I'm a cub scout almost a boy scout and that is just what we do." How cool. I told his den leader about it and he suggested we write a story about it and submit it to the Boy's Life magazine, so I need to help him do that.
Well, as usual, when I finally find time to write, it turns into a book!! We have to run to the store now to finish getting ready for our trip, so I have to sign off now.
Love you all,
Robin
Faith's surgery is happening this week, it was delayed from last week to this week because the ENT surgeon who is doing her tonsillectomy was not available on the 18th, so everything moved out a week. So, we fly out tomorrow, into Dayton OH, the hospitall shuttle will pick us up and take us to the Ronald McDonald House which we got into for both before and after the hospital stay.
Surgery is Wednesday where they will do the jaw distraction and a tonsillectomy & adenoidectomy. Then she will be in the hospital for 2 nights and then we go back to the Ronald McDonald House for about 4 days and fly home on Monday, 4/29.
Faith is mostly excited about it and a little nervous at the same time. I will see if we can get some tickets to do something fun on Tuesday, before the big day, maybe the zoo or maybe another Cincinnati Reds baseball game.
I will plan to post some "before" pictures tomorrow/Tuesday if I can.
The one thing I've been pretty bummed about since it was rescheduled is that Faith's last surgery is now on her last day of school, which means she will miss everything from now until school is out. So, her last day of school was this past Wednesday - we took her out a week before the surgery so we could keep her healthy.
Her class held a little party for her and she brought home about a dozen beautiful cards wishing her well. It was super sweet. She loved them all, but especially the card from a boy in her Deaf Hard of Hearing class who she says is her boyfriend!! I won't say his name here since I'm not sure if he knows he's her boyfriend!!
Last weekend we were in Branson Missouri for Fred's niece's wedding, which was so beautiful and a great little family reunion for all the Kargoll's. Everyone was there and it was a really nice time. Faith especially enjoyed getting swung all around by her cousin Ian who is a gymnist and coach and loved picking her up and throwing her around!! It was actually the first time they had met as Ian lives in Alaska and we haven't seen him in many years!!
Lauren brought Carly (now 3yrs old) and Dana and Aaron brought baby Hallie and Ryan came as well, so we had a total of 10 in our traveling group! We had so much fun, plus two slightly scary pool incidents. The first one was with little Carly who is taking swimming lessons now and is quite comfortable in the water, but not tall enough to stand in the 3 foot section, so she was mostly playing on the stairs and then started holding on to the edge of the pool and walking around the edge of the 3 ft section. I had been playing with her in the pool and then I left her on the stairs (about 5 feet from where Lauren was sitting outside the pool) and I took Faith for a ride into the 5ft end of the pool. So, next thing I saw was Carly kinda floating on her back in a bit of a sitting position, but actually sinking just a couple feet away from the stairs. There was no way I could get over to her quickly especially with Faith in my arms, but luckily both Lauren and Fred jumped up and Fred jumped in quick and grabbed her before she really went under. She was just staring at Fred with these big eyes and just starting to get scared. She was fine and all was well. The next day though, I let Anthony and Faith go swimming again, but I didn't get in. Faith is tall enough now to stand in the 3 ft end with the water just up to her armpits so it's fine for her trach. But she decided to play with a litttle blow-up float and was trying to sit on it. I told her she had to stay by the stairs and hold onto the railing because of course the float would pop out from under her and she could fall under water. Becasue of her trach this could immediately drown her since the water could just flow right into her lungs. And then it happened. She got a foot or so away from the stairs (basically the same exact spot where Carly started sinking) where she was playing with Anthony and the float when she went under. I jumped up and ran to the edge of the pool yelling for Anthony to grab her which he did without any hesitation and then I was able to lift her out of the pool. Amazingly, it appeared that she didn't have any water. I really can't explain how no water went down her trach tube, it doesn't make any sense to me, I thought for sure she would need to go to the hospital but she was perfectly fine. Justt coughed a couple drops out of her trach! Anthony was so fast in grabbing her and lifting her up, he was a hero! Grandma and Grandpa were sitting with me at the pool when it happened and they told him how proud they were of him and he was so modest about it -- he said, "I'm a cub scout almost a boy scout and that is just what we do." How cool. I told his den leader about it and he suggested we write a story about it and submit it to the Boy's Life magazine, so I need to help him do that.
Well, as usual, when I finally find time to write, it turns into a book!! We have to run to the store now to finish getting ready for our trip, so I have to sign off now.
Love you all,
Robin
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