Kyle has been very sick the last month. In fact he got released from the hospital again on Monday Dec 23,2013. He is improving finally I hope. One thing that happens with Kyle is that he stops vocalizing and signs less than usual. He also yells a lot. Tonight Dimitri was getting a little tired of Kyle's yelling. I asked him why he thought Kyle was screaming.
He said "because Kyle needs a voice".
How true. Dimitri volunteered to be Kyle's voice.
The little pearls of parenthood. Sigh
Spring
Our Treasures
Friday, December 27, 2013
Wednesday, December 18, 2013
Tuesday, December 17, 2013
Fwd: Heads up
So much fun! I look at things from too broad a perspective sometimes. Yet this is my reality. Here is another one of those time. From November till now the following events have happened:
Spring ran 1/2 marathon
Kyle hospitalized for enterocoloitis and delayed moms anniversary trip to the Bahamas
Spring and Alan went to the Bahamas
Alan came back to the USA and went to work for 10 days
Spring and Kyle went to Cincinnati Ohio where we learned that Kyle needs airway reduction and ear reconstruction urgently.
Kyle had bilateral strabismus repair
Spring and Sierra got sick with fever, chills, nausea and vomiting and diarrhea
Sierra still has a fever of 101.7-103.7 four days later.
Kyle, dimitri and Alan are all getting sick this morning.
The Bean house has been under construction daily for the past month.
I'm scheduled to pick up lauren on Thursday and meet with her psychD to discuss discharge criteria. Which makes me nauseated just thinking about that whole experience.
Christmas is in 8 days. Not one gift has been wrapped. Not one treat has been made. A few decorations are up.
Kyle is on the line for turning very south and needing hospitalized.
Any wonder I can't sleep???!!!!! I'm going running.
Spring
Begin forwarded message:
From: Spring Bean <springcbean@gmail.com>
Date: December 17, 2013 at 6:45:14 AM MST
To: Mom Turner <loisturnerndr@gmail.com>, Dave Turner <dturnerndr@gmail.com>
Subject: Heads up
Dear mom and dad,
So Saturday we all got sick. Sierra and I had a fever and vomiting and diarrhea. Sierra still has a fever of 100-103.7. Dimitri, Alan and Kyle are sick now. Not as sick as Sierra appears to be,but heading there soon. He is throwing up and stooling out and has a fever of 100.7 as of an hour ago.
I expect to be well before you come for christmas next week. However, the hospital for Kyle is not out of the question. If that happens I won't be going to pick up lauren and the chair. If you guys would pick her up on Friday she can be home alone while you go to the temple. We can frame it as a test and she seems ready for that responsibility as we are discussing graduation in the near future and she will be alone then as well at times.
I'll need to chair brought up too. If there is no precipitation I don't care if the trailer is open or not. I also don't care if you take home the wood or not. I'm flexible on that. And I don't care which day you end up in Boise. As you always said "beggars can't be choosers". 😉 seriously though I've got bigger things to worry about.
So this plan isn't for sure till Kyle declares what his body needs. Just wanted to give you a heads up because when I was praying for him this morning instead of peace I started seeing who I could ask for what help to make the necessary things happen in the next two weeks. That chased away any sleep I hoped I might have gotten since I was up till 11 last night and up by 5 now and only barely better myself. (Yesterday was the first day I ate and was out of bed for any length of time since Saturday).
And no Dad, I'm not having fun yet.
I'll keep everyone posted. Well at least you.
Love,
Spring
Friday, December 13, 2013
Merlin at work
Kyle update 12/13/13
Kyle had surgery today for exotropia of his eyes and a dental exam. Prior to that he woke at 2;30 am dry heaving. He slept fitfully till 5:00-am at which point he was so uncomfortable that he couldn't sleep (guess who else didn't sleep). As we pulled up to he hospital he threw up. Hooray (or not). Some ladies walking nearby asked if I needed some help. Well maybe a little...thanks for noticing
Anyway, he had the surgery after a lengthy discussion about safety. Anesthia decided we could proceed. The surgery went smoothly. And we are home and he is resting.
He has had a lot of hard medically related days but this day he really suffered. Poor boy was miserable. He is having diarrhea and his eyes hurt and his vision is different. He is pretty upset about the while thing. I truly hope he can have some relief tomorrow.
Night night.
Spring
Anyway, he had the surgery after a lengthy discussion about safety. Anesthia decided we could proceed. The surgery went smoothly. And we are home and he is resting.
He has had a lot of hard medically related days but this day he really suffered. Poor boy was miserable. He is having diarrhea and his eyes hurt and his vision is different. He is pretty upset about the while thing. I truly hope he can have some relief tomorrow.
Night night.
Spring
Wednesday, December 11, 2013
ENT update
So in my efficient fashion, I have found a local ENT to provide medical management of Kyles Ent needs. His name is Jacob Robison he is new to Boise and we just left his office. Kyle now has a local ENT for medical management and coordination of his hearing loss, his airway issues, his sinus issues, and his ear infection issues. The specific pieces will be managed by Dr Clough Shelton in Salt Lake City as the ear surgeon. And Dr. Sally Shott in Cincinnati as the airway surgeon. And Dr. Steve Jensen as the audiologist in Logan Utah. Sinuses and ear infections and direction of care will be managed by Dr. Robinson here in Boise. This is a big relief to have this piece in place.
Dr. Robinson also was very reassuring that I have the best people for Kyles complicated needs already involved. He said Dr. shot in Cincinnati is the best at airway management for kids with down syndrome and airway surgeries. He said that Clough Shelton in Salt Lake is the best ear surgeon in the area. That is very reassuring to me.
Kyle needs to have a right tympanoplasty revision. He also needs to have a tube in the left ear as soon as possible or a left tympanoplasty. The tympanoplasty is where the ear is cut and folded forward and the inner ear exposed and worked on. Then the part of the ear that you see is reattached to his little head. Very sad. Pretty sore.
This needs to happen before the end of January. With that said the airway surgery will likely be March. And hopefully we can bring Lauren home in February. However Lauren's return depends entirely on her.
So now the monster from last week is smaller. The portion that remains is to get all the medical records transferred hither and thither. At least it's coming together smoothly and before Christmas.
Spring
Dr. Robinson also was very reassuring that I have the best people for Kyles complicated needs already involved. He said Dr. shot in Cincinnati is the best at airway management for kids with down syndrome and airway surgeries. He said that Clough Shelton in Salt Lake is the best ear surgeon in the area. That is very reassuring to me.
Kyle needs to have a right tympanoplasty revision. He also needs to have a tube in the left ear as soon as possible or a left tympanoplasty. The tympanoplasty is where the ear is cut and folded forward and the inner ear exposed and worked on. Then the part of the ear that you see is reattached to his little head. Very sad. Pretty sore.
This needs to happen before the end of January. With that said the airway surgery will likely be March. And hopefully we can bring Lauren home in February. However Lauren's return depends entirely on her.
So now the monster from last week is smaller. The portion that remains is to get all the medical records transferred hither and thither. At least it's coming together smoothly and before Christmas.
Spring
Tuesday, December 10, 2013
Monday, December 9, 2013
Friday, December 6, 2013
Update on Kyle and the Bean life
I just arrived back in Boise after being gone for 10 days. These last 10 days sum up our life pretty well. However there is merit to going back to rhe first of November to capture the last month of our life. On November 2 Kyle was hospitalized for enterocolitis. That is a complication of a normal G.I. bug that made Kyle need IV antibiotics and bowel rest because of his underlying medical problems with his bowels. Unexpected hospitalization is always stressful and traumatic. This round was made more intense by the fact that I took Kyle to the hospital mere hours before I was supposed to get on an airplane to leave to go to the Bahamas to celebrate my 20th anniversary with my husband. As it worked out Alan got to go to the Bahamas and spend just over two days without a wife at a couples only resort celebrating our 20th anniversary. I did get to join him once Kyle was out of the hospital. Once there I enjoyed myself immensely! Great food, great diving, great weather, great sailing,great paddle boarding, great time with my husband.
We came home after the anniversary trip and Alan went back to work. This is classic for us. And I felt like life had been dropped on my throat the way a 75 pound barbell may feel. I hear that this is normal -to have a very difficult time getting back into the daily grind after having a very pleasant time away. Pretty unfun.
So following surviving that, I packed up the rest of my kitchen and emptied the lower portion of my home in order for the necessary repairs from the water damage that happened in July to commence.
The timing of this necessitated me cooking a turkey in an oven roaster that was plugged in to a floor outlet and set on the plywood floor of our home. And the other parts of Thanksgiving dinner being cooked on the outside grill or in the microwave. Then we loaded all of the food up and hauled it over to grandma and grandpa Bowdens house to celebrate Thanksgiving the Sunday before the actual date in order to include Alan in our Thanksgiving celebration. We had a wonderful day and it felt as if we actually had celebrated Thanksgiving on Thanksgiving day. I couldn't figure out why everyone kept telling me happy thanksgiving on Monday and on Tuesday and on Wednesday.
Then I began packing our family up and went to a hotel a few blocks away from our home so the hardwood that was newly installed could be sealed. From there the kids and I drove to my parents house while Alan worked over thanksgiving.
At my parents house my brother and his family of four kids and wife were there as well. Each family slept in one room and the downstairs play space was taken up by two tables in order to seat us all. Cozy doesn't quite capture the full experience. Yet we have many fond memories of the few days of us all together under one roof for Thanksgiving. Grandma Turner presented a beautiful family Thanksgiving meal and we all took turns watching kids so that the adults could take their turns going Christmas shopping and taking advantage of Black Friday sales. I also want to say that Lauren and Sierra were marvelous helpers during this period of time with all of the little children. Sadly Sierra had a fall on the ice while she was practicing one day in her new ice skates.
The result was a trip to the emergency room where we left with crutches and a brace. She doesn't have a break. But she hurts there may be something wrong that an MRI may be able to show us. It's likely that the recovery time is looking like 3 to 6 weeks. And we are still hoping to avoid surgery for her knee.
So from there Kyle and I packed our bags and got in our car and drove to the Salt Lake airport where we got on a plane and flew to Cincinnati Ohio. This time we went to Cincinnati to be seen and worked up in the sleep disorders clinic. We had a dreadful schedule with a sleep study followed the next day by Kyle not being able to eat anything until he was sedated for an MRI at two in the afternoon. Then back early the next morning to meet the new doctors who provided us the guidance we sought from them.
Funny thing about guidance. It usually leads to much more work, sacrifice and heartache. It takes so long to get this guidance that on the return trip we ended up missing our afternoon flights. Which resulted in us flying later but still arriving in Salt Lake on the right day. However I didn't get into bed until my body thought it was 3 o'clock in the morning. Which ended up being only 1 o'clock in the morning mountain standard time. All part of the fun...
The doctors recommendation is to do a tongue revision and tongue tethering surgery for Kyle because he does have complete airway collapse while he sleeps. From the tests that they did, they also found that Kyle's upper mandible is too small. Thus if the first two surgeries don't correct the problem, he will need to have his upper mandible expanded. Which will be a whole adventure of its own. The amounts that will be removed from his tongue is about 3 cm wide by 3 to 4 inches long. And the stitch that will keep his tongue forward and prevent it from falling back and blocking his airway will be sewn at the very base of his tongue and tied to a screw that will be inserted into the bottom of his chin. It's a painful thing. But the doctor said that kids usually start eating again by the third day. I signed the consents for the procedures and the insurance is working their magic, then we will get scheduled for that sometime within the next 1 to 6 months. It's not critical to do it immediately. It's not even necessarily urgent but it is necessary. Long-term complications from allowing him to be untreated are systemic high blood pressure, further mental retardation, permanent lung damage and thickened heart muscles. Positive outcomes of the surgery for Kyle are better sleep. Which would result in the ability to be calmer throughout the day. Learn more efficiently. Be able to focus on learning tasks such as speech and following directions and then writing and math eventually. And the big bonus for our family is that Kyle should begin sleeping through the night again!
In addition to all this wonderful news, the new ENT surgeon that we met looked in Kyle's ears and found new problems for us to deal with. Kyles left ear drum is retracting into the inner ear and his eardrum is rubbing on the bones of the inner ear that conduct hearing. The right ear that was doing this previously and had to have the ear removed and the eardrum reconstructed, is now thickened to the point of being problematic. Hence we need to go back to the surgeon who did that repair and have it re-evaluated for possible revision. Bottom line, more surgeries,more doctors, more phone calls, more time away from home. I additionally learned that all ENTs are not willing or able to manage all ENT issues. Thus Kyle requires an ENT for his Airway, an ENT for his ears, and an ENT for his sinuses. Special. But even more special is that we cannot find all of the people who need to be managing Kyle in these areas in Boise Idaho.
So all of the phone calls have been started, all of the process has been started for this next wonderful phase that we face in the next six months. Before that happens though, my kitchen is getting put back together -slowly but surely. I may be able to start moving back in next week sometime!! One week from today, Kyle will have his eye surgery. One week from that I will be traveling down to Salt Lake again to bring Lauren home for her Christmas visit. Five days after that is Christmas!!!
So how am I? I'm numb. The way that you get numb when you have really cold fingers. The pain will come later when I start to thaw. I suppose that is what coping is all about. Pressing on when you want to quit. Quitting just isn't an option.
Lest I be accused of being ungrateful, I want to list my many blessings. I am grateful to my mother-in-law for bringing over so many wonderful meals. And for help with childcare and child transport. I am grateful to my mother for a wonderful thanksgiving weekend and to my brother and sister-in-law for providing childcare along with my parents so that I could go Christmas shopping. I am grateful to my kids who are so patient and willing to find the fun in this crazy time! I am grateful for good friends who have taken on management of the carpool situation. I'm grateful for the skill and interventions that our many healthcare providers provide us. I'm grateful for my husband who works tirelessly many long hours in order to finance the travel around the country and the house repairs and the placement of Lauren at Westridge, and all of the eating out that we do in order to try to preserve some of my sanity; and so I can pay for the in-home assistance with Kyle and Dimitri that I seem to continue to require despite being a stay home mom. And I am grateful to my husband for his patient tolerance of me as I begin to unthaw. I'm also grateful for my friends who patiently tolerate me, visit me, and help where they can as I as I strive to keep my self and family together through all of this "fun" that we keep having.
Spring
We came home after the anniversary trip and Alan went back to work. This is classic for us. And I felt like life had been dropped on my throat the way a 75 pound barbell may feel. I hear that this is normal -to have a very difficult time getting back into the daily grind after having a very pleasant time away. Pretty unfun.
So following surviving that, I packed up the rest of my kitchen and emptied the lower portion of my home in order for the necessary repairs from the water damage that happened in July to commence.
The timing of this necessitated me cooking a turkey in an oven roaster that was plugged in to a floor outlet and set on the plywood floor of our home. And the other parts of Thanksgiving dinner being cooked on the outside grill or in the microwave. Then we loaded all of the food up and hauled it over to grandma and grandpa Bowdens house to celebrate Thanksgiving the Sunday before the actual date in order to include Alan in our Thanksgiving celebration. We had a wonderful day and it felt as if we actually had celebrated Thanksgiving on Thanksgiving day. I couldn't figure out why everyone kept telling me happy thanksgiving on Monday and on Tuesday and on Wednesday.
Then I began packing our family up and went to a hotel a few blocks away from our home so the hardwood that was newly installed could be sealed. From there the kids and I drove to my parents house while Alan worked over thanksgiving.
At my parents house my brother and his family of four kids and wife were there as well. Each family slept in one room and the downstairs play space was taken up by two tables in order to seat us all. Cozy doesn't quite capture the full experience. Yet we have many fond memories of the few days of us all together under one roof for Thanksgiving. Grandma Turner presented a beautiful family Thanksgiving meal and we all took turns watching kids so that the adults could take their turns going Christmas shopping and taking advantage of Black Friday sales. I also want to say that Lauren and Sierra were marvelous helpers during this period of time with all of the little children. Sadly Sierra had a fall on the ice while she was practicing one day in her new ice skates.
The result was a trip to the emergency room where we left with crutches and a brace. She doesn't have a break. But she hurts there may be something wrong that an MRI may be able to show us. It's likely that the recovery time is looking like 3 to 6 weeks. And we are still hoping to avoid surgery for her knee.
So from there Kyle and I packed our bags and got in our car and drove to the Salt Lake airport where we got on a plane and flew to Cincinnati Ohio. This time we went to Cincinnati to be seen and worked up in the sleep disorders clinic. We had a dreadful schedule with a sleep study followed the next day by Kyle not being able to eat anything until he was sedated for an MRI at two in the afternoon. Then back early the next morning to meet the new doctors who provided us the guidance we sought from them.
Funny thing about guidance. It usually leads to much more work, sacrifice and heartache. It takes so long to get this guidance that on the return trip we ended up missing our afternoon flights. Which resulted in us flying later but still arriving in Salt Lake on the right day. However I didn't get into bed until my body thought it was 3 o'clock in the morning. Which ended up being only 1 o'clock in the morning mountain standard time. All part of the fun...
The doctors recommendation is to do a tongue revision and tongue tethering surgery for Kyle because he does have complete airway collapse while he sleeps. From the tests that they did, they also found that Kyle's upper mandible is too small. Thus if the first two surgeries don't correct the problem, he will need to have his upper mandible expanded. Which will be a whole adventure of its own. The amounts that will be removed from his tongue is about 3 cm wide by 3 to 4 inches long. And the stitch that will keep his tongue forward and prevent it from falling back and blocking his airway will be sewn at the very base of his tongue and tied to a screw that will be inserted into the bottom of his chin. It's a painful thing. But the doctor said that kids usually start eating again by the third day. I signed the consents for the procedures and the insurance is working their magic, then we will get scheduled for that sometime within the next 1 to 6 months. It's not critical to do it immediately. It's not even necessarily urgent but it is necessary. Long-term complications from allowing him to be untreated are systemic high blood pressure, further mental retardation, permanent lung damage and thickened heart muscles. Positive outcomes of the surgery for Kyle are better sleep. Which would result in the ability to be calmer throughout the day. Learn more efficiently. Be able to focus on learning tasks such as speech and following directions and then writing and math eventually. And the big bonus for our family is that Kyle should begin sleeping through the night again!
In addition to all this wonderful news, the new ENT surgeon that we met looked in Kyle's ears and found new problems for us to deal with. Kyles left ear drum is retracting into the inner ear and his eardrum is rubbing on the bones of the inner ear that conduct hearing. The right ear that was doing this previously and had to have the ear removed and the eardrum reconstructed, is now thickened to the point of being problematic. Hence we need to go back to the surgeon who did that repair and have it re-evaluated for possible revision. Bottom line, more surgeries,more doctors, more phone calls, more time away from home. I additionally learned that all ENTs are not willing or able to manage all ENT issues. Thus Kyle requires an ENT for his Airway, an ENT for his ears, and an ENT for his sinuses. Special. But even more special is that we cannot find all of the people who need to be managing Kyle in these areas in Boise Idaho.
So all of the phone calls have been started, all of the process has been started for this next wonderful phase that we face in the next six months. Before that happens though, my kitchen is getting put back together -slowly but surely. I may be able to start moving back in next week sometime!! One week from today, Kyle will have his eye surgery. One week from that I will be traveling down to Salt Lake again to bring Lauren home for her Christmas visit. Five days after that is Christmas!!!
So how am I? I'm numb. The way that you get numb when you have really cold fingers. The pain will come later when I start to thaw. I suppose that is what coping is all about. Pressing on when you want to quit. Quitting just isn't an option.
Lest I be accused of being ungrateful, I want to list my many blessings. I am grateful to my mother-in-law for bringing over so many wonderful meals. And for help with childcare and child transport. I am grateful to my mother for a wonderful thanksgiving weekend and to my brother and sister-in-law for providing childcare along with my parents so that I could go Christmas shopping. I am grateful to my kids who are so patient and willing to find the fun in this crazy time! I am grateful for good friends who have taken on management of the carpool situation. I'm grateful for the skill and interventions that our many healthcare providers provide us. I'm grateful for my husband who works tirelessly many long hours in order to finance the travel around the country and the house repairs and the placement of Lauren at Westridge, and all of the eating out that we do in order to try to preserve some of my sanity; and so I can pay for the in-home assistance with Kyle and Dimitri that I seem to continue to require despite being a stay home mom. And I am grateful to my husband for his patient tolerance of me as I begin to unthaw. I'm also grateful for my friends who patiently tolerate me, visit me, and help where they can as I as I strive to keep my self and family together through all of this "fun" that we keep having.
Spring
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