Kayli finally made it home last night!!! She is in Ketosis! Her blood sugar levels have stayed in the 60's, which also means she is doing well! She had a great night, and is at school this morning! There are many discrepancies in her discharge plans, so I am busy attending to that and many other "life" issues. Once I jump the hurdles in the day, and things slow down, I hope to update more later tonight! Thank you for your support! God Bless You!! <3
Thursday, January 31, 2013
Tuesday, January 29, 2013
At Peace with the change of plans
Change of plans....the nursing agency called 30 minutes before the ambulance was to show up to take Kayli home, to tell me we don't have an overnight nurse anymore (for tonight). I was not pleased to say the least, and can admit that I was very short with the nursing agency director. How could he have messed up again?!!!, I thought to myself as the anger brewed inside me. I have limited supplies left from home, and even though the plan to go home was only a half hour away...something told me to continue to be frugal with the supplies.
After cancelling the ambulance, the dr's come in to say they are sorry it didn't work out to go home. The dr noticed Kayli has been struggling with her secretions. I had her on 100% oxygen and she still wasn't keeping her saturations up. Her chest is pulling (meaning she is gasping for air and her chest is caving in with each breath). At first the dr was going to do a chest xray and give her more medication to decrease her secretions. Then I realized that respiratory didn't lower her humidification system. Not only is it very hot in her room, but the heat was on high (on her humidification equipment). When respiratory lowered the settings, she realized it doesn't go down to Kayli's regular level. The RT lowered the heat as far as she could, and is working on getting another system in Kayli's room.
I sit here looking at Kayli and she is already breathing more comfortably. Her oxygen is lowered back down to 50%, and her saturations are mid 90s now. :D
At first I was upset with the nursing agency, but I was quickly forced to look at what is truly important in life. Caring for each other. If my attention hadn't turned towards working together to find a better care plan for Kayli, then I likely would still be sitting here in anger. I could have dwelled on how my plan had not worked out, but instead I sit here Thanking God. I thank Him for keeping myself and my daughter safe tonight. Kayli is safe at the hospital, getting treatments. For all I know, God's plan to keep us here was to save myself from a horrible car accident, or a mishap in the ambulance. I may never know why God chose for us to stay in the hospital another night, but I do know that God is good ALL the time. Even when our guard is down and we think we have it figured out....God has a way of reminding us that we don't have to. For whatever His reason, it is God's plan that we stay in the hospital tonight, and I am grateful!
Oh, and Thank You God, for reminding me that You will always make sure that I have the supplies in life that I need. I know You were the "something" that told me to be frugal with the supplies, even when I thought I'd have enough! ;-)
If it is God's Will, we will be leaving for home in the morning! <3
After cancelling the ambulance, the dr's come in to say they are sorry it didn't work out to go home. The dr noticed Kayli has been struggling with her secretions. I had her on 100% oxygen and she still wasn't keeping her saturations up. Her chest is pulling (meaning she is gasping for air and her chest is caving in with each breath). At first the dr was going to do a chest xray and give her more medication to decrease her secretions. Then I realized that respiratory didn't lower her humidification system. Not only is it very hot in her room, but the heat was on high (on her humidification equipment). When respiratory lowered the settings, she realized it doesn't go down to Kayli's regular level. The RT lowered the heat as far as she could, and is working on getting another system in Kayli's room.
I sit here looking at Kayli and she is already breathing more comfortably. Her oxygen is lowered back down to 50%, and her saturations are mid 90s now. :D
At first I was upset with the nursing agency, but I was quickly forced to look at what is truly important in life. Caring for each other. If my attention hadn't turned towards working together to find a better care plan for Kayli, then I likely would still be sitting here in anger. I could have dwelled on how my plan had not worked out, but instead I sit here Thanking God. I thank Him for keeping myself and my daughter safe tonight. Kayli is safe at the hospital, getting treatments. For all I know, God's plan to keep us here was to save myself from a horrible car accident, or a mishap in the ambulance. I may never know why God chose for us to stay in the hospital another night, but I do know that God is good ALL the time. Even when our guard is down and we think we have it figured out....God has a way of reminding us that we don't have to. For whatever His reason, it is God's plan that we stay in the hospital tonight, and I am grateful!
Oh, and Thank You God, for reminding me that You will always make sure that I have the supplies in life that I need. I know You were the "something" that told me to be frugal with the supplies, even when I thought I'd have enough! ;-)
If it is God's Will, we will be leaving for home in the morning! <3
Going Home! With Precautions...
Kayli has the go ahead to go home!!! She has not been producing Ketones, so the dietician lowered her daily caloric intake from 376 calories, to 248 (?) calories daily. The assumption is that since Kayli already required less than half the average calories of a toddler, her metabolism must be slow. The idea is to lower the calories, and push her into Ketosis. Originally, she was able to keep the chewable multivitamin, but now the dietician is changing it into a pill form.
In the Home setting:
Kayli will need to get her sugar levels checked every 4 hours, and she will need blood work in a couple of weeks. We will go to our local hospital, which has an exellent phlebotomist, who ALWAYS gets blood from Kayli! I once asked her how it is that she can get blood from Kayli, when many others cannot. Her quick and simple reply was, "I pray before every stick!" <3
Kayli's gram scale is being delivered today, and I will use my glucose meter until she gets one of her own. The outpatient clinic is set up for 2 weeks from now, and the orders are all being written for the home care nursing. All Kayli's meds should be ordered and ready for pick up from the pharmacy. I have questioned Kayli's use of lipsmackers, lip moisturizer, because there is likely to be carbs in it. But I feel that it would be minimal (she does not swallow it) and it is literally the only smell sensory she has currently. So, we will keep it for now.
While on the Ketogenic diet, we will have to monitor all products put on her (including mosquito spray and sunscreen) because she cannot have the carbohydrates.
In the Home setting:
Kayli will need to get her sugar levels checked every 4 hours, and she will need blood work in a couple of weeks. We will go to our local hospital, which has an exellent phlebotomist, who ALWAYS gets blood from Kayli! I once asked her how it is that she can get blood from Kayli, when many others cannot. Her quick and simple reply was, "I pray before every stick!" <3
Kayli's gram scale is being delivered today, and I will use my glucose meter until she gets one of her own. The outpatient clinic is set up for 2 weeks from now, and the orders are all being written for the home care nursing. All Kayli's meds should be ordered and ready for pick up from the pharmacy. I have questioned Kayli's use of lipsmackers, lip moisturizer, because there is likely to be carbs in it. But I feel that it would be minimal (she does not swallow it) and it is literally the only smell sensory she has currently. So, we will keep it for now.
While on the Ketogenic diet, we will have to monitor all products put on her (including mosquito spray and sunscreen) because she cannot have the carbohydrates.
Monday, January 28, 2013
No Ketones = No Home
Kayli will be staying in the hospital another night. Since she has been on the Ketocal (Ketogenic diet) full strength for more than 24 hours, she should be producing Ketones. She should be in a state of Ketosis, but her Ketone levels are still negative. The Neurologist will not release her until she is in Ketosis. I will continue to check her urine for Ketone levels, and hope that her metabolism switches soon! I hope to post later with more incouraging news of her Ketogenic diet journey. The good news is, she has only had one seizure per day since she started the diet! :D
Potty Training doesn't stop at home!
Kayli has unbelievable will power! lol She
has not stooled since Friday (day she was admitted to the hospital). I
figured we could stop potty training while in the hospital...but Kayli
didn't appreciate my suggestion. The nurses are getting concerned about
her not pooping, so I told the nurse how she is wanting to go on the
big girl potty now at home. I told the nurse I could try putting her on
the toilet here, to see if that was why she wasn't pooping in the
hospital. Within 2 minutes of sitting her on the big girl potty, she
peed, then pooped! lol I asked her if she was done, and she sighed out
of her trach (meaning she has something to say). I waited, then asked
her if she wanted to stay on the potty and she didn't sigh, just stared
at me. I waited, then again asked her if she wanted to get off the
potty....another sigh. Kayli is treading beyond anywhere we ever imagined she could!
Still at the Hospital
Kayli is still at the hospital today. I awoke bedside to Kayli's cries this morning. Once her diaper was changed, she quieted down and fell back asleep. She has been sleeping since, but I have a concern that her heart rate is dropping down to 60 when she is in a deep sleep. Her cardiologist has suggested that Kayli's heart rate not drop to the 70's unless she comes right back up, so it is a minor concern (of mine) that she is dipping to the low 60's even though she eventually comes back up.
Kayli has not produced any Ketones as of yet. There have been several attempts to get blood from Kayli so the dr's can run lab work, but Kayli is being very stingy with her blood (and she is a VERY hard stick!). Around 1pm today, 2 or 3 dr's will be in her room trying to access an artery to attain blood for labs. Currently, there has not been talk of going home today, nor of staying here another night. I think they will be reassessing her hospital stay in accordance with her Ketone production and/or blood levels once they achieve access to her blood.
Kayli is stable, just being stubborn, and as always...doing things at her pace, and in her own unique way. <3
Kayli has not produced any Ketones as of yet. There have been several attempts to get blood from Kayli so the dr's can run lab work, but Kayli is being very stingy with her blood (and she is a VERY hard stick!). Around 1pm today, 2 or 3 dr's will be in her room trying to access an artery to attain blood for labs. Currently, there has not been talk of going home today, nor of staying here another night. I think they will be reassessing her hospital stay in accordance with her Ketone production and/or blood levels once they achieve access to her blood.
Kayli is stable, just being stubborn, and as always...doing things at her pace, and in her own unique way. <3
Sunday, January 27, 2013
Day 3: Our visitor, and new discharge plans
Kayli was behind on the diet schedule because she was started late in day (evening) on Friday. Yesterday was a "catch up" day where the new food was pushed through a feeding pump for 16 hours straight. Kayli handled it like a champ! After they gave her the juice, her blood sugar went back up to normal range, and she has been maintaining it well even though she has been getting decreasing amounts of sugar! Kayli was suppose to get some blood work to check some levels, but her chest port is not pulling back any blood and she is such a hard stick that they were not able to draw any labs. The nurses tried giving her 2 TPA treatments via her chest port to break up any possible blood clots, but ultimately the port does not draw back.
Yesterday, Kayli and I had a visitor! Another Mom of a child with Trisomy came to visit us! Kelly's daughter, Kaiya, also has Full Trisomy 18, and Kaiya is 10 years old! While the hospital and supply company did not have the new food set up for Kayli's discharge, Kelly brought the food left over from Kaiya's Ketogenic trial! Thanks to Kelly and Kaiya, Kayli will have food at home, and will not have to stay at the hospital until it is ready from the supply company! Kelly also brought Kayli and I bracelets for 3ELove! They are a great organization, and we are wearing our bracelets proudly! You can click on this link to learn more about the wonderful organization! 3eLove
Thank you Kelly and Kaiya!!!
Today, Kayli started on the full Ketogenic diet. We expect her Ketone levels to climb so that she will go into Ketosis (where her body works off Ketones instead of sugar/carbohydrates). So far, Kayli does not have any ketones in her urine output, but we are still hopeful because she only just started the full diet. Hopefully by this evening, she will start increasing the Ketone level. Originally Kayli was to go home today, but the dr decided it is best to have her on a full day of the full Ketogenic diet and to get blood work (via an artery) tomorrow when she is producing Ketones. I am fine with keeping her in the hospital another day because we are expecting an ice storm today and it would be very dangerous driving home in the dark tonight.
If Kayli starts producing Ketones, has no issues with the full diet, and the dr can get blood from Kayli's artery...she will be able to go home tomorrow afternoon! Directly below, is a picture of our friend, Kelly, with Kayli! <3
For now, Kayli is resting (the fatty food is making her tired). Although the diet is known for making a person constipated, it has affected Kayli quite the contrary. I have not been holding her because she is leaking out her diaper with the extra fluids and runny stool. lol I know from first hand that it gets pretty uncomfortable in a hospital bed, and you can start to feel down. When you get a shower/washed up, it lightens your spirits, so I am excited to get her in the bathtub during her next food break!
Yesterday, Kayli and I had a visitor! Another Mom of a child with Trisomy came to visit us! Kelly's daughter, Kaiya, also has Full Trisomy 18, and Kaiya is 10 years old! While the hospital and supply company did not have the new food set up for Kayli's discharge, Kelly brought the food left over from Kaiya's Ketogenic trial! Thanks to Kelly and Kaiya, Kayli will have food at home, and will not have to stay at the hospital until it is ready from the supply company! Kelly also brought Kayli and I bracelets for 3ELove! They are a great organization, and we are wearing our bracelets proudly! You can click on this link to learn more about the wonderful organization! 3eLove
Thank you Kelly and Kaiya!!!
Today, Kayli started on the full Ketogenic diet. We expect her Ketone levels to climb so that she will go into Ketosis (where her body works off Ketones instead of sugar/carbohydrates). So far, Kayli does not have any ketones in her urine output, but we are still hopeful because she only just started the full diet. Hopefully by this evening, she will start increasing the Ketone level. Originally Kayli was to go home today, but the dr decided it is best to have her on a full day of the full Ketogenic diet and to get blood work (via an artery) tomorrow when she is producing Ketones. I am fine with keeping her in the hospital another day because we are expecting an ice storm today and it would be very dangerous driving home in the dark tonight.
If Kayli starts producing Ketones, has no issues with the full diet, and the dr can get blood from Kayli's artery...she will be able to go home tomorrow afternoon! Directly below, is a picture of our friend, Kelly, with Kayli! <3
Saturday, January 26, 2013
A little bump in the road
Kayli just had a little bump in the road. Her blood sugar level was a little too low, so the resident and dietician are giving her a dose of apple juice to increase her sugar level. With the Ketogenic diet, we are trying to switch her metabolism from running off sugar, to running off Ketones. So while it is good that her sugar levels are going down, it is a slippery slope to make sure her levels don't go down too quickly (before her Ketone levels are up).
Kayli's blood sugar level is at 44. If she gets down to 30, it is dangerously low. The lowest she should be right now is at 45. Her transition schedule has not changed, even though a small adjustment needed to be made.
Kayli's blood sugar level is at 44. If she gets down to 30, it is dangerously low. The lowest she should be right now is at 45. Her transition schedule has not changed, even though a small adjustment needed to be made.
On to day 2 of the Ketogenic diet!
Kayli's first night on the Ketocal and formula mix went well! She will continue the first step until 11am (another hour) and will take a break until around 3pm. Then she will move on to the second step, which is 2/3 Ketocal and 1/3 Elecare.
We have been watching Kayli's abdomen for distention (bloating) to make sure she is tolerating the new diet. Typically, a person might throw up if he/she is not tolerating the new diet, but when Kayli got her Gtube placed (feeding tube), she also had a nissen wrap (fundoplication) which restricts her from throwing up/protects her esophagus/airway from GERD.
I am told that the Ketogenic diet can cause constipation later in the weeks to come, but as right now it should not be an issue because she is still partially on formula. For Kayli, the stools are loose (and do not have a pleasant odor!) now. She was sleeping, but her heart rate was climbing to the 170s...once her diaper was changed, her heart rate came down. lol Kayli does not like a dirty diaper. Needless to say, we are holding off on the potty training during this transition and hospital stay. lol
Friday, January 25, 2013
Setting up the Hospital Admission for the Keto diet.
It is a nervous morning, as I find myself having to trust that the new hospital will have all the equipment, supplies, and medications for Kayli's new journey on the Ketogenic diet. I have been asked to bring a scale, a blender, and Ketostix. In reality, I am bringing suitcases filled with her medications, supplies, equipment, clothes, toys, and my clothes. In part, my concerns are that the hospital is new to us and may not have the appropriate support for my daughter's specific needs (the hospital team could not confirm the respiratory equipment nor medications they carry/use).
I am told that the first day of hospital admission is to start Kayli the diet with 1/3 her caloric intake to be Ketocal and 2/3 her current formula, Elecare. Day 2 will be 2/3 Ketocal and 1/3 Elecare. On day 3, Kayli will be going home on full Ketocal (Ketogenic diet). They will be doing some blood work to make sure her sugar levels are appropriate. This may pose a problem, because Kayli is a VERY hard "stick". She has a chest port, but we have not been able to draw back (get blood from it) since a month after she got it put in.
Although there are many challenges in this new journey, I am sure that the good Lord will guide us through the tough times. We hope to see a difference in her seizure activity in the next month. If so, we can start weaning her off her 2 seizure medications. We will know in about 3 months if the Ketogenic diet is the best treatment for Kayli's seizure disorders.
I am told that the first day of hospital admission is to start Kayli the diet with 1/3 her caloric intake to be Ketocal and 2/3 her current formula, Elecare. Day 2 will be 2/3 Ketocal and 1/3 Elecare. On day 3, Kayli will be going home on full Ketocal (Ketogenic diet). They will be doing some blood work to make sure her sugar levels are appropriate. This may pose a problem, because Kayli is a VERY hard "stick". She has a chest port, but we have not been able to draw back (get blood from it) since a month after she got it put in.
Although there are many challenges in this new journey, I am sure that the good Lord will guide us through the tough times. We hope to see a difference in her seizure activity in the next month. If so, we can start weaning her off her 2 seizure medications. We will know in about 3 months if the Ketogenic diet is the best treatment for Kayli's seizure disorders.
Tuesday, January 22, 2013
Kayli is going on a diet!!!
This weekend, Kayli is going to be admitted into a hospital to start a diet! Sounds silly for a 3 year old to be on a diet, right? lol Well, not this diet! Kayli is going to trial the Ketogenic Diet! The Ketogenic diet is a special high-fat diet that is used for seizures that are difficult to treat.
Because of the 32 minutes Kayli survived without oxygen, her brain was reduced in size and has challenges in the brain signal pathways. As her brain continues to develop with the unique formation, she now has epilepsy, and was diagnosed with LGS, or Lennox Gastaut Syndrome, which is a difficult seizure disorder to treat. Kayli's has minimal seizures, lasting only up to 45 seconds at a time but medications are not helping to stop the seizures. There are many side effects to seizure medications, including but not limited to; more seizures, lethargy, and swollen gums (difficulty teething).One of the current seizure medications she is on is causing her to drop her heart rate and oxygen level when she is in a seizure. This can be hard on her lungs and heart.
We hope to eliminate her seizures and medication side effects, with the Ketogenic diet. Within a couple of months, we should know if it is the right treatment for her. Please pray that Mommy and Daddy learn this diet adequately in the brief hospital stay, in order to support Kayli in the new hope for seizure relief!
For more information on the Ketogenic Diet, please go to: The Charlie Foundation
Because of the 32 minutes Kayli survived without oxygen, her brain was reduced in size and has challenges in the brain signal pathways. As her brain continues to develop with the unique formation, she now has epilepsy, and was diagnosed with LGS, or Lennox Gastaut Syndrome, which is a difficult seizure disorder to treat. Kayli's has minimal seizures, lasting only up to 45 seconds at a time but medications are not helping to stop the seizures. There are many side effects to seizure medications, including but not limited to; more seizures, lethargy, and swollen gums (difficulty teething).One of the current seizure medications she is on is causing her to drop her heart rate and oxygen level when she is in a seizure. This can be hard on her lungs and heart.
We hope to eliminate her seizures and medication side effects, with the Ketogenic diet. Within a couple of months, we should know if it is the right treatment for her. Please pray that Mommy and Daddy learn this diet adequately in the brief hospital stay, in order to support Kayli in the new hope for seizure relief!
For more information on the Ketogenic Diet, please go to: The Charlie Foundation
Our Miracle Girl is Potty Training and Gets Her Cast Off!!
For about 2 weeks now, Kayli has been waiting for hours to pee (in her diaper), then "dumps" and leaks through her diaper. This can be a sign of being ready to potty train, and I wondered if that is what Kayli was trying to do. We have always tried being one step ahead of Kayli, while trying to anticipate which direction she is going (with her abilities). Kayli went ALL DAY without voiding or stooling, so I put her on her bathroom toilet. Within 2 minutes, she stooled and peed in the toilet!!! She is Amazing!!! I cheered for her, and she smiled! I told her what a big girl she is! More smiles!! Kayli never ceases to amaze me.... 32 minutes without oxygen and not only did she survive, but now she is potty training! WOW!!! Thank You God!!! ♥
We put Kayli on the toilet again yesterday, and she went potty again!!! Kayli's day nurse witnessed Kayli's miraculous ability herself! If I did not see Kayli's abilities myself, I probably wouldn't believe it! lol There is so much more to Kayli, than her body allows her to be! Her Spirit is so much stronger than her body, and I am so very grateful that her spirit is carrying her through life! Imagine the things she will say when we find a way for her to communicate with us!!! <3
On another note, Kayli went to the pre-operation appt yesterday for her heel surgery, and the ortho took her cast off! The Dr. said Kayli is healing well, albeit slower than an average rate. The fact that Kayli is healing her fractured bones is a good sign because her bone density has not been impressive in the past. One of her leg bones is "barely there" (very thin), as the dr. put it. The dr. was impressed that she did not have ANY skin breakdown. This is important because we now know that skin breakdown with the spinal growing rods surgery may not be an issue!!! Overall, the dr. is impressed with Kayli's abilities to heal and is planning on surgery to release her heel tendons so Kayli can stand again! Kayli will have the heel release surgery the second week of February! For now, she is enjoying the unrestricted ability to kick her legs! lol
We put Kayli on the toilet again yesterday, and she went potty again!!! Kayli's day nurse witnessed Kayli's miraculous ability herself! If I did not see Kayli's abilities myself, I probably wouldn't believe it! lol There is so much more to Kayli, than her body allows her to be! Her Spirit is so much stronger than her body, and I am so very grateful that her spirit is carrying her through life! Imagine the things she will say when we find a way for her to communicate with us!!! <3
On another note, Kayli went to the pre-operation appt yesterday for her heel surgery, and the ortho took her cast off! The Dr. said Kayli is healing well, albeit slower than an average rate. The fact that Kayli is healing her fractured bones is a good sign because her bone density has not been impressive in the past. One of her leg bones is "barely there" (very thin), as the dr. put it. The dr. was impressed that she did not have ANY skin breakdown. This is important because we now know that skin breakdown with the spinal growing rods surgery may not be an issue!!! Overall, the dr. is impressed with Kayli's abilities to heal and is planning on surgery to release her heel tendons so Kayli can stand again! Kayli will have the heel release surgery the second week of February! For now, she is enjoying the unrestricted ability to kick her legs! lol
Tuesday, January 15, 2013
Off the Rack!!
Off the Rack!
From the day Kayli was prenatally diagnosed with Trisomy 18, all I could think about, was the outfits on the racks in the store...and how I would never get to see her in them. It is a selfish thing I know. While in the nesting phase, I was drawn to the baby aisles in the stores. I felt so alone. I imagined that anybody else picking an outfit off the rack, never wondered if they would put it on their baby and see the outfit come alive. Often, I would find myself in an area filled with cheerful shrills at the sight of the outfits, while comments of the clothes, "she will look SOOOO cute in this one!!" flailed around me. I stood there in a daze, tears rolling down my cheeks, wishing I could see my unborn daughter in just ONE outfit, off the rack. One courageous day, I broke down and purchased an adorable dress off the rack. I didn't fixate on how she would look in it, but rather, wondered "will this be her coming home dress, or her funeral dress?" It turned out to be neither. :-/ Kayli was transferred to another hospital for further testing. lol Although it was a good sign of life, I couldn't help but laugh as the new purpose of the dress was dubbed, "the transport dress"! No matter how much I fretted, or what I planned the dress to be...it took on a meaning of it's own...kind of like Kayli's life.
Fast forward 4 months later. After heart surgery, while coming out of sedation in the PICU room...Kayli passed away. 32 minutes later, she came back to life! My heart leaped at the thought of 5 more minutes with her! I ran to her side, hoping to capture each morsel of her final 5 minutes of life! Of all the things I could have said to her, while she hung onto life, this was all I wanted to say to her... Thank you for every pat on your butt, I gave you. Thank you for every smile you shared. Thank you for the 5 minutes of "mommy time" each day, on my chest that you endured. Thank you for every breath you gave me, and for the snarls in your hair. Thank you for every outfit off the rack, that I got to see you in, and the memories to share. Kayli's next Krusade, is to share pictures in an album, of her in outfits, that were once sitting on a rack. I will be updating the album daily. You can see her photo album by clicking here: Kayli's 'off the rack' photo album.
I pray each and every one of you get a chance to see your child in an outfit... Off the rack! ♥
From the day Kayli was prenatally diagnosed with Trisomy 18, all I could think about, was the outfits on the racks in the store...and how I would never get to see her in them. It is a selfish thing I know. While in the nesting phase, I was drawn to the baby aisles in the stores. I felt so alone. I imagined that anybody else picking an outfit off the rack, never wondered if they would put it on their baby and see the outfit come alive. Often, I would find myself in an area filled with cheerful shrills at the sight of the outfits, while comments of the clothes, "she will look SOOOO cute in this one!!" flailed around me. I stood there in a daze, tears rolling down my cheeks, wishing I could see my unborn daughter in just ONE outfit, off the rack. One courageous day, I broke down and purchased an adorable dress off the rack. I didn't fixate on how she would look in it, but rather, wondered "will this be her coming home dress, or her funeral dress?" It turned out to be neither. :-/ Kayli was transferred to another hospital for further testing. lol Although it was a good sign of life, I couldn't help but laugh as the new purpose of the dress was dubbed, "the transport dress"! No matter how much I fretted, or what I planned the dress to be...it took on a meaning of it's own...kind of like Kayli's life.
Fast forward 4 months later. After heart surgery, while coming out of sedation in the PICU room...Kayli passed away. 32 minutes later, she came back to life! My heart leaped at the thought of 5 more minutes with her! I ran to her side, hoping to capture each morsel of her final 5 minutes of life! Of all the things I could have said to her, while she hung onto life, this was all I wanted to say to her... Thank you for every pat on your butt, I gave you. Thank you for every smile you shared. Thank you for the 5 minutes of "mommy time" each day, on my chest that you endured. Thank you for every breath you gave me, and for the snarls in your hair. Thank you for every outfit off the rack, that I got to see you in, and the memories to share. Kayli's next Krusade, is to share pictures in an album, of her in outfits, that were once sitting on a rack. I will be updating the album daily. You can see her photo album by clicking here: Kayli's 'off the rack' photo album.
Friday, January 4, 2013
Kayli's story and introduction to our entire family
Kayli was born with Full Trisomy 18. We were told she is "incompatible with life" and that we should terminate the pregnancy. With the uphill battle, came medical rejection, family alienation, slow codes, futility law, and many fights to get Kayli what every baby deserves...treatments.
When she was 4 months old, she underwent open heart surgery, to fix her ASD/VSD/PDA/double right outlet. 8 hours later, in the PICU room, Kayli came out of sedation and decided she didn't like that they closed her holes. She fought the pacemaker, and refused all medical help. She passed away. 32 minutes later...she came back to life! Everyone in the room undeniably witnessed a miracle! She came back home to live with us after only 3 weeks in the hospital.
Her first year continued to have challenges with the medical professionals. She was denied antibiotics from a hospital when she knowingly had Bacterial Endocarditis (a heart infection) and Sepsis (an entire body, blood infection). She outlived their stubborness, and treated her after surviving 7 weeks of infection...without antibiotics!
At 7 months, she sustained life altering damages, when a home care nurse gave her something she was anaphylactically allergic too. Because of her Trisomy 18 diagnosis, she again, was denied life saving treatments. It took us 3 weeks while her throat closed to find an ENT to even evaluate/look at her! She now has a permanent trach placed in her airway.
At 8 months old, we decided to give Kayli a Gtube. Our philosophy was that before Kayli's death (and rebirth), she could not stand to have anything on her face. She went in for the Gtube surgery. The surgeon perforated her bowel. The resident caught the mistake, and Kayli was then opened up to repair the mistake. Kayli continued to be toxically ill. The surgeon refused to get our much desired GI consult. We found out why, 3 weeks later. The surgeon admittedly placed the Gtube in Kayli's colon instead of her stomach. An inconceivable, and uncommon mistake. The surgeon told us she need not explain to us why she did what she did, to our daughter.
Kayli has had 3 other corrective GI surgeries to fix a fistula, close the colon, remove a Meckel's Divirticulum, and close an abdominal sized hernia as a result of the original surgeon's doings.
Kayli is now thriving in life, relearning reflexes. She knows of our love, can tell apart each of her nurses (even gives them an initiation on their first day of work), knows pain, and can communicate with us in her own way. Kayli's spirit is much stronger than her body, and we support her in life, every way possible!
Kayli's smile and spunky demeanor makes us laugh. Her heart and soul have touched many lives, and she is an inspirational girl for many!
Our Family
We are a Family of 6. Each one of us has a challenging medical health history. In 2009, we had 18 surgeries between myself and our 4 children. We continue to have surgeries and find treatments for each of our medical issues. We expect Kayli to be treated with the same integrity we are! Our kiddos each have at least one rare diagnosis, and each child has had their very own miracle! You know Kayli's history, now I will introduce you to her siblings!
Niko is her youngest brother. He is 6 years old. At only 2 years old, he was diagnosed with brain stem cancer via an MRI, then a biopsy. 15 hospitals reviewed the biopsy and all agreed...He has Gangliaglioma in his Pons and Medulla (2 parts of his brain stem), and also deep in his Cerebellum. It is a rare brain stem cancer, in that it also is in his Cerebellum. Niko was given a 100% morbidity rate if the surgeons tried to surgically remove the large tumor. Niko was too young for radiation, so the second step of fighting cancer was also eliminated from his care plan. Niko was given months to live, and we were told his only hope for survival was chemo. We anxiously waited for the slow growing cancer to get more aggressive, so the chemo would reach all the cancer cells. After 6 months of impatiently waiting....hoping the cancer wouldn't continue growing, but also hoping it would rear it's worst so we could start treating it with chemo...it miraculously STOPPED GROWING!!! Scientists can't explain it! We can... and we thank HIM for another day with our son. Niko still has the tumor, and the affects of it, but it STILL is not growing with any significance! Niko is in therapies, and continues to get Brain MRIs to follow the brain tumor. So far, God has given us more than 1,000 "extra" days with our son!!!!
Jacob is Kayli's second youngest brother. He is 12 years old. Jacob has ADHD, ODD, Autism, Sensory Integration Disorder, and a rare diagnosis of EOE (Eosinophil Esophogitus). He has a high functioning Autism, is very creative and smart, but lacks in social skills and understanding. Jacob is mainstreamed in a Jr High school. He loves art, R/C cars, and can conjour up a plan, draw plans out, and build his creation all in a day. His IQ tests show him near genius! EOE is a disease where enzymes (eosinophils) are attacking his digestive system. Jacob and I went to a symposium about EOE, and we are working towards finding a treatment for him, even though there is not a cure. EOE is typically very painful, but God has blessed him with Sensory Integration Disorder, so Jacob does not feel pain. :D This can be a good thing, or it can be bad. We almost lost Jacob in 2009, because his Sensory Integration Disorder (and lack of pain) hid from us that Jacob had appendicitis. He had absolutely NO pain, nor symptoms! By the Grace of God, we found ourselves in an ER and the dr had given him an abdominal CT scan...which found the ruptured appendix! That was Jacob's miracle! We continue to struggle with the day to day findings of bodily injuries. We have had many talks about protecting him from "friends" who use his body as a joking test dummy as they try to see how far they can go with him, and see if he feels them "break" his body. I've thought about pulling him from mainstream, but he seems to be learning more about social cues as he gets older and understands the boundaries friends should abide by for him. :D
Stephen is Kayli's oldest brother. He is 20 years old. When Stephen was 14 years old, he broke his back while swinging a bat in a baseball game. Stephen was a great student, and equally gifted athlete! He had his first surgery just after he turned 15. The surgeon gave him MRSA of the spine, a staph infection resistant to antibiotics. When they tried treating his rampant infection with the only 2 IV (most powerful) antibiotics proven to treat MRSA...it was then that we found he is allergic to them BOTH!!! We almost lost Stephen. Had it not been his spine, they may have been able to amputate the infected area, but a spine cannot be surgically removed. If they could not conjour up a treatment plan powerful enough to treat the resistant infection, he would have no chance of fighting the infection on his own, and was sure to die. With many weeks of trial drugs on board, Stephen survived! He has gone on to have 4 more spine surgeries, the 5th to replace a surgically misplaced screw! In the 5th surgery, all the posterior screws and rods were taken out, he was flipped to his stomach on the operating table, arteries and his stomach were moved, and a plate was placed on the anterior side of his spine. Stephen continues to have chronic pain, and his future holds at least one more spinal surgery, but he is a brave soul fighting the odds and is attending college. He recently moved back home, and has transferred to a college near us since the death of our family dog at the hands of his ex roommate.
Kayli's Dad has been fully trained to take care of ALL her needs, including (but not limited to) changing her trach, giving medications, equipment set up, and changing a diaper here and there! lol He is awaiting spine surgery himself, because he has a bone fragment dangerously close to his spinal chord, an injury surely a result of his work as a Laborer.
I am Kayli's mom, Kelly. I tend to be the one who stays at the hospital with her or the boys if they are inpatient. Dad usually stays home, as we have perfected the 'divide and conquer' roles. :D In October, we found an unusual situation, while I was in the hospital the same time Kayli was! lol We were on the same floor, but at opposite ends of the hospital! I had a rather large (benign) mass removed from my chest. I am an MS survivor, and have flare ups with any stress given to my body.
If you were to see our family out in public, you probably wouldn't guess this written family to be us. We laugh, argue, and live life with love in our hearts, just as many other families do. You may recognize Kayli's differences because she is on oxygen and in a wheelchair, but don't for one second pity her or think "she is with them"....for it is we, who are with HER! We walk proudly next to Kayli. We don't hide her, nor her entourage of equipment. Each family member forgets their own ailments, and puts her needs first because it is Kayli who knows more about the important things in life and the peace of death. She leads us, as we push Kayli ahead of us when in a crowd because well, people move for a wheelchair! lol Ok, and maybe a little because we know Kayli has such a wonderful repor with other's hearts. We learn a lot about the souls she touches, and all the angels around her at any given moment. Each of our children have faced their own death, and each sibling's death, but it is Kayli has died and came back from death. It is easy to sit back, watch, and learn from her....that God does not give us what we want, but what He wants for us in this lifetime. Kayli has taught our family that our bodies are not as strong as our spirits, and it is truly our spirits that matter beyond this life...not our bodies. Each of our family members have disabled bodies....but that's ok, because that is allowing us to rely on, and perfect our spirituality.
I do not wish harm on any family, but I do hope that one day you too, are Blessed with a family of disabled bodies, because it will be certain then, that you will rely on and perfect your own spirituality.
God's Blessings unto you,
Kayli's Momma, Kelly
Tuesday, January 1, 2013
Devastating December, Changes in the New Year!
December 2012 has been a trying month for Kayli and family. Our Family dog, Lucky, went with to visit our 20 year old son (Kayli's older brother) at his college apt. Lucky was visiting Stephen between Thanksgiving break, and Christmas break. On the day before they were both to return, Stephen's roommate admittedly, brutally killed Lucky. We are trying to come up with the $200 for the Necropsy (dog autopsy). We are pressing charges, in hopes of stopping Lucky's killer from harming any other animals, but it does not take away the hurt and pain of loosing our family member. The State's Attrny and police department are awaiting our deliverance of the Necropsy, then the SA will review the results and will likely press Felony charges against Lucky's killer.
When Kayli's surgical date came mid December, I was uncomfortable with putting her under anesthesia with the new diganosis of Pulmonary Stenosis, so Kayli did not have surgery. The surgery date came and went. Then a night shortly thereafter, Kayli was crying inconsolably. Her saturations (oxygen level) was dropping, and she continued to be inconsolable throughout the next day. She had a follow up Pulmonary appt, that her nurse and I took her to. The dr, nurse, and I all had an uneasy feeling about her high heart rate, high blood pressure, and short history of dropping saturations. The Dr admitted her to the hospital, to evaluate her further in case it was indeed pulmonary hypertension. The tests were all coming back negative for any illness or Hypertension. Kayli's white blood count was slightly elevated, but illness was not the cause. When I touched Kayli's left leg, she cried out in pain. I requested an xray, and the results came back with 2 broken bones above her left ankle. She has a broken Tibia and Fibula. We then were on a search to figure out how this could happen. Kayli is in no threat of being mishandled or abused by the nurses (or our family), so we started looking at her Vitamin D and Calcium levels. She was placed on supplements while waiting on results. Upon further testing, her levels were fine, so she was taken off the Vitamin D supplements. The PICU dr concluded that since Kayli has not been in her stander (due to her previous hospital visits and AFO's not fitting her anymore) her leg bones became weak and fragile. Kayli was in a leg cast, but found a way to kick it off! lol She then had a cast the entire length of her leg, above her bent knee. She kept that one on for 2 weeks! Yesterday, she had a half cast (of American Flag colors for New Years) put on. So far, she is tolerating it and has not kicked it off! lol
When we got home from the hospital, her oxygen levels continued to drop. It ended up being because both her concentrator (oxygen) and compressor (mixer) were broke! We have had them replaced, and Kayli's saturations have returned to normal! :D
On December 20th, I got a devastating call. My Mom, Kayli's Grandmother, was in a car accident and died. On the way home from Bible Study, she went unconscious and her vehicle crashed into trees and landed on a guardrail. Kayli's Grandmother did not feel pain, nor did she suffer. She never regained consciousness. An autopsy was not done, so the reason for death is unknown. Our family has been grieving, now for 2 family deaths in the month of December.
While at the private viewing and then the family Christmas Eve party, someone in our family was sick and passed the flu bug on to the rest of our extended family. Our boys had their turn with the flu, but Kayli received her flu shot and did not get the flu!! :D
Today, January 1st, of 2013 starts a promising year of change for our family! We are now using a different (DME) supply company, changed insurances, and are quite possibly changing nursing agencies! We hope to find optimal support for our family's health!
Tomorrow, January 2nd, Kayli is going under anesthesia for a bronchoscopy. The ENT surgeon will be checking her trach size, looking for granulations, and overall evaluating Kayli's airway! She has not had this follow up surgery for more than 1.5 years! Kayli is in great spirits, and is the healthiest of us all!
Recently, Kayli has shown more improvement in her strive to communicate! She now "sighs" when she wants to talk, and is tracking with her eyes consistantely! We acknowledge her attempts, and assure her that one day we will find a way for her to openly communicate from within her body! At school, and now at home, we are working towards providing her with an FM system, so that she can clearly hear us without confusion of disturbing background noises. We are also working towards training her eyes for eye communication!
Yes, 2013 will prove to be a year of change!! With Faith and Hope, change is a good thing! <3
God Bless You!
Kelly
Kayli's Mommy
When Kayli's surgical date came mid December, I was uncomfortable with putting her under anesthesia with the new diganosis of Pulmonary Stenosis, so Kayli did not have surgery. The surgery date came and went. Then a night shortly thereafter, Kayli was crying inconsolably. Her saturations (oxygen level) was dropping, and she continued to be inconsolable throughout the next day. She had a follow up Pulmonary appt, that her nurse and I took her to. The dr, nurse, and I all had an uneasy feeling about her high heart rate, high blood pressure, and short history of dropping saturations. The Dr admitted her to the hospital, to evaluate her further in case it was indeed pulmonary hypertension. The tests were all coming back negative for any illness or Hypertension. Kayli's white blood count was slightly elevated, but illness was not the cause. When I touched Kayli's left leg, she cried out in pain. I requested an xray, and the results came back with 2 broken bones above her left ankle. She has a broken Tibia and Fibula. We then were on a search to figure out how this could happen. Kayli is in no threat of being mishandled or abused by the nurses (or our family), so we started looking at her Vitamin D and Calcium levels. She was placed on supplements while waiting on results. Upon further testing, her levels were fine, so she was taken off the Vitamin D supplements. The PICU dr concluded that since Kayli has not been in her stander (due to her previous hospital visits and AFO's not fitting her anymore) her leg bones became weak and fragile. Kayli was in a leg cast, but found a way to kick it off! lol She then had a cast the entire length of her leg, above her bent knee. She kept that one on for 2 weeks! Yesterday, she had a half cast (of American Flag colors for New Years) put on. So far, she is tolerating it and has not kicked it off! lol
When we got home from the hospital, her oxygen levels continued to drop. It ended up being because both her concentrator (oxygen) and compressor (mixer) were broke! We have had them replaced, and Kayli's saturations have returned to normal! :D
On December 20th, I got a devastating call. My Mom, Kayli's Grandmother, was in a car accident and died. On the way home from Bible Study, she went unconscious and her vehicle crashed into trees and landed on a guardrail. Kayli's Grandmother did not feel pain, nor did she suffer. She never regained consciousness. An autopsy was not done, so the reason for death is unknown. Our family has been grieving, now for 2 family deaths in the month of December.
While at the private viewing and then the family Christmas Eve party, someone in our family was sick and passed the flu bug on to the rest of our extended family. Our boys had their turn with the flu, but Kayli received her flu shot and did not get the flu!! :D
Today, January 1st, of 2013 starts a promising year of change for our family! We are now using a different (DME) supply company, changed insurances, and are quite possibly changing nursing agencies! We hope to find optimal support for our family's health!
Tomorrow, January 2nd, Kayli is going under anesthesia for a bronchoscopy. The ENT surgeon will be checking her trach size, looking for granulations, and overall evaluating Kayli's airway! She has not had this follow up surgery for more than 1.5 years! Kayli is in great spirits, and is the healthiest of us all!
Recently, Kayli has shown more improvement in her strive to communicate! She now "sighs" when she wants to talk, and is tracking with her eyes consistantely! We acknowledge her attempts, and assure her that one day we will find a way for her to openly communicate from within her body! At school, and now at home, we are working towards providing her with an FM system, so that she can clearly hear us without confusion of disturbing background noises. We are also working towards training her eyes for eye communication!
Yes, 2013 will prove to be a year of change!! With Faith and Hope, change is a good thing! <3
God Bless You!
Kelly
Kayli's Mommy
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