Kayli is home and doing well!

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 

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 

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.  

  

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

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!