Thursday, June 27, 2013

Hoping and Praying it's not too late for spine surgery!

Both surgical clearances are in now, and we got the call from the surgeon's office, but.... the surgeon wants to see Kayli on Monday, rather than set a rescheduled surgery date right now. Please pray that the Potassium overdose (that emergently cancelled her Halo surgery) hasn't ruined her chance for corrective spine surgery! The surgeon originally gave Kayli a 3 month window to have the spine surgery. With the setbacks, and progressing spine curvatures, we are praying it isn't too late to help Kayli! It's going to be a long weekend....

Wednesday, June 12, 2013

Heart issues and K level issues, but she is getting better!!!

We Believe!!!!  Yesterday, we found some blood in Kayli's ear and we were afraid it may have been a sign that she had blood on her brain, but it turns out it is an ear infection! (phew!). Then when she slept last night, we found that her heart was skipping beats frequently. A quick call to the Cardiologist, and we were somewhat set at ease, hearing that it wasn't life threatening (although still a concern). Before going to bed last night, I stood by her side, until she started responding as I stroked her hair!!!! This morning, Kayli got a halter monitor ( a monitoring system for her heart rhythm), which she is wearing for 24 hours. This will give the specialist a better idea of what her heart is doing. Kayli is not completely herself, but she IS getting her feisty attitude back!! She has even started tracking us with her eyes again!!! She isn't squeezing our hands yet, but we are starting to see wonderful signs that she may completely pull through this!  Her Potassium level came back critically low again today, and we are treating her at home for it. The IV antibiotics are working, and her wbc's are down. We hope to see better K levels in the morning when she gets more blood work done at the hospital. We will turn her halter monitor in tomorrow, and take her in for an echo on Friday. Thank you so very much for all your thoughts, love, and prayers!!! God is answering our prayers with grace and mercy!! He has Blessed us with another day with Kayli!!! 

Tuesday, June 11, 2013

Kayli lost her smile...

Please pray for Kayli, our family, and her nurses. It is truly the hardest thing to look lovingly into someone's eyes, only to realize that they don't recognize you anymore. She doesn't even squeeze our hands, nor smile anymore, but looks scared. Please pray that Kayli regains all that she has lost. We have hope that rest, faith in the Good Lord, and eventually therapy, can get Kayli through this! The next couple of weeks will tell us if this is her new baseline, or if she will regain all/most that she has lost. Our hearts are broken.... <3 

Monday, June 10, 2013

Kayli is home!! :D

Kayli update:  She is home in her own bed tonight, and resting comfortably, although she is not herself yet.  Her UA culture shows typical cathing colonized bacteria, but in order to release her from the hospital today, I agreed to give her IV antibiotics via her chest port at home until the results clear her of infection. Fortunately, since I was trained on giving IV antibiotics, Kayli does not have to be inpatient for the treatments and is able to be home tonight.  Once the culture comes back, we will know if she needs to continue the antibiotics or not.  Kayli will be getting a blood draw from the comforts of her own room for the next 3 days, and we will be giving her more appropriate doses of K (Potassium).  Fortunately, the pharmacist helped us find the overall, devastating reason for the high K levels, so we are aware of the mistakes made and are making every attempt to prevent it from happening again. Please keep Kayli and family in your prayers, as we recover from the recent trauma. Kayli's Celebration of Life, and her spine surgery will be rescheduled.  I hope we did not inconvenience anyone by cancelling at the last minute. Thank you for all your thoughts, love, and prayers! <3 

Kayli update~ stable condition

Kayli update: Kayli's Potassium level has gone down to just below the normal range, so nothing serious, but something to continue watching.  Her Sodium levels are only 2 points away from normal range, so they are coming down nice and slow (like we want), and her tremors are also decreasing.  Her blood sugar level is remaining in normal range. 

Explanation: We think the reason Kayli's Potassium (K) levels were extremely low, requiring a hospital visit on Friday, was because the increased Xopenex nebs (breathing treatments) lowered her K levels (as a medication side effect).  The ER gave her a K-rider (Potassium via IV) which raised her K level, and since we didn't give Kayli any more Xopenex nebs, her K levels stabilized instead of dropping again, which eliminated her need for further K supplements.  A member of the Ketogenic diet team ordered K supplements, thinking the low K levels were a result of the Ketogenic diet.  When Kayli was given the K supplements, it raised her K to a lethal level.  The PICU dr said that anybody else with a typical heart would not have survived the swift change in K levels.  But since Kayli's heart has been through so much, this was just another variable for her heart to adapt to! lol  Kayli's was in Vtech, which means her upper heart quads were not beating, and her bottom quads were quivering...yet she pulled out of it rather than going into cardiac arrest!  Kayli is certainly a fighter, and has been Blessed with another miracle! <3 

I am sorry that I have not gotten back to those of you who have called, texted, emailed, and/or messaged me.  Our day was a bright one, spent with visitors who share such an amazing love for Kayli!  I can't wait to post pictures of her cake that Kim so graciously delivered!  I hope to catch up on posting pictures, tomorrow.  Thank you all for standing by us, supporting us, and praying for Kayli!  Good night and God Bless! <3  

Sunday, June 9, 2013

Kayli's Celebration of Life today has been Cancelled!!

KAYLI's CELEBRATION OF LIFE HAS BEEN CANCELLED.  Although Kayli is stable today, due to the life threatening condition Kayli was in yesterday and the stress that she has been through, Kayli will not be attending, and our family will be recovering from the traumatic events.  We feel it is appropriate to cancel the Celebration at this time.  Kim, the wonderful and supportive baker of her Celebration of Life cake, will be bringing her cake to the hospital, so please feel free to stop by to visit Kayli, and help us eat her cake! Kayli is at St. Alexius Hospital, in the PICU (pediatric intensive care unit).   The address is 1555 Barrington Rd. in Hoffman Estates, IL  The phone number here is 847-781-3921 and visiting hours are 10am -8pm.  She can accept flowers and Mylar balloons, please do not send/bring latex balloons. We hope to bring her home soon, so please do not send anything to the hospital if it is not expected to arrive by tomorrow afternoon. If you wish to send get well cards, please send them to our address, Po Box 2 Cary, IL 60013.  We regret any inconvenience this cancellation has caused.  We hope to reschedule the entire extravagant Celebration of Life, in the short future, when Kayli is in a better position to attend.  For up to date information of Kayli's current hospital stay, please follow her on her fb page at or online at her blog,  Thank you for understanding.  Much Love, Kayli and Family <3 

Kayli, with Trisomy 18, survives "incompatible with life" again!!!

Kayli was rushed by ambulance to the hospital today, because after 2 newly prescribed supplemental potassium meds were given, her heart rate accelerated to more than 200 bpm and them dropped to as low as 38 bpm (beats per minute) while in the ambulance.  She was unresponsive, yet her whole body twitched uncontrollably.  Once at the hospital, emergency meds were given and Kayli was not responding.  It was not looking good, and the paddles were pulled out. There was nothing stable about Kayli's condition, and everyone's face showed the grim reality that Kayli was not going to pull through this.  The team tried the emergency medication a second time, but it still wasn't affecting her status.  Her heart rate was quickly approaching 300 bpm (beats per minute).  As it climbed in the high 280's, I asked to have a moment with her, and I put my lips to her ear.  As my tears fell on her face, for the first time in her life, I begged my daughter to stay with me.  I told her I was not ready for her to go yet.  I told her that I know it's selfish of me to ask, but I needed her to stay with me.  While talking to Kayli, her heart rate started dropping.  Even with all the frantic exclamations throughout the room, there seemed to be a break in scurried shuffling of feet, as I could hear sighs of relief swell in the air.  Kayli was not out of the woods, but there was a glimmer of hope left.  Kayli was now trying to fight whatever it was that threatened her life.  The dr came in the room to whisper the blood results to fellow dr's... "her Potassium level..." I felt my heart jam in my throat.  " at 8".  Because of the critically low Potassium level yesterday, I knew immediately that an 8 was high.  I asked the dr how bad the 8 was....what does this number mean?  What can we do?!! I was shocked to hear the words that I had heard so many times because of Kayli's diagnosis, but never did I think I'd hear them now.  "Her level is at 8... which is incompatible with life".  Incompatible with life.... damn those 3 words!  This time not to describe Kayli, but to describe the new found condition she was in.  The dr went on to say nobody can survive with such high Potassium levels.  It is a fatal condition even at a lesser number.  She has fragile heart conditions, and yet her heart is withstanding this fatally high level that directly affects even the most fit of hearts.  As the room of people dealt with the shock and grim prognosis, the dr ordered emergency meds to try to back out of the extremely high number.  Over time, the Flight for Life was called, and Kayli's ride was being prepared to take her to another hospital.  She was far from stable, but we needed to get her from point A to point B if she was to have any chance of surviving this.  Kayli's next ride was uneventful, in fact, her stats seemed to get better during the short trip.  Before we left, I asked for records of her stats, and a cd copy of her chest xray.  Once at the new hospital, I looked at her medical records, and found that Kayli's condition was actually worse than they thought it was.  Her Potassium level was more than 8!  I was told others have passed away with levels in the low 7's and yet Kayli's level was at 8.2! Her blood sugar level was 227! After much work, I now sit at her bedside, where Kayli is nearly stable now.  She has some body twitches that did not go away with Ativan, but she is now finally sleeping.  We are very happy to see her tiny body finally resting and hopefully recovering.  The nurses and dr's agree....if you say nobody can survive it, you have not met Kayli yet. Against all odds and scientific belief, Kayli has once again survived the impossible!  She had a Potassium level of 8.2, and a heart rate close to 300 bpm and survived!  SHE DIDN'T EVEN GO INTO CARDIAC ARREST!!!  We have not yet cancelled Kayli's Celebration of Life, because with Kayli and God, we never know what tomorrow will hold. I hope to update you with wonderful news later this morning... until then, Good night, and God Bless! <3 

Wednesday, June 5, 2013

When a special needs family goes to the store

When a family with special needs goes to the store
by Kelly Whistler

When a family who has a loved one with special needs, goes to the store, there are many things the family does to prepare for the short trip.  I would like to share with you, what we put into making our short trips a success!  This is meant to enlighten you of our world, and to share our life as the blessings we have in them. I invite you to see the entire picture, so you don't mistaken us for a family in despair.  To get to the point where you see us out and about, you need to know that we have put a lot of work into it and are proud that we got to that point to be with you!

Things we contemplate for our short outing:

1. Do we have a nurse to come with to suction during the drive?
2. Should we pack up the portable feeding pump, or wait to go in between scheduled feeding times?
3. Do we have enough formula not only for the amount of time we expect to be gone, but also a back up supply (in the event I lose some of it to a spill, or if we get into an accident and the hospital doesn't carry the formula, or if our trip out lasts longer than expected).  We cannot simply stop at a fast food joint, nor can our child deviate from her strict seizure diet.
4. Are there any medications due in the time frame we expect to be out of the house?  If so, we need to draw them up and pack them in ice if need be.  We have to label the meds, and pack them safetly to prevent spillage or getting into the hands of someone else.
5. We will work around catheterizing schedules, sleep schedules, medication schedules, feeding schedules, nursing schedules, dr appts, thearpy appts, work schedules, household maintenance (laundry/dishes, etc), sibling extra curricular activities, school schedules, DME (equipment and supply) deliveries, IEP mtgs, insurance appeals, phone calls, and general time constraints to go to the store.
6. Do the store hours work well with our schedules? Does the store carry our needed items, or will we need to venture into more than one store?  If so, this will mean more than one transfer in and out of the vehicle, another fight for a parking spot, and more supplies for the extra time out.
7. Does the wheelchair lift work right now, or is it stuck in a position where we can't get in/out of the vehicle? What will we do if it stops working again (for no apparent reason) and we are far from help?  We must pick a store close by, or make sure our help will be available to come help us.
8. Is there handicapped parking, and if so is there usually a spot open? We need a spot that allows for the lift to open on the right side of our vehicle. Hopefully others are respectfully and properly using the spots, so we don't have to wait until a spot opens up.
9.  Do we have our handicap Plackard, so we don't get towed or ticketed...even though the lift is clearly visable?
10. Is there enough battery charge for the suction machine, nebulizer, and pulse oximeter?  If not, do we have extra battery supplies?
11. Do we have the car chargers, or did one of the kiddos "misplace" it again?
12. Do we have enough portable oxygen, or are we waiting on a delivery from the DME?
13. Is the go bag packed well? (we will verify all the emergency supplies are replaced and available in the bag)
14. Is our child well enough to travel?
15. Is there an epidemic of a virus going around?  We cannot bring our child into a compromising ill environment because that could end his/her life or put him/her into another hospital stay.
16. Do I have money for the items, or is that money already allocated for one of the many over the counter medications that the insurance won't cover?
17. Is the store handicap accessible?  Do the doors have automatic open, or will we need someone to help us open the doors?  Are the aisles wide enough?  Is there an elevator?  Are the doorways wide enough?

Of course, with each individual care need, the list can go on, but this is a good starting point in planning our trip to the store.  Where you may be documenting first words, and first trips to the store in your child's baby book....we are marking the moments off a bucket list for our child and family.  <3

What YOU can do when you see us in a store:
1. Come up to us and acknowledge the effort we CHOOSE to put into a rare trip to the store.
2. Smile and tell us you see the spirit our child has, thriving even though the odds are stacked against him/her.  If we are in a store, it is likely that our child is having a great day and is at or near his/her best!
3. Ask us what makes our child so special (not "what is wrong with him/her") because we do not see our child as having anything "wrong", but rather as an extraordinary, loved one.
4. Ask before touching our child because we know our child's boundaries best!
5. Tell us about your similar experiences with the condition our child has because EVERYBODY likes to feel connected to someone in a similar journey!  You may be that one degree of separation that God has planted in our day!
6. If you must stare from a distance, please add a smile and maybe even a wink! We are proud of our little miracles, and like to know you are impressed with them too! :D
7. Invite your child to connect with our child, allowing them to ask questions.  Please do not hush your child, thereby eliminating the opportunity to share compassion, knowledge, and acceptance of individuality.  Who knows, your child may grow up to find a treatment or cure for our child's condition...simply with a seed planted that day!
8. Talk to our other children with us too!

When you see us in a store, YOU can celebrate with us!  We love to hear how well taken care of our child is, and how your heart warms when you feel the smile, or the spirit our child has sparked in your day.

Other things to take notice of: At any point in our day out, you may see us with a camera.  We bring a camera to capture the rare moment that our special needs child goes to a store, or smells a flower.  We want to capture the "normal moments", such as going to a store, as if they may never happen again...because there is a great chance they may not.  Every moment with us is reason to celebrate! If we waited for a "better moment" to capture, we may one day be sitting without the physical memoirs to smile and cry over when we are missing our miracle child. <3

Tuesday, June 4, 2013

A race against time

Kayli had her pediatric pre-operation appt today, so her dr could examine her and give a history and physical report to the surgeon and anesthesiologist, for surgery clearance.  He said Kayli's spine has greatly changed (for the worse) and her recent breathing issues are directly related to her rapidly progressive spinal curvatures.  Today, we were instructed to take her to the ER for immediate medical attention if we need to increase her oxygen any more.  The Dr. said she may not make it much longer at home without the support that the hospital's intensive care unit can give her.  We are all crossing our fingers and praying that Kayli can make it another week at home, so she can be with us at her Celebration of Life this Sunday instead of on life support at the hospital.  Her spine surgery cannot come soon enough! It appears that every month that goes by, her spine curvatures are progressing at a rate of at least 10 degrees a month!  Typically, a 5 degree increase per YEAR is average progression, so Kayli's is drastically progressing and is limiting her chest capacity to expand her lungs and breathe.  Please keep those prayers coming!  We want Kayli to stay home for another week before the surgeon is ready for her, and she goes inpatient to prepare for spine surgery! Although we know what WE want, we also know that God has the plan and only He knows of the perfect timing.  God has done amazing things through our family, and given us such wonderful insight to His miracles among us. We continue to testify of His love for Kayli and all of His children.