Tuesday, April 30, 2013

Kayli is coming home tonight!!!

Kayli will likely be going home tonight!!! We are waiting until Kayli's 9pm IV antibiotic medication to be given, then she will be released to go home and sleep in her own bed! :D  
It looks like the only hold up, may be getting a nurse in the morning (at home) to administer Kayli's IV antibiotic (for her UTI).  If we are not able to get an administering nurse (for her new chest port), then I have offered to bring her into the hospital's department, where Kayli can get the IV medication delivered. So, with fingers crossed, I am somewhat confident that Kayli is coming home tonight!!! <3 

The dime. Faith in every day

I believe God is in our lives every moment of every day...if we allow Him to be. I talk to God, pray to God, and laugh with God throughout my day. There are small and large miracles around us, if we believe and have Faith in Him. I believe that if you look within the routine of your day, you too can find Him where you least expect Him to be. I want to share this short story with you, and then ask that you too, find God in your day....

(Original post date was Nov. 24th, 2011)
My Faith today: I was at the grocery store getting last minute ingredients for today's feast. I was running short on money and wasn't sure I could get the last item, a second gallon of milk, so I called my husband and asked him "can we get through the day without buying a second gallon of milk?" He told me no, they boys want me to make pudding!" I told him "do you REALLY want me to spend our last DIME on milk or should I save the money?" (we are talking our last $3 to our name, here!). He left the decision up to me. So, I got the milk, and headed to the front of the store, deciding I would go to the self checkout line so I wouldn't be embarrassed if I didn't have enough money. I would just watch the amount increase, and if I was too close I would put aside an item and leave. For some reason, I found myself in the regular checkout lane with minimal wait time (ON THANKSGIVING DAY!). I set my purchases down on the belt making sure to leave space between purchases. Then, as I waited and starred off into space, I held the money in my pocket and prayed. I prayed that God would save me from feeling embarrassed if I was short money. Then I laughed to myself as I argued with myself..."God wouldn't just make money appear in my pocket...or out of thin air" "no way, he would make it a GREAT BIG production so EVERYONE would know of his great power!...like parting a sea or something...but not in a grocery store!" I chuckled that I would have such an argument with myself, but felt comforted in the fact that I that I was laughing and not so scared anymore. I looked at the girl in front of me and she was starring at me....as if looking through me! WEIRD! She didn't say a word, didn't even smile....just looked through me and turned around. I looked down at my purchases on the conveir belt....and there WITH my items, appeared a DIME! The DIME that I asked my husband "do you really want me to spend our last DIME?" LOL God had shown me he would not leave me without... He will provide for me! It was my turn to check out. I had enough money for all the items, including the milk! AND -----> I got a dollar and change back! God is good....all the time! I laughed the whole way home, and told the story to my boys. :D We all smiled and laughed in awe of God's great power....in a grocery store! Thank You God for being in my day! ♥

Kayli met, and was Blessed by the Cardinal and Arch Bishop yesterday!

The following, is an article in the Daily Herald today.  Professional pictures of Kayli with the Arch Bishop and Cardinal, Francis George, to come.  
Some of the smallest patients at Alexian Brothers Health Center in Hoffman Estates had a special visitor Monday.
Cardinal Francis George spent the afternoon walking the halls of the new Women & Children's Hospital, sprinkling holy water on the doors of those in intensive care, blessing the doctors and nurses and personally praying with many families, including women in labor and sick children.
 The cardinal was unable to attend the March blessing of the new hospital because he was in Vatican City for the election of Pope Francis, so he made a special stop at the Hoffman Estates facility Monday to bless the families and staff members and pray with some of its newest patients.
"Let us ask for God's blessing on all those who are patients in the Alexian Brothers Women and Children's Hospital and on all the staff who will devote themselves to caring for these patients and their families," he said during the blessing.
George stopped to pray with pregnant women in between contractions and blessed the rosary beads of a father-to-be along the way. He asked one couple in Spanish if this would be a first child for their family and if they were ready for all the blessings coming their way.
Maria Mora, of Carpentersville, was at Alexian Brothers because she started going into labor prematurely with what will be her sixth child. George prayed with her and reassured her by noting that he also was born premature and he turned out OK.
"I grew up Catholic, and I've praised him, but I never thought I would meet him and not like this," said Mora, in tears after George left her bedside.
When Dylan and Mackenzie Bockstahler were born earlier this month at only 27 weeks, each weighing less than 3 pounds. On Monday when George stopped in their room, parents Shellie Ptak and Jeremy Bockstahler of Bartlett said the twins were doing better and slowly putting on weight but would probably be at the hospital until July, their expected due date.
"It's always amazing when you see how fragile they are," said George as he stopped to bless the twins.
Several new parents said they were grateful for the cardinal's words and prayers.
"It meant the world, specially with their start, they need all the prayers they can get," said Kim Jones of Elk Grove Village, whose twins, Quinn and Alexandra, also were born premature last week.
"Someone once said that love and pain are twins, but they have a hard time recognizing each other once in a while," said George, who has struggled with his own health issues in recent years. A golf cart helped him get around long hallways, but he never hesitated to walk into each room or stop for a picture with nurses and new parents.
"This is a great service to bring a women and children's hospital of this caliber to the area," he said. "Here they will be not only cared for, but they will be loved."

Sunday, April 28, 2013

Trisomy 18 in an ER, tv show episode!

Did you know that the tv show, ER, featured a story of a 6 year old boy with Trisomy 18?!! 

All cultures and testing came back negative!!!

Kayli's blood and viral cultures came back..... everything was negative! Such wonderful, yet intriguing news! Since she is doing so much better in such a short amount of time, and all tests and cultures came back negative...it is likely that she was having a life threatening allergic reaction (imo) to the new heart med! If it was her spine, then she wouldn't be doing better. I can't wait for rounds tomorrow, to have the "going home" talk! If she continues to do well at the rate she is going, she could very well be home by Tuesday!!! ♥

Friday, April 26, 2013

Cautiously Stable!

Update on Kayli: Are you ready for some good news?!! We sure are! The kidney ultrasound came back negative of any issues (good news). The blood work is coming back slightly higher wbc, but still no indication that it is from infection because she was in a lot of stress (bagging) and is now on steroids. Both cause increased wbc (good news). Her Sodium, Chloride, and Potassium levels are out of dangerously low range, and increasing well (improvement). Kayli is still on the vent, but they have been able to decrease her oxygen to 75% now, and are starting the slow wean off the vent (improvement). Kayli is breathing over the vent (good news). She is still dropping oxygen rates considerably when on her left side, but she is starting to tolerate being on her back now (improvement). We have not had to bag her since this morning (improvement). Today's chest x-ray looks the same as yesterday, which means still no sign of pneumonia (good news). Her trach sputum shows Graham Negative Rods, but she has colonized Pseudomonis (a graham neg. rod) so unless the culture continues to grow, she does not have an infection. She is still needing significant support, but with the support, she is showing great improvements! The radiologist examined her chest x-rays closer (I wanted to make sure the pain wasn't from a broken rib, due to her low bone density), and verified she does not have any broken bones! (good news). Kayli is not being quite as sensitive to movements, CPT, and/or breathing treatments tonight! :D We cannot say she is on the road to recovery, because we have yet to find the reason for her quick decline, but she is definitely doing better than she was this morning. The team is saying, she is stable because of the great amount of support she is getting now. She is on IV Zosyn, a powerful drug that seems to be helping her UTI. It's hard to believe all this is from a resistant UTI (urinary tract infection), but so far everything else is coming up negative, so we don't have any other reason for the pain, nor respiratory distress. Overall, Kayli is doing better tonight, and is now considered to be cautiously stable. :D Please continue to pray for her comfort, and for our guidance. Thank you so very much! ♥

Kayli is on the vent

Kayli is on the vent settings now.  She did not tolerate the CPAP settings.  Kayli is very tired, and resting comfortably, on the life support.  Please pray for guidance, as we do not yet know the cause of her significant respiratory distress. The viral cultures will not be back for another 2 days, but there is great suspicion that she has a virus.  Her WBC went up from 14 yesterday, to more than 20 today.  This could possibly mean that she is at the beginning stages of a nasty illness.  The vent will help support her oxygen levels/respirations, to help her get through the intense distress she is experiencing. Thank you for your thoughts and prayers! 

Kayli is in the PICU

Kayli was taken to the ER yesterday, for respiratory distress.  She was admitted to the PICU (pediatric intensive care unit).  She had a roller coaster of a day, but ended the day in a stable conditon.

Kayli had a good night, but then at about 5:30 this morning, after giving her a breathing treatment, she de sated. Kayli had to be bagged for 1/2 hour, with her sats staying down in the 70's (a person's typical oxygen sats are usually 96 to 100%). She is now on the vent, with CPAP settings and is doing better. She no longer has any air movement in her left lung. We are all not sure why she is responding so poorly to movement, breathing treatments, and oxygen, but we are pleased that she is maintaining her oxygen sats while on the vent/CPAP. Her chest Xray and blood gas are still looking good. We do not have answers, but are anxiously awaiting her blood and respiratory cultures. There is talk of her possibly having a mucus plug in her lungs, which is likely to happen because of the high air flow respiratory had her on. A mucus plug can absolutely cause the respiratory distress she is in. The CPAP can help her loosen it up, so she can cough it up. There has been talk of Uro sepsis and blood sepsis, but thoughts are that is unlikely (but not ruled out). So....Kayli is now unstably-stable. For now, I am cautiously optimistic that she can pull out of this. At one point, I made a sarcastically funny remark, and Kayli smirked! lol We all laughed with her, and she smiled a bigger smile. Everyone here is working well together, and doing their best to help Kayli. With God and Kayli's medical team, she is in good hands! Please pray for guidance, as the medical team continues to search for answers. Thank you for all your love, thoughts, prayers, and support! ♥

Wednesday, April 24, 2013

Kayli is not doing well this week

Kayli is not doing so well this week.  She stayed home from school again today, because she is wheezing, and her heart rate is higher than usual.  She is requiring a lot of sleep, oxygen, and Tylenol.  She appears to have abdominal pain (she kicks, and pushes us away, when we touch her stomach), so we checked for a UTI (urinary tract infection).  We are having to catheterize her right now, and the with Cath's can come UTIs.  Her results came back positive, so she is on 2 antibiotics.  We are not sure why she is having such difficulty breathing.  Could be from a virus, or maybe from her significant spinal issues (now at an alarming, life threatening stage).  She does not have a fever, but she appears to be very ill.  Please keep her in your thoughts and prayers, as we try to figure out how best to help Kayli.  We hope to get her well in time for her upcoming spine surgery.  Thank you! <3 

Tuesday, April 23, 2013

More Birthday cards!!!

Kayli received more birthday cards (and I found some that I had set down and not included in the previous pictures)! lol  We are enjoying seeing the outpouring of love you have for Kayli!! All the Birthday cards she receives, will be put in Kayli's Book of Love and displayed at her Celebration of Life event (birthday party)! 

Thank you Nurse Amy, and Jane Pedersen! 

Monday, April 22, 2013

Kayli's Birthday Dinner

I added more to the "Kayli's first year" entry, so please be sure to go back and read the additional entry.  This is a short video of Kayli at her birthday dinner tonight.

Sunday, April 21, 2013

Kayli's first year of life

Claimer: Kayli's story is not to be used for sale or profit of any kind!

Kayli's first year
Kayli ate from a bottle (pumped breast milk) just hours after birth, even though we were told her reflexes would not be developed for the complex; suck, breath, swallow task of eating.  Although she was eating, she tired very quickly because she was born with major heart deformities (as most babies with a Trisomy syndrome are).  With the new found support of the Neonatologist, we decided to give her an NG tube (nasal gastric tube, or feeding tube), to help her get the calories she needed.  We learned that in order for her heart to be operated on, she would need to preserve her energy, in order to gain weight.  The NG tube helped with that, and also gave some relief to her fragile heart.  Eating orally takes a lot of energy, and puts stress on an un-repaired heart.  We did not know who we would be able to find to give her surgery, but we knew we as parents had to give her the best chance for life with us.

The day Kayli was born, I placed her chest against my chest, for Mommy time...and she cried. lol  She had a temper tantrum with every attempt to place her like that on my chest, so I would take her off my chest immediately for fear of stressing her heart.  She was fine every other way, but refused to lay on my chest. :-(  By the third day, I started getting brave and more confident that I wasn't going to harm her, or send her into cardiac arrest if I forced her to lay on my chest.  Before placing her on my chest, I spoke with her.  I said, Mommy needs to do something that you don't like.  I know you will cry, but Mommy needs "mommy time", so I am going to do it even though you will cry.  I will stop in 5 minutes.  You can cry the entire 5 minutes, or you can pout, but Mommy is going to do it anyways.  Each day, I took my 5 minutes of "Mommy time", and each day she seemed to be tolerating it more.  As the days went on, my Mommy time grew longer.  Today, it is Kayli's favorite position to be in!

After Kayli was born, I rarely left her side because we had no idea how long she would stay with us.  I would leave her side, only to pump milk, go potty, and eat.  I usually fell asleep at her bedside, holding her hand, with her fingers tiny enough to only wrap around one of my fingers.  One day, I awoke to my finger being squeezed.  I  startled awake, and looked down to see her trying to focus her sweet newborn eyes at me.  I squeezed back, and she squeezed again then went back to sleep.  That is the moment that I knew....she is just as much my lifeline, as I am hers.  I fell back asleep, awaking a short time later.  As I looked at her sleeping, I gently squeezed her hand.  She awoke to my squeeze, squeezed back, and we both went back to sleep with peaceful souls united.

Kayli was at the new hospital to see how her brain was formed.  We were told if she had any brain deformities, she may not be able to withstand the anesthesia for the heart surgery she needed.  Kayli was born with an ASD, VSD, PDA, and she had a double right outlet.  She would need surgery, or over time...she would die from it, as her heart wore out.  
I kept asking when the dr's were going to do the brain MRI, and blood work, and every time I heard "they are on order...tomorrow".  After 9 days of no testing, I told the team that if there wasn't a test on her within the next 24 hours, I was taking our baby and leaving! I didn't know it then, but they were waiting for her to die.  Within hours of my threats of leaving with Kayli, the team did a brain MRI.  Her MRI showed perfection.  Her brain was fully developed, and her brain waves were typical. She didn't even have seizures! That was great news!!! The next step was to discuss the pros and cons of heart surgery for Kayli.  We, as parents, needed to know all the information about our daughter, and the medical treatments, so that we could best prepare for it, and decide what was in the best interest of our daughter.
A board mtg was held at the hospital to discuss our intent to get Kayli surgery for the life threatening holes in her heart.  After the board mtg, we had a care conference to discuss Kayli's heart condition and treatment options.  In the care conference, we were given 4 choices. 1. do nothing, and Kayli will die when her heart wears out.  2. fix her ASD and VSD 3. fix only her PDA (a less risky surgery) 4. fix all her malformations (ASD/VSD/PDA/Double right outlet).  Hubby and I left the care conference to discuss among ourselves, with anxious hope that our daughter would be given the chance to live without a dark cloud of heart failure over her! Hubby and I went back to the Ronald McDonald House (an AMAZING place to stay while your loved one is in the hospital~there are no beds for parents in a NICU) with a spring in our step!  Hubby took the boys back home, so they could go to school the next day.  The next morning, when in the NICU with Kayli, 3 dr's called me into an office.  I thought it was to privately discuss the option we, as parents, had chosen.  Once the door was closed, 2 of the dr's told me "rumor has it you are going around saying we would give your daughter heart surgery".  I said "Yes!  We chose... " and the dr stopped me.  He said, we don't know why you would say such a thing.  I am telling you we would NEVER offer a child with Trisomy, heart surgery!  I was confused.  I asked the dr's why they changed their minds...what happened that would make Kayli ineligible for surgery now? I was told Kayli was never offered any surgical treatments, I must have misunderstood. I was taken aback...was he trying to say we never had a mtg, discussing the options?!! 2 of the dr's continued to yell at me, telling me they never gave any indications that they would ever treat our daughter, and if I misunderstood, they are sorry.  WHAT?!!! I pulled out my journal, turned to the page that listed the options (I always wrote things down so I could later absorb or look up what was told to me).  SEE!! WHERE WOULD I COME UP WITH THIS THEN?!!! The 3rd dr smirked, looked at the other 2 dr's and said "See... I TOLD you she writes everything down!" :D  I told the 2 dr's to quit the bullshit, and tell my why they changed their mind about treating Kayli.  The dr's back tracked and said yes, there was a mtg, but then they couldn't give me any answers as to why they changed their minds. After a while of arguing, and not getting answers, the 2 dr's said "we will have to have another board mtg, and get ethics involved".  Now, my education is in the social services field, so I know what ethics is...but my world was turned upside down because I kept running into dr's arguing they would NOT treat my daughter.  I though the dr's were referencing hospital lawyers in ethics, so I blurted out...what?  do I need to bring MY lawyer in to the mtg too?!  The dr's quickly quited and said no, we will have another board mtg to discuss Kayli's heart condition.  I asked why they wanted another board mtg...what had changed since the last mtg?! The 2 dr's still could not answer me, so I told them I wanted to sit in the board mtg, since they couldn't relay the information to me.  They told me I can't sit in, it's a panel of dr's only.  I said FINE!  Then set up a care conference afterwards, and I want ALL the dr's in the board mtg to be there! 
The next morning, as I am in the NICU with Kayli, another attending dr came up to me and said "ok, for surgery she has to gain weight, and be 4 months old"... ??? I said what?  Then that means she CAN have heart surgery then?! The dr looked at me with her head cocked to the side and said, what?  I asked her why the change in mind again...what is being said in those board mtgs that everyone keeps going back and forth about treating Kayli?!!  Her response was....
there was no other board mtg....... 
So, the 2 dr's did not agree with treating a child with Trisomy, so they isolated me when my husband left, tried to make me feel like I was crazy by saying there was never a board mtg, then tried bullying me so I would walk away from the hospital, thinking Kayli was not eligible for heart surgery.  
We took Kayli home the next day, and I made it very clear that we would be back for her heart surgery at 4 months old! After 2 weeks, we walked out of the hospital, knowing our daughter's only major complication was her heart.
Once home, we finally found a pediatrician willing/able to help Kayli, a child with Trisomy.  Looking back, it was meant to be him, and I am so grateful all the other pediatricians refused to take on Kayli's care. :D  

Over time, Kayli continued to grow.  She had mild Tracheomalacia, so she needed some air pressure/oxygen, but with her heart condition, she could not have too much oxygen.  If given too much oxygen, her arteries would open, and her non-oxygenated blood would mix faster with her oxygenated blood, through the major holes between all four chambers of her heart.  She need surgery.  Kayli's dr's said they don't know how it is that Kayli is not a "blue baby" with the amount of mixture of her blood.  Kayli's heart condition was significant...but she adapted with it.  Kayli worked with what she had.

I started asking everyone around Kayli to "take something from Kayli".  There seemed to be an abundance of medical professionals and people surrounding her, who wanted her to die.  Instead of fighting them, I started telling them, "Kayli is here for a reason.  If you really want her to die...then you need to take something from her.  Take medical knowledge of Trisomy, take a stronger faith, take love...take...something... so she can fulfill her purpose."  I left it all in their hands.  Every person who met Kayli, was told to take something from her.  After the odd looks, I would explain her mission.  She is a child of God, and is with us for a purpose.  All I ask, is that you Take Something From Kayli.  Take something from her, so she can serve her purpose, have eternal peace, and leave an everlasting testimony of God's love for her and all other "imperfect" children.  Take Something from Kayli.... now I ask, have YOU taken something from Kayli?

Kayli came home again after only 3 weeks of the heart surgery and cardiac arrest. She started getting very ill shortly after being home. She had a fever, so we took her in to a level 3 hospital. The hospital sent her home, saying "She has Trisomy 18...she is dying from it". We went home, only to go back a couple of days later. She was admitted to the PICU again, and the dr again told us "she needs to go home and die" (his words). 7 weeks after her heart surgery... We brought her back once again (it was the only local level 3 hospital). Her fever remained high, and she still appeared to be gravely sick. I demanded blood work, and after days of waiting...they finally did some testing. It came back that Kayli had Endocarditis (heart infection) and Sepsis (entire body, blood infection) from the cardiac arrest. The hospital FINALLY treated Kayli with antibiotics, but only after surviving 7 weeks with deadly infections!
Kayli was treated and released from the hospital. But only a month later, at only 7 months old, a home care nurse gave Kayli something that she was allergic to. It closed her throat, and damaged her already weak Trachea. She was rushed to a local hospital level 2 hospital (her birthplace), that did a wonderful job of treating her in their ER! But...they were only a level 2 hospital, and Kayli needed a level 3 hospital because she had a complex medical history. She was transferred to the same hospital that once refused to treat her deadly infections, with antibiotics. Once in the PICU room, I told the nurses and dr's that Kayli was refluxing something she was allergic too, and it seemed to open her throat if she was suctioned. Only moments later, I saw that Kayli was choking and gagging, and I knew she was working toward another blue episode. I begged the nurse to get suction catheters in the room, and she refused. Once Kayli started turning blue, the nurse walked up to Kayli's bed, lifted a hand to the wall (where the code button was), then turned to look at Kayli, put her hand down, turned her back to Kayli, and walked away. It was a God moment, because had she not lifted her hand to the button, I would not have known what to do. I would have stood there helpless, watching my daughter die before my very eyes. Since I was shown the button, I slammed my hand on it, and alarms went off. The loud speaker roared "CODE BLUE, PICU, RM ...." The dr's rushed in with adrenaline pumping through their veins, as my daughter fought for a breath of life. The dr's and nurses who ran to my daughter's side yelled for descriptions of my daughter's condition. The nurse who refused to help my daughter yelled back, "I DIDN't PUSH THE BUTTON....", pointed at me, and said "SHE DID!!! ASK HER!!!". I responded with a "AND GOOD THING I DID! SHE'S BLUE!" (yes, for all you nurses out there...I now know that code blue does not mean someone is blue. lol) I spatted out the way they could help her, instructing the dr's to find a yankur (suction catheter) to help my daughter breath. Thankfully, the dr ordered someone to get a yankur (that is suppose to be stocked in all rooms), and once he suctioned Kayli's trachea, she gasped another breath of air. Her airway was badly damaged. Kayli was given oxygen, but she still gasped for air. A couple of days later, after asking for an ENT consult to check her airway, the dr pulled us into his office. He gave us the "Trisomy talk" and said Kayli will die. He then pulled up her brain MRI scans from the hospital where she had the cardiac arrest, saying she has central apnea and there is nothing he can/will do to help her. She needs to go home and die. I rebutted with the facts that I had known about central apnea...you don't gasp for air or choke when your brain forgets to take a breath. Kayli had obstructive apnea...she needed to see a specialist to tell us what damage had been done to her trachea, and how we could help her. The dr refused to give treat Kayli anymore, and discharged her with "she needs to go home and die" as his last words to us. Kayli no longer was welcome in that hospital PICU. We packed up her stuff, was escorted to the front door, and told to go home.
Once home, we knew Kayli needed help, but did not know what to do. So, we celebrated her life together. We bought kid wine, and cuddled with a very sick, Kayli. We talked about all Kayli brought into our lives, and showed her love.

The next morning, Kayli was still with us, but was very ill. The nurse had to bag her several times over night. She suggested we go to another hospital, but we explained that there wasn't a level 3 hospital that was willing to treat her, with her Trisomy 18 diagnosis. The nurse suggested going to a faith based hospital. She offered to stay after her shift, to help take Kayli on the long drive, while I stayed back to take the boys to school. I was to meet them in Chicago after dropping the boys off at school. After a very short while, I got a call on my cell phone. Kayli was not going to make it. The nurse was in the back seat, bagging Kayli and couldn't stop her from dropping. Kayli was blue and there was nothing we could do. In hindsight, it was a God moment, because they pulled over to the closest hospital, which was a faith based hospital. Once in the ER, the team quickly responded with Epinepherine, and other life saving measures. Once Kayli was stabilized, she went up to the PICU room. The ENTs were called to examine her, but they refused to help her. They claimed to not be trained in taking care of pediatrics, but the intensivist and we knew better....they refused to help Kayli because she has Trisomy 18. Legally, they can hide behind their excuse...but it was common knowledge that they did surgery on many other kiddos. The intensivist treated her, believed in her, and advocated for her. He called the Chicago hospitals, asking for Kayli's acceptance to their hospital for treatment.... all calls were returned with refusal...Kayli has Trisomy 18. 3 weeks after the initial incident, we were walking out the PICU door because Kayli was doing better. We were told to come back when she needed to (we all knew she would be back in a day or 2), and were waiting on the discharge papers when the intensivist got "the" call. An ENT agreed to examine her!!!! Kayli was transported to a faith based hospital in the city!!! There was new found hope in Kayli's treatment plan!!
The transport to the new hospital went very well. I nervously followed, hoping and praying she would not pass away while in route to finally getting the medical help she needed. Within half an hour of arriving in the PICU, the ENT examined her, asking "why does she need me? She seems fine". I told him that once she goes home, she can't breath again. Something must have happened to her trachea, and since he is not against treating a child with Trisomy....would he please just look at her? He agreed, and set up a sedated bronchoscopy for the following morning. When Kayli was in the Pre-Op room, he came and spoke with us. He was gentle in his words, and we expressed the knowledge that she may not make it out of the anesthesia...but she would die anyways, if we didn't do something to figure out how to help her. We parted, as we hugged our daughter and he went to OR station. The anesthesiologist walked up to us, and scolded us...saying, "how dare you send your child in the OR!" "She will die! You should be taking her home so she can die in your arms, not in the OR!" We stood there stunned, with tears storming down our cheeks. More lashing came at us, "You are sending her in there to die, you know!!! She will never come out of there alive!" With uncontrollable heartache, we thought....How were we, as her parents, going to be able to send our daughter into an OR with an anesthesiologist who is suppose to be keep our daughter alive...and yet tell us she will not do so?! The ENT ran across the Pre op, reprimanding the anesthesiologist, and telling her to GO! Just moments later, they wheeled Kayli into the OR....
A little while later, as we nervously sat in the surgical waiting area, we got a call from the OR. Terrified of what the call could be about, we picked up their phone. Kayli was still alive, but....the surgeon had tried 3 times, before being able to fit a breathing tube down Kayli's trachea. She had spent the last 3 weeks, breathing through a pinhole. Her trachea was so damaged, she needed a trach. The surgeon asked our permission to trach her. We gave verbal consent, after asking if she could still come home to live with us again. He said she does not need a vent, just a trach as a casting technique, to keep her airway open. Kayli not only survived the anesthesia, but the surgeon was able to rectify the repercussions of the horrible accident that took in our home. ♥ Kayli still has her trach, 3 years later. We have been told she may be able to have it removed, but we know how much it took to give her a stable airway, we aren't letting go of it anytime soon! :D
After the trach surgery, Kayli was transported to a respite home, so we could continue to learn how to care for Kayli with a trach. We visited daily, but needed to set up her home care before she could come home to us. That also gave us an opportunity to add electrical outlets to our house, so that if an existing electrical line sparked, or malfunctioned, it would not affect Kayli's equipment.While in training, we learned to work together in changing her trach. One of us would hold the new trach, while the other removed the old trach every week during trach changing time. I have to admit, taking care of her with a trach was intimidating at first. But we pushed forward, knowing we would do everything we could to get Kayli back in our home with our family. While in the respite home, we decided to get Kayli a more permanent feeding tube, called a G-tube. Before she had passed away and came back to life, she would pull her NG tube out of her nose, so we knew she did not like it, even though she lost the ability to pull it out. 
While in surgery, Kayli surgeon perforated her bowel (a deadly mistake). Kayli went back into surgery, and her abdomen was cut open to let the air out. Once again, Kayli survived! Kayli was brought to the PICU room. When she was able to start eating again, she wasn't tolerating it. We were torn, because Kayli was to be released home to us after the Gtube surgery, and we had planned on taking her with us on her brother, Niko's, Make a Wish trip. We had put his trip off, in hopes of either waiting until Kayli had decided to stay with us (live), or pass away with us around her. We told the boys that if Kayli did not make it (live), then she would be able to join us on the trip anyways! She would be an angel, and could ride on the roller coasters, while planted on our shoulders! If were to come with us physically, she wouldn't be tall enough, but as a spirit, she would be able to go with us! With all the near deaths, I told our boys to pray and ask to stay close to each other spiritually, because our bodies are not as strong as our spirits. In 2009, at one point, all four of our kiddos were deemed to die. Kayli, well...you now know. Niko was diagnosed with Gangliaglioma, a cancerous, inoperable brain tumor located in 2 parts of his brain stem (pons and medulla), and deep in his Cerebellum. He was too young for radiation (at only 2.5 years old), and the removal granted a 100% morbidity rate. The only option was chemo, but we were waiting of the tumor to be at it's most aggressive state, to kill all the cells with chemo. Kayli's middle brother, Jacob, has Autism, ADHD, EOE, ODD, and Sensory Integration disfunction (he doesn't feel pain triggers). In 2009, he had appendicitis, but had no symptoms! By the grace of God, we found ourselves in an ER with God's helper, who found the active appendicitis! Kayli's older brother, Stephen, had 5 spine surgeries in 2009, because at only 14 years old, he broke his back swinging a baseball bat in a game... it was then that we found he has Degenerative Disk Disease. He contracted MRSA (a resistant Staph infection) and was highly allergic to the only 2 IV antibiotics proven to treat MRSA! In 2009, our family had 18 surgeries between the 6 of us (I have MS). 
Back to the story though...
So, Kayli was too sick to come with us on Niko's Make a Wish trip. We had already put his trip off, and at any moment, he could loose the window of time to do his dying wish...go to Disney World. So, devastated, and not knowing if Kayli would survive when we left...we took our other dying son on his Make a Wish trip. Our family was torn. But we stood together. We made frequent calls to the hospital, checking on her regularly. She wasn't doing well, but she was still alive! Our worst fear was that she would die alone. 
When we got back from Niko's MAW trip, we immediately went to see Kayli. She looked HORRIBLE! Prior to going on the trip, we begged the surgeon to get a GI consult, to figure out why Kayli couldn't eat. When we got back, someone (a nurse?) figured out a way past the hospital hierarchy and called in the GI dr. The GI dr ordered an Xray, and found...... the surgeon had placed Kayli's G-tube in her colon instead of her stomach!!! The colon does not absorb like the stomach does, so this meant that Kayli was not only malnourished, but was not getting her seizure or heart meds into her system! Kayli was VERY sick. 
The buzz got around the hospital, and residents spouted off "She's going to have to explain THIS one!" The surgeon finally came to speak with me. I asked her if Kayli's anatomy was malformed, thinking that was why the mistake happened. She said, "no, her anatomy was perfect". So I asked, oh...so did you go in too far, or not far enough? Her reply was, no. The organs are nowhere near each other. I then asked her what happened...how did she misplace Kayli's Gtube? She smirked and replied with, "I don't answer to you, and I don't have to tell you why I did what I did!" I was shocked! I then asked her to fix her mistake. She told me she had the next day off (it was 11pm at night by this time), and she already had plans with her daughters.... ??? WTH?!!! I lost it then. I roared with a Momma Bear voice, "Listen up! You have 2 choices! You either 1. Take my daughter in the operating room RIGHT NOW and help her, or 2. and I prefer this one...go find a cot in the hospital, and lay your sick head on it to get some sleep for 4 hours, then come with your best mood and intentions to fix your mistake! You had better pray that God does not take her tonight, because that will be on YOUR shoulders! She replied with a "oh, yah...that's what I was going to do". I walked away. The following morning, the surgeon opened Kayli again, to separate a fistula that had formed between the colon and stomach, sutured up her colon, sutured up her stomach, sutured her stomach back into place by attaching it to the wall, and then placed the gtube in her stomach. In the months to come, an abdominal sized hernia formed. Kayli was back home with us, and I took her to another surgeon. That surgeon fixed her hernia, did a nissen wrap (Fundo), and found a deadly Meckel's Divirticulum that the original surgeon left inside Kayli. Because of all the sutures and scar tissue, Kayli will be at high risk for bowel obstructions and malrotations the rest of her life. The original surgeon is no longer with the faith based hospital...she now works with the local level 3 hospital that Kayli is not welcome at. 

Kayli's Birthday cards!

Our Miracle girl is 4 years old today!!! 

Kayli's story from the beginning

Claimer: Kayli's story is not to be sold or profited from in any way! 

Kayli's story from the beginning, flashback to late 2008. Hubby and I were in the High Risk OB's office, talking about an ultrasound that showed extra fluid behind our baby's neck. We were told there is a chance our baby has a Trisomy syndrome (13, 18, or 21). The dr suggested that we get an amniocentesis to confirm or deny the possible syndrome diagnosis'. We declined, as it is my faith that guides my decision not terminate a pregnancy (thou shall not kill). I do not force my choices or faith on anyone, but I am steadfast on my decision not to terminate my baby, and I made it very clear to the dr that we would carry our baby to term. We cannot predict the future, nor do we know God's plan for ourselves, so how can we decide our baby's fate? The dr said it was imperative that we know of our baby's condition, because if he/she had a Trisomy syndrome, he/she would need more medical attention at birth than they could handle (she would need to be delivered at a level 3 hospital), and my pregnancy would need more medical attention. After confirming the amnio would guide us to give our baby the help he/she would possibly need, we agreed to it.

Sitting across from the genetic counselor, we got the devastating news. "Your baby has Trisomy 18". After we picked up our jaws, an wiped away the tears, I asked the counselor what that meant. What extra help would our baby need? Where do we go from here? You said our baby would have to be delivered elsewhere, do we change our OB then? HELP!!! Please tell us what we need to do! His reply was a gloomy response...."terminate". More tears flowed, as this was not an option we could live with. This is our baby you are talking about! We remained firm with our decision not to terminate our baby. The counselor went on to tell us that our baby had FUll Trisomy 18, meaning every cell that was tested showed a 3rd chromosome on the 18th pair. Our baby was deemed to die, as the counselor told us there is not a single baby with Full T18 living. If she lives to birth, she will die shortly thereafter. Looking for an ounce of hope, I asked the counselor if he could tell what we were having. My tears flowed as he said "a girl". We have 3 boys, so having a girl brought great joy to me, being the only girl in the family thus far. Joy was in the room, surrounded with doom, as we walked out of the office in tears. We are having a girl...... God blessed us with a baby girl!

We went back to the high risk OB, with the amnio results. He also told us to terminate. He was much harsher, and continuously pressured us to terminate our daughter's life. When we asked him what the new plans were to help her, he said there are no plans...she will die. Devastated with his response, I reminded him that the only reason we did the amnio was to find out if she needed more help than a typically developing baby. He assured us our baby would not live, and if she survived until birth, she would be extremely deformed and missing body and brain parts. He told us he would no longer need to monitor our baby, and no further appts with him were needed....she will die, there is no help nor hope for her. Hubby and I thought differently. (How could someone just give up on our baby?!) I demanded that the high risk OB not only monitor our baby, in the womb, but that he increase his monitoring! If she was to pass away inside me, I wanted to know everything about her that I could while she was still with us! I scheduled our next appt for the following week, to monitor our daughter's developments in the womb.

Every week, we went to the high risk ob's office for an ultrasound, and every week after seeing our baby girl on the screen, the dr would come in the room to "prepare" us for the eminent dreary outcome of our daughter's life.  One day sticks out in my mind.  I had just seen our daughter in her ultrasound, and she was waving.  I always made sure to ask the tech what her new developments were, and what (if any) new concerns there were, anxious to know more about our daughter.  Each site of her brought strengthened hope, which must have threatened the high risk ob's beliefs because as Kayli continued to grow, his attempts to persuade us to terminate also got stronger.  The dr came in, blurting out..."ok, so her hands will be like this (he brought his hands in fist motion, to his chest) and she will never be able to open them...it will be very painful for her.  Knowing this was a ridiculous excuse to terminate our daughter's life, I could not help but challenge his beliefs.  I told him that my daughter just waved to me in her ultrasound!  She is not like the others (sorry, but he told me ALL were the same, and no child with Full T18 lives).  She CAN open her hand!!! Trying to crush my hope, he raised his voice, again and said NO!  She will never be able to open her hands, and you are going to make her live through great pain if you do not terminate!  I was drunk on hope and love, just seeing my daughter doing what the dr said was impossible! I told him I know what I just saw, and looked at the tech to confirm that she saw my miracle girl wave too!  She meekly  and quietly whispered "yes, it looks like she had an open hand".  I asked the tech to pull up the screen, and that the dr look.  He saw Kayli's hand open, and began another speech... "well, she did that once, but she won't be born like that...her hand will close, she will be born with clenched fists, and she will be in pain and never be able to open them."  

The appts were pretty much the same every week.  The dr giving us what we labeled "the Trisomy talk", while Kayli continued to grow inside me.  As Kayli's due date came closer, we began to believe she would live till her birth! Next, we needed to plan her birth.  Since the high risk ob refused to transfer her care to a level 3 hospital, I called some Chicago hospitals to see if we could deliver Kayli there, in hopes of giving her all chances of a life.  Each hospital said they will not "intervene" with a baby's life with Trisomy 18.  She was not to receive oxygen if needed (like her brothers needed), and she would not receive a feeding tube if she could not eat on her own.  With the forth call of rejection and alienation for medical help, I became VERY angry!  We chose life for our daughter, but nobody would help us with her with even the simplest of care!  1. Every dr I went to said they would not help her 2. I do not have the skills to help her myself 3. I do not have time to learn the skills to help her 4. I HAVE TRIED EVERYTHING, AND CANNOT HELP OUR DAUGHTER... I felt trapped, angry, and helpless.  Then a thought came to me...I have not tried EVERYTHING...I can still pray! I remember where I was standing, when I prayed.  I prayed that God guide me, as I was lost and no longer knew what to do.  I asked for forgiveness for the dr's who would not help His child in need.  I asked for peace, so that I would not have to live another second with the anger that was now inside of me.  I immediately felt peace, starting from my feet and moving up my body and through my head.  The peace pulled me up and yet calmed me at the same time.  He granted my prayers, and gave me peace.  The next day, at the regular ob appt, he granted another of my prayers. 

Once the internal exam was over, and the nurse left the room, the OB spoke to me.  He started out saying, we both know everyone is talking about you being irrational and wanting to find treatments to save your baby's life.  We both know the team here does not agree with treating your baby, and is doing everything to stop any "interventions" (life saving measurements).  I play golf with the Neonatologist here, and we speak of your case a lot.  He has agreed to meet with you, and hear you out.  He has not agreed to help your baby, but he has agreed to hear your story.  Meet with him, and tell him your story.  Tell him what you want, and your birth plan with your personal boundaries.  The dr knew Hubby and I set up a birth plan that asked for any and all interventions other than prolonging her life only that she would live in an institutional setting, on machines.  Kayli was to be saved, to live with our family and to be an active part of our family.  We did not simply want a body... if she could not make it with help, we felt it best to let her body go so her spirit would be free. But if she could receive help and live with us, and be a part of our loving family...she was to be helped.  The OB discreetly ave us the Neonatologist's cell number, and we met with him a couple of times.  Kayli and our family won the heart of the dr, and he agreed to give Kayli oxygen and/or a feeding tube at birth if she needed it!  The hospital did not have a cardiac surgical team, but she would get all the help she needed at birth! We planned a repeat C-Section date, and anxiously kept our secret birthing plan from the high risk ob and genetic counselor.  :D 

It's almost time!!! On the way in to the hospital, I was anxious about having Kayli today.  My mind ran with...am I making the right decision to deliver her a week early? Will she die as soon as she comes out?!  Would I have her alive for 1 more week, inside of me if I waited, or would she pass away like they are telling me?  Too late now, I'm being hooked up to the monitors, and the dr's are in order....  Wait...what?  I am contracting?!!! She wants to come out today?!!! Thank you God, for letting me know I am making the right decisions, for your plan!!! Thank you Kayli, for taking that off my shoulders!!! 
11:19 am She's here!!!! She's here!!!! Is she breathing?!!! I don't hear her cry!!! Is she alive?!! Is she ok?!!! What's going on?!!
Hubby is quiet, the room is quiet. I don't hear any crying. The nurse brings her to me wrapped up, as I lay on the table with my arms open, strapped to the table. They release one arm so I can touch her. I nuzzle with her, and talk to her. I don't want her out of my site. Then Hubby gently says, Kelly...she isn't breathing. They need to take her to the special unit...can you let her go so they can help her? LOL Of COURSE!!! Please take her! Help her!! Hubby follows them to the special nursery where they give her oxygen and help her.
The pastor is waiting for her, and after finishing up with me, they wheeled me into the special nursery on the bed and we baptize Kayli with the boys in the room. Kayli was dedicated as a Child of God while in the womb, but now her body has been dedicated too!

Saturday, April 20, 2013

Celebration of Life date to be announced

Thank you Robert Smith, for your donation towards Kayli's Celebration of Life!  It was a surprise to see your donation in her paypal account!  With the donation, you have inspired us to make adjustments, in order to throw Kayli a Celebration of Life for her miraculous 4th birthday!  We will be sure to announce the date and location as soon as we secure the venue! The public will be welcome, but a ticket will be needed, to get into the Celebration of Life (to control attendance totals). 

Kayli will officially be a 4 year old, tomorrow!  She has received an outpouring of love, in the amount of Birthday cards sent to her!  We will be posting frequently, on her facebook page tomorrow, to share the cards, pictures of Kayli as a baby, etc, and to ask some trivia questions!  For pictures of her with each card sent to her, and to join in the fun, please go to her facebook Krusade page, at www.facebook.com/KaylisKrusade

As always,
Thank you for all your love and support! <3   

Thursday, April 18, 2013

What is the prognosis for Trisomy 18?

"What is Kayli's prognosis?"

It is a question asked of me time and time again.  I'm sure the intent of the question (in most cases) is not malicious, but one that is asked with anticipated dread and a nervous tone.  My quick reply is, "Kayli has outlived her prognosis".  That usually is not a sufficient answer to quench the desire to know more about Kayli's iminent demise hanging over her head.  The push for a more definitive answer leads me to respond in educational statements, with hope to connect the inquiring mind with God and Kayli's intent here on Earth with us:

First, I reflect on the definition of Prognosis: A forecast of probable outcome.

My extended response to questions of Kayli's prognosis, is that she will live long enough to strengthen your faith, to share hope with you, to educate you, and to connect you with your spiritual being.  Kayli's prognosis of life next to yours, is determined on your understanding and acceptance of her abilities as well as her challenges.  Kayli's prognosis in life on Earth is not limited to a determined life expectancy because she is unique and nobody has been granted the identical extraordinary life she has been granted.  The prognosis of her body is the same as your bodily prognosis, there is no way to determine what tomorrow holds, only the desire to make the best of the days we have been given.  She may live through the day, or she may live through 100,000 more days. Her body is a wonderfully and fearfully made creation, a one of a kind miracle by God just as yours is.  Kayli's medical prognosis is somewhat dependent on the gifts God has granted the doctors, nurses, and medical professionals crossing her path, and what THEY choose to do with their gifts.  One may say her medical prognosis is dependent on the care that is offered and provided to her.  I guess in short, my answer to your question of Kayli's prognosis , or "forecast of probable outcome" is that she will have a qualitative life of profound inspiration to those who have the honor of connecting with her. Which brings me back to my short answer....Kayli has outlived her prognosis.  She has outlived the understated forecast of probable outcome set by any medical professional....   I pray that my prognosis is as bright and as inspiring as hers is! Thank you for asking! :D 

Monday, April 15, 2013

Kayli's spinal curvatures are now considered life threatening

Kayli had her follow up surgical spine appt. tonight.  We had a great visit, with a lot of pondering, more testing, and then more pondering. We decided to start Kayli off with a traction device for a week or 2, then surgery. We have not completely decided on the surgery, but we are about 80% sure we know the technique we will be doing...and it's not the Shilla technique, as we originally thought it would be. Kayli's spine curvatures have greatly progressed (for the worse) in the last 4 weeks. The surgeon said it is life threatening at this point, and we need to move quickly. She is in need of surgery in the weeks to come.  I just wanted to update everyone asap.  I hope to blog more about our discussions tomorrow.   

Good night, and God Bless! 

Saturday, April 13, 2013

Kayli's birthday cards and gifts

We have asked for everyone to send her a card (homemade is preferable), and plan on posting Kayil with each card given to her, on her birthday.  Be sure to check back on her Birthday, Sunday April 21st (next Sunday) to see the beautiful cards sent to Kayli for her 4th Birthday!!  Kayli has been very Blessed with your gracious responses!  You have shown her how to Love Graciously and Give Graciously!!! Thank you!!!  

For those wanting to send Kayli a birthday gift, the following is a list of wants.  Please know that Kayli does not NEED anything, so this is in no way a desperate plea for help!  

 The following handmade items are appreciated: 

travel size pillow cases 
hospital gowns with fun fabric
friendship bracelet
drool rags (cotton diaper sized)
hand drawn photo of Kayli with Jesus

Other items Kayli would like/could use:

1. Girl's twin size fitted sheets (for her new hospital bed)
2. $4.50 a pair AFO socks, size 5-61/2 in white, purple, and pink http://www.afosocks.com/SearchResults.asp?Cat=1814
3. Dresses size 3t or 4 (no high necks)
6.Non-toxic  finger paints (found at a local department or craft store)
10. $39 orchestra and lights, touch sensitive cube http://www.specialneedstoys.com/usa/communication/70-musical-cuboid.html
12. $15 travel size memory foam pillows 
13. $12 reusable swim diaper (found at department stores)
14. Itunes gift card 
15. $5 Sunglasses
16. outdoor photography session/shoot

All birthday cards and/or presents can be sent to:
Kayli Whistler
Po Box 2
Cary, IL 60013

Thank you for thinking of our Miracle girl, on her 4th Birthday!!! <3 

Kayli, with Trisomy 18, makes history by swimming with a trach!!!

Here she goes again, breaking the rules of the worthless, "incompatible with life" label placed on her (simply because she has a Trisomy 18 diagnosis)!  Kayli is on a Krusade, to show others that she enjoys the simple things in life too, even if it means making her own pathway, and helping others along the way! 

Kayli has been in the ocean, in pools, and loves her bath time.  She loves just about any body of water, so it makes sense that she would participate in aquatic therapy at her school.  Although swimming is not new to Kayli, no trached student has ever been allowed to participate in the school's aquatic programs...until Kayli, that is!  

Friday, April 12th, Kayli made history!  She was the first trached student to participate in aquatic therapy, in her school's pool!  

For more information on considering a trached child in a body of water, please see my previous blog, Swimming with a trach. 

Arrived at the pool, excited to go in! 

Testing the waters, holding on and looking at her therapist

Looking at therapist, who is telling her to hold the fish

Kayli holds the fish!! 

Action shot! 

Look at ME, Mom!! 

Looking at therapist

No, it can't be time to get out already! 
One tired, little girl!