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 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, 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, 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 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. 

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