Welcome to tokoni

It was July 19th, 2007 and I was scared out of my mind.  I was 39 weeks pregnant with my 4th child and I knew there was something wrong.  Although, I thought the problem lay with me.  I had some health issues and I was concerned about delivering another baby c-section.  I was all ready for surgery, all ready to see my newest addition.  We were told that he would be small (probably about 6 pounds) but other than that they felt he would be healthy.  The doctors were VERY wrong. 

My son was born fairly quickly and when I heard his cries it brought tears to my eyes.  They did the usual routine of taking him to the end of the room to their assessments, but when they did not bring him up to me after a few minutes and he stopped crying, I started to become concerned.  My doctor could see the look on my face and motioned for the nurse to come talk to me.  She walked beside my husband, who was holding our tiny baby, and stated they were having a very hard time keeping his oxygen levels above 80.  That was not good!  She wanted to take him to the nursery so they could get a better look at him.  I did not think another thing of it because my oldest son was born with a lung infection and his oxygen levels were all over, so I was just thinking another infection.  I was wheeled into the post-op room to wait out my hour and after 30 minutes of no updates or no baby, I started crying.  I knew something was very wrong.  It was not until I was wheeled back into my room that my children's pediatrician came in to talk to me.  My son was born with a condition called Hypoplastic Left Heart Syndrome.  He was missing the left portions of his heart and he was very sick.  She informed me that LifeFlight was on the way to come and get him and that I could not see him until they wheeled him past my room on the way out.  I was devastated.  This was not happening!  My baby was supposed to be laying in my arms and nursing, not being intubated and on his way to another hospital.  Not being born with HALF A HEART! This was not happening.  The life flight crew had a hard time stabilizing him and was afraid he would go into cardiac arrest in transit.  It took almost 3 hours to get him stable enough to transport. 

Kyler was transported to the local Children's Hospital and Kyler's dad was not far behind.  I was not able to leave the hospital until the next day, so everything was done via telephone.  When they got there the doctors went over the condition with my husband as well as the options we had.  The first one was to take our son home and allow him to pass away.  WHAT?  Are you joking?  You cannot seriously think that I could take my baby home and just let him DIE!  The other option was to start a series of open heart surgeries and hope for the best.  It was not a guarantee at life, but it was a shot.  We opted for the surgeries.

Kyler was 4 days old when he underwent his first, of several, open heart surgeries.  He did fairly well, but was having a very hard time keeping his oxygen saturation levels where they needed to be.  It was a very scary time.  After open heart surgery, when they are that young, there is not enough space in the chest cavity that will allow for the swelling, so the doctors leave the chest open and a little "vest" is placed over the wound to keep out germs.  At 7 days old they attempted to close his chest up, but had to open his chest again after his vitals started to plummet.  There was a small piece of tissue inside Kyler's heart that was constricting blood flow and if they did not go in to cut it out, they would not be able to close his chest, and it would eventually kill him.  So at 8 days he underwent open heart surgery #2. 

After his second open heart he started doing better.  They were taking out a lot of his major lines and weaning him off a lot of his meds.  However, when they pulled his pacer wires out of his heart blood clots were left behind.  I can still remember sitting next to his bed and talking to him.  He got this "blank" stare on his face and then his hand started twitching.  I thought maybe he was having a muscle spasm, but when I alerted the nurse she stated he was having seizures.  I was so upset.  Kyler started to deteriorate very quickly and it was found that he had a large blood clot in his heart.  Part of that blood clot had broken off and cause Kyler to stroke in 2 different areas of the brain.  The doctors put him on blood thinner medication, however with that also came the risk of more bleeding in the area of the strokes.  We took the chance.  After 2 days of no change in the size of the clot I asked the doctors to go in and take it out.  At first they were hesitant, but the next day they came to me and agreed.  They said, after much discussion, they thought that, too, was the best possible plan.  The day of surgery came, Kyler was very sick.  The doctor was very sure he could go in and get the clot out, however, the anesthesiologist felt our son would not make it out of surgery.  While walking down the corridor to the operating room we told our son Good Bye and told him that if GOD needed him to come home or if he felt he could not hold on anymore, we understood and we loved him very much.

We took our place in the waiting room that we frequented during all of Kyler's procedures.  The nurse was sad to see us again.  We were sad to be there again, and scared for our son.  However, we knew he was in GOD's hands and there was no better place for him to be.  Several hours went by and the wonderful nurse ensured us every hour by calling us and giving up updates.  We finally saw the surgeon walk into the waiting room and usher us over to the private discussion room.  When he did that I was scared, but he said he just did not want to talk over the crowd in the waiting room.  He assured us that Kyler pulled through, but the next few days would be full of ups and downs.  Hopefully more ups than downs.  Kyler started getting better!

After Kyler's strokes he started experiencing severe reflux.  So bad they felt that if we did not do something to try and prevent it, he could die from it.  After everything we had already gone through I sat down and put my face in my hands and just asked, WHAT NEXT?  Our nurse came and sat next to me, she explained the procedure and what it would do to help him.  After speaking with her, I was okay with it.  We scheduled Kyler for a Nissen (banding of the stomach) and feeding tube placement (feeding tube placed through the stomach wall directly into the stomach). The day after surgery Kyler lost a stitch and his intestines started to come out through the incision.  Thank GOD his wonderful nurse caught it quickly because it could have led to serious infection.  He was rushed back into surgery to fix his incision and put his intestines back inside.

Kyler started doing a bit better and there was talk about him coming home!  He was almost 3 months old.

Kyler came home on Oct 3rd, 2007.  He was not able to eat anything by mouth and took a continous amount of food through a feeding pump into his G-tube (in his stomach).  He took meds several times a day and was delayed developmentally. If we were not at his pediatricians office, we were at appointments at the children's hospital.  He underwent his 4th open heart surgery and 2nd stage of his heart "rewiring" in April, 2008.  We have managed to stay out of the hospital for almost a year! 

Kyler is still not able to eat anything by mouth.  He is crawling now and will stand and pull himself up to things.  He will NOT stand unassisted, but that, too, will come with time.  He was on continous oxygen until about a month ago, and now he is continuous at night, but only needs it every now and again during the day.  Tomorrow we are going for a sedated echo of his heart as well as a special test on his ears.  They are concerned as to why he is not talking yet.  We pray his heart function is still as good as it can get so the thought of a heart transplant is still something we will think about as a FUTURE thing.

I thank GOD everyday for my kids.  Whether they fight and drive me up the wall at times, I am SO thankful that I have them here with me.  My youngest son may not be the average 2 year old (or soon to be 2), but he is here and making progress!  Some things we were told he may not ever do!  

GOD BLESS YOU ALL!  With your own trials that you are all going through.  Thank you for reading our story!  We wish you the best in all your worldly trials!