Make your own free website on
Jordan's Story


About Jordan | Contact Jordan | Jordan's Pictures | Jordan's 1st Birthday | Jordan in the PICU | The Ronald Mcdonald House | Jordan's Story

Our Chapel Hill Experience.

At three weeks of age Jordan started his fight with a Hemangioma with the Kasabach-merritt  Syndrome.  A hemangioma is a vascular benign tumor and is fairly common.  You may know it as a "strawberry birth mark".  The Kasabach-merritt Syndrome is less common.  This is a rare condition in which the platlets(a blood clotting factor) are consumed in the hemangioma. This can be very deadly, as sometimes it is hard to control the platlets and the child dies. 
We actually knew there was something wrong with Jordan when he was born.  He had a knot on his neck and shoulder that looked a little bruised.  They said it was "bruising due to a quick delivery", that's what you'll find in my medical records.  Another clue, looking back, were his bilirubin levels.  We took him to the doctor a week after he was born and they were high, but started going down the next day. I would have never thought a little bumb could cause so many problems. Well, they couldn't tell us anything and after about 18 hours, we were on our way to Chapel Hill. Exactly 24 hours after arriving at New Hanover we were arriving at UNC. Jordan had already gotten there via ambulance. They wouldn't allow anyone to ride with him so we had to drive up and had gone home and gotten things together.
Watching them load that little baby up on that big ambulance was the hardest thing I had to do. The one good thing about it was that Jordan was settled and asleep by the time we got to UNC and so I was comfortable in leaving him there and getting some much needed sleep at a nearby hotel.
The area never really seemed to get better and know it was getting larger and turning red. We took him to New Hanover because we didn't know what was going on and the spot being on his neck was very close to his airway.

After a short stay, we get to go home, again.  Back to daily trips to the doctor for  a CBC and then to New Hanover for platlets.  By the end of the week, the platlets weren't holding and we were back at New Hanover twice in one day.  This was Friday September 28th, and we stayed over night.  The next day, the platlet transfusions still weren't holding and we were sent to Chapel Hill.  We actually make it before dark!  Its Saturday the 29th, my birthday.  The worst birthday ever! Jordan is admitted into the PICU and we head to the hotel for some sleep.  At this time it is hard to get into the Ronald Mcdonald house, because they are adding rooms and only about ten are available due to construction.  I finally do get a room which is good, because Billy(Jordan's dad) can go home and work and I can take the shuttle back and forth.  They finally work it out to put Jordan on the floor with his platlet drip since that was the only thing really keeping him in the PICU.  They administer his second dose of Cytoxan, a chemo, and the next day we get a room.  When Jordan is on the floor, then I just stay with him sleeping in a sleeper/chair.  This stay on the floor lasted about a week.  Jordan's white cell count dropped due to the chemo and left him susceptible to infection.  Jordan of course gets an infection in his line.
It was a Thursday night and Jordan was burning up with fever and not feeling well.  A little boy just down the hall has died and the atmosphere is very depressing. I hold little jordan for about 5 hours.  It was about 2 am when the nurse came in to check on him and do whatever, I had almost 2 hours of sleep by now. That's when we noticed Jordan had turned a purplish color and  I knew this was the capilaries and what you are supposed to look for when the platlett count gets really low. I though for sure this was it and Jordan would bleed to death. He was on a platlett drip, what more could they do?

It was a long day at the hospital the next day and nothing we were told was very good. They still didn't know what exactly was going on, just an idea and were doing lots of tests. His platlet count was low and he was given a  transfussion. They explained that the plateletts were the blood clotting factors and were very importing in keeping you from bleeding, the transfussion worked much the same as a red blood transfussion. Jordan became a pincussion and by the second day I couldn't stand it anymore. I was very good about this realizing that they were doing what they had to do, but poor Jordan was becoming hoarse from all the crying. They sent us home three days later with plans to follow up with our doctor at home to keep an eye on things. 
When we did get home we had weekly trips to the doctor for a complete blood count(CBC) to check his platlet levels.  If his platlets were low we were sent to Chapel Hill for a transfusion, then go home. On one of these trips Jordans platlet levels dropped so low, the IV he had would not work and they couldn't run another one.  They put him on the ventilator and gave him platlets through a big needle in his shin bone directly into the bone marrow. They were also able to give him a femural line.  This is where they place a more permanent IV line in the femural artery.  He can take this home with him, and it cuts down on the need for all those needles being stuck in him.  We were greatfull for this since he was already so bruised from all the needles.  After two weeks and daily transfusions, Jordans platlets were high enough that he could go home. This coming and going last quite a while. One week home, one week in Chapel Hill, one week home, back to Chapel hill for two.
Arrangements were made for Jordan to get the transfusions at New Hanover.  I was very thankful to Dr. Horger for making this decision because that was the only thing keeping us in Chapel Hill. Of course we didn't stay long, his line got infected. They replaced the line with another in the artery in his neck.  This is called a Broviac.  The problem now is that he needed the IV antibiotics as well.  It was decided that he can finish the antibiotics at New Hanover, once again, thanks to Dr. Horger.  So we go home and stay one night.  The next morning we go to New Hanover to finish out our IV antibiotics, about five more days.
We stayed all weekend and then on Monday September 10th, Jordan started having trouble breathing. They wanted us to go back up to Chapel Hill because they weren't sure at the time it wasn't RSV and not the hemangioma.  They wanted to send him in the helicopter but since the weather was a little bad the fixed wing plane was called in.  This was great, it's the only transportation that a parent is allowed to go along.  So off we go to the airport by ambulance, who actually let me ride as well. I could only ride in the front, but that was plenty for me, a lot better than watching your little baby being loaded up in one of those  big things and taken away by strangers.  I've never been on an airplane before and was slightly nervous.  I remember looking at the plane and thinking how small it was, but tried not to concentrate on that.  I met the pilots(2 pilots, that means there are 2 engines right?) and we all climbed on board. It's like the getting a horse on a trailer with a carrot.  Jordan was the carrot.  It wasn't bad, it was at night of course and I couldn't see anything but lights.  I lived and it made that long trip to Chapel Hill much shorter.  So here we are in Chapel Hill at midnight.  I have no car, no money, just my permanently packed book bag with a few clothes and other necessities..  But at least I have friends here now.  Things with Jordan were good, he didn't have RSV and things got under control. It was the line they had given him a week ago and once they replaced it he was fine. 

Back to PICU he goes. Now instead of home and Chapel Hill, it's back and forth from the floor to the PICU.  It was an infection, Jordan is now in septic shock and the bleeding is a result of that called DIC.  It is Friday October the 25th, and a doctor comes to tell us he may not make it.  Mom is here and Billy is on the way and the pastor was called and came up also.  Jordan was back on the ventillator and pumped full of fluids.  He looked like a baby sumo wrestler, and hardly recognizable.  At one time there were 8 pumps giving him something.  It was a very long weekend as Jordan lay there clinging for life in critical but stable condition. I have never prayed so much in my life. I would fall asleep praying and wake up praying. Nothing changed the whole weekend but miraculously, Jordan pulls through. He was placed on a study called protein C and this seemed to speed things up a bit especially the bleeding into his skin which healed up quikly everywhere but his legs.  They blistered up looking a lot like third degree burns and he has scarring left on one leg and lost his middle toe.  A small price to pay for having him with us today.   
Jordan made it out of the PICU for Thanksgiving and Billy, Hunter, Mom, Dad and my sister come up for a free dinner from a local restraunt. Jordan recieved three very low dose radiation treatments that week to hopefully shrink the hemangioma.  Jordan is back in the PICU by Monday, his hemangioma has grown closing off his airway and they put him back on the ventilator.  It was believed that the radiation treatments they had given him the week before caused the swelling.  After serious discussion about risky surgeries, Dr. Blatt speaks with a doctor at the Arkansas Children's Hospital, Dr. Waner.  He says the surgery is too risky and complicated and to try the chemo Vencristine.  After administrating the chemo to Jordan he was able to go off the platlet drip in 5 days.  Jordan had been on this platlet drip for the whole three months he was there. We had to stay for Christmas, but Jordan was continuing to do better without as many transfusions and we hoped to go home that week.  Things continued to improve and Jordan was able to go home 3 days after Christmas on minimal drugs and a feeding tube. We had several trips back to Chapel Hill as an outpatient for chemo treatments and two transfusions, the last being March 20th. It was nice staying at the Ronald Mcdonald House with Jordan this time.  Everyone was thrilled with Jordans progress and the Ronald Mcdonald House took pictures to place in their newsletter.  They said they got the most comments from Jordan's story. As you can see from the pictures Jordan  is doing great.  Thanks to the many prayers and dedicated doctors and nurses.

Enter supporting content here