Living in Kairos: God’s Time
March 1994: After Lancelot’s first Heart catheterization,  Dr. Marvin told me that Lancelot’s vascular disease was so sever, that no one
could help him.
That was over 17 years ago!

DEATH MAY BE A BREATH AWAY, BUT GOD HAS BLESSED US WITH THIS MOMENT TO LIVE!
Lancelot was born September 4, 1992                            .
I was told I had a Healthy baby boy.
Three doctors checked him out in the hospital.
Not one of those 3 doctors mentioned a heart murmur.
But this was all of God’s planning; his timing is always perfect.

Lancelot with his Granny Douglas

 

Lancelot was 3 weeks and 1 day old, when I said to Mama,
“All the books say if a baby is going to have the colic that it will begin
before they are 3 weeks old, so he does not have the colic.”
That night the screaming began… note I said, that the books said it would start before 3 weeks.
For the next 5 months, I took Lancelot to the pediatrician over and over, only to be told,” There is nothing wrong with his heart, his lungs, his liver, all his major organs are fine. He just as the colic.”
One good thing about his first Pediatrician, at Lancelot’s 3 month check up, he turned to me and ask,” Did he just say Mama?”. I said,” Yes you should have heard him last night!”

 

Lancelot’s screaming was a 24/7 occurrence.
When he was almost 6 months old, he slept 2 hours straight.
That was the longest he had ever slept. When he woke up, he coughed two little coughs.
I told Mama, that I better take him to the doctor he must be sick.
His regular pediatrician was not in the office. I took him to see the Doctor on call.
Dr. Kruppa, took one look at Lancelot, and said all this is his first visit to the doctor.
I told her,” No malm he is almost 6 months old.” She turned, and began listening to Lancelot’s chest.
She turned back to me and said,” This baby has a loud Heart Murmur!”
He also had an ear infection, throat infection, upper respiratory infection, and bronchitis; this was just the beginning of countless infections. She made him an appointment with a cardiologist, set him up on meds, and put him on baby food. Needless to say Lancelot had a new pediatrician.

The cardiologist in Savannh saw Lancelot between 4 and 6 times.
He did echoes and all the basic test. He noted Lancelot’s small size, and that his blood pressure was high.
He said that as long as he was eating at least 2 ounces every 2 hours, he was o.k.  I said he ate at least 8 ounces every two hours, and I had begun feeding him baby food too. He said, “That’s good”. He said his blood pressure was high because he did not like doctors.
He diagnosed Lancelot with mild pulmonary stenosis nothing to worry about…

 

Lancelot went to the Heath Department to get his immunizations.
On his 7th or 8th month visit, when the nurse pricked his finger, he bled all over both of us.
She told me to make sure I told the Doctor, next time went for a visit.
I did not think that much of it. Lancelot had double his weight and was talking; he was doing great except his infections, and the screaming. So the next time we were at Dr. Kruppa’s office, I almost forgot to tell her.
When I did, she said probably is nothing, but I will set him up an appointment at Nemors Children’s Clinic with a Hematologist.

At 8 months Dr. Bridgett Freeman came into Lancelot’s life.
When she walked into the room, I thought she was another nurse.
She handed me a scratch piece of paper with some numbers on it.
I just looked at it, and looked back at her. She told me this was his blood pressure, and it was why too high.
I said, “Oh he has mild pulmonary stenosis, nothing to worry about!” She said there is more going on that to cause such high blood pressure.

After we left Dr. Freeman’s office we went to the 9th floor for Labs. First that stuck him in one arm, then the other, then they went back to his other wrist, then back to the other wrist and then they tried both feet. When they started with his arms again, I started blacking out! I was the kind of person that walked into a Dr.’s office and got sick. On the way home, as Lancelot laid passed out (sleeping) I had a talk with God. If Lancelot was going to have to get this kind of blood work and testing regularly; I needed his help to be there for my son. I could not be sick or scared when my baby needed me. As always God is good, and he gave me the strength I needed. Over the next year throughout it all I never got light-headed again, and I never cried. I never ask why… if it could happen to other people, why would it not happen to my son and me.
With in a few weeks we had Lancelot’s second diagnosis, Von Willebrand II B.
Von Willebrands is a bleeding disease that has 4 types: I, II A, II B, and III.
Lancelot had to be treated like a hemophiliac patient, because he could have a major bleed at any time. He had a helmet, elbow, knee pads, and his living environment had to be safe. No football for this Georgia boy!  Lancelot was acquired, meaning no family member had this disease.

From 8 months to 14 1/2 months, we kept the road from Blackshear to Jacksonville hot. Lancelot was the last outpatient at 5 North, Baptist medical, and the first outpatient at Wolfson Children’s Hospital, Baptist medical.
Lancelot screamed through it all! He also was either constipated or had diarrhea. The first time he was an out-patient at 5 North, the nurse called to explain what to expect the next day. I attempted to return the favor by explaining Lancelot’s screaming. She said, “Honey I have been a pediatric nurse for over 15 years. I have seen it all.” The next day it took over 3 hours to get the IV started, and 3 doses of cloral hydrate to get him a sleep. And of course he wake up during the MRI. At the end of the day, the nurse said to me, I am so sorry. Her hands were shaking, she continued, “I had no ideal, I have never been around a child like Lancelot.” No one had, but Jesus just carried me through, and I walked around with love carrying my baby. (Years later Lancelot was having another test, and two nurses were trying to start his IV, finally Lancelot had enough and bit one of them. She said,” Lets get another nurse”. When the other nurse left to get the new nurse, the other one told me, that they call her one stick. Guess who walked in…, the nurse from Lancelot’s first outpatient test. She said after working with Lancelot the first time she decided she needed to practice, so that no other baby would have to go through that again!) God makes all things work to his good!

November 1993, it was just another outpatient test at Wolfson. By this time Lancelot had seen so many Dr.’s and been through so many tests, that this was a normal day for us. The radiologists walked into the waiting and room, handing out a sticker to each of the children, when he handed me Lancelot’s sticker, he handed me about 20 stickers. I knew something was wrong. Lancelot was a baby, so why would he give me so many stickers. He told me to take Lancelot over to Dr. Toylamat’s office. I said, they’ll call me with the results; it is late and they will be closing soon. He said, “No, you have to go now!” At Dr. Toylamat’s office, he told that Lancelot had a tumor on his adrenal gland. He had Dr. Freeman to come in to explain our next step. This of course would be another set of test. It was two weeks, and after I had driven Mrs. Kathy (Dr. Freeman’s Nurse) crazy with phone calls, before we were at Wolfson for Lancelot’s testing. Lancelot of course was his usual screaming self, and woke up in the MRI.  During the bone scan, I noticed what I hoped was the board on Lancelot’s arm. I ask the technician, and she told me that Lancelot had his arm over his head, and that was the tumor.
That night at the hotel, Lancelot and Mama slept, and I watched T.V. There was a story about a little boy with cancer. He had been in the hospital 6 months, and he had a beautiful smile on his face. I started crying and prayed Lord please take my son. He hates hospitals; he would not be able to survive a long stay in one. The next morning, they could not find Lancelot’s tumor on any of the test. He had another test to make sure, but the tumor was gone!
God is so GOOD!

 

In December 1993 Lancelot’s blood pressure was 250/200, I told Dr. Freeman to go ahead and set Lancelot up for an appointment with University of Florida Pediatric Cardiology. In January 1994, Dr. Bain stood by Lancelot’s bed, as a sedated echo on him. Of course it took a lot of medicine to get Lancelot out, and he kept moving and trying to wake up. Dr. Bain said Lancelot had pulmonary stenosis, but it was not mild and he thought he had something on the other side; he had a grade 4 heart murmur. He referred Lancelot to Dr. Marvin for a heart catheterization.

I checked Lancelot into University hospital in March for a three-day stay. That night Dr. Bill Marvin came into the room to check Lancelot. Of course I was reading him a book (Probably the Foot Book), Lancelot came into this world a bookworm. He asks me and Mama to come with him, and the nurses would look after Lancelot. As soon as the nurses came near my angel boy, he started screaming he said, not to worry they were professionals, and Lancelot would be OK. Famous last words! We walked down the hall into a room so that Dr. Marvin could explain the procedure. Even with the door closed you could hear Lancelot screaming, finally Dr. Marvin said just a minute, and he came back into the room. Lancelot had already stopped crying. Dr. Marvin said he had 5 children, and did not hand Lancelot back to me! Dr. Marvin said, the test should only last an hour and a half, and he did not expect to find much, because Lancelot was such a handsome, healthy boy.

The next morning Lancelot went into the Cath Lab, and I started to watch the clock.
An hour and a half went by, and then another hour, the wait was endless. Then they brought Lancelot in with Dr. Marvin close behind. He was not making eye contact with me. I knew something was wrong. I started asking  does he have coarctation of the aorta, because some children that have this have acquired bleeding disorders.
He said we had some complications, and I want to talk to a friend of mine about our options, then we can talk or I can tell you my findings now. Before I could say anything Mama said ” we will wait.” That’s all Dr. Marvin needed to hear. He said o.k. and walked out the door. I was like, why did you say that? I am his mother, and I have waited long enough… I want to know what is wrong with my son now! She said, well go tell him. I ran out the door, and found Dr. Marvin. He kindly came back into the room, and began telling us about the procedure and his findings…Our Life as I had dreamed it was truly over!

At the beginning it did not go well, Dr. Marvin could not get the cath to go in, and then once the cath was in Lancelot’s BP skyrocketed and the pressures in his heart was so forceful , his heart was about to exploded.
Dr. Marvin had to put a whole in Lancelot’s heart to relieve the pressure. My baby now had a whole in his heart.
Then came the bad news, Lancelot had sever peripheral pulmonary stenosis, his whole aorta had stenosis, and Dr. Marvin said he thought that all Lancelot’s arteries and blood vessels with stenosis. He said Lancelot could die at any moment, and that there was nothing anyone could do for him, but he was going to call Dr. Locke at Boston’s Children’s Hospital and see if he could buy Lancelot some time. I ask do I need to learn CPR (My bother and sister-in-law had to learn this when my niece, Sharee, was diagnose with sever heart disease. Sharee died August 10, 2009. See an article on Sharee in my Quest)
Dr. Marvin said, “No, you will be watching him and turn around, and he will be dead, no one or nothing could save him. His heart is enlarging, and it will burst.” But if Dr. Locke can help get Lancelot more time, changes are taking place everyday in medicine, and maybe one day someone will come up with something to help Lancelot.

Later that day, Dr. Freeman came across town to discuss Dr. Marvin’s findings and to make sure Lancelot was receiving his factor meds and did not have a bleed She had become more like family than a doctor. She assured me if there was anything anyone could do Dr. Marvin would find it.  After she left Dr, Marvin came back and took me to his office at the cath lab. (Mama stayed with Lancelot who was jumping in his bed, Dr. Marvin had just shaken his head. As anyone knows you are not supposed to move around much for 3 days when you have a Heart catheterization.  But Lancelot jumped all the time, he had such big muscles in his booty and legs, which I use to fear breaking his legs when I changed his diapers.) Dr. Marvin showed me Lancelot’s pictures taken in the cath as he explained Lancelot’s condition. He said, that Dr. Locke thought he could stretch Lancelot’s Pulmonary arteries and blood vessels. Lancelot would have to get this done every 3 to 6 months to live, and he needed to have his Aorta fixed before he was 5 years old.

 

Boston! Thanks to Dr. Freeman and Ms. Kathy, Lancelot, Mama, and I headed to Boston, Mass. on Memorial Day weekend 1994. During the flight, I read the Foot Book over and over again. I took him into the small bathroom and laid him in my lap to change his diaper, and as usual he screamed bloody murder the whole time. I opened the door, and every other passengers head turned, and looked at me like I was the carrying the poster child for child abuse and I was the abuser! I just carried my smiling child to my seat, and began reading the Foot book to him again. I was so glad to get to Boston. They had set it up for us to stay in a family home. The next day Lancelot went into Boston’s Children’s Hospital. There was the usual variety of test Followed by every Specialist in the hospital stopping by Lancelot’s room, to use him as a teaching aid for students. . By the next morning Lancelot was in Hospital Shut-down; he had a blank look, and he was not reacting to anything.( No screaming or biting) When he went down to have his Lung Scan, he laid perfectly still. I was rocking him when we got back to the room, and begging him to come back and fight, when his nurse walked into the room, and Lancelot let out a scream like only he could do… Music to his Mama’s ears!

In a few moments we headed down to the Cath Lab. The nurse turned to me and, said this is as far as you can go. My heart broke, knowing that this could be the last time I saw my baby alive. It took all my strength to walk away from Lancelot. It was not long before I heard that Screaming that I knew so well coming from the CICU! I did not stop at GO; I ran into the unit to see my baby.

 

August 1994, about 2 weeks before Lancelot’s 2nd Birthday, we were back at Boston’s Children’s Hospital.
Lancelot was having his second set of dilatations on his Pulmonary arteries and blood vessels, when I felt my heart being pulled from my body. I knew Lancelot was dying. I started pleading with God to let me have at least six months or a year more with my baby. He had just started having some good days. I screamed please let me show him some of the beauty and good things in this world before you take him! (I was in a large group of people who did not hear me or see any change in my behavior.) I hear a still quiet voice say it will be hard. I exclaimed, “I do not care; I just want my baby”! I ran into the hospital, up the stairs, onto the elevator, and meeting Dr. Locke in the hall way. he said, ” I know you think I do not care about these children, but I do. (Long story!) We lost him.  It took us between 6 and 8 minutes, but we got him back!”

This time when I went into CICU to see my Gorgeous, Little Superman, he was not jumping up and down…he was laying flat out on a bed with tourniquets on three of his limbs, and he was on life support. I watched as tears were seeping out of his eyes that were swollen shut. I stood by his bed and read the footbook.  I had been standing there a while, when I started blacking out. Lancelot’s nurse, suggested I leave, and get a glass of wine with some food. She promised she would not leave his side so I finally agreed.

Lancelot had went into sudden pulmonary edema. His little heart was working hard to rid his body of all those fluids. When we got to our room, I called to check on Lancelot, and I heard a familliar screaming. I hung up the phone, and went back to CICU. I remember reading, singinging kinda, but a lot of it is a blur all that matters is he came home with me.

That was over 17 years ago! In October 1994, the results from Lancelot’s Elastin test came back.
Lancelot’s geneticist called me to let me know that Lancelot had William’s Syndrome. I hung up the phone, and fell to my knees, crying I am so sorry, so sorry Lancelot; I selfishly begged for your life, but what kind of life are you going to have? (William’s Syndrome, symptom’s include retardation and many more) I learned also from Dr. Marvin that nothing other medically that could be done for Lancelot.

Lancelot had no Hope in man. God used my son to teach me how each life is a Miracle, that God loves us more than we can imagine, and if we give our Quest of Heart to God, he will give us a life beyond our Hopes.