I wrote the following in 2010. I want to put it here so that I have it always. It has some typos but it is still part of our history.
Jake's story
By Marcie Green Reynolds on Tuesday, November 16, 2010 at 9:33am
Jacob’s birth was pretty normal, they put him on my chest (I’d begged them to let me hold him
just in case they had to take him away, my older child had been born not breathing and they took
her away and my husband finally remembered to come back and tell me she was okay a few
hours later) and then they took him to look him over. I had Group B Strep with both of the older
kids and Jake ended up having a low body temp. A new student was left to clean me up and pull
out my epidural. He pulled without having me bend forward and it hurt! He went to find out why
it wouldn’t come out and came back and did it correctly. Then he freaked when he realized I’d
lost a pail full of blood. I felt a bit weak but was able to walk to the restroom and back. For 45
minutes I waited and then they brought Jake back to me. The next morning we had him
circumcised and it wouldn’t stop bleeding. They tried epinephrine and a chemical cauterization
and sent us home that afternoon. His body temperature kept dropping even though I was
kangarooing him, my body wasn’t creating enough heat. My sister lived in the same complex
and came to hold him; she was so warm and toasty that his temp went back up to normal. After
several bloody diapers we too him back to the ER. They did a hematacrit and another
epinephrine wrap which he soiled by the time we got home. In the morning we took him to the
Pediatrician who tried chemical cauterization again and sent us home. The next 24 hours was
horrible, he had so many bloody diapers and we took him back to the pediatrician who said we
should go to Children’s Hospital immediately, and warned us that we may not make it in time.
We got there and they asked to take blood to test him for something, I didn’t want to let them
take any more blood because I thought it would kill him. They drew the blood and then gave him
a transfusion. After some time they came in and told us he had hemophilia. I assumed it was
something that they could treat and we would go home and live a normal life, they informed me
that wasn’t the case. I asked if we needed to pad the whole house, they explained he could be a
normal boy with medication but we should avoid some sports. He spent roughly 36 hours at
Children’s and was able to go home on Christmas Eve with an IV line in his foot. When I tried to
give him factor on Christmas morning it was clogged. We took him back to the ER and they put
a line in his head. They were so upset when they realized what he had because they knew another
family that came in for treatments but it had never occurred to them, and we almost lost him.
From that point on he only went to Children’s Hospital. At 10 months old he had had 3 CT scans
and been treated 4 times. We probably didn’t need to treat any of those times but we were
freaked over every little thing and they wanted us to be kept at ease. After the last time he had 10
pokes by 6 different nurses they decided he needed a port. We got the port, I learned how to
infuse when the lady came to remove the line a week later and I’ve been doing it every since. He
got his first bleed at 15 month in his right ankle from falling on his medical alert bracelet and we
started prophy. We put him in a daycare and showed them how to put his diaper on without
pressing on his hip, using their fingers inside the diaper to press the Velcro or tape together. The
younger teacher kept doing it wrong and then saw a bruise develop and said there was no reason
for a child to have a bruise in that area, she told her boss to call CPS, her boss showed her
Laurie’s book that we had given her and she still wanted to call CPS so they fired her and let us
know to expect a call from CPS. It never came. Throughout the years we have had other
diagnosises, they thought he had Aspergers and after a few years we found out it wasn’t
Aspergers but he is learning disabled. He has several sensory processing issues. The one that
scares teachers is his need to throw himself down on the ground to feel pressure. They started
refusing to let him go out to recess. We made them let him go out and explained we treated him
every other day and he was normal. They ended up having an aide follow him around. He
repeated 1st grade and by the end of 2nd grade we were getting nowhere. His teacher informed
me that he did well one on one but she would lose him when she went back to the class. I’d been
having bleeding issues of my own and he’d missed several days of school so they wanted to
report us, my daughter’s school was going to report us for the days she’d missed due to her cycle
and I just got fed up and started looking for information on homeschooling. I found a public
school charter that paid for everything and provided a teacher to be available to field my
questions through email or over the phone; they would even provide OT services. I signed us up
and we started the next fall. That port has lasted us for 11 years and Jake will be 12 in December.
He has two target joints, the right ankle and his left elbow. I have gone through 5 miscarriages,
one of which were twins and finally had my son Ethan who does not have hemophilia. During
that time I’ve failed Jacob several times and sometimes that resulted in a bleed. When he was
little if I took a week or two off it was no big deal but these last few years if he doesn’t get
prophy, 50% of the time he will get a bleed. I’d love for him to learn how to infuse himself but
even the home health nurse who has 30 years experience can hit his veins every time. We are
working on the tricks shared with us through this site and hopefully I will get him to let me poke
him again soon. I’m sure I missed a ton of stuff but this is long enough as it is. Thanks for
reading if you did.
