They came very early on his 6th day of life to take him to surgery.
They let me walk with him down to the second floor surgical doors. There
I'm insturcted to go up to the 6th floor waiting area. When surgery was
over, they would call for me up there to come down there where the Dr.
would talk to me. I'm not told how long to expect this to be. Still not
sure exactly what they were going to do either. I know it's an intestinal
problem. No one has explained Hirschsprungs to me yet. I head up to the
6th floor waiting area. Elevator doors open, I step out. This is weird.
There is a nurses area that has people sitting around in it. I hear others
talking and a TV going down the hall. The hallway is dark though. The 6th
floor back then was actually a area used for ICU and surgical waiting room
for people who's children would go to ICU after surgery. The phone was out
at the unused Nurses station. That's why people were sitting out there.
For most of them, they were waiting on a call from ICU saying they could
come down to visit their child. In the bigger room were chairs that
reclined for parents or family members to sleep in. There were no Ronald
McDonald houses at this time. Pillows and covers on the floor where people
slept who didn't have chairs to sleep in. Most everyone seemed to know
each other. Most had been spending time together for a day or two while
waiting to see their kids. Hours went by. No word. Phone didn't ring for
me. Between 4 and 5 hours later, Dr.Voteler comes up there. Talk about a
hush coming over an room. Silence hit when people saw him. They scattered
out of there or hung to hear what he was going to say. Little did I know
at that moment, Dr.'s don't come up there in general even when a child has
died. Generally a nurse will come up then. So.....this was shocker, the
ones that knew who he was, were quiet relieved when he came over to me.
He's there to tell me why it's taking so long. He explains, I don't
understand most of what he says means. Tells me they are now in the small
intestinal track. They start with the colon and take one segment after
another for biopsy untill they find good tissue. Segments being every 4 to
6 inches they take another biopsy. He wanted me to know what was taking so
long. I thanked him. He told me they would call for me when surgery was
over. Now, no one has told me diddly about hirschsprungs. I have no idea
the effects of this disease. All I know is my son has an intestinal
problem. Which I'm already scared out of my mind cause my brother had
intesinal blockage. Although I was told Mac died cause an incubator went
dry, I would learn within short time that might have caused his death at
the time, however, he would have died anyway cause they did not fix the
problem by just removing the blockage.
Hirschsprungs is known as "The Gutsy Disease". Most all cases are in
the intestial track. There have been some esophagal cases which are not
treatable to my knowledge. In layman's terms, Hirschsprungs is the lack of
muscle development. Meaning you can't swallow if it's esohagal. When in
intestines, there is no food absorbed where there is effected tissue,
causing blockage or totally slick intestinal track. There are articles on
the web on Hirschsprungs. I was surprised to find just how old this
disease goes back. Realizing they should have known what it was with my
brother. Can't say if they had a clue on what to do about it back then
though. Hirschsprungs is a cruel disease just as most are. It depends on
where and how much it's effected on what the out come is.
Hours have gone by again. People are talking to me. Telling me the
rules of ICU. Telling me how ICU is set up, what rooms mean what. The
rules of the waiting area. So on and so forth. The phone doesn't ring for
me. Once again Dr. Voteler appears. Now this time I'm aware this is not
normal. Everyone does same as before, some scatter. One lady stays with me
to hold my hand so to speak. He isn't talking in front of others this
time. The first thing he tells me. This is the worse case I've seen. Tells
me they didn't find good tissue till they got to the JeJunum. I've no clue
what this means at this moment. Tells me he has an ostomy. Tells me I
should go home. The baby isn't going to live. Ok Look Mister! I'm not
going home and I want to see my baby NOW! He smiles at me. Tells me he
will have ICU call for me as soon as he is settled in ICU. Smiles again,
then walks off. It was almost two hours later when ICU calls for me to
come down there.
Nurse meets me at the door. Has me put on scrub gown and scrub my
hands. Takes to to the far back room. This is the room for critical care.
There are lots of babies in here. Machinery everywhere. Beeping noises
going all the time. Tubes, tubes and more tubes. I spot him. His laid out
in a flat bed that has glass sides with heat lamps up over it. Called an
OHIO bed. Can't find him for all the tubes and wires going to him. The
nurse is tring to explain things to me. I'm listening, I'm not really
hearing her. What all she is telling me will start sinking in later when
they make me leave ICU. For the moment I just want to hold my son. At this
point they won't let me. When I start talking he re-acts. This is very
noticeable to her. Very noticeable. She says, let me see if I can get Dr.
Voteler. He came down there. This was the begining of a unspoken rule. Not
sure how, William let him know he wanted his mama. William got his mama.
Took about 10 minutes of getting him out of that bed and into my arms.
From that day, after every surgery, he woke up to me being right there in
recovery. This is something they practice now with children I think. They
didn't 21 years ago. William did super as long as I was there. We moved
quickly through the rooms to the front ICU room and out of there to a
room.
He is put in a private room. This is due to him being on Hyperal, also known as TPN. It's full name is Hyperalimentation. Think I have it spelt right. Hyperal is a IV solution that you can live on all your life. It has everything you need except for fats. For that they piggy back lipids into the IV. Problem with Hyperal is keeping good veins open for it. Very strong solution it will burn terribly if the IV should inflitrate into the tissue. Back 21 years ago, this was a extremely new procedure in children. It was not being used for long term care at Children's. The picture of William that will be on the Album page, you will see the bandages on his head. This was at this time where they had the IV. He has the tube down his nose still. He head and face is a bundle of tape holding tubes in place. That's ok, he's in a room, where I can be with him all the time. Taking care of him the best I could consdering all. Within a couple of days, Dr.'s keep coming by. Most not his Dr.'s. I didn't know until later, it was cause he had made medical history. He was still alive. A couple of days after getting moved to a room, I start bugging them to teach me to care for him. No problem, they show me the ostomy care. Didn't take a real genius to measure what the ostomy output was and record it, or weigh his diapers and record that. He didn't get feedings, so anything they would let me do, I wanted to do. I wanted to take care of my son. They pretty much taught me anything I wanted, let me do all I could do without breaking any hospital rules.
Months just drag by. William is now almost 6 months old. I'd gone home
to do laundry. I get back late that night, he's not in his room. This was
not that uncommon when I would return from going home to do laundry. He
had become their baby too in a way. One of the Nurses was always snatching
him up when I would go eat, or go home to do laundry, or whatever took me
away from him. This time is different. Nurse Denise Wade comes into the
room just crying her eyes out. Keep in mind, we have been there 6 months,
most of the nurses and I had become friends. Denise and I had become
especially close. She would take me to her home, fix me something really
good to eat. Nurses are extremely special people. They worry about parents
and family also. You might not realize you need a break, but you do. I
don't mean a break like going down to the coffee shop, a break getting you
away from the hospital. Anyway, here she comes into the room crying. She
tells me his IV had infiltrated. His foot was terribly burned. Terribly
was not even close. He's in the treatment room. I head down there. Now,
this Dr. which I have never seen somewhat pushes me out the door. First
mistake he made! Then starts telling me they are going to remove his foot.
NOT! I ask where is Dr. Votler. He hasn't been called. Well Dr. you just
messed with the wrong mama! He thought he was going to stop me from going
in there. I push his butt to the wall told him. YOU ARE NOT TOUCHING MY
SON! NOW YOU GET DR.VOTELER. I went in, got my son, took him back to his
room. Here come the nurses. I'm calm, I'm not going to budge and neither
is William. I'm not screaming or having a fit. Nurses start doing what
they know to do, get his foot elevated. Although it's late at night,
Dr.Voteler appears. He is pissed to say the least. It's all over Williams
chart. No one cuts on this child without his approval. Not even for a cut
down. That's where they make an incision to get to a big deep vein for a
longer term IV. Needless to say, I never laid eyes on that resident again.
William did not lose his foot either. It was horribly burned. Burned the
whole instep out of his foot. Denise is in hysterics. I am aware there is
a child down the hall from us dying. I knew what had happened. She was
tied up with this dying child. How could I find fault with her for what
had happened. I should not have left him. Hugging her trying to reasure
her, it's not her fault. She is still hysteriacally crying. They send her
home. She went off duty but didn't go home. She came and stayed in the
room with William and I.
In the past months I've seen so much with others. I felt blessed this
was something that dealt with from birth. The mom who was walking up and
down the hall holding her baby that had died. Hours later the nurses were
still trying to get her to release the alreeady yellowed baby. The parents
who had just been told their 3 yr old has leukemia, the parents hearing
their 5 year old has cancer. Heaing on the news about a teenage
cheerleader who slipped while sitting on the back of a car, hitting her
head on the bumper. Then hours later hearing them telling her parents she
didn't make it. Over and over so many children died. I wasn't a busy body.
Our room was right by ICU, the elevator and the Nurses station. During
this time I saw other little ones come in with hirschsprungs. They would
go to surgery, get ostomy and go home. This seems so unfair to me. Not
truly wanting anyone to be like William. I couldn't understand how his was
so bad, and theirs wasn't. Parents of a child that was terribly malformed
left and never came back. Just could not understand this. The mom who gave
birth to a herion addicted baby. She took his meds herself, leaving her
baby to go into shock. That was one I was pleased to watch get removed
with handcuffs on. I would generally shut our door when things were going
on. Could still hear though. For the most part, when bad things were
happening, I'd be sitting there crying, asking God, why? They say God
never gives you more than you can handle. I wondered time and time again,
does he have me confused with someone else? One night on the news was the
story about the mother whos boyfriend had beaten one of her children with
a hammer, and stabbed the other in the head with a screw driver. The boy
died that had been beaten with a hammer. The girl was in ICU. This mom is
outside ICU door with Police. She wants to get in and see her daughter.
She is screaming, the Police are taking her to jail. I'm sitting there not
knowing what I'm thinking. What if mom being by her side makes a
difference if this child fights to live or not? Is she at fault? Did she
know the boyfriend was violent? I'm in shock that anyone would do such a
thing to a child. Alot of us are parents who are fighting to do all we can
to keep our children alive. When people have abused their children, or
leave them there, a bitterness hits hard. The feelings of why do people
have children they don't want? Why do these children have to suffer? Why
does any child have to suffer. Why can't we be born perfect, then later if
something bad is going to happen, happen then, where atleast we can
understand what is happening to us? Not meaning I don't feel for those who
have medical problems as teenagers or adults. Just meaning babies don't
know why they are stuck with needles, have tubes running everywhere. Not
meaning suffering is any less later in life. Just meaning there is a
understanding of why your getting stuck, proded and in pain.
He was almost 25 lbs, now going down in weight fast. They can't find a
formula and are out of veins for IV's. A new Dr. comes from Houston. Dr.
Strickland, although I hear he no longer practices, he brought a new plan
with him. William is dropping weight so fast. Can't keep his body temp up.
I have him baptized, things are looking real bad. They move us into the
biggest private room on the floor. It's big cause of the stairwell next to
it. Take out the baby hospital bed. Bring his baby bed from home up there
for him. His spring horse to play on and make things as close to normal as
possible. I'm down in the basement getting something from a vending
machine when a woman approaches me. She says, your Wild Bill's mom aren't
you? I said yes I am. She said, how do you do it? I said do what? She
said, you are always smiling, pulling him in his wagon around, taking him
outside, bringing up new toys. I see you all the time and you always
smile. She then asked again, how do you manage, he's been here all his
life, with knowing you will never take him home, how do you do it? I
smiled and asked, who says I will never take him home? I told her, I don't
think about anything but putting smiles on his precious face. I do it
cause I love him. He's my son. Is there really a valid question in "how do
you do it"? You just do it. One thing is he's, not known any other life.
She doesn't know it, but I'm thrown back by her boldness. I know people
talked, but no one had literally said something like that to me. Now
thinking, I'm going to ask for Dr. Voteler, Dr. Strickland and the Intern
at the time, to met in my room. Considering he's not doing good, isn't on
hyperal at this time, I want a pass to take him home for a few hours. My
request was granted. William goes home for a few hours. Now what this
adventure did was put another idea in Dr. Stricklands head. William is now
having his first Birthday. Big party in his room. William is now skin and
bones at 8 lbs. Keep a hat on his head trying to keep his head warm. A new
journey to begin. Dr.Strickland announces, William should be sent to
Hermman's Hospital in Houston. That is where Dr. Dudrick, who invented
Hyperal is. In houston they have sent a couple of children home on
Hyperal. A problem arrises. Hermman's is wanting funding taken care of up
front for this. Barbara Noblin from social serices, continues to search
for funding.
It's just before Christmas. Barbara pops her head in the door. Says,
Merry Christmas. I knew at that moment, she had gotten funding! Everything
gets arranged fast. Time is serious element here. How will we get
there?
The next page is about Houston, then getting to finally go home. Yes,
home, he does get to go home, eventually!
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Support Group for
familes with HD