Below is a letter her mother (Cherie Gasbar) wrote while Ayden was hospitalized with Infant Botulism last November.
My Sweet
Girl,
Today is the
first day I am thinking clearly enough to write this. Today is Friday, November 11, 2011.
Saturday, November 5, 2011 we took you to
Quincy to pick apples from an orchard with some friends. You were your usual, lively, self and enjoyed
roaming around with us. We bundled you
up and walked throughout the orchard. We
went home later that day and went to a birthday party at our friend's
home. You loved being around all the
other kids and had a great time.
Sunday,
November 6, 2011 we were at home. You
seemed fussy and had been acting like you were teething. You just weren’t yourself. You are never a fussy baby so this was
different for you. Mommy went to work
from 12 to 5 p.m. Sunday and you and daddy hungout at home, watched football
and napped. Daddy said you were still
fussy and he held you a lot of the day.
We went to Grandpa Kevin’s house for dinner around 6 that evening and
you seemed to enjoy yourself. You
enjoyed being held by everyone and were standing on their laps, laughing, and
smiling like usual.
We went home around
9 and went to bed. You and I were up a
lot that night and you were increasingly unhappy.
When we got up in the morning I went to the
store and purchased baby Ibuprofen to see if that would help your
teething. I gave you the first dose
around 8 a.m. and again at 3 p.m. You
began shrugging your shoulders and not supporting your head when I would lift
you and I thought you were becoming exhausted.
Daddy could not come home soon enough to help. You were becoming inconsolable.
I tried everything I could think of
throughout the day to help you. I gave
you a bath, which you normally love. I
gave you cold teething rings, frozen squash in a mesh teether, rocked and
rocked, nursed, went for a walk, etc. I felt like I had tried everything. I called Grandma Deborah throughout the day to see if she had any suggestions. She got off work and came down to the house
around 7 p.m. She was going to try to
comfort you so that I could sleep some since we had nearly been up for 24
hours. The only thing that would make
you stop crying for a few seconds was humming and bouncing. You were still inconsolable and
miserable.
I asked Daddy if he thought
we should take you to the doctor. We
were beginning to think this was more than teething and that you possibly had
an ear infection. All three of us went
back and forth about taking you because it was passed hours and it would be an
emergency room visit. We thought maybe
if you got a good night sleep we could go in the morning.
After a few more minutes we swaddled you up
in the car seat and left for Central Washington Hospital. We walked in…it was dark and quiet. We were quickly admitted and you continued to
cry throughout all of it. Your cry was
weak sounding and not very loud. The
nurse came in and weighed you and checked some of your vital signs. The ER doctor on call came in to look at you
and checked your eyes, ears, and throat and said everything looked good. This was not teething and not and ear
infection. He said we needed to have a
catheter put in to get urine in order to check for a urinary tract
infection.
I broke down at this
point. Daddy stayed with you in the room
and grandma and I waited outside the room.
The urine was taken to the lab and came back clear. The next test was a blood draw to check for
infection. Again, this test came back
clear. The on-call pediatrician came in
and re-examed you to make sure both doctors agreed before moving forward. They thought maybe a rare disorder where the
small bowel moves into the larger bowl may have occurred. They did an ultrasound of your stomach. The ultrasound tech and both doctors felt
confident that the results looked normal.
They sent the results away to be looked at by another doctor. They then ordered that a barium enema be done
to inject dye throughout your intestines to ensure there was no blockage. I stood next to you the entire time and you
were so strong. You had been crying this
entire time. The lights and machines
were enough of a distraction at times to make you stop for a couple
minutes. The doctors told us there was a
50/50 chance that this test could come back positive. If it did, we would be airlifted to Seattle
Children’s Hospital to undergo emergency surgery.
I became physically ill and was shaking. I couldn’t get warm and made several trips to
the restroom. This test came back negative. Praise the Lord. The doctor then ordered a CAT scan to check
for neurological failure. The scan came back
clean. Again, Praise the Lord. Dr. Cook and Dr. Eisert then thought this was
some kind of metabolic issue or a very rare disease called infant botulism.
I was asked a series of question during the
time we were in the ER. If I had given
you honey, dropped you, hit your head, if you had fallen, etc. I have done everything I can to be the best
mom to you and these questions tore me apart.
We were taken up to a hospital room in the pediatric unit where they
would watch your vital signs throughout the night and provide fluid and glucose. You had an IV placed in your little arm that
evening. We slept together in the
hospital bed so I could be as close as possible. You slept on and off but whimpered throughout
the entire night.
Grandpa came by early the
next morning to check on us before he flew out to Portland for work. We were still trying to figure out what was
going on. He needed to leave shortly
after coming and I broke down crying. I
really needed the support and he agreed to cancel his trip. Shortly after that, Grandma came to the
hospital along with Grandma and Grandpa Gasbar.
Everyone was very worried.
The
doctors watched you throughout the day but you continued to get worse. You could no longer hold your head up at
all. Dr. Cook came back after talking
with several other doctorsand said he felt 80-90 percent confident this was
infant botulism. He said Wenatchee did
not have appropriate medical support to deal with this disease and that he
recommended we be airlifted to Seattle Children’s Hospital where we could
receive expert care. Daddy told him to
make the phone call as soon as possible.
Within a short amount of time we were transported to an ambulance. Grandma Gasbar and Daddy got in the car and
headed for Seattle. There wasn’t enough
room on the plane for anyone but us, two pilots, and two wonderful women who
were from Children’s Hospital. They put
you on a stretcher and strapped you down. Your little body looked so small. It didn’t look right. There was
nothing I could do to protect you and I collapsed to the floor after Dr. Cook
left the room. You were taken to the
ambulance and we went to Pangborn airport. It was so hard to leave everyone else knowing that it was just you and
I.
We drove to the airport without any
lights or sirens which made the drive feel like forever. The ambulance driver was kind. He kept looking over and checking on me. I could look back and see the top of your
head from the front seat. We arrived at
Pangborn and went through a private gate to the jet.
They got me out of the plane and had me stand
off to the side. A man came over and
handed me a bottle of water and a piece of gum. He gave you a teddy bear and wrapped his arm around me. He told me not to worry; we were going to be
taken care of. They took you out of the
ambulance and we boarded the plane. I
feel like I was on auto pilot as they told me different things to do and where
to go. Once we were in the air I kept
looking to the flight nurses for reassurance that you were okay. I could see your chest rise and fall and this
is what I used to see that you were safe. The nurses would signal to me to tell me you were doing well or if you
had your eyes open or shut. We reached
Seattle in about 30 minutes and were taken off the plane at Boeing
Airport. We were transported in another
ambulance to Children’s Hospital. I
remember clinging to the teddy bear and my cell phone. Daddy sent me a message saying they were
close.
We got the hospital quickly and
came through the emergency doors. People
were at the doors when we arrived briefing the crew and asking questions. I walked beside your stretcher telling you I
loved you and that you were going to be safe. We went into a small room where there was a chair for me to sit in. The nurses were worried because I was
shaking. You were awake and crying. Several people came in and out of the room,
asking questions and getting supplies to make sure you were stable. A nice, young, nurse came into the room and
asked the same questions I had already answered before. Had I hit or shaken you? Do we feel safe at home? Have I ever dropped you or given you
poison? A neurologist came into the room
and began talking about CAT scans and neurological damage.
Daddy walked into the room, thank God. I felt so alone trying to take care of
you. I burst into tears again and hugged
daddy for a long time. The nurse brought
a warm blanket and told me to climb into the bed with you. I laid there with you close to my body, still
not knowing what was wrong and if it was getting worse by the minute.
Teams came and went, people introduced
themselves and left. Papers and release
forms that gave the doctors permission to treat you needed to be signed. I felt like I was sitting there as people ran
around, almost like things were in slow motion. At this point I had been awake for about 2 days straight. I was trying to tell the doctors detail by
detail to ensure they knew everything that had happened, what we had done, and
where we had been. We were there for a
few hours and you began to fall asleep. I snuggled you close and tried to relax. My muscles were tight after being flexed for so long and all of the
shaking. The nurses brought in crackers
and drinks although there was no way I could eat, I tried. After what felt like forever, we were taken
to our room.
We were supposed to be
transported to the Intensive Care Unit but they said they would like for us to
be in an Isolation room and move if necessary. At this point they were also diagnosing you with Infant Botulism. Second floor, room 2140, isolation
status. Nurses still flooded in and out
asking the same questions as before. I
had been awake for days and the details became harder and harder to retrieve
from my memory. I had to keep looking to
others to help me fill in the blanks. You were hooked up to several monitors and had the same IV from
Wenatchee.
We slept for a couple of
hours that night as doctors and nurses checked you every few minutes. The biggest fear is that this disease would
take over your respiratory system and we would need to use a ventilator to help
you breath. Thank you Lord for your
protection! It was so hard to sleep so I
lay in bed watching your chest rise and fall. Daddy and I prayed with you every night and asked for your healing and
protection.
Each day was a little bit
different. Your main team of doctors did
rounds each morning that we were involved in. They talked about the day before, the diagnosis, treatment, and
prevention. It was reassuring to listen
to them talk. There is only one place in
the entire world that treats Infant Botulism and has developed an antitoxin
that neutralizes the toxins taking over the body. California’s treatment center had been
notified the night we came here and they flew the BABYBIG treatment the
following morning. The treatment was a
two hour infusion. We watched you
closely for two hours to make sure your body didn’t react negatively. Everything seemed to go well and the doctors
continued to monitor you closely. They
were still taking your glucose levels by pricking your heal and toes. They were also taking blood draws to see the levels
of gases being emitted into your blood and the PH levels. You were so weak you could barely cry when
they took blood. Your facial expression
showed you were crying but hardly any sound came out. It was so hard to know you were hurting. I would lay my head close to yours and hold
your hand as your tears hit my face. You
were responding well to treatment at this point.
Within the next few days following you
started to regain strength in your hands and legs. I bent down to pick something up and when I
noticed you were watching me, I said “boo”. You smiled. It was the most
beautiful smile in the world. It looked
like the kind of smile you have after visiting the dentist. Only part of your face went up, but oh God,
was it beautiful. We knew at this point
that you were interacting with us and the treatment was working.
You continued to make great progress each
day! The doctors were very impressed and
said they hadn’t seen a baby with Infant Botulism progress so quickly. Although your tests were still coming back
negative, the doctors were confident they were treating the right
condition.
Thee glucose screenings
continued to come back showing stability. We continued tube feeding you with pumped breast milk. You were on a “nothing by mouth” status for
several days. Mommy pumped milk 8-10
times per day to ensure you had what you needed to heal. This was very difficult to make sure I was
eating and drinking enough to produce enough milk for each feeding. You were taken off of a continuous drip to a
bolus feed every couple of hours in larger amounts. Mommy and daddy took over feeding you through
the tube and were taught how to use all of the equipment. After several days of nothing by mouth we
were cleared to try breast feeding. You
refused the breast for a couple of days, so we were using bottles to help
retrain the suck and swallow reflexes. The doctors ordered a swallow test on Tuesday, November 15, 2011. They said you did wonderful and that you are
protecting your airways “beautifully.”
We were cleared to try nursing or bottle feeding you before each tube
feeding to see how much you could take orally. You are still weak but trying so hard during the physical therapy
exercises. You get frustrated not being
able to do what you could normally do and we can really see your independence
showing through.
Several nights you have
wanted someone just standing over your crib while you try to go to sleep. Daddy and I have spent several hours just
standing there, running our hands through your hair, and touching the bridge of
your nose. I would stand as long as it
took just to give you a tiny bit of comfort. You have been so brave!
Doctors
have been discussing discharge within the next couple of days. You have had several visitors who have come
to see you and give their love. Mommy
and daddy haven’t left the hospital and the furthest we have gone is the
cafeteria. Grandma Deborah went to the
emergency room with us and then came to Seattle the next day and stayed for
several days. Grandma Sue has stayed the
duration and is coming back and forth from Great Aunt JoAnn’s condo. Grandpa Kevin and Jennifer and Grandpa Dennis
drove over for a visit too. Shannon and
TJ came several days and some of the Gasbar side came over and brought
food. We have had a lot of support from
family and friends.
The doctors have
decided that we will go home Thursday, November 17th, 2011. Doctors are setting up care in Wenatchee so
we can have people do therapy at our house until you are back to normal. You are doing so great and smiling at people
when they come in the room. The doctors
enjoy coming to see you and they all talk about how cute you are! Everyone has been so kind. Mommy cried today while thanking Dr. Dane for
his love and care over you. We were told
how wonderful everyone here would be but they have gone above and beyond to
take care of all of us.
You are a
miracle my sweet love. We treasure you
dearly and thank the Lord for his protection.
I know one day you will read this and know that you were sick. I don’t know if you will ever know just how
bad it was. I hope that you will know
how many people were there to support you, how many people love you, and how
many prayers were sent up for you. I
hope you trust the Lord to take care of you and know that your Mommy and Daddy
love you so very much.
