Meir Chaim Shore
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Meir
Chaim Shore
(Light of Life)
Born Nov. 9, 2000
33 weeks and 5 days Esophageal Atresia, Right Polycystic Kidney and Vocal Cord
Paralysis
בס"ד
December 25, 2003
Life Chronicles of Meir Chaim Shore
(so far)
Written by: Rachel McCafferty Shore
(Meir’s Mother)
November 9, 2003 I turn three years old. Some might say that this is really my first birthday for I can now start to live without all that medical equipment and my mother following me around everywhere I go. I must say being freer does have its benefits, no more suction, no more changing of trach bands and tracheostomies. I even can eat better without choking. By now you are probably wondering what I am rambling on about, well for my first three years of life I have been a trach kid. (A child with a tracheostomy [a hole in my throat that allows me to breath])
My story seems to make peoples' heads turn for they would never know that I had a life threatening condition. What they see is a cute little active three year old.
Well it all began as you can guess three years ago.
In utero my mother was informed that I had Esophageal Atresia. My mother went and found out all the medical information that one could possibly find by using the Internet. She looked for the best doctors, in Israel. Due to this fact I was born in Tel-Aviv at Liss-Icolov Hospital 33 weeks and 5 days at 1.990kg. Twenty minutes after my birth with the loudest cry that my father ever heard, and a good tone test results I was rushed to the premature infant intensive care unit and taken care of by my new surgeon Dr. Nagar who is still with me today. She put a suction tube down my throat in order to collect my saliva. Due to the blockage of my esophagus to my stomach all saliva would have gone down my air way and I could have drowned.
At twelve hours old I had my first surgery, under general anesthetics and was given a gastro tube. The gastro tube is a hose that is placed straight into my stomach in order to be fed. For there is no other way of getting nutrition due to my food pipe-stomach blockage.
Everything went well until post-op, when I did not recover as well as I should have. I forgot to breath or had difficulties don't really know. I was intubated for 24 hours. Considered stable after 5 days of being in the critical section for preemies. It took three days until the doctors would let me be held, with all wires and all.
Within two weeks of constant holding during morning hours. (My mother went home to be with my big sister and brother) I was released from NICU to Dr. Nagar's care in the regular surgical ward at Dana Hospital in Tel Aviv.(the children's hospital of Icilov's ).
Life in the new ward was interesting. I must have been one of the smallest babies to arrive on the ward I was just 2 kilo(4.5lb.)and still needed much long term care. Some of the nurses were seriously scared to touch such a small me yet they were kind and supportive to my family.
Twice a week my big brother Noam and my big sister Chana would come and play with me, help give a bath, would play with my mobile. It was as fun as can be.
I have been breathing on my own for 6 weeks now and even had my Brit in the hospital for I was going nowhere fast yet it was a festive event. About a week before my Brit I had difficulties breathing, scary difficulties yet well enough to be circumcised. I had Strido could not catch a breath yet the inhaler medicine could not help me. This usually happened at night. And one night my mother and the nurse just put me in
an oxygen hood. Two days after the brit the breathing difficulties were scary for everyone (the room became a discussion unit with doctors even though my saturation never really faltered).
I was taken to PICU to evaluate my breathing. After a bronchoscope test the doctors claim Vocal Cord Dysfunction. I was also told that I had RSV, Pneumonia, and low hemoglobin. I was intubated for two weeks, given blood, steroids, and antibiotics. I recovered slowly with the help of my mother's constant care and observation of the medical staff. The first time the doctors tried to extubate me I failed. I was re -intubated through the mouth (the doctor stated that vocal cord function was noticed). After a week I was again extubated and was doing well on my own. I stood ground for 10 days doing really well breathing completely on room air. I was even taken out of PICU and put back down into the regular ward. This lasted a whole of 24 hours, and was back up in PICU with breathing difficulties and intubated yet again. (Why did this happen? Maybe the vocal cords were pushed then closed again who knew?) That was it 3 times intubated my ENT said ok, ventilator or Trachesotomy? Well of course my parents wanted the best for me. I was given a trach on Jan. 31, 2001 (the same time my big brother came into the hospital with juvenile diabetes, but that is another story and I am sure he can tell it better than I).
I was off the ventilator just had some oxygen (pip) given to me for about a week until I relearned how to breath. My mother learned how to take care of the trach, suction, tying the string, gauze under the track for cleanliness, changing the trach tube and so much more.
My Esophagiacal Atresia was still not fixed. So I was still with this suction tube in my mouth taking out my saliva. It is hard to believe but I am two months old have had two major surgeries, and my initial problem of EA seems to be taking a back burner in the hospital, thank G-d Dr. Nagar was around to make sure I was being taken care of, after all I am one of her babies.
I was really fortunate for the time in the hospital I got to know the members of my family. Everyday someone else would come and sit with me, Sunday my mother, Monday Aunt Judy, Tuesday Savta, Wednesday Grandma.
I always had someone with me. I was so lucky.
My mother organized a routine between hospital and home; it probably drove every one crazy yet she had to be home for my older brother and sister as well. She would spend evenings and some nights at the hospital. Leave the hospital after rounds, and my extended family replacements came. Go home sleep a little, spend the afternoons with my siblings, and my father would come to the hospital for about an hour after work and then go home to the big kids. A lot of babysitters on both side but it was important for my mother that no one was left alone.
A month went by being in PICU being pampered by staff and family. It came time to fix me up. Feb. 13 2001 surgery no.3 the big one the one I have been waiting my whole life for, End-to-End Anastomosis of my Esophagus and my Stomach. The operation took about 4 hours and what a stretch it was. I had 2 ˝ vertebrae separation between the stomach and esophagus. I was lucky that Dr. Nagar managed to connect the parts without pulling up my stomach and due to the esophagus's elastic personality she managed to pull just enough to sew together.
I was again placed in PICU for post op. and to be taken care of the Trach was nothing compared to the extra tubes I was given. Nutrition was given through TPN a permanent IV tube sewn in a main vein. A Chest tube was placed where the surgery took place in order to allow gases to escape, a lemon attached to know level of gases. The initial gastro was replaced for a Jejunstome - Gastro split tube. The Gastro side of the tube was having my stomach drained so no gastro fluids could cause reflux. The Jejunstome side was for food through the intestine.
Six weeks of care and recovery. Not allowed to sleep on my stomach because it might cause my stitches to rip, or looking horribly bloated due to steroids and no movement medication.
Purim came around and my mother dressed me up as a clown, Chana and Noam came to visit in their costumes as well. I think it was nice to try and enjoy the holidays as a family even if we were in the hospital. In many ways Purim (mid March) was a turning point for the family. My mother was beginning to see the possibilities of me coming home soon. I was breathing on my own (even if it was through a trach, and my esophagus was being repaired. Purim was the first time that I was allowed to go out of my room in PICU to see my siblings. During my stay in PICU I was only aloud to see adults.
In PICU I was placed in a semi sitting position to help with my breathing and against reflux. I soon grew to enjoy it. My mother had a car seat brought into my bed to help me get to my mobile. She also had a tape recorder with music playing as much as possible. It became a joke in the PICU which music are we going to hear today depending on the doctor or nurse on call. I received an education of Mozart and nursery rhymes during my three-month stay in the
PICU.
There was still a leak between my end to end after a month yet I was doing fine. I was still in PICU for observation and support for the regular ward was not set up for the amount of machinery I was using. Suction for trach. Kangaroo for the Jejunstome Gamko suction for the gastro, chest tube still in, TPN still in (even if not in use for reserve). As you know it I must have been doing really well for in one day in ten minutes I was rushed out of my bed that I maintained for the last month to the regular surgical ward to make room for some one who really needed the bed. Well that was it my mother said home now! Leak and all, machines and all, She said that if she has to train the nurses than I will be better off at home.
And Passover was coming up and we had my great grandmother and great grandfather (Bubbie and Zaddie) coming from the States to see me. I spent four days in a regular surgical ward in order for my parents to get the house ready for me. The amounts of materials needed were not just a diaper bag. All the above machines and supplies for the trach and gastro,(catheters, gloves saline, ambo, neck-ties, gauzes, hoses-connectors, applicators). Kangaroo bags, Oxygen tank baby saturation monitor, flash light emergency numbers.
JUST TO GET HOME!
At five and a half months old and just barely 4 kg I got my chance to come home. Against the doctors better wishes. They were so worried for I was not yet complete but my mother said enough is enough. Home and home is where I came on March 22, 2001 a Thursday just in time for the weekend.
NOW THE REAL FUN BEGINS, CAN I SURVIVE WITH MY FAMILY?
My parents are observant Jews who keep the Sabbath so when I came home my mother took on the responsibility of turning on and off electricity / machinery in order to keep me going. Of course the events to remember always are on the first days home. I was all set up Noam and Chana were so excited to have me home and sit around the Shabbat (Friday night) table as a complete family. I was rolled from room to room with a kangaroo at my side and gumko suction tube draining my stomach. Even had a baby swing to help support me and my mother could begin to function. Night came along we all went to sleep, my saturation was placed on in order for my parents to sleep better. My mother being a worried mother did not sleep so well. One has to keep awake to make sure the machines are working properly, do suction upon my request, and make sure the kangaroo has its 6 hours feeding with 2 hour breaks and keeping the routine going. It was going pretty well, I slept like a baby I was so used to all the noise from the hospital that I just conformed to my new surroundings. Then would you not know it, there was complete quiet. The gumko stopped working the kangaroo working very slowly on battery, and the saturation moved also to battery what happened?
The electricity went out, a black out.
This must be a script in the movies that with everything that my parents tried to prepare for they did not think of a generator. This must have taken every bit of energy my parents could muster to not go into a complete panic state. My mother decided that no one would sleep now but the children. She made sure that I was comfortable and decided to stay awake. Around 4:30 a.m. she said that's enough my father had to take over until morning. By 8:00am we had power back and the Shabbat continued as usual. We passed! We have been initiated into the cycle of home care. My parents passed the "They Could Do It" test. Not bad now everyone could relax more and get on with me growing up like a regular child.
Well it started routine a lot like the hospital schedules, yet there was much more warmth. I was held a lot more (maybe 10-15 hours a day) I received a real bath a day, real clothing (in the hospital my mother tried real hard that I be dressed at all times with my home clothes).
Swing in my swing, and my siblings could play with me. Boy what fun.
Passover came and I got to spend time with my Bubbie, and Zaddie. They were so happy to see me home and not in the hospital. I think it make their trip worthwhile.
Six weeks have passed since early check out of the hospital with bi-weekly check ups to see if the end-to-end has closed yet or do I still have a leak. I do a barium x-ray test to determine my status. Well I finally succeeded. Guess what? I now have permission to eat through my mouth. My parents were so happy they could not wait to get me started. They did not see any reason why I should not take to the bottle. I have been sucking since day one on a suction tube or on a pacifier. I have been given different taste throughout my feedings (milk droplets or wine drops on my mothers fingers or dunk in a cloth diaper.) My parents took me home made my first bottle and started to allow me to drink. It wasn't that bad for the first two sucks. On the third suck I started to choke and aspirate. Straight to my dresser-changing table, Oxygen turned on, suction machine grueling on ambo in hand. Well I was worked over for about an hour for a bit blue here or too much secretion there, a bit more panic than needed but one can't be too careful. Well we passed test number two of home care. Mother also stated that this was not going to happen again, and it did not. It took me about two months to get the hang of eating, but by September I was a real pro.
With the end to end officially connected, my doctor Dr. Nagar wished to make sure the esophagus was growing with me by doing dilatations. She felt to torture me was not fair so I was again put under general anesthetics to receive my first dilatation where she inserted a string through my nose out through my stomach (gastro). This string stayed in my nose for four months. Every time (about every two weeks) I was due for another dilatation I received local anesthetics to numb me while Dr. Nagar took a rubber hose-tube of different sizes and placed along the string in my esophagus to expand it. It really gives meaning to up your nose with a rubber hose.
By September my string was out, I was eating better, (I would eat some cheerios yogurts) my trach was a constantly being suctioned, and I had a lot of secretions. My weight always being a problem everyone says that I was under weight. My mother put me on goat's milk, with added extra nutrients and fat fast milk shakes. Nothing worked. Every time I would eat I would need suction (before and after) I might throw up after being fed either due to reflux and or suction. My mother just kept giving me food. She was not worried for I was happy attentive playful all the things an underweight child is not suppose to do. At a year old I was sitting up in a high chair wanting to be fed, I wished to be with my family around the table. I was always on my stomach so I started to roll and scoot.
Traveling to and from home to hospitals was the best thing, my day trip out of the house. I got to see my doctors, drive in my car seat and see the world. On these drives it was usually just my mother and I. The big kids were in school and my father worked. Due to having an overly protective mother in her fears of how dangerous it was for me to be unattended (alone in the back seat) and at times, or that I would need suction on the way. My mother made a trach guard out of material and Velcro with a buttonhole in the middle to place over my trach in order to prevent my small fingers from trying to pull the trach out. (I tried once and that was enough for my mother not to let it happen again especially if she was driving) My mother also carried a large diaper bag with the usual stuff, diapers, change of clothing, bottles, formula, pacifiers, ambo, saline, catchers for suction and a hand held portable suction machine manually operated. The larger suction machine (battery/ electrically operated) was always in the car or home. I was lucky that she found a way to leave the house and roam the hospital corridors and streets freely or I would have been completely cut off from the world.
I survived the first year of life with a lot of medical action. The second year was not as eventful, the year to allow me to get some strength, gain weight and catch up on my physical development. In February I had spontaneous pneumothorax (where my lung fell). At first the doctors thought I had an extreme attack of asthma but my mother said no, it was something else, as usual the fun event accrue on the Shabbat. I should have gone to the hospital but my mother still did not believe that my strange and heavy breathing was an asthma attack so she kept me home took care of me, when I needed the oxygen it was put on and I was comforted. The minute the Shabbat was out my parents drove straight to the ER to Icolov hospital to be told it was an asthma attack. Due to being in PICU for three months my mother knew the doctor on call. Or he knew her and he actually listened to her and found a second opinion and was happy to pronounce that my mother was correct it was not an asthma attack in fact it was a collapse lung. It took ten days for me to recuperate. The hospital staff was happy to see that I was such an energetic happy child who played and smiled and attentive to the world. I came back again to the hospital in May due to having had my adenoids removed and ear buttons place in. I was also officially diagnosed with sublogttic stenosis and a deformed cricoid cartilage that is preventing my vocal cords to function properly.
Back on home turf again I continued to grow even if small. When I hit 7 kg. my mother was ecstatic yet the doctors were still worried that I was not on the charts. My second Passover I was sitting up completely crawling forward and backwards just excited to be accomplishing regular things. In July at a year and eight months I actually started walking. I got my first pair of shoes in time for the Jewish New Year a few weeks before my second birthday.
Now that I got my legs I am on my way to being a complete toddler getting into mischief and exercising my curiosity, things are looking up. I am not treated like a baby any longer, just an over watched child. I still have the trach in and my mother as usual is very cautious with me. Being two has allowed me to learn some thing, to color, make puzzles, just playing and being me.
Now that I am big, my parents thought about the idea of decannulation. My parents again started checking out doctors and treatments for me. The best option for my family was to go with a local doctor, Dr. Stern who studied under Dr. Cotton and his staff in Cincinnati Ohio. Dr. Stern who works out of Schneider's children's hospital in Israel. I did a bronchoscope to make sure that my diagnosis of sublogttic stenosis was true. Dr. Stern agreed to operate on me but I had to wait until the spring/summer months for there is less chance of pneumonia. Dr. Stern was covering all bases; he had the hospitals lung specialist looked at me in order to see if I could handle the surgery. I was very fortunate that my mother did not completely listen to the lung specialist, in regards to his remark of "why do the surgery it won't succeed." My mother was in shock and just answered back "well we won't know until we try, there might be a chance it will succeed."
Two years and eight months old, and on July 1 2003 I went in for the big surgery to reconstruct my trachea with a graft from my rib, break the posterior cricoid cartilage of the vocal cords with hope that it works. The surgery lasted 6 hours and again placed in PICU to be observed and to recuperate for three days. I was put down in the regular ward for two days to see how I was doing. Again my mother said home, the hospital is no place for me I will end up real sick if I stay any longer. I was taken on vacation for a week to recuperate, and learn how to deal with the new shunt in my throat to hold the graft in place. It was uncomfortable, made me choke on food, and made my skin red. I was also down sized to a smaller canula to help prepare for decanulation. The shunt lasted about 6 weeks. Thank G-d I still had my gastro button in for there were times my mother would pump me just to make sure I was ok for the shunt had me choking at times, then I would not eat well. Come the end of August the shunt was removed and the canula was capped/blocked to see if the new upper airway was working. I did very well.
Nursery School started September 1, 2003 my mother said go; she has had enough of me in the house. I actually was happy to go just to be like my big siblings and go with my food and my backpack. What fun! My mother hung around for the first few days of school until the teachers got the hang of me. They were so scared, but lucky no suction, just coughing. I have a girl who watches me in school and my mother's phone numbers are on speed dial, in case of an emergency.
Sept. 11, 2003 the canula came out.
I survived. I could breath on my own.
My neck was wrapped up in order to prevent air leaking from my neck; after all I still had a hole there.
It's been a tough three years but I did it. I have been decanulized for two months and going strong. Hope this continues. I could not have done this with out the help of my family, Thank you! G-d willing the next 100 will be a bit easier,
Happy Birthday to Me.
Any one is free to contact us shorejr@yahoo.com Thank you.
Rachel Shore