McKenna Nicole Sartori
 |
McKenna at One Year of Age
My Story…
I was born on July 9th, 2002. My family is mommy, Janet, daddy, Henry, big brother, Randy (age 15) and my puppy brother Jasper. I was a full term girl weighing 6 lbs., 4 oz and 19 1/2 inches long. Everyone was so relieved and excited I was here because mommy had such a hard time while she was pregnant with me. She had blood clots in her legs that went to her lungs. She even had to stay in the hospital for a while and then had to give herself several shots everyday to keep the clots away. I worried mommy right off the bat because my tongue wasn't shaped as brother's was when he was born and I had a little lump in my cheek. Mom noticed I breathed differently too and had difficulty eating.
The nurses in the hospital reassured her and daddy that everything would be ok but mom had a feeling. The very next day, my very first doctor, Dr. William Cosgrove, told mommy and daddy he wanted to do several tests. They thought I might have, Down's or Turner's Syndrome and did genetic tests. We all went home a few days later and found out that all my "genes" were ok, but that didn't explain the lump in my cheek.
The next two weeks were a busy time for my parents. I had an ultrasound of the cheek and neck area, had increased problems with eating and breathing. Mommy was staying right on top of things and struggling to find an answer. The doctor put me on an apnea monitor and mommy and daddy barely slept at all and mommy asked for a saturation monitor to make sure I was getting enough oxygen. The day it arrived was the day everything changed.
Mommy is a nurse and knew when she put me on the monitor that my oxygen should be in the 90's range, but it was really in the 70's. Daddy drove us all very fast to the hospital. Mommy talked to me all the way encouraging me to breathe. She didn't know at the time but being in the car seat actually made it more difficult for me to breathe. By the time we reached the hospital, and I was examined by the nurses and doctors, I was looking a little more pink and awake. But one of the residents thought I should stay the night. Good thinking because the next day when I met Dr. Marshall Smith, we found out I had a
lymphangioma.
A lymphangioma is a series of lymph nodes gone out of control, growing, collecting more lymph fluid and forming cysts in the tissues. I had my first bronchoscope and MRI at 2 weeks old. The doctor found two small cysts flopping back and forth over my voice box, blocking my airway. He did a surgery to remove them and two days later I went home on oxygen and monitors.
I became much more aware and alert now that I was able to breathe better but soon the cysts came back and I got my trachy on my two month birthday on 9/9/03. Mommy, daddy and brother had a very hard time with this. They couldn't hear my little voice any more and were very sad. Daddy cried non-stop for the first 3 days. My brother was afraid to see me in discomfort and hooked up to tubes. Mommy and the nurses, respiratory therapists and other staff at Primary's Children's Hospital in Salt Lake City helped all my family learn how to take care of me and not to be afraid of my
trachy. Daddy almost passed out the first time he changed out my trachy in the hospital.
The day came that the doctors said I could go home and we were all so excited. It took a lot to get used to, having nurses in the house all the time and all this new equipment, but we learned we could do it. I had to come home with a feeding tube in my nose because I was having a hard time eating and breathing at the same time. I was so proud of daddy and brother, who said they wouldn't change my diapers when I was in mommy's tummy, changing my ties and trach, feeding me through my tube and even starting me breathing again when I stopped. MY
HEROS! Mommy felt very sad sometimes because she knew how serious it was for me to have a
trachy, but she was very glad she was a nurse so she felt confident to take care of me.
During this time, Mommy got on the computer and spoke often with Dr. Cosgrove, Dr. Smith and his nurse Heidi and found out about a research study that was going on for kids with lymphangiomas in Denver. They were investigating a medication that they could inject into the cysts to make them shrink up and go away! Mommy, daddy and brother wanted to get me in that study. The study was coming to a close and only a few more children would be allowed. But because it was a research study, mommy and daddy would have to pay for everything themselves. Mommy spoke with my good friend Mickie Jo at Intermountain Health Care and got the insurance CEO's involved. She wrote lots of letters, made lots of phone calls and prayed. We waited and waited. On 9/20/03, my daddy's birthday, mommy got a call from our insurance, Intermountain Health Care, that they would help pay for the research study drug! Mommy cried on the phone and called daddy right away at work. All our family was so excited! Next more waiting……
I couldn't get into the study until I was 6 months old so mommy, daddy and brother did their best to keep me gaining weight and happy. My little heart and lungs are healthy enough that I didn't even need any oxygen, just humidity and lots of suction. I'm so content when I'm with my family!
 |
McKenna at 6 months with all her friends partying in the crib
I had an infection in December and I had to stay at the hospital for a few days. When I got sick my lippy (my cousin, Taylor, can't say lymphangioma, so she calls it lippy-jan-u-loma) on my cheek got so big! I had another MRI when I turned six months, 1/9/03 and it showed some changes in my cheek. We sent the MRI to the study people in Denver. They said I couldn't be in the study, because my cysts were different and couldn't be injected with the medication. My family was so sad! Dr. Smith said we would have to look at surgery as an option. Waiting, waiting, waiting……
 |
8 months just before her first debulking surgery...
had to bring her friend big bird with her.
On 3/25/03 I had my first "debulking surgery". The surgery was 13 hours! The part of the angioma they could weigh, weighed 7 ounces! The lippy had gone behind my left ear, down my cheek, shoved my trachea and esophagus to the side and even behind my sternum. It had wrapped it's self around my blood vessels, nerves and tissues. My doctors were so careful and were able to free up all my nerves without damaging them, but because the doctors had to move them around so much, they are having a hard time "recuperating" now. The doctors had to take my trachy out, allow my sternum to heal after they cut it in half trying to get the tumor out. I was on the ventilator for 15 days then went back to surgery and got my trachy back in. At this time my family was having a very hard time. My mommy's mommy died of cancer and brother was so, so sad. Grandma came to see me in the hospital and told me she would always be our guardian angel and to trust our Father in Heaven. She told me to remind mommy, daddy and brother to love one another and that we would all be a family forever no matter what.
 |
At the Park 9 months
just one month after her surgery
I was back in the hospital on June 10th, when we found out I had a pyloric stenosis and got it repaired. I had had enough of my NJ tube and so I also got a G-tube. During this stay, I got very sick with parainfluenza, aspiration pneumonia and had bacteria growing in my blood. I couldn't eat because I kept throwing up, so I started on IV nutrition called TPN. I'm still on that now at home. I finally came home on June 26th, because mommy and daddy insisted to the doctors that I needed to get over my pneumonia before the doctor did a nissen procedure (that's where they snug up your esophagus so you can't throw up). I heard mommy say to the nurses, that she didn't want to have my first birthday at the hospital.
I had my first birthday at Sugarhouse Park and it was so much fun! I can't wait for the next birthday. I don't understand why we don't just have birthday parties everyday! One of my home health nurses gave me a red-headed trachy doll, just like me with a g-tube and a picc line too!
- First Birthday Photos Click Here!
Mommy and daddy started testing me just last week to see if I could handle feedings through my g-tube. I have been "fair to partly cloudy" as mommy likes to say so far. I still throw up, but not as much. I may be getting a nissen soon if I keep throwing up. Dr. Smith will do another surgery in the next few months. My family hopes soon because my lippy is getting big again.
Everyone has been so good to our family and we say thank you every time we can. Mommy and daddy say that there are so many people that have been blessings in our lives and we know that our Father in heaven sent them to be his helping hands. Thank you everybody! You are our blessings and we love you!
Update, November 2003: McKenna had her second debulking surgery on Oct. 30th to remove more of the lymphangioma in the parotid region, left side of her face. The surgery lasted 10 hours and was done by Dr. Marshall Smith, Dr. Hadley and perhaps Dr. Muntz and Parks assisted as well, not sure. They had an extremely difficult time idenitifying nerves and could not see any "normal" landmarks because the angioma had pushed everything out of it's way. It took just two hours to find the 11th cranial nerve, then several hours more to disect it away from the angioma. She has a turbin wrapped around her head and her face is very swollen. She also had a decompression drain stiched into place...called a bulb suction that will be removed later. She was on a morphine drip for the first night for pain control but didn't have to go to PICU or be kept on the ventilator! YEAH! Dr. Smith wasn't able to get it all though. There is still a small portion at the base of the skull where the cranial nerves and blood vessels go into the brain. If it causes problems in the future a neurosurgeon will have to deal with that because there are too many vital structures that could be damaged. We are staying hopeful and don't know at this point when they will discharge her. Next they will work on her tongue. That won't be until spring or so. Her new nick name may be droopy for a while because those nerves are going to take months to wake up, however she is always suprising us...so who knows what HER time table is!
Note from my parents…
A huge thank you to Primary Children's Medical Center and to Heritage Brookside Nursing Care, Praxair and IHC insurance. Our gratitude to all our co-workers who have adopted us as their extended family and embraced our challenges as their own. Our appreciation to all our families and friends, new and old, who have shared our grief and happiness and encouraged us to keep hope alive. I don't think we could have come this far without you! Most of all, thank you to our Heavenly Father who watches over us every day. Hugs,
XOXO!
Update, June 2004: Hello everybodeeeee!
It's been a long time since I've sent everyone an update on how we are all doing. So sorry but we have all been so busy living! McKenna will be 22 months on Mother's Day...HAPPY
MOTHER'S DAY...and we are gearing up for another surgery on Tuesday the 11th. This one is going to be on her tongue to reduce the size of the tongue it's self and the tumor underneath. Some of the lymphangioma has grown into parts of her tongue. It's called microscopic cysts and the doctor (Dr. Marshall Smith @ PCMC...good guy) can't really separate that from her tongue tissue because it's so small. There are
some larger parts of the cysts under the tongue he will be able to remove, but he will have to be very careful again because of vessels, nerves and vital structures in the area. The surgery will cause A LOT of swelling from what I'm told, so we won't see immediate improvement on the size of her tongue. That may take up to the end of the summer before we see what she looks like without the large mass. It's also going to be a painful surgery, but Dr. Smith reassured us that he will make sure her pain is under control and send her home with medications that will help ease the pain from swelling. The tongue
itself will heal rather quickly...it's just the swelling involved with the lymph tissue that will take a while. She is just an amazing girl though and
surprises us with how well she manages with her surgeries. She is tougher than 99% of adults that I've seen!
And she always cries less than her mommy and daddy do after surgery...we always wish we could just go through it for her, but it's not meant to be that way. We all have so many lessons to learn on this earth and we each have to learn it in our own way.
McKenna is very vocal nowadays. She is babbling some, but mostly sounds like Dory from "Finding Nemo" when she is "speaking whale". TOO FUNNY! She signs quite a bit and has her own version of "sign language" too. She is definitely Italian and "speaks" with her hands. (A red-headed blue eyed Italian) She knows approximately 30-40 signs that she uses on a regular basis. Of course there are signs that she gives that nobody needs to "know" sign language to understand. She is such a happy little toddler and is so busy all the time. Her favorite pass time lately is to jump off the ottoman into daddy's arms...daddy really had to be on his toes lately!
 |
Randy is also doing well, continuing to go to school and living back at his grandpa's for a while. It really stresses him out seeing his little sister going into surgery with the pain she has to endure so we are
letting him just "take a break" for a while. He's still working at the DI mall (our slang for Valley Fair) and enjoying it...yeah, right...as much as any 17 year old loves going to school. I told him he might as well go into the medical field with everything he's learned from his sister and the multiple episodes he's had at the mall. He's found several drunks, cleaned up yack (vomit) and even found a guy that overdosed on rubbing alcohol. Crash course in real life! He wants to go to pharmacy tech school at the community college and then
pursue a degree in pharmacology. He has gone with me to work several times and really enjoys hearing the nursing stories...even at meal time. He doesn't mind needles either...he just last week gave himself a homemade eyebrow piercing. What a mother's JOY! NOT! It looks like he fell onto a light bright and two pieces stuck to his eyebrow. I must remember he is just "expressing" himself. Well as my trachy friend Michelle told me...it's my daughter who has the most radical piercings really! He, He!
Henry is also doing well. He got some really bad heartburn and reflux that can no longer be controlled with meds so soon he is having a nissen done...stomache surgery on June 21st. His unit is still in Iraq but we are hoping they will be home safe and sound in July. Please keep our military in your prayers.
I hope this letter finds everyone happy, healthy and together as families this mother's day. I want to thank all of you again for your love and support to our family. We could have never made it this far without you all. We love you!
Update October 2004: New Look, New Pictures
Janet, Henry, Randy & McKenna Sartori
