Jadyn had Mitochondrial Complex One and Three. She was diagnosed with Acid Reflux, Epilepsy and Cortical Visual Impairment ( CVI). She had low tone and could not walk nor did she talk. But she was very expressive with her eyes and her smile. She was a trooper for all she went through and never complained. For two and a half years she had many stays in the PICU. Usually it was due to respiratory distress. She developed a lot of friends on the PICU floor that were nurses, Dr's and Respiratory Therapist.
This is Jadyn's Story.
Jadyn was born June 7th 2005 via C-section due to being breech. Her apgar scores were normal. There was nothing to be concerened about at her birth. She had some trouble with breastfeeding and latching on. We worked on this for a few weeks and ended up switching to a bottle. The only noticable difference was she slept a lot and didn't seem to be as alert as the other babies around her. Being that this was our first child we didn't see this as alarming. We just thought it was the way she was.
At her two month check up we took her to her pediatrician, Dr. Stifler. We told him that she made noises in her chest that sounded junky after she was fed. We ended up feeding her in his office so he could hear the noise. Once he heard it himself he referred us to Dr.Lahiri, a Pediatric Pulmonary Doctor. After meeting Jadyn Dr.Lahiri thought she should have a barium swallow study and a bronchoscope done.A week later she went in to have that done. She had to be sedated to have the brocoscope test done and awake for the barium swallow. Its always scary when she has to be sedated, You hope with her having low tone and be sedated that it doesn't affect her too much. The barium swallow study would be done awake.It was determined that she had acid reflux and was aspirating her food. We put her on thickened formula and saw a difference right away.
Around three months of age we asked Dr. Stifler why she could not track things and why she could not hold her head up. He referred us to Dr.Kalsner,a pediatric neurologist and to Family Infant Toddler who would provide us with a eye team.In the mean time we would also see a pediatric ophthalmologist, Molly Hastings.
In October 5, 2005 we noticed that Jadyn was taking deep breaths and looked like she was in distress. We brought her to the hospital where she spent the night in the PICU and another night on Baird 5 which is the Children's Speciality Center. She went home with a nebulizer. Within a day at home she was great again!!
We saw Kristen from Family Infant Toddler in November and talked about the services Jadyn needed. We knew she needed the eye team and Physical Therapy. We would start the Physical Therapy in December. She was also going to the hospital for regular blood work to find out what could be the cause of her problems. We also met with a Genetic Counsler but found nothing to be helpful since we had no anwsers from any of Jadyn's testings.
She would see the feeding team regularly making sure she wasn't aspirating her food again.We did notice that she still was aspirating but not much. We would play around with different nipples and putting different size holes in the nipples to make it easier but not so she could get too much out and then aspirate.
On November 28th Jadyn was brought to the ER for respiratory distress.She spent four nights in the PICU while she was intibated for three of those nights. While she was there they preformed a MRI and a EEG. On December 2 she was moved to Baird 5 where she would have a couple x-rays of her stomach. Due to the intabation her belly would fill up with air and get very distended. We got to take her home on December 6th. Before we left she got her first RSV shot. One out of six for the year to protect her from the virus.
On January 2 2006 we drove to Boston Children's to met Dr.Anslem, a neurologist specialist who works along side with Dr. Kalsnar from home.She talked with us about a Mitochondrial Disorder. After may blood test coming back negative from all sorts of disorders they thought this one could be what Jadyn had. She would need a muscle biopsy to tell for sure as it is a very hard disorder to diagnose.
In February we were provided with a nutritionist named Lauren who would help us make sure Jadyn was putting on appropriate weight and staying healthy.She would come to the house once or twice a month.
In March, Sharon from the Association for the Blind and Visually Impaired started coming to the house to help us work on Jadyn's vision. It was found that she had Cortical Visual Impairment. She could see but not clearly. It would be best for her to start with one color (red) and keep things simple for her to look at. She was about a 1-2 on the scale for vision. But we noticed that as soon as we put shiny red mylar in front of her she would lock onto it. It was truly amazing. We went nuts buying anything and everything that was red and shiny.
On March 3rd she had another MRI and spinal, along with MORE blood work. There was no change in the MRI since the first one in December.
For fun we would take Jadyn to her Grandpa and MiMi's house to swim. They have a therapy pool in their home so it was nice to get Jadyn to move in the water. She always loved to swim and play in the warm water. It was a different sensation for her.
On April 14th she had another swallow study done. The results where the same.
On April 24th we drove back to Boston to have her Muscle Biopsy done. It would require her to have numerous test done the day before the procedure. It would also require sedation.Everything went well and we went home much later than expected that day. We think the Doctors were nervous to let her go since she was so out of it from the sedation. Now we only had to wait 3-4 months for the results.
The next few months we were kept very busy with all our appointments with PT, Vision, Nutritionist, and the Doctors. But she did get baptized and had her FIRST birthday!!!!! It was a nice party...she didn't seem to impressed by it. She never did like a lot of people around. She would shut off. Maybe when we would be down to a few couples she would perk back up, never a guarantee. We also spent a lot of time swimming!!
We met with Diane Bugbee our Social Working and she was helping us to get Personal Care hours for my mom to watch Jadyn and get paid. That would be helpful even though I took a huge loss at my job as a hairdresser and would change my hours and salons through all of this. Unfortunately I lost clients in the process that I had for 12 years or less. That is when"Family First" comes in!Thankful so much to the clients/friends that stuck with me!!!
We would figure it all out. Luckily my husband worked for a family business his parents owned so that gave him some flexibility.
July, we ordered a "special stroller" so Jadyn could be seated more upright and fit her needs better. That was hard. The "first" piece of equipment for her. It seemed like it would just make her stand out more and if I could only use the Graco stroller she had when she was younger it would blend her disability in and no one would notice. I was always so concerned about how people would treat her or what they would say. I have to admit, I heard nor saw anything bad. People would come up to her all the time and say how beautiful she was.
Marie M from the eye team and future GREAT friend to Jadyn and us raised Jadyn on the vision scale from a 1-2 to a 3-4!! Very Very exciting!! It seemed things were going well. We hadn't been in the hospital for awhile and things were looking up!! Jadyn was also using the color yellow as well visually. We also noticed her staring at our faces and smiling too!! The only thing we can say is she smiled/laughed alot!!It was one of the things that kept us going.
In August 2006, Jadyn had another swallow study done and this one showed PROGRESS!! She didn't aspirate at all!! She could even have thinner liquids!! We didn't dare give her water but thickened liquids was great!! It gave so much more of a range for food and drinks!! The only bad part of August was that we got the results back from her biopsy and her muscle was frozen and sent to Atlanta where it would have been tested but due to being frozen the muscle got ruined and we needed to do the test again!! How frustrating!! We decided we would just fly to Atlanta and have the test done fresh instead of frozen, we certainly didn't want to risk this happening again.
The beginning of September 2006, started with what we thought was Jadyn having seizures. not sure of this we called her neurologist and she set up time for us to come in. Three days later she was diagnosed with Epilepsy after having a 24 hour EEG. One week later we are bringing Jadyn to the ER for respertory distress.She was intibated in the ER and was brought to the PICU where over the next day or two she would have a MRI, EEG and a Bronchoscope done.When they stopped giving her medication and let her wake up they tried to give her seizure med to her and less than 15 min later she needed oxygen. They looked into her medication and it had no history of doing this to anyone before. But it didn't work for her...A week later we went back to the hospital to spend the night to try a different medication for her seizures. We wanted to be there incase she had another reaction. Things went fine and went home the next day. My mother-in-law who had been a nurse would come over everyday for a couple months at 9:00am to give Jadyn a shot of her seizure med. There was no way Jason or myself could have done that. For all we could do for her giving her a shot was the only thing neither one of us could do.
Her medical supply store also brought over a Oxygen monitor incase we needed to check Jadyn's breathing.It would eliminate second guessing.
In October 2006, Jason and I attended a CPR course in the event that we needed to save Jadyn from choking. Hopefully we would never need to know this but its always helpful.
November 2006 was busy as well. Jadyn got fit for a stander. That was exciting, unlike my feeling when she got her stroller the stander was so much fun. To see her being able to stand up!! She looked so big!! You could push her all around the house and dance...she loved it!!
I also got the name of a women who lives 20 min or so from the house who is a "healer". I was willing to try anything!! Well we did that four times and nothing changed...she wanted us to take Jadyn to Canada to another healer but winter was approaching and I could not think of taking Jadyn there in the bad weather with colds and such....But November was also full of appointments at the house with her team. Almost daily, Same with December.
January 2007 came in crazy!! She had a Echo test done on the 3rd, RSV shot on the 5th and on a plane to Atlanta for her second muscle biopsy on the 10th. We met with Dr. John Shoffner from Horizon Molecular. He is one AMAZING man. Dedicates all his time for Mitochondrial Disease!! Very honest and open with us. Of course I cried through the meeting while my husband asked the questions. Jadyn did a great job with the procedure. She was all smiles as soon as we got back to the hotel. Such a trooper!!
February was mostly appointments and the seizures starting back up. But we just kept playing with her medication which is never fun.
March took us for a surprise. Jadyn started choking a lot. She would turn purple and you would have to breath in her mouth to clear her airways. That set in a deep panic and we would hit her back and blow as hard as we could. We were so lucky we cleared it everytime. Sometimes it took more blowing than others. We got a suction machine to suck out her extra secretions. She had another EEG and lots of appointments. Come the end of the month we had to back off on her seizure meds some because she was becoming to droney.
April brought another episode of having to rush her to Dr Stifler's office where they told us to bring her to the ER for respitory distress.She was intabated over night and spent two night in PICU. When they brought her to Baird 5 her stomach was HUGE!! She was not herself at all.They worked on moving the air through her system and FINALLY got it down some. We got her results from Atlanta and is was confirmed that she had Mitochondrial Complex one and three. What that meant we had to do we had no idea. Just more meds....
May was just busy with the same kind of appointments with her PT, OT, Nutrionist,Speech, Vision, Eye, and Dr's.
June-She is TWO!!!! I gave her her first haircut (she was not impressed) and we took her out for lunch. She had a vanilli milkshake and LOVED IT!!!! We had a party the following weekend. Like the year before, she wasn't impressed!! We ordered her a special bath chair that would make bathing much easier for her and I. We even ordered it in yellow!!
July we did something fun...we took her horseback riding two times. Unsure if it would be good for her we stopped and thought we would wait and take her to a place that works with children like Jadyn. They couldn't get her in til fall and that of course did not appeal to me so we said we would wait til spring.But July also had more choking episodes. Very Scary!! She also had a very bad 45 min seizure that ended her in the ER. She spent the night in Baird 5 and came home the next day.
August-We met with Dr.Stifler who talked with us about Jadyn and what we could do for her.VNA came to the house to help us with her choking episodes. She had another bad seizure where we called 911 and had her brought to the ER by Ambulance.The next day we had another EEG.
September was busy...Things felt like they were out of control by now. We had such a crazy summer and just seemed like we were not going to get a break. On the 17th we called Dr.Stifler and he came over to check on Jadyn and just told us to keep an eye on her. She was breathing okay but she had a fever and didn't look right. So all day we watched her closely. Dr. Lahiri who lives down the road from us came over after work to look at her and see how she was doing. Five minutes after being here she took a turn and we had to call 911.She went into respertory distress and went to the ER.She didn't have to be intibated till about 2:00am in the PICU.When I got to go back to her room, 2hrs later they told me they have a very hard time intibating her and that in the future they weren't sure if they would be able to do it again. We needed to sit down with her Dr's and make a plan. All I could do was cry...how could that be? She would be okay...she always was!!!She is only two!! How could it be so serious at such a young age. A few hours later I called my husband and told him the news, didn't see why he should lose any sleep since I knew after tonight he would. He was on his way and we talked with some of the Dr's and set up a time later that day for everyone to meet. Our mom's came for this as did all the Dr's and staff associated with Jadyn. They informed us that if she needed to be intibated again and if they could not do it due to scare tissue in her airway we would have to decide if we would want a trac. If we did decide that there was only about a 50% chance she would make it. If she did make it she would never come off it and she would require 24 nursing care. We had no idea how to make a descion. How does any parent? We just prayed and prayed, prayed for more time with her. They sent in a employee who deals with "end of life" and wanted to talk. We probably weren't very nice to him but we just needed to deal on our own before we went there with a stranger.They were pretty certain Jadyn would not make it home this time. My husband and I met with Dr. Lahiri and Dr. Kalsner to talk with them since we worked so closely with them while we are there. It helped us see things differently, but not any easier. They did another bronchoscope and were surprised that things didn't look as bad as they thought. They ended up taking the tubes our successfully! We went home two days later!
We still had our daughter!!!!! YYEEAAHH!!! She tricked them!! We had her for seven weeks, seven more weeks of fun and playing and kissing and hugging.God heard us!!
But the parents intuition kicked in and on November 19th she was brought back to the ER due to high blood pressure and a fever. They could not figure out why we were there if not for respertory distress. We just knew there was something wrong and didn't want to be at home if she was to take a turn for the worse. Plus we thought if she suddenly went into respertory distress they could help her faster before she would need intibation. They hooked her up to a IV and gave her fluids. Later, due to my un sureness we spent the night in the PICU. Lucky for us our favorite nurse Michelle was there. But as soon as I walked into the room I stated how I did not like the room. Why? It looked liked all the other rooms we had been in. Little did we know then...
Jadyn had a bad seizure that night...I just could not believe how this could be happening. Her respertory was fine though! It was just her heart rate and fever!!! The next day they said she could go home if she woke up enough to eat, but due to her fever she was so tired. We noticed her belly was starting to get big again. But this time she wasn't intibated....Over the next few days she didn't change at all. She wasn't waking up enough to eat and her belly kept getting bigger and bigger. They were trying to move things along but nothing was working for her. She would have x-rays every day but no improvment. The day after Thanksgiving they all came in to tell us there was nothing more they could do for her belly. They felt that her body was shutting down and that it was only a matter of time. That was one of the hardest days our lives...how could they not fix this? They always did...It was time to realize things were out of their hands. They cared about Jadyn too!! They got to know her so well after two years of being sick. Three days later she took a turn for the worse and was not doing well at all. We called the priest and he came and blessed her. We had her room full of family and friends throughout the day. Of course Dr.Stifler was there everyday like usual...Marie Macloud on her team/friend was there too. Jadyn had her family and friends stopping by everyday all the time. Our friends were taking good care of us with food, drinks and massages.But on Tuesday November 27th 2007 Jadyn passed away with us by her side on her bed with the room filled with family and friends. We had lullabies playing in the background while we told her over and over how much she is loved and how special she is.
We were very lucky that night to have our little girl look so peaceful, unlike so many times when she had tubes in her. To not have her problem be respertory proved to us there was more wrong with our little girl than we realized.
Her spirit lives on. She is a special little girl that had a huge impact on so many lives. She touched so many people without ever saying a word. Because of her we have met so many wonderful people that we wouldn't know other wise. She gave us so many friendships and still does.
She is a true angel.
As my good friend Nan said "Your daughter was too good for this world".
We miss her a little, a little more often, a little more everyday....