Mike L Jezdimir Transverse Myelitis Foundation - This foundation is to help raise money and awareness for Transverse Myelitis for Spinal cord research at U.A.B.

Little Laylah's Story

Laylah and Malachi were born on March 11th 2012 at 36.5 weeks of gestation. They were born healthy at (Laylah 6.4 lbs. and Malachi 5.4 lbs.) they were healthy for the most part with the exception of the occasional cold etc. I took them in for their 6 month check up to include their vaccinations on September 10th 2012. He did well, but within a couple of days she stopped eating again.
On September 19th I went to work as usual around noon. The twins were fine and she was happy as usual. Around 6 pm I was called into the office because I had a call. The clerk told me it was a man. I started to panic because I told my husband to only call in the event of a medical emergency. When I went to answer the phone there was nobody on the other line. I freaked out and kept trying to call my husband back but no answer!!!!! Finally he answered. He was crying. All I kept hearing is Laylah and hospital and something about calling 911. I freaked out. I ran to my manager and told her I was leaving because they’re rushing my baby to the hospital. I literally ran through the dining facility I worked at. I jumped into the car and called my husband...he was unable to speak...he handed the phone to a paramedic....I was going about 60 in a 40 zone but didn’t care. I was at home within just a few minutes. When I pulled into the apt complex I saw a ladder truck, an ambulance, another fire truck and several police cars. I ran upstairs and started yelling" what’s going on" I seen my baby girl lay in the sitters arm and my husband crying. I couldn’t even pick up my own daughter!!!! I was terrified, (I’m sorry Mike but as I am typing this I am tearing up, it was a nightmare!!!!!!!!)
They told me which hospital they were taking her to and James and I jumped into the car and rushed to the hospital where we had to wait on the ambulance. They finally arrived. They started to run tests saying something about a twisted stomach and whatever else they could come up with. Well after calling the pediatrician and long deliberations they finally decided they needed to ship her to Oklahoma City 90 miles away from home because there was nothing else they could do. We finally arrived in Oklahoma City at Oklahoma University Children’s. They ran every x-ray, ultrasound, and lab possible. They did not however do an MRI...they accused me of giving her honey saying they think its infant botulism. During the 6 hours in the ER they attempted to place a catheter because her belly was huge and diaper dry but the dumb nurse could place it. She called someone else in and said" it’s like I’m hitting a wall" so the other nurse attempted it and she succeeded immediately. They got a huge amount of urine out. The nurse finally looked at the other nurse (which by the way was very unprofessional and extremely snappy and rude) and told her" the reason you didn’t get any results is because you placed the catheter into her vagina instead of her bladder." I almost jumped up and punched her. WTF? Excuse my French.  But number one: how do you not know where to place the damn catheter and secondly: the second nurse should have NEVER said this to the first nurse in front of a family member. Well needless to say I reported the incident. We were finally sent upstairs to ICU. She kept having labs drawn and due to the fact they suspected infant botulism (which I really wish it was because she would have fully recovered by now) well, they sent a report to the CDC in California and they ordered a dose of “BABYBIG" which is an antitoxin for botulism. It took 2 days to receive it. In the mean time they kept running tests which one of them showed her hemoglobin going down. They did a couple of more tests and determined she needed a unit of blood. Well, she received it. (I forgot, in order to test for botulism they needed a stool sample) she wouldn’t have a bowel movement for days. After she received her unit of blood I checked on her and noticed she had finally had a bowel movement. So I called the nurse. We were excited to be able to finally send of for the test. Well...when we opened the diaper it looked like someone took the whole bag of blood and just dumped it into the diaper. Yet another horrific sight; She pooped blood for days and they determined it was most likely caused by a rectal tear...after a few days the bleeding finally stopped. The tests continued. She was seen by teams of neurologists, infectious diseases, neurosurgery and many more on a daily basis. Neurologist finally decided to run a MRI. A couple of hours later they came back...her neurologist (we love her!) came in looking sad; she said they seen a mass on her spine; we broke down.  The first few days I was with her by myself until my hubby was able to come down) they said they sent some of her blood to check for cancer. We were terrified!! It seemed to take forever before the results came back. We just kept praying. Then the neurologist came in telling us she has some good news. NO CANCEROUS CELLS WERE FOUND!! But yet...what is this thing we are dealing with? Well we finally got an idea. It was either Guillain-Barre Syndrome or Transverse Myelitis. We said it is a what? So they explained it to us. We were horrified. We were told the same prognosis as everyone else. We cried and cried.
Sometime in the 3 weeks at Oklahoma University I was at Laylah’s bedside while James was taking a shower. I was watching my precious baby girl...suddenly her left arm moved...I jumped up and ran to the bathroom and told James...he said give him one sec. I grabbed my phone and started to record it. She was smiling every time she managed to raise that tiny arm of hers. I started to praise God while I was weeping. Laylah just kept smiling. Of course by the time daddy and her neurologist came in she stopped. I showed her neurologist the video. Dr. Purcarin jumped up and down, clapping her hands for joy. Then we were told we won’t be able to take Laylah home in the condition she is in. So they told us about Dr. Wright who is a pediatric rehab doctor in Bethany at the children’s center. We were told someone would come assess her and decide whether or not she would be approved to go to the pediatric medical rehab unit. Madison came to see her and then the next day Dr. Wright came by. She was approved for admission. Laylah was transferred not long after that. She went to the PMRU at the children’s center where she underwent some PT, OT and many more types of therapy. They started to notice difficulties with her feedings as well as pronounced belly breathing. We were called in to the conference room to consult with Dr. Wright again. He started to talk about aspiration pneumonia and feeding issues. I blurted out" so you’re telling me my baby needs a feeding tube?" he was shocked by my knowledge. We said we would consider it but will not give up on Laylah quite yet. Then the next emotional attack; there wasn’t really anything they could do for her at the PMRU so they recommended moving her to the long-term part of the hospital, (That killed us because we have not left her side the whole 2 months, moving her to the long-term side would mean we would have to leave in her the care of strangers, plus all I could think of was NURSINGHOME!!!!! MY BABY IS GOING TO A NURSING HOME???? She was only about 7 months old!!!!!!!! I was heartbroken!!!!!!!

My baby girl has been at the children’s center since October of 2012 and it was the worst time of my life, having to leave my baby behind! I cried every time I left the hospital for the longest time. Since then she has been readmitted to Oklahoma University for feeding tube placement (we tried so hard to get her to eat but her bottles became fewer and fewer, so a feeding tube was the only option), then the flu season came. Laylah got sick. She went into respiratory distress. That one night we were awoken by her twin brother screaming uncontrollably...we tried everything and he would not calm down...we looked at each other and I said I need to call the hospital...no answer...after several more tries they called us telling us she was being bagged. She wasn’t able to breathe. I called again a little later to get info and they gave me the number to our ER. I called and they told me she was intubated. I almost died, I rushed to Oklahoma City. Seeing my baby completely drugged and hooked up to a machine that’s breathing to her was terrible to say the least. Since then she had to be admitted 2 more time for respiratory distress and placed on a vent which each time they would have to give thrashing her head causing the tube to come out. The first time they told us that due to her paralysis we should consider a tracheotomy. We didn’t like that idea and neither did Laylah. She managed to come off the vent the first 2 times like a champ. Well she just got readmitted in Jan. for another episode of repertory distress due to a cold (we were told from the beginning due to her lesion from c3 to t6 and her paralysis from her chin down and her weakness in her diaphragm a cold could kill her) well, in Jan. she went to ICU and doing okay. They basically sent her because of her track record and just to be safe. Well one day I was on the phone with the nurse practitioner when she yelled, omg she is blue. WE ARE GOING TO INTUBATE! I just shook my head and looked at my husband...we knew what we had to do. I drove to Oklahoma City and went to ICU requesting to speak with the doctor on call! when she came in I told her" ok, we cannot stand looking at our baby girl being intubated and placed on narcs to keep her calm enough to stop her from thrashing her head self-intubating (which never worked) so we agree to tracheotomy placement. We asked for tracheotomy placement to be done ASAP! She went into surgery and when they wheeled her down the ICU floor post op I started to cry. It was a horrible sight. She is doing so much better with the tracheotomy though. I now regret not having done it for her sooner. The surgeon told us she won’t be able to talk or eat. Well...I told her she doesn’t know my daughter. Laylah is able to sometimes speak over the vent. And she has been taking a few bites, HAH! In short, TM affected Laylah from c3 to t6...it left her paralyzed from her chin down. She is now able to move her legs, her shoulders and she seems to have some sensation in her arms. She is very spastic in her elbows and still hypotonic in her hands and fingers. She lost all sounds when she spoke, laughed, cried and she stopped yawning. I thought that was strange especially since she was able to speak. She did regain her cries (until she received her tracheotomy) but every once in a while you can hear a cry through the tracheotomy. She now relies on a machine to breathe for her and a machine to feed her. She is completely dependent on people to care for her. I hate this monster called TM soooo very much. Because of the government making us parents immunize our children my daughter has lain in a hospital bed for the past 20 months!!!!!!! She is unable to reach for and hold her much beloved animals; she has lost her childhood because of some stupid shots!!!!! Since 6 months of age my daughter has known nothing but nurses, doctors, therapists, needles, and tests. She hates respiratory therapy so much she cries when they enter her bed space!!!!! She needs help with every little thing we healthy people often take for granted. In Nov. last year (right around my birthday) I watched the ICU staff having to do CPR on my baby because she needed to be suctioned. She now has orders stating she cannot be deep suctioned because it causes Bradycardia. Also she has to be turned a certain way because she now has brittle bones due to the inability to move and bare weight. She receives infusions every 3 months to help strengthen her bones and in June she has an appointment in Tulsa for more Botox injections (kind of ironic considering the first hospital thought she had botulism) to help relieve the spasticity in her elbows.

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