Tyler James Matthew
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Our son, Tyler James Matthew, was born to us on August 2, 2004. He was one week late and was an induced delivery that ended in an emergency c-section. The moment they placed him on my chest, I knew he wasn't breathing deep breaths. He seemed to be struggling...as though he were drowning. They suctioned and suctioned with no relief. For the next 2.5 weeks we spent time in our birth hospitals NICU. The entire time the doctors/nurses tried to diagnose him...forgetting to 'treat' his presenting problem. His breathing. For 17 days he underwent test after test while struggling to breath. They kept calling it 'stridor' and continued to test for neurological problems, syndromes, etc. Everything kept coming back fine.
FINALLY we were transferred to Johns Hopkins Medical Hospital where Tyler received IMMEDIATE care for his airway. He underwent a bronchoscope that discovered that Tyler had laryngomalcia (floppy airway). He could breath on his own without apnea episodes. A trach was mentioned to us but because the ENT broke through webbing on the way down with his scope, he wanted to give Tyler a shot at breathing on his own. With the hopes that the webbing was the problem. No luck...Tyler ended up having a tracheostomy on his 3 week birthday. What a blessing...our child could BREATH!!
Tyler has many other issues than just his airway. He has a
central line, a gtube for continuous feedings, and has undergone a t-cell infusion from an unrelated matched donor. For Tyler was born without
functioning tcells.
This journey is a LONG one. Everything listed on this webpage about what families go through when they deliver children with 'troubles' has happened to us. It is an extremely tormenting time. Each day is a victory and sometimes a struggle. His prognosis is a promising one. We just have a lot of hurdles to jump along the way. His diagnosis is still a mystery......they refer to him as a CHARGE/DiGeorge Syndrome-like baby.
This website was a blessing for me before Tyler had his trach surgery. I read each and every story. It was the scariest time in my life. I love that the trach helps my son breath...I look forward to the day when he can breath on his own. I look forward to hearing his voice, his cry. He could have the trach anywhere from 6 months to 2 years.
For anyone who is new to this experience, PLEASE KNOW, that you are not alone. Your feelings are NORMAL!!! We are all here to help you through it.
I think what made me the most upset was not knowing the aftermath of the trach.....the constant care, nursing, not being able to make trips in the car without someone in the back seat. Having everyone around me deliver healthy babies was hard as well, still hard sometimes.
Thank you for letting me share our story. Tyler is truly a miracle baby.
He is our Silent Soldier.
Update - June 20, 2004: Tyler is now 10.5
months old. Since my last update we've been very busy. Tyler's immune system is
finally up to par. His tcell count is the same as yours or mine. He has even
been diagnosed with the CHARGE syndrome. Neither my husband nor I carry the
gene, so future kids aren't out of the question, though actually being brave
enough is our hold up right now. We have treated and survived the whooping
cough, extreme trouble digesting formula, various bouts of dehydration, various
bouts of graft versus host disease, swollen lymph nodes, urinary tract
infections...I'm having trouble thinking of anything else. We seem to be
troubleshooting something all of the time.
Procedures: circumcision, upper and lower GI scope, ear eval under
anestesia, tongue frenulectomy, bronchoscopy, laser suproglottoplasty, Mediport
insertion, and orthopeadic surgery on his right foot to correct a vertical talus
(the opposite of a club foot).
Ongoing issues: choanal atresia, acid reflux (which we had the Nissen to
repair, but it didn't seem to work), urinary reflux, abbarant subclavian artery
that we have to keep an eye on, tight muscles that we have to work out, eczema,
and feeding tube. Looking forward to working with giving him real food, but he's
not ready yet.
It has been confirmed that Tyler has profound hearing loss in both ears. We have
been fitted for hearing aids, which we will wear for 3 months prior to receiving
his cochlear implant.
Our ENT has approved us for the Passy-muir Valve. We've been working with this
for the past month and have been having very minimal success. He fights it so
badly. Doesn't realize that he can breath out of his mouth, and struggles to
breath out of one nostril (because the other is closed, won't be fixed until
he's two or older). Any suggestions on how to work with this would be greatly
appreciated. It's painful to watch. His sats stay up, but he HATES it. He now
wears a 3.5 Pediatric trach (was a 3.5 NEO Shiley). They say he has to do well
with the valve before he can be fully plugged and be able to have his sleep
study. His vocal cords ARE working, so that was a blessing. LOOONG JOURNEY.....
We see various specialists on a semi regular basis. Visits to the hospital are
one to two times per week. We see Oncology, Neurology, Swallowing experts, ENT,
GI docs, Pulmonary, PT/OT, Genetics, Orthopedics, Hearing Specialists,
Urology....future appts will be with Cardiology, and Opthalmology.
Tyler's fine motor skills are wonderful, he is sitting up, doesn't care for
belly time AT ALL, and has a way to go with many other gross motor skills.
He is very interactive, smiles ALOT, and is overall a happy boy. He definitely
knows us as his mom and dad and we even think he likes us :). He is such a good
boy. And cute too. We love him so much.....and would/will do anything for him.
Thank you again for allowing us to share 'our story'. We continue on this roller
coaster ride. Getting used to the ups and downs. Taking life day to day seems to
work best for us at the moment. I hope to post again soon. We have much to look
forward to......
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Update October 2006: Tyler passed away on Jan 24, 2006 due to complications from a progressive and untreatable lung disease.
With love,
Kristen and Jason Matthew
Baltimore, Maryland
