 |
 |
 |
|
|||||||
| Pediatric Tracheostomies For parents and caregivers of children with tracheostomies. Please limit discussion to seeking and sharing of information pertaining to tracheostomy care, medical issues, special needs, disabilities, networking and moral support. |
 |
|
|
Thread Tools | Display Modes |
|
#1
01-03-2011, 02:57 PM
|
||||
|
||||
Update on Ryan!
Hi everyone, its been a long time, almost 2 1/2 months, sicne I last posted. We came back to the hospital in October for severe diarrhea and hypoglycemia (hes a diabetic). After some more testing and a genetic test, he's been diagnosed with IPEX syndrome. Its a very rare autoimmune disorder in which his immune system will attack various organs. So we are getting ready for a bone marrow transplant, its really our only option, this disorder is often fatal if you don't have a BMT.
Ryan is also vented 24/7, due to hypotonia, which is seen in IPEX patients, just not as severe as Ryan's hypotonia. This is the first time Children's Hospital is transplanting a patient that is vent dependent! So he's being transplanted in the ICU and not the "transplant floor" because of the vent. Our little man likes to break all the rules and be the first for everything! We are looking at another 2-3 months in the hospital...he's already 8 months old and he's only been home for 2 months! We are hopeful that the BMT will give Ryan a properly working immune system. But he will still have hypotonia, so he will still be vented. He will also still have diabetes, since that damage is irreversible. But he will be able to come off the steriods and immunosuppressants he needs now, which is the ultimate goal. I have missed this website...its been too long, things were pretty crazy there for awhile. Anyone else out there have experience with BMTs? Thanks for your continuing support, Stephanie
__________________
 Stephanie ~ Mom to Ryan born 4/26/10, 39 weeks. First vented baby at Childrens Hospital Boston to get bone marrow transplant - 1/14/11! Diagnosed with IPEX syndrome, which results in insulin depedent diabetes. Also diagnosed with Glycogen Storage Disease, Type 7, which results in hypotonia. Vent dependent, g-tube.
|
|
#2
01-03-2011, 11:14 PM
|
||||
|
||||
|
Sending many prayers to you and your beautiful baby boy!! Please keep us updated!!
__________________
 http://mamazgirlz.blogspot.com/ Gretch mom to, Heather(22), Aimee(19), and Celia(14) Dandy-Walker syndrome,cleft palate(repaired at 9 yo!),t-tubes,asd, left pulminary arterial stenosis,trach,aspiration,reflux,fundo,g-tube,npo,dysphagia,kidney defect,neurogenic bladder & bowel,spina bifida,scoliosis,seizures,hip dysplasia, sensory issues, ADHD,vasomotor rhinitis,autistic like behaviors, hearing aides.
|
|
#3
01-03-2011, 11:22 PM
|
||||
|
||||
|
Welcome Back! Sending thoughts and prayers!
Kris
__________________
Kris 3/24-26wk twin girls born 7/01 at 1lb15 & 1lb13. Rynn-trach. malacia, Grade 1 SGS, reflux, asthma, autism(high funct. Asperger's) & epilepsy. Madelyn-severe trach. malacia, Grade 3 SGS(Trached 10/21/01 to 11/20/11 DECANNED) ,PVL,BPD,CP,submucousal cleft,reflux, G-button(12/01), nissen X2, off vent '03.Two of the most Perfect Princesses!  !!
|
|
#4
01-04-2011, 03:55 AM
|
||||
|
||||
|
Welcome back, it sounds like it's been a nightmare, remember to lean on us for support. Hope the BMT does the trick for him xxx
__________________
  Sam Feb 11 2003 Opitz G/BBB syndrome, mickey, nissen, autistic,supraventricular tachycardia, bronchiolitis obliterans. decanned May 30 2009. 2 brothers Jonathan (23) James (14). I am first and foremost a child
|
|
#5
01-04-2011, 10:04 AM
|
||||
|
||||
|
Welcome back! Sounds like you have more ahead, but he's a cutie! Keep us posted!!
__________________
Melisande H. Mother to The Preeminent Grand Poohba Donovan (5/27/03), still some "resolving" apnea, on the autism spectrum and some cerebellar malformations. Trached since he was 6 weeks old. Recently DECANNULATED 4/16/09!! Big brother to Conrad! 
|
|
#6
01-04-2011, 06:06 PM
|
|||
|
|||
|
It's good to hear from you again and to see that you have more information on Ryan's condition (a diagnosis). I hope you are gaining strength from family and friends during this time. I remember how good it was to get Owen's diagnosis but also how hard it was to finally know. Ryan is a strong little boy!
Hopefully the BMT will be a help! Let me know if there is anything I can do! I know prayers are so helpful- you have many praying for Ryan and your family. Talking is also good! I remember that I would tell myself "And this too shall pass" when things seem to be much harder for me. Remember- and this too shall pass- when you feel your strength sinking. You are a wonderful mother to Ryan! Keep us posted!
__________________
 Maren- mom to Owen born 7/17/10: Born with Pierre Robin Sequence, 5-Q Deletion, significant hypotonia, trach 7/26/10, g-tube and nissen fondo 8/6 (fondo failed),vent patient. Making improvements daily! Also mom to Emma- big sister to Owen. Great helper and adores her little brother!  Number 3 arrived and is a great addition. Will soon be big sister to Owen but that is ok!
|
|
«
Previous Thread
|
Next Thread
»
| Thread Tools | |
| Display Modes | |
Linear Mode
|
|
All times are GMT -5. The time now is 04:06 AM.