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Jesse’s Story

Happy Mail can be sent to:

Jesse Green
517 Morelock Schoolhouse Road
Westminster, MD 21158


 Jesse is a special gift sent to us from The Lord at 16 months old. To learn more about Jesse you can Read My Story.

Jesse is a very precious little boy, that we adopted at 16 months old and became his forever family. He was born on 5/4/1999 and is now 14 years old. We also have five older biological children(ages 30, 27 and 23 yo triplets) and two other, younger adopted children(ages 11 and 8 that are also disabled, one with Autism and one with FAS). Jesse has severe Fetal Alcohol Syndrome(FAS) and Fetal Dilantin Syndrome, that has caused him multiple defects and health problems including a cleft palate, tethered spinal cord, spina bifida occulta, congenital heart defects, congenital hip dysplagia, mental retardation and bladder atrophy. Almost every system has been affected. Jesse also has Autism, mild CP, epilepsy, is G-tube fed, has chronic lung disease and is on oxygen at night. His daily treatments include many meds, the Vest, cough assist and nebs. He has had many surgeries to correct his right leg, both hips ,spine, heart, g-tube/nissen, bilateral hernia repairs, pyloric stenosis and port placement just to name a few. At the end of August '07 Jesse got sick with double pneumonia and was admitted at Johns Hopkins Hospital. He very quickly turned for the worse on Labor Day and went into cardiac arrest 3 different times. Jesse was diagnosed with Adenovirus and had developed ARDS (Acute Respiratory Distress Syndrome). The Dr came in to tell us that they did not think Jesse was going to make it through the afternoon and that we needed to get our family in to see him. They resuscitated(hand bagged) him, for about 6 hours and then finally they were able to put him on an oscillator ventilator with Nitric Oxide and by the many prayers lifted up to our Lord and Saviour Jesus Christ, and the wonderful staff in the Johns Hopkins PICU, we still have our precious little man and he is the love of our lives. Since then, he has been very in and out of the hospital with lung problems, spending many weeks, even months at a time.

*update-8/09*Jesse has spent 40 weeks inpatient for lung infections since August '07. He also needed a nissen done to try and protect his lungs from refluxing/aspirating. Please pray that he stays healthy through this upcoming flu/viral season.

*update- 01/10*Jesse's, recent CT of his lungs, now shows that he has mosaic perfusion, with probable Bronchiolitis Obliterans, along with worsening of his underlying Chronic Lung Disease. He is now steroid dependant due to adrenal insufficiency, which has caused him to have new problems with increased blood sugar levels and has been diagnosed with hyperglycemia.

*update-06/11*For the most part Jesse has had a remarkable winter only spending 2 times inpatient, both for respirtory problems. He has had more of a struggle with his intestines than anything this year starting back at his first admission of the year in 10/10 after being on a course of IV antibiotics so that has been the most recent challenge.

*update-7/12*Jesse had his 6th or 7th tetherd spinal cord surgery and was in the hospital from April 30th to June 21st after getting very sick with his lungs from surgery and his gut not working and had to get a G/J tube placed. He is now dependant on IV TPN for nutrition until he can hopefully start J-tube feeds.

 *Update- 10/1/12*Jesse had a J-tube procedure, 2 days post op he devolped ARDS a second time from severe pnuemonia and now is on the vent fighting for his life.

*Update-12/5/12*Jesse is now home trached and totally vent dependent. Please pray for protection from all flus and virus's.

*Update-2/11/13*Jesse is now also totally TPN and lipid dependent via through his port along with being vent dependent. He has been spending as much time inpatient as he has being home since October 1st. Please continue to pray for healing for our sweet boy.

*Update-7/20/12* Jesse has been home and out of the hospital since the beginning of May except for his excitement with his Trach coming out two weeks ago and we couldn't get it in so it bought him a Medivac trip down to Hopkins from our local ER. Jesse has been getting home/hospital teaching for the month of July then he will be off until school resumes the last week of August. We are trying to get his Tobi Nebs approved so we can keep him out of the hospital so please pray we get them approved. Other then that Jesse has been doing well. He got his new braces and is walking with assistance short distances. This will make his lungs stronger. Thank you for your faithful prayers!!

Latest Journal Update

Prayers needed

Jesse's ENT follow up appt went pretty good. He scoped down jesses trach and saw that he was very dry with crusted secretions in his trach/trachea. We are to put several drops of saline down his trach every few hours for this. He also is getting red and some breakdown from under his chin from being chunky from the steroids and from drainage out under his trach so he ordered a cream to try first. If that doesn't work we are to try a pad around his trach and if that doesn't work they are going to switch his trach out to a flextend. Please pray for all these issues. Thank you for your love and prayers.
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Comments

5 Comments

Lynn Worley
By Lynn — last edited
Always keep your eyes on the Lord. Praying!
Psalms 27:13-14: I had fainted, unless I had believed to see the goodness of the LORD in the land of the living. Wait on the LORD: be of good courage, and he shall strengthen thine heart: wait, I say, on the LORD.
Valerie Maples
By Valerie Maples
Might want to try ties and pads from Leckie Medical. I think they send samples. They are WONDERFUL and designed by a dad who knew he could do better for his son. Doug LOVES his soft, padded ties and the lack of friction and sweat absorbency. Hugs and prayers from Mississippi!
Sangye Hatchion
By Sangye Hatchion — last edited
Try using bar soap made from neem (a type of tree). It's naturally antiseptic and healing for the skin. Very gentle. You can find it online (Amazon for sure) or any health food store. Not expensive at all-- same price as regular soap. Nice gentle smell and no chemicals. It rinses very easily and doesn't leave that soapy residue that's disastrous for skin folds and moisture. It will take care of skin yeast infections right away. This has helped me so much.
Jeanne Leder
By Jeanne Leder
That's a lot for you to think about! Thanks! We will certainly pray about these things.

God be with Jesse and with you,
Jeanne <><
Becky Pulley
By Becky Pulley
glad things went fairly well. Jesse must be a very patient young man to put up with all the different things. and we know how much you love him