Thanks for the update and the Hospital room info. The Christmas cards would be a good idea.
Hoping for a Speedy recovery for EB!
Hoping for a Speedy recovery for EB!
EB update, .please continue thoughts and prayers *Updated on 25 Feb 20:37*
- Thread starter Firehouse
- Start date
bamabiker
Member
Dumb me, I did not notice in your first post that you are in Alabama. I work a few miles from Children's Hospital. Prayers will continue for little EB.
Wheelgunner840
Member
Thanks for the update Firehouse. Prayers still going up for the little one, and a Christmas card will be going out soon. If I sign it from me @ the S&W forum through "Firehouse", will her parents know who you are by that name?
WG840
WG840
I have an update with some slightly encouraging news. It is my understanding that EB is completely off of her sedation medications. She is expected to be taken off of the ventilator and prepped for a tracheotomy and a feeding tube. They did an EEG today and the EEG shows no new seizure activity, the MRI wasn't as clear as the Dr. would have liked. The oncologist talked to the parents this afternoon and they said they are going to wait 2 weeks, do another MRI with contrast to check on things, then hopefully start treatments. They will know more in 2 weeks. Please continue to pray for EB and her family. She will be spending Christmas in the Pediatric Intensive Care Unit this year. Let's pray for her continued healing and to be home by next Christmas for sure. Unless there is some surprising news to develop in the next several days, I most likely will not post anything new until the next checkup in two weeks.
Also, to those of you who sent Christmas cards. Thank you so much. I don't know who all sent them, but I heard today she received two post office sized mail carrier boxes full of cards, and two boxes of gifts today. Please keep them coming. To everyone, take care, and Merry Christmas.
Also, to those of you who sent Christmas cards. Thank you so much. I don't know who all sent them, but I heard today she received two post office sized mail carrier boxes full of cards, and two boxes of gifts today. Please keep them coming. To everyone, take care, and Merry Christmas.
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A surprise update. EB had a surgical procedure to have her feeding tube put in this morning. She did very well and should be able to use it soon. She has a new Doctor looking at her case, and he has the feeling that the tracheotomy is not needed for now. So he has decided not to do it at this time. Plans are for now to extabate her this weekend. If she does well on her own, they will forgo the trach tube altogether. If not, they can always reschedule to have it done.
Keep the prayers coming. Merry Christmas.
Keep the prayers coming. Merry Christmas.
m657
Member
Strength and love to all
Continued prayers for EB and her family and friends.
bamabiker
Member
I've been praying for some good news by Christmas for EB and this is at least some good news. Thank you Lord and please keep it coming, Amen.
Wheelgunner840
Member
Continued Prayers. Thanks for the update. That is encouraging news.
WG840
WG840
george minze
Member
Children are our most precious commodity. Prayers for her recovery. and prayers for her parents. Prayers for her doctors, let God guide their hands.
I want to thank everyone for their continued thoughts and prayers for little EB. Saturday they took her off of the ventilator and she seemed to do okay, initially. Today she was moved back into the Pediatric ICU because she has began to have trouble breathing. You in the medical field know, pediatric respiratory problems is a life threatening issue. It's bad enough for adults but children especially are vulnerable. She had a chest x-ray taken, but we don't know the results for now. Keep praying folks, I'll keep you posted.
bamabiker
Member
Prayers will continue. Thanks for the update.
Chik a Boom
Member
Strangely enough, she came to mind last night and I remembered to pray for her. We're not giving up.
More news today. I have an email from EB's mother. Below is the message copied direct from her. These are her statements. I thought I would share. Thanks.
Sunday EB was able to go to a room....but by Monday morning, she was back in PICU. She was in respiratory distress. Not sure if it is pneumonia or reflux from her feeding. We were not too upset because she was taken care of in PICU and I don't think we were quiet ready to venture out further. They were happy to have us back until about 1:30 this morning. We were shipped out again. This time we went to Special Care Unit which is a step down unit from PICU. She is monitored just as closely as in PICU, but we do get to see her for more hours during the day.
According to her doctors, she will stay here until her respiratory issues are fixed. She is getting occupational and physical therapy as SHE allows it. Her rehab doctor has been to visit as she has a long road to recovery ahead of her. Yesterday we were told for the first time that she had a stroke during surgery. We knew that she had a brain injury as a result of surgery, but no one used this word. So she has to overcome the cancer and the effects of the stroke. She needs continuous prayers. The cards are still coming and are very appreciated. We would like to thank all of you who sent cards or are thinks and praying for us.
Sunday EB was able to go to a room....but by Monday morning, she was back in PICU. She was in respiratory distress. Not sure if it is pneumonia or reflux from her feeding. We were not too upset because she was taken care of in PICU and I don't think we were quiet ready to venture out further. They were happy to have us back until about 1:30 this morning. We were shipped out again. This time we went to Special Care Unit which is a step down unit from PICU. She is monitored just as closely as in PICU, but we do get to see her for more hours during the day.
According to her doctors, she will stay here until her respiratory issues are fixed. She is getting occupational and physical therapy as SHE allows it. Her rehab doctor has been to visit as she has a long road to recovery ahead of her. Yesterday we were told for the first time that she had a stroke during surgery. We knew that she had a brain injury as a result of surgery, but no one used this word. So she has to overcome the cancer and the effects of the stroke. She needs continuous prayers. The cards are still coming and are very appreciated. We would like to thank all of you who sent cards or are thinks and praying for us.
Wheelgunner840
Member
Thanks Firehouse.
She seems to be a fighter. That's a good thing. Also, the ability to heal in a child is at times miraculous. Prayers will continue on a regular basis. Thanks again for the update.
WG840
She seems to be a fighter. That's a good thing. Also, the ability to heal in a child is at times miraculous. Prayers will continue on a regular basis. Thanks again for the update.
WG840
Sorry I haven't updated much lately. Not much has been said until recently. I have a few new messages from EB's mother. I will post them as written with a date and time posted. Thanks. Keep the prayers and well wishes coming.
Thursday 1/7/2010
Well, doctors now finally have proof that EB has really bad acid reflux which has caused her aspiration problems. We have known that, the PICU doctors and nurses have known that but apparently, what do we all know. Right now they are trying to arrange surgery for EB so they can get as many things accomplished at one ...time. I was able to hold her again today for a little while. Her neurostorms are getting better, but she has a really long road ahead of her. Please keep praying for her recovery!
Friday 1/8/2010
EB is going to have a hopefully very quite and restful weekend. She has a lot in store for her on Monday. But you all know how plans change. Hopefully on Monday they will put her back on the ventilator and sedate her. They will do an MRI and a spinal tap to see if her cancer has spread into her spinal column. (Docto...rs do not think so, and this is just a precaution.) She will stay on the vent until she has surgery to replace the EVD (drain in her head), a port for chemo and a "fundo" to fix her acid reflux problem. Then they will take her off the vent. She will recover from that (not sure of how long) and then they hope to put an internal shunt in her head. Then we can get started with chemo and some rehab. Please keep praying for EB!
Friday Night 1/8/2010
EB did do something that was amazing to us today. She received a Dora pray pillow and a Dora prayer blanket from a girl at Mt. Vernon Church. We put it on her hospital bed. Today, I think she noticed it. (She has trouble focusing her eyes.) Well, it was in the way of her GOAT that Josey sent to her that has not lef...t her side since it came. EB took her foot (in a cast) and moved the pillow. You could see the concentration in her face. She keep kicking her foot until she made progress. Such a little thing to others, but not to us. She was doing exactly what EB would do. We are so happy. Of course, it wiped her out and she has slept a lot since, but we will take that!
Saturday 1/9/2010
More change of plans...David Neal with surgery came by (thank you to whomever is a friend and told him about us...he is wonderful and I feel completely at ease with him watching over my princess) and said surgery is on slate for Monday. They are still working on getting every thing planned but we do know she will have... the "fundo" and the port placement. The doctors are now trying to work with neurosurgery to replace the drain. They are also trying to get the MRI for Monday so she will be done in one day. Please pray for a routine surgery with no surprises. Thank you all for all the thoughts and prayers. Please keep them coming!
Saturday 1/9/2010
More improvements with EB...just a little while ago (like 10 minutes) I told her that I was going to go get her Meemaw and Peepaw and let them see her. She smiled out of the corner of her left lip. (Remember her right side is damaged due to the stroke) But she smiled. Both Troy and I saw it. Of course I cried, but ...I cry all the time so that isn't unusual for me. Please keep sending the prayers her way!!! We love you all.
I will keep you posted as things develop. Thanks again.
Thursday 1/7/2010
Well, doctors now finally have proof that EB has really bad acid reflux which has caused her aspiration problems. We have known that, the PICU doctors and nurses have known that but apparently, what do we all know. Right now they are trying to arrange surgery for EB so they can get as many things accomplished at one ...time. I was able to hold her again today for a little while. Her neurostorms are getting better, but she has a really long road ahead of her. Please keep praying for her recovery!
Friday 1/8/2010
EB is going to have a hopefully very quite and restful weekend. She has a lot in store for her on Monday. But you all know how plans change. Hopefully on Monday they will put her back on the ventilator and sedate her. They will do an MRI and a spinal tap to see if her cancer has spread into her spinal column. (Docto...rs do not think so, and this is just a precaution.) She will stay on the vent until she has surgery to replace the EVD (drain in her head), a port for chemo and a "fundo" to fix her acid reflux problem. Then they will take her off the vent. She will recover from that (not sure of how long) and then they hope to put an internal shunt in her head. Then we can get started with chemo and some rehab. Please keep praying for EB!
Friday Night 1/8/2010
EB did do something that was amazing to us today. She received a Dora pray pillow and a Dora prayer blanket from a girl at Mt. Vernon Church. We put it on her hospital bed. Today, I think she noticed it. (She has trouble focusing her eyes.) Well, it was in the way of her GOAT that Josey sent to her that has not lef...t her side since it came. EB took her foot (in a cast) and moved the pillow. You could see the concentration in her face. She keep kicking her foot until she made progress. Such a little thing to others, but not to us. She was doing exactly what EB would do. We are so happy. Of course, it wiped her out and she has slept a lot since, but we will take that!
Saturday 1/9/2010
More change of plans...David Neal with surgery came by (thank you to whomever is a friend and told him about us...he is wonderful and I feel completely at ease with him watching over my princess) and said surgery is on slate for Monday. They are still working on getting every thing planned but we do know she will have... the "fundo" and the port placement. The doctors are now trying to work with neurosurgery to replace the drain. They are also trying to get the MRI for Monday so she will be done in one day. Please pray for a routine surgery with no surprises. Thank you all for all the thoughts and prayers. Please keep them coming!
Saturday 1/9/2010
More improvements with EB...just a little while ago (like 10 minutes) I told her that I was going to go get her Meemaw and Peepaw and let them see her. She smiled out of the corner of her left lip. (Remember her right side is damaged due to the stroke) But she smiled. Both Troy and I saw it. Of course I cried, but ...I cry all the time so that isn't unusual for me. Please keep sending the prayers her way!!! We love you all.
I will keep you posted as things develop. Thanks again.
bamabiker
Member
Thank you for the updates. I was thinking about and praying for EB last night. VM and I were talking about her today at the gun show. Prayers continue.
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