MayK - We have you and your DD in our prayers!!
- Thread starter Enerchi
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Enerchi
Super_Ideal_Rock
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Thursday morning update:
I had to the chance to actually speak to MayK this morning, when she took a quick break and she is coping as best as she can, but appreciates all the love and support being sent their way. Much more stressful than anticipated, when complications arise.
Things are not going as smoothly as MayK and DD would like. Have now had consultations with 3 specialties (Urologist, Gastro and Neuro) resulting in a feeding tube and other assorted "tubes" ... They are doing as much movement as DD can handle but its not moving things along. They will investigate further but there is much frustration and concern by both the family and the patient. As a result, discharge from the hospital has been delayed due to this set back, so they won't be returning home quite yet, as planned.
So... if I could make a wish, I'd wish that her sweet DD has one GIANT FART!!!
DUST DUST DUST for a lot of gastro movement, DD!!
I had to the chance to actually speak to MayK this morning, when she took a quick break and she is coping as best as she can, but appreciates all the love and support being sent their way. Much more stressful than anticipated, when complications arise.
Things are not going as smoothly as MayK and DD would like. Have now had consultations with 3 specialties (Urologist, Gastro and Neuro) resulting in a feeding tube and other assorted "tubes" ... They are doing as much movement as DD can handle but its not moving things along. They will investigate further but there is much frustration and concern by both the family and the patient. As a result, discharge from the hospital has been delayed due to this set back, so they won't be returning home quite yet, as planned.
So... if I could make a wish, I'd wish that her sweet DD has one GIANT FART!!!
DUST DUST DUST for a lot of gastro movement, DD!!
movie zombie
Super_Ideal_Rock
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she was "out" for a long time..........returning bowels to "normal" can take a lot of time.
affects of anesthesia are for me almost worse than the actual surgery.
I hope she gets some good bacteria into her gut and soon....and that the gas gets released soon!
affects of anesthesia are for me almost worse than the actual surgery.
I hope she gets some good bacteria into her gut and soon....and that the gas gets released soon!
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It's finally my turn to post an update! We are beginning to feel we have turned a significant corner!
DD had developed what Neuro surgery called a Post Surgical Ileus. After a number of attempts to help her get her bowels restarted didn't work causing her colon to be distended and at my urging they called in a consult team. The Peds Surgical team was called in. After diagnosing her with Ogilvie's Syndrome they presented three options for treatment of this syndrome. One to watch her, which since her colon had surpassed 10 cm to 13.6 this was not an option, option two a drug that had been used primarily in adults, in fact there were only two cases with children, and the third was a trip to the OR to use a scope down her throat to push a puff of air into her colon to encourage it to move. Because it was so large they were very concerned about causing serious damage. They elected to use the drug. They took us back up to the PICU and five doctors greeted us. They prepped her for the drug and asked us to leave. In 30 minutes they came to tell us the drug had worked perfectly! She didn't rest well afterwards due to the side effects but less than 12 hours later we were headed back to the Peds floor.
Our Neuro Surgeon said he had never seen this in a Peds case and his team had to research the syndrome. It was a terrifying 36 hours.
We are now entering our 8th day in the hospital, 7th post surgical. We have to work on restoring bladder function which is the side effect from the tethered cord. We've learned the importance of asking questions, pushing back and having an advocate present at all times. We never left her side. The news this morning from Neuro was she looked better, he then turned to me and said... "And you also look much better". The previous 36 hours had sucked the life from me. They finally uttered the word "home" today. It's still not until Sunday or Monday but we have a goal!
Many, many, many thanks to Enerchi (ms 10,000 posts) for the thread updates and all the wonderful wishes from the PS community. I hope to have some time in the near future to start posting more myself and get back to enjoying admiring bling!
DD had developed what Neuro surgery called a Post Surgical Ileus. After a number of attempts to help her get her bowels restarted didn't work causing her colon to be distended and at my urging they called in a consult team. The Peds Surgical team was called in. After diagnosing her with Ogilvie's Syndrome they presented three options for treatment of this syndrome. One to watch her, which since her colon had surpassed 10 cm to 13.6 this was not an option, option two a drug that had been used primarily in adults, in fact there were only two cases with children, and the third was a trip to the OR to use a scope down her throat to push a puff of air into her colon to encourage it to move. Because it was so large they were very concerned about causing serious damage. They elected to use the drug. They took us back up to the PICU and five doctors greeted us. They prepped her for the drug and asked us to leave. In 30 minutes they came to tell us the drug had worked perfectly! She didn't rest well afterwards due to the side effects but less than 12 hours later we were headed back to the Peds floor.
Our Neuro Surgeon said he had never seen this in a Peds case and his team had to research the syndrome. It was a terrifying 36 hours.
We are now entering our 8th day in the hospital, 7th post surgical. We have to work on restoring bladder function which is the side effect from the tethered cord. We've learned the importance of asking questions, pushing back and having an advocate present at all times. We never left her side. The news this morning from Neuro was she looked better, he then turned to me and said... "And you also look much better". The previous 36 hours had sucked the life from me. They finally uttered the word "home" today. It's still not until Sunday or Monday but we have a goal!
Many, many, many thanks to Enerchi (ms 10,000 posts) for the thread updates and all the wonderful wishes from the PS community. I hope to have some time in the near future to start posting more myself and get back to enjoying admiring bling!
Enerchi
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YAY!! Best news in a long time!! Welcome back, my friend, and so very happy and relieved to hear there is now positive progress being made! WOO HOO!!! (((HUGS))) to you both and big DUST wishes for a lot more GI movement!! Who knew we'd be EVER wishing for FARTS on PS!!
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That is great news, hope she'll be home by Sunday...Mayk|1379103283|3520286 said:
movie zombie
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good news, indeed!
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Oh my MayK, I am so relieved for all of you! What a terrifying 36 plus hours you all had and I am so happy the drug worked as well as it did! Cannot wait to "see" you back at PS cause that will mean you are all safe and sound and at home again. Big hugs to the whole family but especially to your darling daughter who has been through so much at such a young age and finally on the road to a healthy and happy pain free future!
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Wonderful news about your DD. It is so important to ask questions, be persistent, and be/have an advocate for the patient. It makes a world of difference.
Hang in there and take care of yourself too. Soon, you'll have a daughter at home to look after!!
Hang in there and take care of yourself too. Soon, you'll have a daughter at home to look after!!
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Mayk, I'm so glad she has overcome that set back. I can't imagine how uncomfortable she must have been. Not to mention how scary it
must have been for you. Sending lots of healing dust and positive vibes for going home on Sunday /Monday.
must have been for you. Sending lots of healing dust and positive vibes for going home on Sunday /Monday.
armywife13
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I am so glad things have taken a turn for the better!!! Your daughter, you and your family have been and will continue to be in my thoughts and prayers!!!
Your daughter, you and your family have been and will continue to be in my thoughts and prayers!!!
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Oh Mayk! I'm so glad that things seem to have turned the corner for both you and DD!! I hope that you are packing to go home as we speak and that your next update will be from the comfort of your own home! You and your family continue to be in my thoughts and prayers!
Enerchi
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Hot off the presses! Direct from Mayk....
DD is making great progress yesterday and today in the 2 areas that were concerning the specialists - YAY!!! They are hoping (fingers crossed!!) for a discharge by mid to late week, if things continue along this path... but... DD is not out of the woods yet, so the stress of this is very exhausting on them. MayK wanted to thank EACH and EVERY one of you who are sending your love, prayers, good thoughts, dust and wishes their way - THANK YOU!
The PS support means a lot to the MayK family and they are grateful and she sends a very deeply heart felt thank you to you all.
DD is making great progress yesterday and today in the 2 areas that were concerning the specialists - YAY!!! They are hoping (fingers crossed!!) for a discharge by mid to late week, if things continue along this path... but... DD is not out of the woods yet, so the stress of this is very exhausting on them. MayK wanted to thank EACH and EVERY one of you who are sending your love, prayers, good thoughts, dust and wishes their way - THANK YOU!
The PS support means a lot to the MayK family and they are grateful and she sends a very deeply heart felt thank you to you all.
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Two weeks and two days and we are heading home today! We couldn't be more excited or feel more blessed. We are awake at 5 am waiting for the docs to make the 6 am rounds where we get our discharge paperwork!!!
Many thanks for the prayers, well wishes and PS dust!
I can't wait to catch up on a few posts and join the bling world again!
Many thanks for the prayers, well wishes and PS dust!
I can't wait to catch up on a few posts and join the bling world again!
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Mayk|1379758756|3524669 said:
Woohoo, that is great news MayK!!!!
So happy you are all going home and that your daughter is doing well and on the road to a full recovery!!! Continued good thoughts and dust and big hugs being sent to all of you!
gregchang35
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M so glad to hear that things have turned around for u guys!
Dust from down under
Dust from down under
Enerchi
Super_Ideal_Rock
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HOT OFF THE PRESSES---->>>>
They are on the road HOME!!!! HOME!!! WEEEEEE!!!!!
I've got goosebumps --- Congrats to DD for the huge steps in recovery you've made and I'm also thanking a higher power for keeping the MayK family strong during this period.
WOO HOO!! Homeward bound!!!
I've got goosebumps --- Congrats to DD for the huge steps in recovery you've made and I'm also thanking a higher power for keeping the MayK family strong during this period.
WOO HOO!! Homeward bound!!!
Sparklelu
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Some how I missed this whole thread.
I knew Mayk DD was undergoing some pretty serious surgery and figured it wasn't going to be a walk in the park, but, after reading this thread, holy cow! Poor babe. I'm so happy we have a successful outcome!!!!!
The picture of the X-rays was amazing. Isn't it incredible what modern medicine can do?? My prayers for only good progress going forward!!!!
I knew Mayk DD was undergoing some pretty serious surgery and figured it wasn't going to be a walk in the park, but, after reading this thread, holy cow! Poor babe. I'm so happy we have a successful outcome!!!!!
The picture of the X-rays was amazing. Isn't it incredible what modern medicine can do?? My prayers for only good progress going forward!!!!
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This is great news!.. lots of speedy recovery DUST for your daughter.. 
lots of speedy recovery DUST for your daughter.. 
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HAPPY HAPPY HAPPY HAPPY DAY!!! Best good news I've heard in a long time. I know the road to full recovery isn't over and you are all in my thoughts as DD continues to heal. Thank you for sharing this journey with us MayK. Sending hugs, best wishes, and oodles of PS dust your way.
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This is just the best news ever! So glad you are all home, and best wishes for a continued smooth recovery for DD - hugs to you all, it's been a grueling few weeks for all of you, I hope you all can rest and relax a bit more now.
So glad you are all home, and best wishes for a continued smooth recovery for DD - hugs to you all, it's been a grueling few weeks for all of you, I hope you all can rest and relax a bit more now.Celebrating Mothers And Mentors This Mother's Day
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