Enerchi
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MayK - We have you and your DD in our prayers!!
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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
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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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movie zombie
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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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swingirl
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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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gregchang35
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Enerchi
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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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