Asi/Porrah- Girls home from hospital

[Guest guest]

Darla,

Sorry you had such a horrendous experience in ER. I know how you feel since I have had my fair share of times in ER with Lucas. I have also had positive experiences so hopefully you will too if need be. I have learned to share experiences with my pediatrician so that next time she can be my advocate. It has helped. Lucas had an NJ tube for about 6-8 weeks. He seemed to have more problems with reaction to the tape holding it in place and also was more prone for sinus infections with it. We were considering going to G-tube and returning to oral feeds and believe it or not after having a tube for almost 4 years that was harder to consider. Best of luck and sure hope that the mito cocktail is the answer for Zipporah.

Loriann

[Guest guest]

Darla,

Sorry you had such a horrendous experience in ER. I know how you feel since I have had my fair share of times in ER with Lucas. I have also had positive experiences so hopefully you will too if need be. I have learned to share experiences with my pediatrician so that next time she can be my advocate. It has helped. Lucas had an NJ tube for about 6-8 weeks. He seemed to have more problems with reaction to the tape holding it in place and also was more prone for sinus infections with it. We were considering going to G-tube and returning to oral feeds and believe it or not after having a tube for almost 4 years that was harder to consider. Best of luck and sure hope that the mito cocktail is the answer for Zipporah.

Loriann

[Guest guest]

Hi all, What a week, huh! What did you think of the BREIF note from my daughter Leah telling about the girls and the NG-tube placement? I was glad she stated it to you as "down the nose" rather than "down the throat" like she did for some of my friends. It was so funny to read the way she wrote about it all and then USED MY NAME!!! LOL TO update: Asenath was taken in due the same viral pneumonia/upper respiratory infection as Zipporrah. Same diagnosis, but the pulmonologist is wondering if their issues are more viral infections causing asthma type issues masking as pneumonia/upper respiratory infections. I tend to agree with him because he agrees Porrah's could be aspiration casued combined with asthma issues. Both girls have had this virus for 3-4 weeks (I think it's rotovirus-spelling?) and Asenath started having labored breathing, crackles in lungs, congestion, 196 heart rate, blood pressure of 141/68, headache, shakiness, etc. and her nurse who visits once a week for steroid side-effects check-ups was very worried. Asenath's pediatrician wanted her to go to ER immediately in case it was an impending stroke. I wasn't worried about that as she wasn't acting as she does during or just before one, but was concerned about the high rates. I thought that if she was bad enough to "not stop to see dad first to let him know we were going to the ER with "both" girls that it should be serious to keep her overnight for observationat least. Zipporrah needed to get a NG-placed because she was dehydrated again. Our pediatrician said it had to be done in ER. I can't understand WHY they couldn't do something so easy, but... So, we go to ER and unfortunately the same doc is on as last week. Yep, trouble! She strangely fought Zipporrah's NG-tube placement. Last week she wanted to place a NG and send us home, this time she was hesitant and felt we should try to use a SPOON and a CUP to feed her 5-6 oz. of formula/breast milk every 4 hours!!! Do I have anything better to do-and really would this even work well enough? Knowing Porrah, that would be way to much work! So, she in the end did place the tube. Concerning Asenath, she was totally unconcerned and wanted to send us home No labs done, no IV, no asthma treatments, NOTHING. Just 5 1/2 hours of sitting (other than an x-ray that revealed pneumonia). We felt she should be kept to see if we could do anything to help her get better and wanted labs (metabolic ones-not just blood count) and had to argue about this until she cooperated. She spent most of the time fighting with us. She was giving us advise on not conceiving any more children and treating us rudely concerning this. She said she did NOT need to read Dr. Cohen's paper because she went to med school and already knows how to treat Metabolic affected children (REALLY?!!!) Then, when finally sent to Asenath's room, we realized they hadn't given us an formula (or advised what kindto use), no syringes, no bolus (spellin?), extra ng-tubes, and no stethescope. Since Zipporrah wasn't adnitted, the nurses wouldn't give us the supplies and so we had to go back down to ask for the supplies from the ER doc again. Later, our in-house doc said she should have been admitted because she was dehydrated and then they could have worked with me to help know how much and how often to feed her and coordinate it with breast feeding. BUT... They also would not provide a crib so I had to sleep on a tiny couch holding the baby all night. Lastly, and incredibly, while there, we had NO LABS, couldn't get a response from Dr. Whiteman, no respiratory checks or treatments, no IV, NOTHING!!! (except for Motrin at my request for a bad ear ache) We were totally frustrated and at our wits-end! I was determined to talk with my in-house doc and did so for more than an hour about the isssue of ER visits and hospital stays and what we expected and desired to happen. It was tense at first but in the end I think it may help us for future trips. (IT BETTER!) We both agreed that a protocall is absolutely necessary. He understands more after reading the article from Dr. Cohen also. What we want to know is if there is ANYTHING that can help our girls to have a virus seperate from a stroke episode. Asenath has had a stroke episode with every virus minus one in the last year and a half; some larger, some smaller. Porrah has had two viruses and two stroke episodes. Can't we try something new to see if there is a way to prevent them??? This was my question. I rarely go to ER or stay in the hospital and don't want to but I think a new approach has to be taken if the girls are to not suffer strokes and be further damaged. I HOPE the doc understands now. Now I have to talk to my pediatrician and Dr. Whiteman about these issues to hopefully make some changes. The ER doc is hopeless... Sorry this is long. I hope this will help some of you in the fight for your kids' rights! Darla: mommy to: Asenath (4) Mito, brain vasculitis, strokes, migraines, seizures, g-tube, disautonomia issues, hypotonia, heat/exercise intolerance, oxygen use, asthma... Zipporrah,(5 mon.)Mito, strokes, sensory issues, feeding/breathing issues...Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com

[Guest guest]

Darla,

Praying for you all and a speedy recovery. I'll be moving to town next week so I would like to go to the ER for you and ring that doctor's neck... I would be filing a complaint and refusing her to care for your children in the future. Has your pediatrician been informed of what has been happening? I would definitely do that and have her get the protocol letter going ASAP. I had that in Waterloo and it was awsome. Of course even the paramedics knew what was going on as soon as they heard our address come up. They would walk in the door and say, "Is it or Lindsey?" But, if we experienced a doctor we hadn't seen much, they always got the letter out and followed it. It saved me from exhausting myself trying to explain what should be going on.

Sorry to ramble. Just know i'm praying for you all. Especially strength for you as I know your daughters are in good hands in your care.

Kim - Mom to and Lindsey (2) Partial Complex I

Asi/Porrah- Girls home from hospital

Hi all,

What a week, huh! What did you think of the BREIF note from my daughter Leah telling about the girls and the NG-tube placement? I was glad she stated it to you as "down the nose" rather than "down the throat" like she did for some of my friends. It was so funny to read the way she wrote about it all and then USED MY NAME!!! LOL

TO update:

Asenath was taken in due the same viral pneumonia/upper respiratory infection as Zipporrah. Same diagnosis, but the pulmonologist is wondering if their issues are more viral infections causing asthma type issues masking as pneumonia/upper respiratory infections. I tend to agree with him because he agrees Porrah's could be aspiration casued combined with asthma issues. Both girls have had this virus for 3-4 weeks (I think it's rotovirus-spelling?) and Asenath started having labored breathing, cr! ackles in lungs, congestion, 196 heart rate, blood pressure of 141/68, headache, shakiness, etc. and her nurse who visits once a week for steroid side-effects check-ups was very worried. Asenath's pediatrician wanted her to go to ER immediately in case it was an impending stroke. I wasn't worried about that as she wasn't acting as she does during or just before one, but was concerned about the high rates. I thought that if she was bad enough to "not stop to see dad first to let him know we were going to the ER with "both" girls that it should be serious to keep her overnight for observationat least.

Zipporrah needed to get a NG-placed because she was dehydrated again. Our pediatrician said it had to be done in ER. I can't understand WHY they couldn't do something so easy, but...

So, we go to ER and unfortunately the same doc is on as last week. Yep, trouble! ! She strangely fought Zipporrah's NG-tube placement. Last week s he wanted to place a NG and send us home, this time she was hesitant and felt we should try to use a SPOON and a CUP to feed her 5-6 oz. of formula/breast milk every 4 hours!!! Do I have anything better to do-and really would this even work well enough? Knowing Porrah, that would be way to much work! So, she in the end did place the tube. Concerning Asenath, she was totally unconcerned and wanted to send us home No labs done, no IV, no asthma treatments, NOTHING. Just 5 1/2 hours of sitting (other than an x-ray that revealed pneumonia). We felt she should be kept to see if we could do anything to help her get better and wanted labs (metabolic ones-not just blood count) and had to argue about this until she cooperated. She spent most of the time fighting with us. She was giving us advise on not conceiving any more children and treating us rudely concerning this. She said she did NOT! need to read Dr. Cohen's paper because she went to med school and already knows how to treat Metabolic affected children (REALLY?!!!) Then, when finally sent to Asenath's room, we realized they hadn't given us an formula (or advised what kindto use), no syringes, no bolus (spellin?), extra ng-tubes, and no stethescope. Since Zipporrah wasn't adnitted, the nurses wouldn't give us the supplies and so we had to go back down to ask for the supplies from the ER doc again. Later, our in-house doc said she should have been admitted because she was dehydrated and then they could have worked with me to help know how much and how often to feed her and coordinate it with breast feeding. BUT... They also would not provide a crib so I had to sleep on a tiny couch holding the baby all night. Lastly, and incredibly, while there, we had NO LABS, couldn't get a response from Dr. Whiteman, no respiratory checks or treatments, no IV, NOTHING!!! (except for M! otrin at my request for a bad ear ache) We were totally frustrat ed and at our wits-end! I was determined to talk with my in-house doc and did so for more than an hour about the isssue of ER visits and hospital stays and what we expected and desired to happen. It was tense at first but in the end I think it may help us for future trips. (IT BETTER!) We both agreed that a protocall is absolutely necessary. He understands more after reading the article from Dr. Cohen also. What we want to know is if there is ANYTHING that can help our girls to have a virus seperate from a stroke episode. Asenath has had a stroke episode with every virus minus one in the last year and a half; some larger, some smaller. Porrah has had two viruses and two stroke episodes. Can't we try something new to see if there is a way to prevent them??? This was my question. I rarely go to ER or stay in the hospital and don't want to but I think a new approach has to be taken if the girls are! to not suffer strokes and be further damaged. I HOPE the doc understands now. Now I have to talk to my pediatrician and Dr. Whiteman about these issues to hopefully make some changes. The ER doc is hopeless...

Sorry this is long. I hope this will help some of you in the fight for your kids' rights!

Darla: mommy to: Asenath (4) Mito, brain vasculitis, strokes, migraines, seizures, g-tube, disautonomia issues, hypotonia, heat/exercise intolerance, oxygen use, asthma... Zipporrah,(5 mon.)Mito, strokes, sensory issues, feeding/breathing issues...Please contact mito-owner with any problems or questions.

Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com