Re: Kim- Zipporrah home again

[Guest guest]

Hate to say it Kim, but I went to both the top two hospitals in Des Moines. First, I went to the Methodist/Children's Blank Hospital and was sent home and then went to Mercy Hospital for the direct admit. This was the first time I have been in Mercy Hospital and I am unsure which I like best. There are both good and bad doctors at both locations. I plan to get some type of protocol from Dr. Whiteman before the next illness for sure! I do think Dr. Cureg and the guys that work with her (her hospital partners) probably know the most about Mito in Des Moines. They just need to understand the issues better about hydration and illness treatment. I plan to do something about that! That is why I asked this group if they could recommend some good web sites or other material that would help them better understand treating Mito illnesses. Hope the move is going smoothly. Can't wait to meet. Darla Zipporrah home again We got home about 10 PM last night and Zipporrah is doing much better. After arriving at the hospital she became very lethargic from dehydration and we were thankful she was there to get some help. I had to go to the Pediatrician and demand she be put in (they direct admitted from there). They were still feeling she was doing ok on her own. Sometimes I wonder what I have to say to get my docs to wake up! If anyone has an article that would help to express the need to keep hydrated I would love to get it! One of the hospital docs said it would be crazy to give IV's to our kids with each virus because then they would be in all the time. My response was detailed as to why they needed that hydration help and I think he better understands now. Asenath usually is fine at home because I can hydrate her through her g-tube. Porrah has already been having problems eating and putting out enough urine, s! o she MAY need this added help each time. Every time my kids have went to ER and been given a half-hearted effort or just an "overnight observation" they have went home only to get worse and then have a stroke episode. I let them know that and that I only come when I KNOW they need help. I mean, really, I don't even go in when they have strokes unless they are very bad! Do they want me to NEVER come in??? Sorry about the soap box guys. We were going back and forth as to whether to place a NG-tube because of her lack of nursing but she picked up again some yesterday and so we opted to give it another try first. The docs said she needs a swallow study and probably a NG-tube soon. The biggest problem she is having again is the refluxing after each feeding. I think the virus and all that phlegm is hindering her. I hope to talk to her OT today about the issue. I don't want a NG-tube, ! but I certainly don't want to go through what we did with Asenath eith er. The docs are much more open to helping Zipporrah because of Asenath's struggles (thankfully!). We see a pulmonologist tomorrow about the trachea vascular ring issue. We hope to get some answers concerning that soon. LASTLY, while in the hospital, Porrah's heart rate was terribly irregular. She dropped as low as 43 bpm (at 5 month old) and struggled to pick back up again. The nurses agreed as they listened to it with their stethescopes. The docs weren't concerned though. This was the first time Porrah has ever done this. She was also very cold to the touch on her extremities. She only got better after I tried co-sleeping with her as I have found this definitely helps to regulate breath patterns and heart rates. It was scary and frustrating as I have seen this issue with Asenath many times. The doc wasn't worried because she recovered with only a little! help. The nurse said, "Well, if her heart does stop at home, you can always use CPR and rescue breathing on her." She was so casual as if it is such an easy thing to do on one's child and always brings them back!!! I was shocked to say the least. I think disautonomia/autonomic system failures are the cause as she also has a 96 degree temperature normally. The nurse thought her being 104 then down to 96 was a shock and threw her heart rate off. I just don't want to see it again! Realistically, I assume I will. Sorry this is long, I am sure there is much more I could share. Thanks to everyone who has prayed for us. You guys mean more to me than you could ever dream! Darla: mommy to Asenath, Zipporrah, and the gang Please contact mito-owner with any problems or questions. Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com Please contact mito-owner with any problems or questions. Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com