Discussion in 'Help From Above' started by bignastyGS, Oct 29, 2011.
You are all in mine.
Praying for all of you Pat.
Wanted to update you all on my granddaughter Piper.They first thought she had Ureal Citrullinemia which wont allow her to break down the proteins and amino acids,thus the ammonia your body makes is not dispelled through the urine.Her ammonia in her brain was elevated to the 700 range with 30 being what it's range is to be. The had her in the PICU unit and did every kind if test they could do to help.To their amazement,the levels dropped and her level was 48 that evening.It went lower to 14 the next day. The main concern was if they had to do dialysis.If they would have had to do it,the complications would have been immense.Again,Piper proved them wrong. She was moved down to the Natal ICU which meant great things were happening. As of last night,she has now begun drinking from a bottle,been removed from the drugs and all of the 13 lines but one has been removed.Since she a feeding tube in yet in case they need to feed her as she was struggling with the sucking and swallowing. We got fresh pictures last night of Sarah feeding her with a bottle.The doctors are extremely pleased as she can now hold her own temperature without a warmer,her eyes are open much more and she wants to eat.Herr pooping and peeing are back to normal and from what they see,all MRI,EEG etc tests are coming back positively. There is also talk Piper may be coming home soon. Perhaps even before Thanksgiving. That will give us all something to be thankful for. I wish to thank all who have kept us in their prayers and thoughts as it really means alot to me and my family.There is still some recovery to be made and I would appreciate it if you would keep us in your thoughts till Piper makes it home.
Thats great news, sounds as if she is a fighter. Hope your family has a wonderful Thanksgiving with one extra "little Turkey " on hand !!!!!!!!!!!
Thoughts and prayers to your family and "PIPER" !
That is great news. Thank you for the update.
My hopes and prayers are with you and the family. She is a fighter and will be fine. Next thing you know she will be 16 asking for the keys to the buick
Great news Pat,hope she comes home soon.
Super news! One extra prayer sent hoping for a fantastic Thanksgiving at your Home! ray:
Awesome News!!!! Looking forward to pictures!
It's been a little while since I have updated. Things went like a roller coaster ride the last 3-4 weeks. We'd get our hopes up,only to be crashed down,then Piper took a turn for the worse and they were trying everything to get her to gain weight,keep formula down and to feed her through her feeding tube which went down through her nose.We have been traveling to and from Philly once a week since she was born and Sarah and Lane have been staying there alot. Things are tough for them right now,but the local churches and family have been giving them money for the trips down and back,plus to help eat.I would like to let everyone know just how wonderful the people at the Ronald McDonald house have been to my family. They have had a room for Sarah and Lane and they have never as much asked for a dime. They know the situation and are the greatest thing for the families that are in need of help. I have been donating to them and several coworkers dropped money to them in Pipers name.
Now, on to Piper....We went down to Philly Saturday since she was obviously not going to be home for Christmas to spend the day with her. She was throwing up and couldn't keep either her meds or nutrition down.The were feeding her though her tube. Her Electrolytes were low and they became really concerned. After taking her down to get X-Rays and an MRI, they think they found one of the biggest underlying problems as to why she was throwing up. A commonly known problem in infants was found. Her bowel
was partially obstructed. That meant surgery asap. They had a tough time getting an IV in as well as a breathing tube. So,on X-Mas day at 2pm,the took Piper in for a surgery. It was 3 hours of Hell for us.We sat at the table at home and all was worried. Than,the call came we have been waiting for all afternoon. Everything went well and it was a successful surgery. They also decided to remove the feed tube and insert it in her side.So, no more pulling tubes out of her nose. As of today,they started feeding her through the tube,her eyes are open again and she is taking medicine. She has gained about a pound and a half since being born,and now she will be giving her her updated shots this week. If everything goes well with that,they feel she will finally be able to leave the hospital after 2 months. That will be her 1st time out of the hospital except for the day they transferred her. Finally,things are looking not so bleak..
Glad to hear that things are looking better.
I think I mentioned that my daughter got on the life flight helicopter and went to neonatal intensive care when she was less than one day old.
I know that it was a rough three or four weeks for me.
I'm glad that the feeding tube is gone. Not that it's a great thing with the tube in the gut, but I know that after they took the tube out of my daughter's nose and throat it took several days for her throat to heal up enough for her to eat enough to come home. Then it took quite a while till her throat was all better.
You are right about the Ronald McDonald house. The hospital was only an hour or so from home so it was close enough for me to come and go but I could see how important the Ronald McDonald house was for many people.
that's great news, praying she'll pull through.
And to put a somewhat end to a bad story....This is what arrived home to Loganton from Philly today. I cannot say enough of how well we were all treated at the Children's Hospital,The Ronald McDonald House and by all the staff from both places. I walked around several times with my Giants gear on and had many,many good conversations with several Eagle fans. I may have to change my attitude a little. There was a cleaning guy who had some really good conversations about our teams and he wished my Giants well..aand really meant it..They razzed me alot at the Ronald house but were all very polite and we laughed a lot. Those people never met us,knew us or heard of us before,but treated the kids as well as my family as their own. They all understood why we were all there and supported us and helped in many ways. I cannot ever Thank them enough,but by hugging them and shaking their hands,that's all they needed. Truly wonderful people helping people that are in need..On funny story I have is on Wednesday I reported to the 5 West section where Piper was staying. Upon turning the corner,I noticed a NY with a red circle around it and a line through it..We all got a great laugh.
I also got a similar thing at the Ronald house yesterday. This am,before leaving,I went to their computer room and changer the Eagle Wallpaper that was on them to NY Giants themed...
Here is our Piper at home for the first time since being born..
Awesome end to it all. Cute kid also!
I don't know how those people at children's hospitals and Ronald McDonald house do it.
There are some very happy endings, but over all it would be very depressing to work there. Great people and a different breed for sure.
Pat , We're so glad to see the lil cutie made it home !!!
Thank God !!
Great news Pat....:beer
Awwww,,,,The Wife and i are thrilled.... God is awesome ....
Now thats a great beginning to 2012!!