6:37 pm
July 14, 2016
Offline
Just to update everyone everything they had put in our daughter had gone bad over the last 3 weeks. So today she went under the knife again and they removed the femoral central line IV and her peritoneal dialysis catheter.
They then put in a new hemodialysis catheter and a new central line IV in her chest. She had a rough surgery that took 3+ hours but made it out in one piece at around 1500 hours today. She is still under with a breathing tube in her and they started the hemodialysis but the machine clotted and they had to stop for today.
By far the most stressful 3 weeks of me and my wife's life ever. Thank you all for the prayers and thoughts for our little girl and our family during this tough time.
6:43 pm
July 14, 2016
Offline Special thanks to the Allred family we really appreciate and Shaina will love the card when she wakes up! I love you guys
9:28 am
April 16, 2016
Offline Mike,
We are so sorry to hear that your daughter is having such a difficult time. We are keeping her and your family in our thoughts and prayers. Please let us know if there is anything you need.
Take care!
3:10 pm
Club Member
July 10, 2003
Offline Still in our prayers...
I used to wheel a lot. . .
5:04 pm
July 14, 2016
Offline Newest update:
Shaina just woke from her surgery yesterday and the Dr's removed her breathing tube. She is more alert than we've seen in weeks.
Thankle you all!!!
5:47 pm
Club Member
April 10, 2015
Offline that is great! Glad you all liked the card. Let us know when she can have visitors, we would like to come and bring her some presents.
6:31 pm
Club Member
September 3, 2008
Offline Great news!
Um...what?
7:57 pm
April 9, 2015
Offline We are glad she is doing better. Your family is still in our prayers!
1:22 pm
Club Member
February 26, 2014
Offline Great news glad to hear she's doing better
7:43 am
Club Member
August 17, 2014
Offline Thank you for keeping us updated. And as said above, let us know if there is anything I can do and when she can have visitors. Stay strong and know that you are thought of and prayed for.
7:53 pm
July 14, 2016
Offline They want to keep Shaina on the ventilator for a few days, which means they are going to keep her sedated so she's not fighting against it. They are not sure if the tremors and vomiting she is having are from withdrawals or not, they think it might be something called ileus, where there may be an obstruction in her intestines because some of the medication she has been on slows the bowels down and would cause things to back up and come up the other end and she hasn't pooped in the last 4 days except for a small amount today, so they are going to do an X-ray/ultrasound of her bowels. The infectious disease Dr wants to make sure the yeast hasn't gone to her spine or her brain, so they would need to do a spinal tap, but it is too risky for Shaina right now due to her bleeding risk so the treatment for that, if it were in her spine or brain would be to increase the anti fungal and for longer duration. They have already increased it and will do the spinal tap when it is safer. They put the breathing tube back in the other day because she was having respiratory trouble. They are worried that she has narrowing of the airways due to inflammation or scar tissue from being intubated so many times. Instead of doing a scope procedure in Shaina's throat, they are going to give her a steroid which decreases inflammation when the breathing tube comes out and if we don't hear the noise that she was making before then we know it was inflammation. She accumulated fluid around the left lung again, so that chest tube was put back in today. They were not surprised by that considering how much her veins are leaking so they are just going to leave both tubes in even if they look better with a chest x-ray. The risk of infection is higher but outweighed by the risk of having to take them out and put them back in again. The wound care team will be coming by to address Shaina's skin breakdown. She put out urine again last night and the nurse braided her hair it looks so cute!
10:35 am
Club Member
July 14, 2016
Offline What an ordeal! Our thoughts and prayers continue to be with you and your family.
1:10 pm
July 14, 2016
Offline Poor little girl will be spending her birthday completely sedated. She will be 4 this coming Tuesday the 6th.
All the nurse's say they will do her hair and nails so we will be sure to get pics to show her when she wakes up.
1:25 pm
July 14, 2016
Offline Ok Shaina had an emergency surgery last night. They are surprised she is doing as well as she is considering how bad it was. They removed a large part of her intestine. They said it was riddled with tears and holes and a lot of poop was spilling into her body. They said it was the worst they've ever seen on a child. They left her open with dressing over the incision. They are going to let her recover for a day and then on Tuesday go back in and clean out her belly again and see if there's anything else that needs to be taken out. The plan is to then put an ostomy for her poop. They may not be able to do the ostomy on Tuesday, it depends what they find.
2:01 pm
July 14, 2016
Offline Newest update : Today
Shaina was very stable during the whole operation, they were very happy. They cleaned her out again and looked at all the intestines. They previously cut out most of her large intestine. When they went back in after everything was cleaned out, they found another part of her large intestine that was unhealthy further up, so they had to take all of her large intestine out, aside from some of the colon that they left attached at the rectum. They put a stoma (opening in her abdomen) and attached the ileum (end of the small intestine) to an ostomy bag (poop bag) which she will have to have for about a year. After a year or so, she will have another surgery to attach the small intestine to the colon/rectum. They also had to replace her right chest tube once again. They are putting in a catheter to her radial artery now so they don't have to poke her poor little fingers every single hour for blood sugar, which has been happening for four weeks now. She is stable and hopefully this was our last major setback and now on the road to recovery.
5:04 pm
Club Member
April 10, 2015
Offline hey Mike -
what can we do to help??? Please let us know. thanks!
6:07 pm
Club Member
September 3, 2008
Offline I'm sorry to hear all about this. Still sending Prayers.
Um...what?
10:33 am
September 11, 2015
Offline Continuing to send thoughts and prayers your way. Let us know if you need anything.
1:20 pm
July 14, 2016
Offline Yesterday's update:
1400mls off in fluid and put out 73mls of urine @ 6am! Surgeons were just in and said to bump up the feeds. Best day yet!
They are starting to wean her off of sedation and are ready to pull out her breathing tube this weekend she is truly getting better and better everyday now!!
Thank you all for your prayers and everything else I love you all
1:32 pm
Club Member
April 10, 2015
Offline Let us know when she can have visitors. . .
10:01 pm
July 14, 2016
Offline buckallred said
Let us know when she can have visitors. . .
She can have visitor's anytime but it would probably be best to wait till she is awake so she can say hi to everyone. I will let you know how everything goes this weekend. We're hoping this is the big weekend
11:23 am
Club Member
August 17, 2014
Offline Wow Mike. U guys have been through something very hard. I am so very glad she is getting better. Hang in there, like I know u are and we r still with u!
5:33 pm
July 14, 2016
Offline So nothing new to update we're hoping to get the breathing tube out any day now.
But we did lighten up Shaina's room for when she wakes up.
3:32 pm
July 14, 2016
Offline New update:
Shaina has had the breathing tube pulled and she is breathing great and on her own. We can hear her little voice when she is crying, still no words yet but we are anxiously waiting to hear her voice again. I will keep y'all posted.
Thank you and God bless!!!
4:52 pm
Club Member
July 14, 2016
Offline Mike G said
New update:Shaina has had the breathing tube pulled and she is breathing great and on her own. We can hear her little voice when she is crying, still no words yet but we are anxiously waiting to hear her voice again. I will keep y'all posted.
Thank you and God bless!!!
I can't even begin to imagine how difficult a time this has been for her and your entire family. Wishing you a Merry Christmas and better times ahead in the coming days and throughout the entire New Year!
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