Sims Family Need Help

$2,385 of $50,000 goal

Raised by 17 people in 13 months
Created May 21, 2017
Our6yr old granddaughter Haven Sims was born with vacterl association and polysplenia and has several health issues. On Saturday 5-13 she was rushed by ambulance to Scottish Rite Hospital because she had a tachardia, her heart rate was 198 beats per minute, her potassium was sky high, and they had to shock her while she was still awake to try to slow down her heart rate.  Her blood vessels had collapsed and they had to drill a hole into the bone of her leg while she was still conscious to start an IV.  She has continued to have issues while in the hospital.  Her heart rate has been everywhere from as low as 54 up to 198 and back, and they don't know why.  Her B.U.N. and creatin levels, which has to do with her kidneys, is extremely high.  She has a virus of some kind and a bowl blockage that is all the way up in her diaphram.  Our daughter is a single mother and she has not left Haven's side.  So now on top of worrying about Haven's health, she also has to worry about how to pay her rent and other bills since she has lost the income from not being able to go to work.  We still don't have the answers as to what is causing all these things to happen with Haven's health and we don't know how long she will remeain in the hospital.  We are asking anyone who can to please donate to help our daughter and grandaughter.  If we can raise enough money for her rent and bills, we can at least take that much worry off of her.  If we can raise enough for medical expenses to it would mean the world.  Even a dollar or two would add up to a big help.
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I haven't updated in a minute. But our trip to the colorectal and pelvic reconstruction Center is quickly approaching August 9th. Haven is going to be put to sleep and have Botox injections put directly into her bladder. To hopefully stop the muscle spasms. We've moved up her catheterization schedule from every 4 hours to every two and a half hours. Right now she seems okay but we're still having a lot of tummy issues. Her lactose intolerance test came back negative so we're back to the drawing board on Whitehaven is having so much gas issues. We believe it is because part of her colon is not processing properly. And they're going to have to do a barium enema when we go back in October to map out her colon so we can figure out how much of her colon we're going to have to take out in October. So far we have three trips we must make to Ohio this year.. three days in August for her small surgery. And 10 days in October for bowel management boot camp and imaging. Because Haven also has polysplenia we must map out where all of her spleens are for surgery so that none of them are damaged. If one ruptures they all rupture like Domino's and she can bleed the death in under a minute. So we must get every bit of Imaging that we need done there and figure out if her bladder is going to need to be augmented as well. Along with adjusting her nightly bowel flush regimen because she still having accidents and we're not sure why.
After the mapping is done. We'll go back in December and Haven will have her appendix taken out and they will use it to shape it into two ports which will connect to her bowel and her bladder through her stomach. This will allow us to do her enemas through her belly button and hopefully give us a better flush result. They will be closing off her urethra and we will have to Cath her through her belly through another hole that they were put right next to her belly button about the size of a pencil. Hopefully give Haven more Independence in a better quality of life. While they're in there. Their plan is to do a recension on her colon and take a few inches of it out.
We just ordered her a new set of braces for her feet hopefully the new design work out.
Havens last MRI showed cerebral volume loss. We're not quite sure what is causing it but it means that her brain is possibly shrinking. We followed up with a neurology to see what steps were going to have to take next.
As for Havens kidneys her nephrologist is very concerned that her phosphorus keeps Rising. We know that haven is going to be on the road for a kidney transplant in the future we're just trying to hold it off as long as possible.
In the event that she needs one soon I am trying my best to lose as much weight as possible in order to give her one.
The good news is that at our well check last week Haven has grown a little bit over an inch since February and she weighs 36 lb :-) the appetite enhancer that she has been taking is working. We're still not sure if we're going to get the growth hormone injections or not we find out next month.
But as I am doing all this by myself please continue to share our GoFundMe page. And please continue to donate so that I can continue to make these trips out of state for my daughter. I do work full-time but trying to maintain a household and all of the extra medical expenses are very hard. Thank you all so much for your continued prayers and support
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we have a lot coming up. In August I have to take off work and take Haven back to Columbus Ohio to the colorectal and pelvic reconstruction Center. Where she will be put to sleep and have Botox injections into her bladder. We will be there for 3 days. This is the stop Havens bladder from spasming so badly. We've moved up our catheterization regimen to every two and a half hours.
We'll be there from August 9th through 11th
Then we have to go back in October for 10 days for bowel management boot camp and to have a battery of images and test done for Haven's next upcoming surgery October 11th through 19th
They're discussing doing a recension on Havens colon. This means they will be taking out a large portion of it. . While they do this surgery they will be putting in a port for her bowel and her bladder that will come out of her stomach. They will be using her appendix to do this. This is going to be a very large surgery. We're thinking this will happen in December and we will be there for an additional 2 weeks.
All of these things are to hopefully give Haven a chance at a better quality of life. Please continue to share this page. As I will be missing a very large amount of work. Not only will I be missing work and not making any money but I will have to pay someone to run my route while I am gone in order to keep my job.. thank you all so very much for being so supportive.
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Haven has a small blockage in her intestines right now that I'm working to get out. It's been very difficult and her flushes don't seem to be working as they should.
Her potassium level seems to be where it needs to be right now but we're still really concerned about her phosphorus.
This has to do with her kidneys . her kidneys are not doing good at all.
I've been putting a Foley catheter Inn at night so that her bladder can drain continuously in her sleep. Unfortunately this means that she has to be changed almost every hour. Which gives her and I both very little sleep. I tried connecting a closed system bag but she pulls it out during the night.
On Wednesday this week we have to have a brain and spinal MRI period because Haven has a cochlear implant she has to have a special MRI that is calibrated to not rip it out of her head. I'm very concerned about this because this will be her very first MRI since she has had her implant.
Also this will be the first time that she has been sedated since her cardiac issue. We are cleared for Sedation from a cardiac standpoint but there is no way for us to know if we will have another episode a ventricle tachycardia. ( heart beating out of rhythm)

We're set to go back to Havens specialty clinic in Ohio August 9th through 11th.
Thanks to everyone for their gracious donations we are almost caught up on everything we got behind on. Now we have to start saving for the trip and the time that I will be out of work. They are also going to expect us to come back in September for a 10-day bow management boot camp . I haven't quite figured out how I'm going to swing that one.
But just like everything else we will figure it out. Thank you everyone for your continued support.
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Havens doctors in Ohio want us to come back out next Wednesday through Friday so that haven can have her flush regimen adjusted period and have her Botox injections into her bladder. After that they want us to come back again in September for another 10 day by management boot camp.
Unfortunately we have had so many bad things happen one right after another. Then it where you're going to have to continue to share this go fund me page. Thank you everyone for your support.
I hate having to ask people for help but it's just me and her.
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$2,385 of $50,000 goal

Raised by 17 people in 13 months
Created May 21, 2017
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