Our first fundraiser

Just wanted to post our first fundraiser to raise money for funds for our next surgery trip to Cincinnati. 
We will once again be gone for at least 2 months when Maggie has her surgery for her bladder augmentation. If you have not been following or are just now following, our daughter Maggie had major surgery on May 22nd of this year. This surgery compromised of having her right kidney removed, most of her colon removed, bladderneck reconstruction surgery, ureter reimplant, Mitrofanoff ( a stoma to catherize her for urine) and a Malone(a stoma for her enemas). 
This mega surgery lasted over 10 hours and we spent almost a total of a month inpatient due to complications that happened afterwards. 
Since then we have been to Cincinnati two more times ( so a total of 3 trips to Cincinnati this year alone) , and let me tell you , medical travel is not cheap no matter how cheap you try and travel.  The discounted hotel bill racks up as you wait to get in the already always 100% full Ronald McDonald House there.  Medications had to be bought, insurance doesn't cover them cross state, and the supplies we have to purchase because our insurance now does not cover for them. Food to eat ( even though we buy from the grocery stores but know that you can't make a meal in a hotel room), gas so we can make our trip ,  and any last minute things that need to be bought while there too.  

The last fundraiser we raised almost $5,000. It took a lot of hard work on our part but it was worth every second of it, and know that we needed every single penny of what we had. 

With that said knowing we'll be gone once again for about the same amount of time,  we need to raise as much or close to as much as we did the last time, and to plan for extra time should any complications occur again ( hoping not). 

So here is our first fundraiser.  A brand new 37 inch Vizio flat screen t.v.   Tickets are 1 for $10 or two for $15.  We need to sell at least 300 tickets to make this worth while and we won't raffle it off until we do sell that many tickets. So if it takes us a month to sell all 300 tickets we'll raffle it off then.  If it takes two months, three months, well I think you get the point.  So please feel free to share this with friends, family , your church, community etc.    

If your interested in purchasing tickets please email me at : reedfamilypa at yahoo dot com ( wrote this way to deter spamers).  

Oil change and tire rotation

Just kidding. Though it does feel like we do that from time to time with Maggie.

I can't get over how fast this week has flown by. Yesterday we packed our stuff and headed over to the Radisson because our time at the Ronald McDonald House was up. Being  at their short term stay rooms , you can only stay for up to a maxiumum of 4 days and since we would be here for 6 we needed to go elsewhere.

The Ronald McDonald House here in Cincinnati is a very popular place, and rightfully so. Its become our second home and each time we've stayed we've always made friends, and talk and meet with so many different families.

Maggie and Hannah made friends with a little girl named Megan who is 8 yrs old. She has ALL Lukemia and we pray that she will make it through her bone marrow transplant. I wished I would have gotten an email or a facebook page , but I was to busy feeling sick from having been up all night throwing up. I'm not sure if I got a tummy flu or if it was from something I ate. But thankfully I'm the only one who got sick. Its probably my body's way of saying "your stressed out."  The girls gave each other a hug and we wished them all the best and that we would pray for them.  With that said later on in the day Maggie started to cry and cry , and it was because she missed her friend Megan.  I felt so bad because I couldn't really comfort her like I wished I could because I was afraid of her catching what I had. But I did tell her that it was okay to miss her friend and that maybe her friend will be healed of her cancer and we can be happy for them.

Other than that we had to kill 5 hours in between our leaving from the RMH and our stay at the hotel. That was a long 5 hours because I felt so awful. I don't think it would have been so bad if I would have felt better. But all I wanted to do was lay in a bed and go to sleep.  Once it was 3 o'clock we checked in , came up , and Tim went to bring the stuff up and I was out like a light for about an hour.  I don't even remember falling asleep.  But at almost 10 pm at night now I'm starting to feel a little more human.

Today is Maggie's cystoscopy and SP tube change. So we head over to the hospital at 1 pm to have it done at 2:30.  Maggie has not been  a happy camper having to wait to eat. So she made a rule that if she can't eat, no one can right now.
  We'll see what Dr. DeFoor has to say after the scope and make our plans to once again come down to Cincinnati for next spring or so.  I will say that I do still need the time to digest all of it because I feel like we've had so many changes so fast.  Good and bad ones.

We want to once again thank everyone who has donated and who will donate to help us. We know now that we do have to come back again , and for another long stay and not so fun surgery. He hope and pray it makes a big difference. Know that you too can make a difference by donating to help us for this next comingn trip and for Maggie's medical supplies that her insurance does not cover. We can't thank everyone enough for the kindness.

The verdict

Well the verdict is in. More surgery for Maggie.
Her bladder pressures continue to increase about 50% each time we've come back, and Dr. DeFoor described it as a 'very angry 'bladder. Which I definitely could concur with. When she had her SP changed out it literally took me two days before I was able to access her bladder again to cath her.   Before surgery Maggie was at 220 and her urodynamics was beautiful. Then in August is went to 97, now she's at 89. So that definitely was not the trend we were looking for at all after her surgery. Even her bladder shape has changed from the nice rounded look of a healthy bladder to a more irregular shape.  There definitely was no way that they could of predicted any of that from a bladder that was doing well with just 5mg of Ditropan.  Maggie is on a whopping doses of 15mg of the XL and it hasn't really done what they were hoping it was going to do.

So Dr. DeFoor is going to lower her dose of Ditropan to 10mg since she's been overheating and flushing with the 15mg and since the 15mg isn't doing much they are just going to lower it so she isn't flushing as much. Then I just cath her once a day and let her urine out of her SP tube the rest of the time now. Not to much different than what we've been doing all along because most days I've only been able to access her bladder once or twice a day. But I won't have to worry about cathing the bladder. I can just let it out with her SP tube.  We also have to leave the Gentamicin in longer in the evening too.

Thankfully they won't have to redo anything , but they are going to have to do the bladder augmentation . This surgery requires taking a small piece of bowel and putting it on the top of the bladder ( after removing a piece of the original) and this will increase the volume. Are there risks and such? Yes. Am I worried about them? Yes. Because any time the doctors mention these possible roads you could do down , we seem to manage to go down those road. Things just as more UTI's (ugh) , very rarely cancer ( which Cincinnati has not seen this yet in any of their patients). or that ever infamous bowel leakage ( remember May??) or leakage of the bladder. Ugh.  Of course we want to think positive and say " This isn't going to happen to Maggie." BUT with that said , Maggie with throw out stuff that the doctors here haven't seen their other patients do. LOL

Even Dr. Alam poked in and said that at the time as well as her bladder was doing that they morally and ethically couldn't have done an Augment on her. But now is the time. With the pressures being as high as they are it is starting to cause some swelling in her left kidney ( the only kidney she has mind you).

Also we have to work on Maggie's weight gain. She has lost some weight and is beginning to plateau. She has gained in height but she has lost weight. Being at 37 lbs.  Its a struggle to get her to eat , drink. Period. It's been that way all her life.  But she needs to gain before this next surgery. So we were given some ideas from the nutritionist that came in to add calories. Wish us luck on that because in order gain or even get more calories. You have to actually eat the food. And Maggie is such a picky eater. she is actually a low cal food kind of gal, Everything she does like to eat is mostly low calorie. Even pizza. She peals off the cheese. Doesn't like milk or milkshakes. All I can say is ' this is going to be fun.'

So we knew we were headed towards this path. Of course we've always stayed positive and were hoping we were totally wrong and things would improve.  Am I crushed? Yes.  I don't want to go through another surgery. In the same breath its the nature of the VACTERL beast.  It just makes me sad and mad all at the same time. Knowing she has to go through this. That we have to be gone from our other three children once again and may possible end up missing our third daughter's First Communion in May.

Edited: They will be adding in Periactin to stimulate her appetite. If we have problems with it, or it doesn't help , then they will try Megace instead.