So we will be saying goodbye to our third child, "mega-sigmoid", on the 10th of July. We just received word that the surgery is on the books for a July 8th admission and a surgery day of July 10th.
Jed and I both kinda panicked when we saw that as it is only 4 weeks away. We had been anticipating having a fall date as we were warned that mid-summer is not an easy time to get in, especially this late.
We have had a GREAT week this last week with only 2 accidents. X-ray confirmed today that she is staying totally cleaned out!!! I think that having such a great stretch has made us apprehensive about the surgery..is it necessary? So we decide to email the Dr. with some of our concerns. I just laid out for him that we were doing great and that we wanted to make sure that overtime her body would not heal itself or that she could go way down in dosages or best case she would "just figure it out". I sent that email and about 2 minutes later got a response. he wanted to see if he could call real quick so that we could discuss our concerns. A minute later he called....where else do you get that kind of attention??
The first thing that he said was " I could sense concern, anxiety and fear in your email...so i knew we needed to talk'! I told him that I was afraid and excited all at once. He was great and very simply told us that the surgery is not mandatory but necessary for Madison to have a good quality of life. He is THRILLED with the results that Madison is having. He assured us that she will absolutely ALWAYS have to be on this amount of laxative and in the near future a much higher dose. He said that we can continue doing that if we are not comfortable with the surgery. Not really something that we are ok with as there are no studies that show the effects of such high dosages of ex-lax over time. He also shared that most families that opt out of surgery usually come back within the year and have complications or want the surgery.
He also assured us that he colon will never go back to anything close to normal. He was very positive about the size of her upper colon as it is "in great shape". Dr. Levitt said that the first time that he saw her films weeks ago he felt like the only way she would get a good result for life is with surgery.
sooooo....we have decided that this is the way that we will go! we have prayed that if we were supposed to move forward that a date would open this summer that would allow enough time for her to be back "on her feet" before school. This date will do that. Dr. Levitt said that there must have been a cancellation as he was shocked that we got in this soon. He said that he was very excited for Madison that she can get this done soon!
We will start to make arrangements and get all our ducks in a row. There is allot to figure out. Danielle and Ted had offered to take Olivia again so that is great! We are thinking that we will travel to Akron and spend the 4th of July weekend with the Lawver Family. That way we can make sure that Madison has allot of fun and then is rested before being admitted on the 8th. Jed has a call into his boss to make sure that everything is ok for him to be out of the office and working "mobily" for 2 weeks. Our biggest obstacle to overcome right now is lodging. please pray that we can get into the Ronald McDonald house those 2 weeks or so! It is the only thing that is close to the hospital and we both really want to be close as someone will be staying over and the other heading back. The hospital is in the ghetto of Cincinnati and there are no hotels in close proximity. The RMH is on the hospital grounds! You can not get your name on the list until 24 hours before your admission. It is a first come first serve basis..... so please pray, pray, pray!!
We will keep you all posted! Lots of love to all of you and your families!
Nikki
2 comments:
Wow! That is amazing. What great timing. It is absolutely wonderful that Maddie has a Dr. so willing to answer your questions within minutes. Prayers that everything falls into place for your living arrangements.
Doug & Brandy
I know several cancer families who treat at Cincy, or who have done BMTs there.
This family (below) is the most recent, and I've been in touch with them and know they (or one of the other families I know that were there that didn't stay at the RMH post-BMT) would both be happy to give you any insight they can if you can't get a room at The Ronald.
This family that's there currently, I'm sure, would answer any questions or help you out passing along their "inside scoop" as far as being temporary transplants to the area around the hospital.
If you want their email, or that of the other family who I've been in touch with for years, also who treated at Cincy, I'd be happy to give you either!
The current family, now that Matthew's (sometimes) out of the hospital, are at Arcadia Suites and have endlessly talked about it and the staff and how wonderful it's been. The mom is there alone most of the time with their son, and the dad is home with the other two children, and they partially chose it based on proximity to the hospital and safety. They have photos on the site, and many other comments over the months.
From their blog, here's what this family said about the place they found, "Greg has our living arrangements all figured out. We are staying at a place called Arcadia Suites in the north part of Cincy. A very safe place, very clean, very quiet, they are used to BMT patients, they give a hospital discount, indoor pool for when the little ones come to visit (Matthew can’t swim but the kids can), laundry facilities onsite. It has 2 bedrooms (a requirement) and Matthew will have his own bathroom. There is also a fold out sofa for when the little ones come to visit! It has a fully equipped kitchen too. So, I think we are all set! As soon as I know our new address, I’ll be sure to post it on the site!"
http://www.caringbridge.org/in/matthewk/
Praying for you, that you get housing at RMH, but if not, that God has the perfect place elsewhere for you!
Love,
Lisa Peterson
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