Because Parker just happens to have friends in very smart places we now have an idea about the results from his lab work. These tests are telling us that Parkers surgery to revise his stoma didn’t quite have the outcome we had hoped.
He’s anemic because of the blood loss from the second stoma. There is some other stuff too. I’ll find out more tomorrow. I think the next step may be to have his lower stoma scoped to get a visual idea of what is going on in there. Is it possible that a staple is causing these issues?
Bottom Line: He needs to have his PSARP surgery performed…..sooner rather than later.
Originally we had planned to take Parker to CCHMC to have the procedure performed by Dr. Marc Levitt. This was before we discovered Parker’s many other health issues.
And got bombarded by the mountains of medical bills that have come with those issues.
I researched surgeons here at PCMC. I feel good about our new surgeon. But I also know that Parker’s case is anything but typical. And having the best possible outcomes from these surgeries is critical to Parker’s quality of life.
Critical.
Dr. Levitt knows our new surgeon. And our new surgeon is willing to touch base with Dr. Levitt on Parker’s case.
But it still leaves me wondering if I am short changing Parker’s quality of life.
The bottom line?
Finances.
The oh, so lovely bain of our existence. I’ll also need to reopen negotiations between our insurance company and CCHMC and see if the original plan hammered out two years ago will still stand.
This plan would only cover the first surgery of this two part procedure. We’d be on our own for the second act.
We could try and fund raise again. But believe it or not, fundraising is an enormous amount of work. And then there are always the people on the sidelines who like to make you feel like a worthless slob because you are trying to provide the best medical care for you son via fundraising.
I’m not sure I have it in me to go through that again.
The truth be told, even if we had both surgeries performed at PCMC we will be wracking up more medical bills than we have money to pay.
So we have a lot of thinking and praying to do.
Let’s face it. Just the extra chromosome is going to cause more than a few hurdles in Parker’s life.
I must be careful to not irresponsibly add any unnecessary obstacles to Parker’s future as well.
Our prayer request would be that Reed and I can make the very best decisions for Parker……..and that the very best outcomes can be realized for our little guy.
Oh, my goodness. Every time you get some good news, then there just seems to be bad news waiting around the corner to jump out at you.
How are you holding up?
I just wish I had a magic wand and could wave it over Parker and have his issues clear up.
But we will of course continue to pray for him. And you!
I pray that God gives you peace and wisdom. And that no matter who does Parker’s surgery, I pray that God guide his every move in the OR.
Tammy, of course you have our prayers. Just wish I could do more.
Keeping you guys in our prayers and praying for the best outcome for your cute guy. Sorry the new stoma surgery is still causing blood loss for Parky
Breaks my heart that he can’t get a break. Praying hard for you all….
I know you will make the best decision for Parker. You guys are awesome parents!!
(((HUGS))) – Parker is so blessed to have you guys – Your in my prayers and thoughts – Love you and many many (((((HUGS))))
Twitter: livingingrace
says:
Praying for you two.
Praying for wisdom and God’s will for all of you.
Oh goodness! I didn’t read your blog yesterday, or even the entire weekend I think. Many, many prayers for Parker, you and Reed. I know in my heart you and your husband will make the perfect decision for Parker’s well being.
The prayers sure don’t hurt though!
((Hugs))
Kay
Does your little one play with stuffed animals, more specifically, do you think he would like a stuffed bunny? Let me know. I would love to knit him a toy!
You definitely have our prayers. I so wish that I could solve the financial troubles though. It stinks that you have to worry about those, when Parker’s health is enough worry as it is.
Keeping your family in my prayers. Breaks my heart that you are going through so much. I can’t imagine how hard it must be to go through fund raising and all of the health stuff at the same time. Like you don’t have enough on your plate. I wish I could do more.
Head’s up……awards for you on my blog.
Praying…
Oh Tammy
I cant imagine how hard these decisions must be for yOU!! You are so brave. Of course I will continue to pray for all of you and hope the right decisions and guidance can be made.
Love you all,
Amy
I just found your blog from Kei’s site. My 8 yr old son was interested in the picture that was on her site and I told him I would look.
I was reading a few entries when all of a sudden I read about a stoma. Well of course for me that hit home because I too have one. I have had one since I was 15 years old. I kept looking trying to find out why he had a stoma and if it was for a colostomy, urostomy, or ileostomy. Finally found it – colostomy.
Anyway, then I was curious as to why all this information and why all the help was needed. As I read on everything started to make sense. (It’s hard coming in the middle of a book which I just did) When I went to the tab of ‘about’ that is when EVERYTHING clicked, and I knew I would need to say something. (already was planning on it, but now I am armed with infomation and knowledge so I don’t sound like a dunce)
I agree with your feelings on the medical field and insurance. I am glad that you are able to get the fundraising that you have already accomplished. Yes, I know that it is a big undertaking, but it can be worth it. I am impressed that you have undertaking it as many times as you have.
I’m not sure that any of this really helps, but I wanted you to know there is one other person out in the world cheering you on and honoring your love for your child. There is always a prayer in my heart and I will add Parker to that prayer. May the Lord continue to grant you with MANY blessings to help you endure through the tough times and even more through the good times.
I’m just a lurker, but was wondering if there was any way you guys could get the Katie Beckett waiver to alleviate the financial stress?
Always prayers from us. Both of us need a vacation to Tahiti or something, and as soon as I find a money tree, I’ll share.
((HUGS))
Twitter: livingingrace
says:
Hey, just got home and was checking in you and Reese. How are things?
Okay, to go out on a limb and give you some unsolicited advice and thoughts, VERY unsolicited…here it goes, just some ideas I have not heard you address, first, have you checked into Medicaid because of his Trisomy 21? I don’t mean to insult your intelligence if you feel like, “well, yeah of course I did”, at all here…Just got my wheels turning. Also, do you think, (if you had unlimited finances) that you would choose to continue at PCMC, or go somewhere else? Also, if you have insurance, I imagine that you can get your foot in the door just about anywhere? They do not have to know that your bills are insurmountable, I imagine. Again, please please don’t take any offense to my thoughts or suggestions, just merely trying to help. As well, if you need help with fundraising in the event that you consider doing it again, maybe my family could help somehow. Maybe donating items for an auction or something, in addition to other things?? My prayers are with you all in the decisions you have ahead. And, I know you don’t know me, but your family has touched me beyond comprehension at one of the most difficult times in my life; losing my son. I look forward to your blogs every day, and honestly pray for Parker each and every day! Please let me know how I can help!!!
It blows me away that anyone would make you feel bad for trying to raise funds to help your child. I just don’t understand people like that.
Praying that you two find some peace as you go through this decision making process.
I like the auction idea … just think if every family that reads here could donate some nice auction worthy item … just thinking out loud … I’m praying for you Tammy, Reed, Parker and family for God’s divine guidance in the medical choices you must face and make.
Tammy, I’m definitely praying that the Lord guides you as you make the BEST decisions for Parker… praying also that things work out with insurance and finances.
God bless!
It is so hard to have to make these kinds of choices. Your family will be in my prayers.
I know what you mean, fundraising is TOUGH!!! Praying for you as you seek to make good decisions for your family.
You have my prayers just as you asked.
ox