Tuesday, November 1, 2011

A Hitch...

We have some new test results that have changed the plan...

The test this morning showed that Sam has a fistula (small opening between the end of the colon and his bladder. 

The good news- is they will fix it tomorrow in surgery.

The bad news - is we have to stay in Cincy through next Wednesday. We cannot go home on Friday- I am bummed. I am not good at this... I miss home already... I miss the all children, the hubby, my vanilla lattes and everything else that is HOME!! 

I'm trying not to... I am trying to be brave and grown up but it is a challenge. Just want all of you out there that have taken your sweet kiddos to have surgeries, procedures, therapies, etc- that I did not give you enough credit and TLC. I am sorry. But please don't believe in that eye for an eye stuff and please shower my with prayers, comments and TLC.

Last night we stayed at the Marriott! It was quite nice and we had room service! Sammy ate his food in bed!!

He has been too wired to take a nap both yesterday and today.
After this morning procedure he asked if we were all done and going home...ahhh, no!

I am kind of a driven person and used to getting thing done! I love getting things done and I find myself pacing a bit while we wait for one thing or another or another.
Kind of felt like telling everyone- "hey we have some down time lets get this surgery done... now!"

I believe this time in Cincy may be a much needed lesson for me- gulp, 
in patience
a reminder of who's in control
in maintaining peace
in thankfulness

Must we Lord? Really?

One thing we know for sure is that we are in the right place!
They were not able to tell that Sam has a fistula at home- it wasn't until we got here that they discovered it.
We met both Dr's in the late afternoon and they are great!
They are so experienced and professional.
This week they have visiting Dr's from all over the world that will be viewing Sam's surgery through video streaming to an auditorium.

My goodness things have changed since I was an RN.
There are no longer serve 3 meals a day. Instead we order our meals when we want them and then they are delivered to each room individually. I kind of like it - no more wasted food and you get what you want!
The children wear their own jammies to bed and around the hospital. Once he has an IV he will be in the hospital jammies.
If you want something-go get it! The nurses don't do the beds- we do!

Surgery is scheduled for tomorrow at 12:30-3:30!
Sam's surgery has a 60% success rate.
If it is not 100% successful - where he has complete bowel control- he will go through a bowel management program and learn bowel control/ maintenance through this method. 
They do everything they can do so that the children live a normal life.

Please say prayers for him, for the surgeons and well, for me too- if ya can!
Thank you!!


Jennifer said...

So many prayers for you, sweet little man and a successful surgery!!! Thinking about you two!!!

Jennifer P said...

Prayers and thoughts for you both while you are far from home getting the best care for your precious boy.

Cari said...

Wow Jean! That's a lot on your plate and all while your out of your comfort zone, which is where God works best, right?! I'll be praying daily for you and Sam during this time away from home and for 100% successful surgery.

Jolene said...

1. I can't imagine having to be away from the family for that long either. I read about on blogs and like you, never give them the credit they deserve.

2. You have my prayers right now as you are away from the family. I will be praying for your little man as he heals and I pray that the surgery is 100% successful!

3. Where exactly are you all from? We're in Michigan and looking at Cincy for our little man with SB (from Fujian province).

Many blessings and prayers to you both!

Karen said...

Praying for you and Sam. So glad they found the fistula and can address it during this surgery. I will pray during his surgery (for both of you).

Faye Verquer said...

Prayers coming your way, if you want to "chat" while he is busy in surgery feel free to call me! If you need a visitor to keep you company let me know. You are an AWESOME Mom and you will find the strength to get through this and we will ALL pray you through it. This time will fly by and you will be home in no time at all! WE LOVE CINCY CHILDRENS. They are the BEST! We have a friend there this week with their baby girl having Chemo for 6+ hours each day, I am going to stop up to visit with them too, so let me know whats good for you and I will make 2 stops at the same time!! I can find a Vanilla Latte for you, where do you get them from? The cafe there is pretty awesome as well.

HUGS to you and your sweet boy.


Tesseraemum said...

Aww, I'll definately be able to come down before you go.
I'll email you.
We'll pray the week goes quickly and he is 100% No "maintenance"!

Chris said...

Prayers...the "no control" is the worst...

Sarah said...

I will be praying!!!

Blogging Friend said...

I am so glad that you are in a great Children's Hospital. They were able to find the fistula that the other hospital was not. This is the main reason that I push for Parent's to take their kids to a Teaching Facility because they look for things that are not always obvious. Unfortunately other Hospital just do not seem to be able to do that. It is sad I know.
BTW, I also push for adults to go to Teaching Facilities too. Had I not taken my own advice I probably would not be alive today. I was told from Doc at small hospital my heart was normal, but less than a month later I had a 95% blockage in a main artery. It did not show up on normal test for the Cardiologist at Teaching Hospital decided to keep looking. He also discovered I also have other severe heart problems. This Doc was suppose to be the BEST Heart Doc at the small hospital. Again I am so glad I went to the Big Teaching Facility!!

I will keep both of you in my prayers, and just try and be patient. Remember this is what is best for little Sam. It appears he is in very good hands and this time will help you both bond with each other even more. You are an awesome Mom and all your kids love you very much.
Hang in there. Wish I lived close by I would come sit with you. Unfortunately I am a long long ways away.


Matilda Joyce said...

I don't know if I feel worse for Sam facing the surgery or you facing all that time away from home!

Take a deep breath, give thanks for all that God is doing, and look forward to this time to get to know Sam in a special way, and to allow him to have special time with you.


Karin said...

Oh sweet friend...I know it is so hard. Just take one day at a time and try not to look too far ahead. Keep your laptop handy so you can stay connected to friends and family. It helps me SO MUCH when my kids are in the hospital. I don't feel so isolated then. Praying for you...HUGS!!!

Wright Family said...

Could you think about this time as a time God has given you as a "set apart time'- perhaps partly to seek him (partly to do a little online shopping, in peace and quiet) ??? ...catherine

Holly said...

Praying for you and sweet, Sam, Jean!!!! : ) Big, big hugs to you, too. Love you, bloggy friend!

Sue said...

So sorry that you got delayed in Chincy. I will say prayers for everyone in your family......

Stacy said...

PRAYING!!! We LOVE Cincy and the colorectal team! Any chance you are going to try to stay at the RMH? There are not enough words to describe how incredible that place is! Solomon had a blast there! HUGS...praying!!!

Angie said...

Praying for 100% success for Sam's surgery, and your ability to sit and be peaceful. I'm with you...that's hard when you're used to having so much to do with lots of littles at home. Down time? What would I do?

RJ said...

Just wanna say WELCOME to Ohio! And your guy may just be the most handsome thing I've ever seen (tied with my little guy, of course!) Hang in there!

The Heald Family said...

praying for you both - that you will rest in Him:)
I will be praying during those hours - I know how long those hours can be!

Sally-Girl! said...

I bet you and I slept in the same comfy parent beds last night! Yes one day at a time! When you feel anxious about anything reel yourself back to the present moment with Him being your comforter! You can do this!

Praying for Sam from Philly!

Difference2This1 said...

Prayers everything goes well. Bummer we still don't live near there (we used to live just south of there in KY). Prayers for encouragement and endurance for you also. Blessings, Jennifer

From the Erben Gang..... said...

saying prayers. I understand the goal orientated, lack of patience thing...i am similar and I feel for you. enbrance this alone time with your little boy!

Holly said...

The Team at Cincy rocks. We didn't spend much time with Dr. Alam as Elaina didn't end up having any urological issues or fistulas but everyone else was great! We loved Dr. Levitt and Dr. Breech and her team, although you obviously won't be needing her as she is a pediatric gynecologist! :) Elaina was in Cincy for a whole month. NPO for 2 weeks! not even an ice cube! And she did great. You can do this! Play room is on the 4th floor, ask when he can go...it helps tremendously...there is also a parent laundry room and if you are alone, you can have a meal delivered to the nurse station and they will ring you when it gets there and you can have a nurse sit with him while you go to the lounge to eat alone. (He has to be NPO for awhile if he is having a PSARP) You can also ask for Child Life to bring in puzzles, play dough and crafts to his room! :) email me if you have any specific questions! Blessings, Holly hollymac828@yahoo.com

Dawn said...

Just saying what has already been said by these great gals... but You both have been set apart for this time together... and it can be a special time for you both. Funny that your sweet son was ready to go home too. Remember too He can reach you here in this time and it can be a blessing time.Lord Heal little Sam all up and pour love down upon them both...

Jennifer O'Cain said...