We are home. Read on.
Here is T getting ready for his CT scan. I told him it looked like he had Fruit Loops on his head!
Waiting for the test. He did great. This one isn't too bad it only took about 20 minutes. The MRI took over an hour. Chris went into that one with him while I sat in a very comfy rocking chair. At this hospital he brought a movie and wore glasses during the MRI which he could see the movie screen. Very Cool!
This is recovery after the embolization. They were able to cut off 85% of the blood supply which sounded great to us. When we went into recovery he was in a lot of pain. He was crying and just looking at me with these sad eyes and said, "I don't want to stay here" That is one of the hardest things ever. To look at your child in pain and you can't do anything about it. His poor ankles were so sore from laying on the table for so long. They gave him some medicine and he fell asleep soon after. We were there for about 2 hours waiting for our room which ended up being a private room. NICE!! Dr. Snyderman came in today (Jan.1) He said that his surgery would be done in 2 surgeries because it is so big and difficult. We were released from the hospital and went to get dinner and groceries. At 4:30 Dr. Snyderman called to say there was an emergency that came up and they had to reschedule T's surgery until Wednesday. UGH! He apologized but said his tumor is so big and the surgery is going to be so difficult that he really needed his whole team and all of their concentration. I was so disappointed, but you can't argue with that. I was happy that he called personally. He then said it would also give the tumor a chance to shrink a little because they cut off some of the blood supply. He said his surgery would be on Wednesday and then again the following Monday. He said "So I guess you can go home." T was SO happy. We checked out of the Ronald McDonald house and got back on the waiting list for Tuesday. We are home and it feels great to be back in our own beds even if it is just for a few days!Thank you for your kind words of encouragement. We read them all today in the hospital and he loved them. Your kindness and love mean so much to us and him!!
17 comments:
Oh, Joanna. I was just seeing if you had left any information before you headed out and to send you all a note of encouragement. It is great that you are home for a few more nights and that they were able to cut the blood supply. Perhaps this is a little blessing in disguise and the tumor will shrink more than they expected.
T-you are so brave! Being in the hospital and being in pain is awful. Just know that you can do it and it is only for a short time. You have so many people praying for you and your doctors.
Know you are in my thoughts and prayers.
xoxoxox
Hang in there T! How nice that you got to come home for a little while before the surgery. Hang out with grandma and your Family and this will all be over before you know it! We love you all!!!
Bummer that it won't just be over today but you can't argue with what the Dr. told you! He sounds like a great guy! Hang in there T. You are so brave!!! We'll be thinking and praying for you! Love you all!
Oh my goodness! I just got on to go straight to comments (to let you know I was praying). I sure didn't expect to see the word "postponed"! At least you got to go home. I wonder who was more excited -- you or your siblings. Have a wonderful "vacation" from the hospital.
Love,
Mrs. Gardner
I'm so glad that he gets to sleep in his own bed in between all these things. I am so impressed with you, T. Hang in there, man. You too mom and dad!
Wow. that is good that he gets to come home between, but I'll bet you are ready to get on with it, huh? Keep up the positive vibes!
I got on to check the progress and it looks like you get to take some time off for a few days. T- you are so tough!! Have fun with your grandma and relax. You will do great. Your doctor sounds awesome and like he definitely has your best interest at heart. that's what you want.
Oh, Joanna! I'm so sorry it got postponed. The waiting is agony. Hang in there. This will all be worth it in the end.
Good luck. You will do great.
We are praying for you.
I hope your surgery goes well. Have fun with your Grandma. Get feeling better soon.
Love, Brooklyn
Joanna, just happened upon your blog. I'm not aware of what's going on, but I wish I could bring you dinner or something. We'll pray for your son.
I was disapointed about the delay with the surgery which ment that I would have to go home before you would all be home from T's surgery. But I'm glad that I got to spend these extra days with all of you. I Love being with all your family and am glad that I am able to help even a little.
We'll all be praying for you on Wednesday and next Monday.
Hi Tyler! I guess you fooled us. We were out of town on Friday, but you weren't out of our minds. Tabbie and Kylie kept saying all day "I wonder how Tyler is doing now..." We have lots of prayers left for Wednesday though. Keep your chin up! We're rooting for you :-) Mrs. Truelson
Hey, Tyler!
I just wanted to check on you and make sure you're doing well!
--Steve
Dear Tyler,
You don't know me, but you may have seen some of my postings on your blog before. My sister Margie works with your Dad, and she tells me all about you and your brothers and sisters when ever she gets a chance to see you. She has also told me all about your medical issues since October, and I have prayed for you every day. I even have your pictures up in my house upstairs and downstairs, so I am reminded to pray for you several times through out each day, and so that I can have a really stong picture of you in my mind every time I do.
I really can't imagine what it feels like to go through everything you are going through... but I'm sure it's not easy, and I can tell that you are very brave. You are so lucky to have such wonderful parents, family and friends. Every time I look on this site and see how many people love you and are praying for you it makes me feel really good!!!! I'm sure the waiting is difficult and that you can't wait for the surgeries to be over, but I do believe that everything happens for a reason... and maybe the extra time will give the tumor some time to shrink and make the surgery easier in the long run.
My husband and I would like to send you something special for when you get out of the hospital. Will you send me an email and let me know something you would really like??? My email address is
apizza120@gmail.com . We would really like to do this, so don't feel funny because you haven't met us yet. It will give us great joy.
I wish you many blessings always, and a very smooth and speedy recovery. You will stay in my thoughts and prayers!!!
With much love,
Amy
Is today the day, or has the procedure been pushed back?
I hope all is well.
--Steve
Dear Tyler, Joanna and Chris,
I'm thinking about you all today, and I'm hoping and praying that the surgery goes really really well. Tyler - you've got a whole team of people here in western/central New York pulling for you and sending you strength and love! ~Sara B
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