Monday morning bright and early we had to be back at Midwest Radiologic Imaging for Keegan's CT w/ contrast. I went alone with Keegan to have daddy meet up with us around 9 am. We got there, signed in and I managed to find a seat where I could unbundle lil dude, and relax until our name was called. A couple of minutes later the receptionist called me up to the desk (as I wondered how the heck I was going to moved ALL my stuff to the front counter then back to my seat-I said to myself screw it, take the kid and come back as quick as you can-if someone wants to steal something they obviously need it more than me). I had to take this 7 oz bottle back to my seat and try to feed it to my 2 1/2 month old, I was so worried he wouldn't take or that it would make his sick, all he has ever had EVER was formula. But to my surprise he took the whole thing!
Ry got there a little while later, after I had been called back to a different sitting area. We were waiting for the NICU nurses to come down and put his IV in for the contrast. When they NICU team finally got there, we were called into the CT room. I set Keegan's head in this little trap thing and layed his tiny body down. Immediately the nurse started to attempt to find a vein. She was not having much luck! She finally thought she found one and pricked him once. When they hooked up a needle to flush the line, we found out very quickly that nope, she was not in the vein. Keegan was screaming at the top of his lungs at this point, he was NOT a happy baby. She then decided she wanted to try the other hand. She walked around the table with all her stuff and attempted the other side. After 5-10 minutes of searching for a vein, she decided to stab his yet again. I thought this time we would get it for sure, she was almost positive she was in a vein this time. NOPE! This one even started to bleed everywhere. Keegan had just calmed down when, he began screaming again, and really I can't say I blame him. I mean it's one thing to be IV'd once, but 2 twice with no luck! The nurse kept apologizing and the doctor that oversee's the CT's decided that he was going to have his CT w/o contrast.
I went to sit out in the 2nd waiting area while Ryan stayed in the room with him while he got his CT. It was completly finished in less than 10 minutes and we were on our way out of there. Next came the waiting.
Since we Sara (His nurse practioner at Riley) wanted me to make my own appointment, they really had no idea when this would be done. This being said, I pretty much knew I wouldnt hear from them on Monday. On Tuesday I had a meeting with First Steps to put our plan for Keegan's PT in place and really didn't expect to hear anything from Riley that morning, but when they didnt call early afternoon, I began getting a little worried. Around 3 our time I decided to call to see if anyone had even taken a look at the scans yet. I left a message for Dr. Walsh's nurse to call me with the results. Since this was at 4 pm their time, I knew it probably wouldn't be until Wednesday morning till we heard something.
When my phone rang with the "All I want for christmas" ringtone that is currently assigned to unidentified number, my stomach flip flopped! When I picked up the phone and Jean, Dr. Walsh's nurse was on the other end, I suddenly felt so sick. What was she about to tell me, should I got in another office so as not to make a blubbering fool out of myself? When she then told me that the scans came back CLEAR, the biggest smile spread over my face. I believe I then asked her if she was sure and then delved into the whole bloodwork question. How can he have NO TUMORS but his blood work shows he does. Then I remembered back to the information that Sara had given me recently. Sometimes these levels are higher in newborn babies and it really isnt known why. And since when his blood was drawn he was 2 months old but only 1 month adjusted, maybe that was it. But really I decided not to try to rationalize it; medicine is weird. He also had LOTS and LOTS of people praying for him! That had to play a MAJOR role right?
But anyway here we are December 19th currently Free and CLEAR of tumors. This obviously doesn't mean it will always be the case. That is why we are being followed closely; because that is one of the symptoms os SGBS, tumor in the abdomen. I felt so blessed today to be able to take him to his 3 month photo shoot at JC Penny's and really have the whole tumor issue off my mind. Don't get me wrong I still worry, because that is my nature and because my child is special and does have a genetic syndrome, but I am much more at ease!
I just wanted to THANK everyone for all your prayers and support! I am forever grateful for all of you who have prayed and passed along our story to those you know that can and will pray for our family. You will never know what it means to us! I will soon have a little button you can snag for your blog or profile that says something to the effect to pray for Keegan, my blog designer Jen @ The Blog Cafe is working on it when she gets back in town.
I am gonna post his 3 month pictures when we get the CD on Thursday, there are some really cute shots! I can't wait for everyone to see them! Well, I am off to dinner tonight with some great friends-so that's all for now, never stop praying!