Thursday, January 31, 2008

All About Connor...

Finally the day had come for our baby Connor's Bone Marrow Biopsy. I have to say I have dreaded this day for a long time now. The whole idea of what was to happen to him scared me but even more I think I was terrified of what they might find. I don't think Greg or I slept at all the night before. We arrived at the hospital in plenty of time to sit and wait and wait because the anesthesiologist was running late. Sitting around in an oncologist office is so very depressing. Connor enjoyed playing in the really nice playroom but watching the kids that come through for their chemo or radiation was the saddest and most terrifying thing I have ever been through. At the same time it made me feel blessed. We know we can get through anything because we have each other and our family and friends. Connor played with a really nice little 4 year old who was there for his chemo treatment. As he went back for his treatment his mother who had asked what Connor's diagnosis was told us Good luck, we are praying for you! Wow, her sweet little boy who had no hair left and was rather skinny but had the cutest smile was going into a treatment that is so hard on him and she was wishing us well.
Finally, it was Connor's turn for surgery. The doctor and the anesthesiologist and the nurse came out to walk us back. We got to take him to the operating room and kiss him good-bye and then the nurse took him so they could hook his IV up. All the way down the hall I could hear my baby calling for mommy. Talk about breaking my heart. So, of course, all the way down the hall mommy cried and Daddy kept telling me it would be ok.
Not too long after the doctor was back out in the waiting room telling me to come with him and that it went really well. As I entered the room I could hear my Connor snoring! Really loud snoring! Boy, was he getting a good nap. I sat down by him and held his hand until he started to wake up. Then the nurse started trying to dress him because he was getting cold and he got really upset. He kept trying to sit up and started crying. He was so confused and sleepy. I am so relieved that the biopsy is over and the good news is the doctor called us a few hours later and said he had looked at a stain of marrow under the scope for about 30 minutes and he thought the marrow looked great! He was sure he saw no abnormalities or luekemia! That was a big prayer answered. He also said his white cell count numbers were higher than they have ever been! Another answered prayer! Next week we will recheck his blood and then he felt sure we could start the special shots that will help him produce more white blood cells to protect him. We still have to wait for the official report from UTSW but the doctor felt really good about what he saw.
I know in my heart that all the many, many prayers that went up on Connor's behalf had everything to do with the positive results we have gotten so far.
Are we out of the woods yet? NO, but we sure feel like we are headed down the right path now.

A few days ago we couldn't find Connor anywhere. Greg found him in our bed, with my reading glasses on, pretending to read my book! Is he a teachers kid or what!!!

Sunday, January 20, 2008

Too Scary for Words

When I start this blog I have to start by saying what a trooper my little boy is! I know I tend to overstate how good he is but really I'm not. He amazes us with his attitude and his calmness. This awful disease my sweet Connor has is so scary to me because of how quickly it comes on and how fast he is completely taken over by whatever it manifests itself into that particular time. This last time was two days after Christmas and only a few days to our all important Bone Marrow Biopsy for him. I began to notice Friday afternoon some of the "signs" we see as he is getting another illness. He had a sore on his cheek and was not eating well that day and sleeping too much. That was Friday afternoon! Saturday morning he woke up and it was like he couldn't catch his breath and he was coughing and running a fever. I told Greg the night before I thought we might be headed to the doctor the next morning but we were running to the doctor. Our regular doctor told us it appeared to be Pneumonia but they thought we should go straight to the ER and get him admitted! She also said,"Don't go by home and pack anything, go straight there." A little frightening. After we got there the admitting nurse happened to be a good friend of ours from Jack's soccer and football team and that made me feel more at ease. She took such good care of us. After only a few minutes in the ER they told us we were definitely staying and they would work on admitting us. They hooked all the IV's and other monitors up and we sat and sat and sat. For a while they said his chest X-Ray looks OK, and so we think it could be asthma. We don't know where that would have come from. Then they would come back and say it was probably some type of viral lung thing and then it was a bacterial lung thing. We were very confused and scared because he appeared to be getting worse. Finally, late that evening after being there since 10 that morning we got to a room. Don't get too comfortable! The nurse couldn't figure out why we were in the isolation ward with lots of RSV kids if Connor had neutropenia. So, an hour later we got moved to a new room about 1/3 the size of the first room. These first two pictures are of Connor the first night. He couldn't sleep and layed out on his back against one of us all night. He cried, but not a loud cry, a scared little whine cry all night. It broke my heart. There was no bed so Greg and I traded off sleeping on the floor. Everyone keeps asking us why we both stayed and one didn't go home and rest. Honestly, because we were scared and he was really looking bad that first night. Neither of us wanted to leave him.
Around 5 a nurse came in and I told her I really thought his breathing was worse and he was grasping for air. She listened and said she would get his other nurse to check him. About an hour later he came in listened for maybe two seconds and said he thought he sounded OK. It happened to be the 20 minutes or so he had fallen asleep on Greg and Greg was also out. So, I sat for a few more minutes and got really upset. I woke Greg up and told him what happened and that I really thought we needed someone to listen to him. I guess about then was a shift change because the new two nurses came in and as soon as they hit the inside of the door they were asking if he had sounded like that for long! I was so relieved to have someone doing something other than just taking his vitals. They immediately got the doctor who in turn called the respiratory therapist and that room got hopping. Come to find out there had been a mix up between the ER and our new room and the breathing treatments he was receiving in the ER were not continued in our room all night long! It honestly could have been a really horrible mistake. So, we started with a 4 hour breathing treatment and then every 4 hours another one. Just after the first long one we could tell a difference. They got him started on tons of antibiotics and steroids to help his lungs recover.

This is Connor the second day. Already feeling better but couldn't go home because his breathing still wasn't under control. "Pops" as he calls them were the only thing we could get him to eat, but boy would he eat a ton of them. So, we kept giving them to him. Red, purple, orange any color he wanted.You can see almost as much down the front of his gowns as in his mouth.


We snuck Jack and Bailey into see him on the second day, they were really worried about him.
Finally, New Years Eve we got to take him home that afternoon. The other two kids were at Gretchen's so after we got Connor settled and into bed for the night, Greg and I went to sleep around 9! Happy New Year!!!
Where are we in the process of Connor's illness...
We had to put off the Bone Marrow Biopsy until the steroids are out of his system, because it would skew all the tests and give false amounts of white blood cells. We were going to call last week and reschedule it but then mommy got to go to the hospital too! It seems that while I was nursing my baby I caught something in the hospital and I am now home after 4 days in the hospital recovering from a bacterial infection in my lungs too.
Our prayer now is to keep Connor well long enough to do the biopsy and get him started on the right treatment to kick this disease!

Our Last Stop for Christmas 2007

Our last Christmas event was Christmas with Memaw and G-Dad in Sulphur Springs. We got there in the early afternoon and not too long after, Ok only a few minutes after, the kids started asking to open presents! We were so blessed this year we all got so many of the things we asked for and also so many surprises too. Greg and the kids stayed the night and I headed back with Sean that night because my sister and I planned out a fun day of after Christmas shopping! Yes, I hate crowds but I absolutely love shopping the day after Christmas and so does my sister. We make a pretty good team. We were actually at Target by 7 the next morning in the rain! Dedication. I really did pick up some great things for next year and then just had to buy a new tub to put all the new things in.
We were truly a lucky, blessed family this season! We enjoyed spending time together and continuing some fun family traditions. We also enjoyed starting a few new ones!
Cue the ominous music now...
Here is where it all goes down fast...

Our Granny

Christmas morning after playing with all our goodies for a while we headed out to Mimi's and Papa's for a quick visit with our Granny. We had a few surprises for her and she had her surprises for us. Connor didn't stay still very long, but the other two enjoyed seeing her and helping her open her presents from us.
After our visit, which was way too short, we headed out to celebrate Christmas in Sulphur Springs next!

And Finally Christmas Morning...

I know it has been weeks since Christmas, but I do have a really good excuse for not blogging sooner! More to come on that later.
Christmas morning around here is so fun. The kids actually slept until after 7 and then came into our room to get us up. Greg always goes to check and see if Santa really came and then we let the mad rush into the playroom to see what he brought them. Jack, my really big boy, got all his really cool new electronic toys this year! He loves his Nintendo DS and all the fun games Santa brought to go with it. Boy, they hit a certain age and all they want are really expensive electronics! He also got a new fun game for the family to play and some legos and a few other boy things!
Bailey as you can see is always thrilled with everything she gets. She laughs and yells and ooh's and ahh's over everything! She has such a great way of making you feel like no matter what it was she loved it! She got a lot of High School Musical "stuff", dolls and notepads. She got some more Princess dolls and makeup. Her big thing was her new TV with a DVD player built in. She loves it! Now I love it because if there are any fights she can go to her room and mellow out all by herself and watch a movie!

Connor, sweer Connor, really just enjoyed being with everyone as they looked at their stuff. He did finally get excited about all his new things. He got a lot of Little People things. An addition to his barn, a few more animals, some trainsand dinosaurs of course, his big thing was his ATV riding toy.When he figured how to hold the handle down and go, he was riding around the house all day long.



Bailey so proud of her new TV.



This is what my big boy did all morning! Found a quiet place and played his game and played his game and played his game! I guess mommy will need to set some limits!










This is my favorite picture all Christmas morning! Connor needed a bath and I turned my back and he was off to the races!