Save Jace

So Tuesday night the 6th Jace was running a small fever off and on.  I was worried a little bit but gave him some tylenol and watched.  It got up to around 102.6 and he was really hot.  We took his socks and shirt off and tried to let his body cool off, really all he wanted to do was sleep, so we let him.

Wednesday morning around 6 he came walking into our bedroom.  They had rescheduled his surgery for noon so we didnt actually have to be at the hospital til 10.  So we pulled him up in bed with us and he was steaming.  Took his temperature and it was 103.5.  I KNEW that they would send us home and not do the surgery that day, so I called up their and talked to the nurse.  She said she had to call the neurosurgeon, even though she was pretty positive, like me, that they would reschedule it.  Well about 30 minutes later, the neurosurgeon called me at home and said “Hey I hear my little buddy has a fever.”  I said yes and told him the story.  He told me just to take him into his pediatrician and get clearance for surgery just to make sure that there was nothing really wrong like the flu or anything.  He said, “I;m a great neurosurgeon but a really bad pediatrician.”  lol.

We got an appt at 3 and the Dr said that it was probably just a little bug and that he was ok with them doing the surgery if they were ok doing the surgery on fever.  He said the only complications that could possibly arise were that after surgery they wouldnt know if the fever was from the bug or from the surgery, but they would treat it either way…so go ahead.

I called the neurosurgeon and they rescheduled for Friday the 9th.  At 7AM.  Which meant we had to be at the hospital at 5AM.  Better than telling a toddler he can’t eat in the morning and arriving at 10AM.

So surgery went as planned.  It started around 9AM and they were done within an hour.  They removed a golf ball size tumor this time. We found out they were inserting some Gliadel wafers directly into the resection so that chemo could directly be put ont he spot.  These Gliadel wafers are time capsulated wafers that send off secretions of chemotherapy directly into the spot.  This kind doesnt go into the bloodline.

He was in a lot of pain Friday so they kept the morphine coming, and he was really pissed that he was stuck in the bed again, but other than that, he was doing ok.  I stayed with all day and til he fell asleep around 9:30.  When they are in ICU, its almost ridiculous for me to stay there since he has a night nurse directly appointed to him and my only bed is a rocking chair.  I decided to go home and get some rest so I could be with him in the hospital.

When I got there Saturday morning.  He was just waking up.  he was cranky and the nurse asked me if he needed morphine.  But when I looked in his eyes, his eyes were clear.  He didnt seem to be in pain to me, just cranky.  So I said no, lets just let him wake up.  A few hours later the resident Dr on the floor came by and they checked his blood count and it was down to 7 from 11 before surgery.  They wanted to do a blood transfusion…but the actual Dr came back on the floor and said, “Obviously you dont know this kid, take him off the IV and get him some food and he will heal himself.”

And he did.

We were in our room by Saturday afternoon.  They removed the brain drain and the head bandage.  The nurse took out his ART line.  When we got up to our room, I convinced the night nurse to take out one of his IVs since he hadn’t had any meds or fluids through his IV since noon, and did they really need two of them.  By the next morning, we had convinced the morning nurse to remove the other one so he was completely IV free.  Well he thought this meant freedom so my child began running up and down the hallways.  To the playroom, to the front lobby (of our floor), to play with the trains and the balls.  He was crazy.

When the neurosurgeon came up to the floor, he said allright let me see how this little guy is doing.  I put Jace on the floor and he turned around towards me and put his arms in the air and said up…but I had moved.  It was my dads friend and Jace took one look at him and ran out the door and bolted down the hallway towards the playroom…full speed.  The neurosurgeon poked his head out of the room and yelled after him….”Hey Mr personality…didn’t anyone tell you, you just had brain surgery two days ago.”

Needless to say he let us go home.

So we get the staples out on Tuesday.  And we are also going to meet with the Oncologist who is going to tell us about a stronger chemo that he is wanting to put Jace on.  Apparently the one he had originally talked to us about isn’t getting many good results with the ATRT and he has some other things to show us about a study that is going on right now in Europe.  So we will find out about this chemo on Tuesday…but we do know it is “stronger and harsher” with the “stronger and harsher” results and side effects.

I have been crying all day.

They want to start his first round of chemo on Thursday. We’ll find out more on Tuesday.
Jamie

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