Tuesday, October 21, 2008

Pre-op, Ophthalmology and more

Well, we had our audiology and speech evals yesterday, Monday, at Sloan. When we got there I was told that the pre-op for the port was scheduled for the 29th of October and the port placement surgery was scheduled for the 31st. In all of this craziness the one day I wanted to be more than normal for Katie was Halloween. So, I asked if we could change that day to that Thursday so that I would be home for her and they said they would check and let me know. We had the audiology exam and the speech eval, went back upstairs to the pediatric day hospital, met the nutritionist and headed home. About halfway home the pediatric surgeon's office called me and told met that I had to be in there the next morning, today, Tuesday, for pre-op and they could schedule Mike for surgery on Thursday. I called Matt to run it by him and we decided to make it a go.
So, that brings us to today. We got in there for a 9 o'clock pre-op appt. First Mike got his blood drawn then we had to see the surgical nurse practitioner. She examined Mike then spent a good 30 minutes explaining the port procedure to me while my Dad took Mike out to the playroom so I could hear what she was saying without Mike screaming in the room. After that I was able to play with Mike in the play room and then we had to see the surgeon. That was grueling. He had to examine Mike to see if he could feel any good veins to place the port in and then came the tough part. The testicular edema reared its ugly head again. The surgeon spent quite a few minutes examining Mike and determined that there seems to be testicular hernias in both testicals so he is going to need scrotal surgery between the first and second rounds of chemo. He started to explain the surgery but I told him that if that was 10 weeks away we would discuss it in 5 or 6 weeks because I needed to get through this Thursday's surgery and the start of chemo.
Anyway, after that exam by the surgeon and signing yet another consent form, we were told that Mike still had to get an EKG done for the pre-op but we had a 12 o'clock ophthalmolgy appt so we were off to that first. Thankfully, they put the drops in his eyes first and let him play in the play area of the waiting room. Now, for all those of you who know me, you know I have a thing about eyes. It comes from eye Dr appts every 3 months, 2 years of patching and 2 eye surgeries so the eye Dr appts are not my easiest appts. When Mike's eyes were dilated enough I brought him back to the exam room. Since this was a pediatric ophthalmologist they were prepared. 4 nurses, me and a swaddling sheet. 1 nurse holding his feet and legs, me holding his torso, 1 nurse holding his arms, 1 nurse holding his head still, the eye openers and the Dr himself. Thankfully, that was the best result appt all day. The Dr determined, there is still slight damage to the 6th nerve but the swelling is all gone and he isn't sure if the 6th nerve damage is even going to be permanent! Mike's eye is looking so much better so I am hoping the damage will clear up over time.
So, after the eye appt we had to head for Mike's pre-op EKG. Thankfully we didn't have to wait too long for that and Mike was as good as I could have hoped a 2 year old to be getting 12 leads attached to him! We got a good reading and headed back to the pedi day hospital.
We finally got the all clear for surgery and as we were ready to leave we got the notification that after surgery and recovery time on Thursday Mike will be getting his first dose of chemotherapy.
Now, with all of that clinical stuff out of the way, I am beside myself... I know Mike needs the chemo and I know that this is the road we have to travel to get him better but I am so worried about things. Since no one has been able to identify this tumor are we using the right drugs? How long will it be before we know if the drugs are working? What if we have to switch meds, what will that do to his little body? Will he be ok with the meds? Will the side effects be too much on him? Will I be able to handle all of this with him and still be there for Katie as much as I want to be? I said to my friends this weekend, I cry in the shower and pull myself together for the rest of the day so that I can be there for the kids and that's how it's going to have to be for a while... I know we will all be ok, I have to trust that and believe that.
Again, I thank you all so much for your prayers and good thoughts. We have a long road ahead of us so please, please, please keep them coming...



jennifer said...

hey momma - i cant believe what im reading...i want to cry right along with you...love ya lots, here for you, whatever i can do to help, dont hesitate to ask...