One Step Forward and Two Back

One Step Forward and Two Back
Posted 3/20/10
Neil and I got to spend the day with Parker. Sharon, Shayne and Alex had Karsyn and Logynn pretty much all day. I miss them so much. I am so glad Neil was here today with us. Parker had a miserable day with a new symptom, gas pains and bloating. I don't mean just a little bit either. His poor stomach is so bloated and stretched that his incision looks as if he has a string stretched across his belly and it has been tightened up to tight that the skin is touching and you can't really see the incision anymore. He is so swollen with fluid and bloated with air that a size 6 diaper barely will fasten.

It is so hard with a kiddo this small to ask if it hurts from the incision or inside or cramping, etc. So with an extra pump of morphine and no pain relief we think it is from such distention and air being trapped. It doesn't help that he is getting the Easy PEP breathing treatments that push air back down with force to open up the airways in the lower lungs and some of this air is pushed into the stomach and then you have narcotics on board causing the bowels to laze around creating an about to pop balloon. Poor baby!!

Parker is out of the PICU. He was moved to the floor at about 6pm tonight. He is in room 609. I am of course glad to be out of the "fish bowl" for my sake but not really for his. The ICU had constant monitoring and attention which makes you feel a bit more secure but also no privacy, or quiet time at all (and no bathroom). Yes, there is one bathroom for all the PICU parents and visitors to fight over and from 6:45 to 7:45 am and pm there is lockdown so you cannot leave the room (to pee or anything) and you cannot enter the unit either (this is for shift change and rounding).

Neil and I got a visit from the Radiation Oncologist about Parker's appointment on Monday and the pathology results that he had. Ok so here

is his news:
Parker will get 8 days of radiation on his lungs and none on his kidneys because they are clear and looking good....ok and then about 30 minutes later I get a call from his oncologist and

he says: Parker will get 8 days of radiation on his lungs and the pathologist here wants a second opinion from a Wilm's Tumor expert pathologist in Chicago but says that his cut areas of the kidneys have tumor cells so he will either need more surgery to shave these areas off or he will need radiation of the kidneys.

Ok so you can imagine the news from the first doctor is great and we are so happy then we get the news from the second as being almost the opposite.

I just spoke with a resident surgeon and with the charge nurse on the floor and told them what happened and that I want a copy of the path. report as soon as it is posted as well as a care conference with all of the doctors involved to get on the same page. Now we have to sit and worry all weekend as to what the results really are. So frustrating and nerve wrecking!!!

Parker's pain from the surgery seems to be controlled with the morphine drip and PCA but he is suffering tremendously from the gas pains.

I feel so bad for him.

He is getting better everyday but it seems like just as something starts to improve something else pops up. After talking with the surgeon though he said this is all normal responses after what he calls one of the most major surgeries of all. Cutting across every muscle in stomach versus up and down with the muscles is one of the most painful surgeries they perform. His little kidneys are trying and doing the best they can.

On a more positive note: Parker got his foley catheter out and has urinated on his own (if no urination occurs 5 hours after they take the cath out they recath the patient) but he went on his own thank goodness.

So we hope for a restful night.

Holy moly it snowed here a bunch. Roads are slick and it was pretty foggy earlier. I worry about Neil being out in the Denver traffic with the weather.

Parker's nurse tonight is great. He had a male nurse last night and wasn't too keen with it. Not that he was not a good nurse just didn't relate to him as well as the women. Kind of crazy when you get such a great nurse you set a bar and expect everyone to be the same so when you get a not so great nurse it can almost ruin your whole stay. Luckily though they have almost all been phenomenal!

Have a good night.

Getting ready to tuck my little Parker Willis in, say our prayers, kisses and hugs. He has woke up the past few nights and wants me to get into bed and cuddle. Has been perfectly fine with me!

with love,
neil and amy