Updates on Nolan

We went to the Urologist on Monday but don’t know much more than we did the week before. We go back in five months at which point all the swelling will be gone and he should be able to figure out the next step. Meanwhile we are supposed to keep an eye out for any urine coming out of the gap, if we see that it means he has a fistula and he will be having corrective surgery in the fall. The Dr said the fistula would be “easy” to fix but would still be a general anesthesia/intubation situation. And yes, another catheter… Ugh.

On the bright side of things it has been nice enough outside to spend most of the day in the yard (or the neighbors yard). Nolan loves to be outside so we are both loving the sun and warmth. Yesterday we took a push toy out on the street which he enjoyed. He fell to his knees several times but seemed to know just what to do and got right back up. After the third fall he complained a little but I think some of that was him getting tired from walking so far.

I look forward to introducing him to the park near our house. I have not been there but our neighbor says it is a good place for little ones and will satisfy his need to climb. It will be so nice to get him out of the house and for him to be around other children. He has been comparatively limited in his exposure to other children because of his health issues, but RSV season is over now and we are both ready to get out there! I hope to also introduce him to water this summer, by 2009 there will be an “aquatics center” at the park near our house so swimming (well, wading for now most likely) will be a good activity for us.

Happy Spring everyone!

In “toddle time” there are some photos from his first easter egg hunt at Mimi and Dindin’s; lots of families come over and spend the morning searching for treats amongst the trees. There are a few photos with his Aunt Fab who came down during his surgery to help out (Thanks Aunt Fab!), some of him playing with the wind chimes Mimi got him as a get well present and there are a couple of bath shots just to embarrass him later in life…

As Maria posted Nolan’s surgery went well though it took about one and a half hours longer than expected. I was pacing the halls afraid something had gone amiss in spite of my Ativan…

I got to be with him in the PACU to help calm him down and see if he would drink anything (he took juice) which kids have to do before they will let them out. When the Nurse took me back I could hear him screaming his displeasure before we got around the corner. I sang to him and snuggled him in warm blankets and watched his breathing and heart rate slow down on the monitor. I think we were both equally happy to see each other. We took him home about three hours after they finished surgery.

The week + after the surgery has been harder than I thought. Nolan has been out of sorts from the drugs (codeine makes him manic apparently) and in pain from the incredibly long catheter he had. The Dr. thankfully took out the catheter on Monday (again, holy smoke that was long!) and he has been better but still not the same happy camper as before. His sleep habits are also out of whack so we are having to get up all through the night. A few nights were pretty much all nighters, the medication he was on to prevent bladder spasms made him restless so he couldn’t stay asleep. He is off of it now so we are hoping he will settle back into his normal habits soon. I have spoken to a number of folks who have assured me that this is normal, that it often takes two weeks for them to get over the experience. I am personally looking forward to the return of Nolan, it has been stressful having such a fussy, sleepless toddler; I guess I have been pretty spoiled personality wise.

Just in the past two days he has finally started eating again and making up for lost time. He wouldn’t eat or drink for the first few days, so much so that I used his Gtube to keep him from withering away. After the third day he started drinking again but was not interested in food until Monday. Now he is eating all day! We are hoping this is going to continue and his weight will start heading up towards the curve again. However, Nolan likes to keep you guessing so we aren’t counting on it.

The only other potential bummer is the Dr. saw a “gap” in his stitches that could be just skin level or it may go all the way to/thru the urethra which would be bad. I couldn’t bring myself to ask what exactly it would mean, I wasn’t ready to hear the word “surgery” again. We will find out more on Monday when we see the Dr again. I still won’t be ready to hear he needs surgery, can’t we just duct tape it?