colin&julia.com

Hi Everyone…

A quick update: Parker had his surgery today… the short version: The surgeons performed another pylorotomy, slicing his muscle again and the tension on the intestine released immediately. This is awesome news as it was the simplest, fastest, and most non-invasive procedure they could have done. He’ll spend tomorrow getting back on the bottle horse and with any luck we’ll head home in a couple days.

The long story: after a weeks worth of tests and after an hour long conversation with our Dr’s yesterday, Parker’s was scheduled today to have a exploratory surgery that would most likely lead to a pylorplasty. A pylorplasty is where they deliberately perforate/cut into the small intestine and then reform/reshape/reconstruct it to better function. After that type of procedure Parker would then have a suction line put in his stomach and have it constantly pumped out to allow the newly formed area to heal over the course of 3-4 days. After that he would then spend 3-4 days getting sued to eating again. We are so stoked that the surgeons didn’t have to go to such a drastic measure. The exploratory part of the session revealed to the surgeons that his pyloric muscle was think enough to withstand a second slicing and it looks like this time it’s going to take properly.

The procedure went pretty text book, with only a slight complication. For an hour previous to the surgery the team couldn’t establish a new IV line. since Parker has had so many IVs int he last few months, most of his veins in his arms and legs are pretty blown or were too shallow due to dehydration. Instead the Dr’s opted to install a central line IV which is in the lower part of his neck -  upper part of his chest. It’s a bit larger than a standard IV and if he had needed a pylroplasty then he would have been fed through that line s well for the 3 to 4 days.

As of about 5 hours after surgery, Parker’s doing pretty well. He’s a bit sore as you can image after abdomen surgery and a mainline IV. He’s a bit horse from his breathing tubes, but he’s off an oxygen supply and slowly but surely becoming more active.

If anyone is interested in visiting, we are in room 3-510 at Rainbow Babies and Children’s Hospital. We are pretty wiped for the night and slowly becoming more relaxed… so any emails and calls we’ll probably start to return tomorrow. Thanks for every ones thoughts and prayers.

IT was big and fat and the doctor cut right through and it popped open!

We start feeds tonight

IT IS FINALLY OVER!!

Thank you to all those who were around us and listened to us and believed us.

Thank GOD for the strength to preserve despite many people trying to deny he had a problem.

Hey everyone… we hope everyone is doing well. 

We apologize for being off the map the last month… as some of you know Parker had a bit of a relapse with his Pyloric Stenosis over the last few weeks and as a result we have been spending a lot of time over at Rainbow Babies Hospital working with a great team of Docs to help determine how to resolve his issues. Pyloric Stenosis is pretty rare… and to relapse with it is even more uber rare, so our doctors have been pretty cautious with how to approach and fix his problem. We’ve been floating in and out of Rainbow for the last few weeks having different tests done and everything looks to be climaxing this week. 

As of today, Parker is heading back into Rainbow and he’ll be chilling there for 7-10 days. Starting this evening he’ll be dosed on a new medicine IV that will be targeting his Pyloric muscle with the hopes that it will thin the wall and allow liquids to pass though to his intestines again. Right now his thickened muscle only allows small amounts of liquid to pass through at a very slow rate… usually not enough to keep him properly hydrated or nourished. Within 48 hours (by Wed.) we will know if this non invasive treatment is successful. If it is, then we will be discharged and sent home on a oral supply that he will remain on for quite some time. If he continues to vomit while on this medicine, Parker will head into surgery on Friday. The doctors are hoping at that point to just simply re-slice his muscle and have that be it, and if so then we’ll be heading home by Sunday… If a simple slicing will not work… the doctors are going to deliberately perforate his intestines and reconstruct that faulty area to make it a bit larger and more functional… If they end up perforating his intestine (either deliberately or by accident while doing a simple slice of his muscle) then we will be heading home late next week. 

So that’s our latest update as we know it… although it seems every day seems our doctors revise our schedule. If we are offline next few days please forgive us if we are slow to respond to emails or voice mails.  

We aren’t sure what room we will be in yet at Rainbow, but Parker and us welcome visitors… just ring Colin’s cell for the latest update and room info. We are expecting to be at Rainbow for the next week atleast and are expecting Parker to under go surgery on Friday. 

Other than that we want to thank everyone for their positive thoughts, energy, and prayers.

2/10/08:

As it stands he still has pyloric stenosis despite the corrective surgery that was performed when he was 6weeks old. He either is the one in a million babies that has ever had this condition reoccur or his surgery was incomplete. We are trying to stay out of the Operating Room but if we can’t keep his formula down then we will have to go to the O.R.

Keep us in your prayers and we would love to see your faces so be pushy and just come over!

Bedtime is at 7:30pm so anytime before then is awesome.

I know it looks strange but he giggled everytime so I thought I would capture it on camera….

He is getting so big :)

I know it sounds crazy but it sounds like he says hello and yellow… listen and vote…

Does he say hello or yellow or neither or both?

Cambridge Room @ House of Blues

We will breath, we will dance, we will celebrate what we have accomplished….

thank you for coming to relieve us Mr. Good

-Mrs. Toke

How about an update…

Well first out of the gate, Parker is doing really well. We are creeping up on him being 8 weeks old this coming Saturday, but the weird thing is, he won’t be 2 months old yet since his birthday is Oct. 27. Weird… sorry of the tangent.

So yeah, he’s doing well. To catch everyone up… a couple Mondays ago, he was released from the hospital after being re-admitted. Parker tolerated his feeds and came home OK that Monday night. In hindsight he was probably suffering from being sick from a virus unrelated from surgery and that’s why he continued to vomit after his surgery and have diarrhea. The attention he received from over that weekend visit probably helped ward off some serious sickness… but unfortunately that wasn’t the case with Julia.

Last Tuesday Julia got very very sick and she had to be admitted to the hospital for dehydration from constant vomiting, a 102 temperature and other unsanitary symptoms. I swear if we didn’t have bad luck, we wouldn’t have any luck at all.

Julia only had to stay in the hospital one day but once home she still was down for the count, leaving me and Parker to fend for ourselves in an attempted to stay bio-hazard and sickness free.

After a few days Julia slowly but surely got back on her feet after getting her ass kicked by what ever she got. Parker hasn’t shown any further ill effects and I have seemed to be able to stay healthy through it all… although I keep waiting for a meteor to land on my head and off me for good.

This last weekend was very uneventful which was sorely needed. This week seems to be a bit better as well, but we take it day by day. Parker is sleeping usually in the evenings from 6 or 8pm until 2 or 4am which is a nice break for Julia and I to catch up on house work and/or sleep. At 4am Parker will usually eat and then go back to sleep for a hours or so. Our day usually begins at about 5 or 6am.

Parker’s still a pretty cranky baby most of the time, but I think you would be cranky too if you spent the first 6 weeks of your life vomiting and in pain. I’m not sure he’s used to trying to be normal yet. We still are trying to learn how much to feed him and sometimes it causes a vicious circle where we don’t feed him enough and then he’s cranky. Then sometimes he eats too much and then pukes, but not like before his surgery mind you. This in-turn makes him cranky and still wanting more food. On average though Parker puts down about 5 ounces at a sitting which is very good.

We want to thank everyone who sent us their positive thoughts and prayers. Every little bit helped, and the notes really helped keep us in a positive track when we were close to throw in the vomit soaked towels.

We are looking forward to getting healthy over the next couple of weeks and then introducing you to Parker come the new year.

The last 9 months have been a very long road, and no amount of time on earth could have prepared us for the obstacles that were set in front of us. We owe a great debt to all those who stood with us during our trials and we can’t wait to share Parker with you!

We are hoping now to set this blog back on the right path with jsut daily updates of our boring lives, and marking mile-stones in Parkers life.