colin&julia.com

I see you but I don’t

I hear you speak silence

personal obession turns me deaf

new life maybe reminded of fear not so sure

It’s my turn now

you figure it out.

Now that Parker seems to be back on the healthy train, along with Julia, the next item on our docket is to get Parker to sleep in blocks longer than 2 hours over night.

This week’s solution has us loading him up with rice cereal in the evening along with a 7 oune bottle right at bed time. So far its lead to him sleeping atleast 8-9 hours in a block.

Parker starts swim lessons this week at the Y as well!

After 4 and a half months of Parker living a less than stellar life (have we posted before that we figured out recently that he’s spent more of his life so far in the hospital than out?) Julia and I are so afraid to even say out-loud that we are basking in the light at the end of the tunnel.. but I think in the back of our minds we are both thinking it!

After expecting to be in the hospital for 10 days, we were so stoked to be able to roll home a meager 2 days after his surgery. Of course we got home to a mountain of snow at our house (after not having been home about a week)… but after about 2 hours of shoveling we at least were able to get our cars off the streets to comply with Lakewood’s snow ban.

After getting home Sunday, and now it being Thursday we are ecstatic to say that Parker is doing so awesome! In the first 24 hours he had a few issues with spitting up, but we think this was partly due to him being on regular formula (we have since switched him back to hypo allergic Elecare and that seems to have cured that). He also had a bit of a choking cough, but after confirming with our more than awesome Rainbow Dr.’s we stopped his Previcid doses and that seems to have licked that too.

Parker’s been pretty happy. His vomiting has stopped. His pukeiness has normalized, and his constant leakiness is a thing of the past! He is handling a normal feeding schedule of about 4 to 5 ounces every 3-4 hours with 6 ounces over night. His sleeping schedule is a bit mixed up but slowly but surely we are trying to get back on track and into a normal routine. The only obstacle in our way of that now: Teething.

Yup, Parker has started teething, and although its parental side effects are dealign with sleepless nights due to his crabbyness, we are pretty happy about it becasue it means all his problems haven’t sidelined him from maintianing a normal-to-advance development curve.

We want to give a huge thanks to our Rainbow Dr.’s: Dr. Todd Ponsky, Dr. Robert Parry, and Dr. Judy Splawski… all of which provided Parker with the support, care and miracle attention he needed to beat his Pyloric Stenosis! Thank you!

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.