Thursday, May 6, 2010

Where to begin...

It has been quite awhile since we posted last.  I have started to post a few times, but wasn't really sure what to say, or I got interrupted, or I just wasn't in the mood.

First off, our friend Carter Cates  is not doing well.  Sean and Chelle have not had a chance to update their site yet, but I have been following updates on Facebook all day.  Carter is in severe respiratory and renal failure.  About an hour before I started writing this Carter was taken to surgery.  At the time I started writing this Carter had already had a bronchoscopy and was intubated.  They are now attempting to place a catheter in his right jugular so that they can start dialysis.  This is very severe and very scary for the Cates family.  Carter has been through a lot in his short life and he just can't seem to catch a break lately.  Carter's website is , please keep this family in your thoughts and leave them a guestbook message to let them know that you are thinking of them.

Now I want to go back in time a few years.  Two years ago Sam had been transfered to Children's Hospital of Wisconsin Milwaukee from the NICU here in Appleton.  We still had no idea what was wrong with Sam.   He was just over 8 weeks old.  It would be just about a week before we got a diagnosis and started to attempt to figure out what the future had in store for Sam.  The future looked pretty grim.  Everything we read on line about Microvillus Inclusion disease was pretty dire.  We didn't know about Omegaven.  We had not yet found Bo's family.  We were very alone and it was a very scary time.

Fast forward two years.  A short while ago we were contacted by a family in New York.  I almost deleted the email without reading it, the subject line said "We don't know what to do.  Can you please help?".  I thought it was spam.  For some reason I opened it anyway and this is the message that I found:


Dear Mr. and Mrs. O’Conner,

First off I can’t tell you how much of an inspiration Sam has been for us right now. My name is Scott Shutka and my wife is Kristy. We live on Long Island in New York and we have a 17 month old boy named Jackson as well as a 4 week old boy named Bradley. We found out over the past few days that Bradley has Microvillous Inclusion Disorder much like Sam. I am sure you know the pain and unanswered questions we must have. I am not very computer savvy so it would be easier if I were able to talk over the phone. If you have any time in your busy schedule day or night that you are able to speak to us, we would greatly appreciate it. We really need some answers and the doctor’s don’t seem to know very much about this genetic disorder right now as they are awaiting guidance from a gastrointestinal specialist. Most of what I have learned about it is from online resources. I was hoping to get more insight and guidance from anyone who has personal experience as that is the best resource around. We thank you in advance for any help you are able to give us. "

Well, at least I didn't delete it.  We have been in contact with Bradley's family through email and phone calls ever since.  While our hearts break for them as we know exactly the range of emotions that they were experiencing, we were excited to have the opportunity to share out knowledge and experiences with them.  We were also able to put them in touch with Bo's family so we were able to almost double our knowledge and experience to help this family out.  Within a few weeks of our first conversation, Bradley was able to start receiving Omegaven while his bilirubin levels we still relatively low.  They are just starting to make plans to take Bradley home.  It is amazing how different their experience over the last few weeks has been from what we experienced when Sam was diagnosed.  They are still working though some uncertainty and red tape, but I truly believe that they will be much better off because of Sam's and Bo's experiences.

Bradley's parent have just started a Caringbridge site recently for him.  If you would like to follow his story, please visit:

So what's been going on with Sam?  Not much really.  Sam has been battling a spring cold along with the rest of our family.  He has been very active and loves to be able to spend more time outside now that the weather is nice.

We had our first appointment in Madison a few weeks back, and it went well.  We talked at length about where we would like to go with Sam's care and what our expectations are and everyone there seems to be on board.  We will be back down in Madison for another visit in June as we are now officially moving all of Sam's specialty care from Milwaukee/Boston to Madison.  We will still be seen in Boston and they will always be our secondary care team for Sam.

Unfortunately this has not completely solved the dilemma that we are in.  We were hoping to be able to have Madison provide Omegaven for Sam.  As of today it sounds like that is probably not going to happen.  While we can still hold out hope for things to work out, we need to be realistic at the same time and plan for the fact that the probability is low.

So where does that leave us?  Well, to be honest it leaves us in a very very scary situation.  I am traveling to Boston in a few weeks with Sam, while there we will receive a 30 day supply of Omegaven.  One month later we will do labs locally and have another 30 days shipped to us.  If we do not return to Boston in July, it will most likely mean the end of Sam's Omegaven journey.  We are looking at the possibility that Sam may need to go back on the dreaded intralipid that caused so much damage to him two short years ago.  Because Sam is older now, he may handle intralipid just fine with no adverse reaction, but the idea is still not a pleasant one and this was not a decision that we ever wanted to have to make.

We simply can not afford to continue to travel to Boston every eight weeks.  When Sam was born with Microvillus Inclusion Disease we went from being a two income family to being a one income family.  Deb works part time, but that barely makes up for the income loss that I take every year by taking FMLA leave when Sam is in hospital or to travel to Boston.  Raising Sam has not been cheap.  The money that was raised almost two years ago during Sam's benefit is just about depleted, and we would like to keep a small reserve  of that money in the event of any urgent situation that might arise for Sam.

We still have two months to get things worked out, but everyday that goes by gets us a little close to that day when the Omegaven may run out.

Well, this turned out to be a bummer of an update.  I will try to get a happier update and some new pictures posted soon...

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