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The other news is that they admitted him to CHOP today.  Riley as you maybe aware has been having some feeding issues, hence his size.  He has gotten to the point that eating is a battle.  He gets upset and struggles with Carol he just doesn’t want to eat.  Today after his Echo Carol attempted to feed him his bottle, he had not eaten in 13 hours and he wanted no part of it.  Dr. Swast saw this and said we need to do something about his now.  So they admitted him.  He was admitted because of his feeding not because of his heart.  That is good news. 

They are going to address the feeding.  When I spoke to Carol a couple of hours ago they were going to put in an NG Tube (goes from his nose to his stomach, temporary).  They would then decide if they would do an NV, NT or G tube as a permanent fix.  The NV and NT tube would be put in by a Doctor and if he pulls it out a doctor would put it back in.  The NG tube Carol would be trained to do.  She, doesn’t want to have to do that Riley.  Can you blame her?  If they decide to do the G Tube it is a major surgery. 

So, as of now it will be at least 2 days in the hospital.  But depending on the course of treatment it could be longer.  Let’s hope our little man gets to spend his first Christmas at home!

Remember the most important thing Dr. Swast said, “he is stable”!

Keep Praying!!!

As many of you know our favorite lil man will have his Sedated Echo on Thursday.  So since we have less then 72 hours I thought we should start a prayer chain.  We need a Christmas Miracle or any Miracle for that matter for our Riley.  Please pray that Riley’s little pulmonary veins stay unobstructed so that he can be listed for transplant.  Check back on the web site on Thursday for an update after the Echo, you can check the Mom Blog and or the Aunt Chris page.

This being Riley’s First Christmas I am sure you will find plenty of pictures on the Mom Blog, the Aunt Chris Page and the Granny and Aunt Terry Page.  This will be a big day for our favorite little man.

Please feel free to pass along this email and ask others to pray as well, we need all the prayers we can get.

Thanks again for keeping Riley in your prayers and in your heart.

Aunt Chris

Good afternoon all our Riley readers… I wanted to give you a quick update.  Riley is scheduled to go home today around 4:00.  They increased his dosage of Plavix, which can only be obtained at the CHOP pharmacy, so they are waiting for it to be mixed special for Riley.

The little bugger has decided that he doesn’t want to eat.  So the started him on IV fluids so he doesn’t dehydrate.  They were worried that something might be going on and that is why he isn’t eating but they did an Echo and everything seems ok.  There is no medical reason that he isn’t eating.  Granny and I think that he is rebelling he is mad that he is there and he is most likely stressed out and maybe he has a tummy ache.  Not eating maybe the only thing he can control.  They have decided that they are going to let him go home as scheduled but if he still isn’t eating by tomorrow then Carol will call them and they will reassess.

Keep Praying!

I want to thank again everyone who came out to Applebee’s Day for Riley.  I don’t have any numbers yet but based on the shear number of people in the restaurant that day it had to be a good day.  Carol and Darren received some cash donations while we were at Applebee’s that was a very nice surprise we were not expecting anyone to do anything other then to go out to lunch or dinner.  If you were one of those oh so generous people an extra special thank you to you… As Carol and Granny said we had our friends old and new our family which has been there for us over these many months… Everyone from Lincoln, Roster, US Marshals Office, Nazdar, Voorhees Township, GCIT,  the Philadelphia Phantoms who seemed to come out in large groups with their wives, girlfriends and children.  We made many new friends that night as well.  Thank you just doesn’t seem to be enough but that is all we have right now.  And another special thank you to Jackie and Dennis for all they did to help put this day together.

If you read the site yesterday then you know that yesterday was a very sad one for Carol, Darren, Riley and our family.  While in the Cath lab they put in 3 stents, Dr. Rome would have liked to put a 4^th one in but the area he needed to get to was two small and he wasn’t able to get the stent in the 4^th vein.  Before Dr. Rome went to the Cath Lab with Riley he had the oh so dreaded conversation with Carol and Darren.  He told them that this was kind of a last ditch effort to keep the veins from becoming obstructed.  He doesn’t see the need to continue to subject Riley to surgeries and procedures that are not ultimately fixing the problem.  This was devastating to hear….  Carol went and tracked down Dr. Swast (who is just wonderful) the cardiologist she took Carol to a conference room and they cried and talked and she did say that they are running out of options for Riley.  They could go in and do the balloon again if the veins become obstructed but in the long term it again isn’t fixing anything.  They will go back in two weeks for an office visit and then in either 6 or 8 weeks they will do another Echo to see how the veins are doing.  They don’t seem confident at this time that the stents are going to be enough in the long term to keep the veins from becoming obstructed.  We need to prove them wrong.  We need all the prayers we can get that Riley’s little veins hold.  Please ask everyone you know to pray for the little man!!

We know you are all out there reading the site because our numbers for this week are almost 4000 visitors.  So I need you all to tell Carol and Darren you are here.  They are in a very sad place and I would be great if you could reach out and show your support.  Please sign the guest book and if you haven’t done so sign the online petition.

Thanks again for all of the love and support you continue to show Riley and his family.

Aunt Chris

It’s that time again… Thought I would give everyone an update in case you haven’t stopped by Riley’s site lately.

Riley had a Milk Scan done this past week.    True to form he acted like a little man let them do what they needed to do with very little fussing.  Carol was almost a little upset because he didn’t show any signs of getting sick so she thought they weren’t really going to see what was going on with his reflux.  But we have come to learn with Riley that what appears to be going on, on the outside isn’t what is going on in the inside.  While although Riley laid there like a champ, taped to the table, he never got sick but he was refluxing the entire time up to his esophagus.  They said that his reflux was pretty bad and needed to be addressed.  To do this they would need to do what is called a Nissan procedure.  He still needs to have his intestines fixed and there is also the issue of the G-tube.  For more information on all of these procedures please visit the Mom Page of the web site.

Carol was told that Riley needs a monthly (Synagis) shot that costs $3,000 this shot she was told is not covered by insurance, they have appealed this but we are still waiting to hear.  It was also suggested that they get a Pulse Oximeter for their home so they could keep an eye on his oxygen levels.  But, again the coverage for this type of equipment isn’t great so they are still exploring this option.  If you know anyone who works for a drug company or a medical equipment company please get in contact with me maybe we could get his shot or Pulse Ox machine donated.  Up to this point there medical coverage seemed to be great but we are now hitting some stumbling bocks on things that to me seem imperative for Riley’s life but are just out of financial reach for his Mom and Dad.

Applebee’s Day for Riley is fast approaching; please mark your calendars for November 11^th.  I am attaching a flyer to this email that you should bring to Applebee’s Day for Riley so they know you want to donate 10% of your check to Riley and his family.  In addition feel free to post and or distribute the flyer to your friends, family or co-workers, the more the better. (hit the contact us button and I will email you the flyer)

We are in the early planning stages for a Benefit for Riley and his family tentatively for April.  That month seems to be a good weather month and Riley will reach that wonderful mile stone of ONE YEAR OLD!  We are working on two locations and once it has been confirmed we will let everyone know so they can save the date on their calendar.  We are looking for volunteers to serve on the Benefit Committee…  The Benefit Committee will assist in getting donations for food, beverages (Beer, soda, etc), decorations, paper products, a DJ and or Band, as well as donations for a Chinese Auction.  We need commitment and follow through… Once I have booked the hall I will hold a committee meeting so that we can start making plans and seeing who has what contacts.  If you can’t be on the committee but you know someone who owns, works at, or if you own a restaurant, liquor store, party store, hair salon, or retail store of any kind that would like to contribute please get in contact with me.  We will need to start working on the details in the coming weeks.  I look forward to hearing from many of you because over the last months I have had lots of people ask me will there be a Benefit for Riley and his family and what can I do to help.  This is your opportunity no donation is to small or to large no time given to assist us is too small.  We will need everyone’s help to make this as profitable as we can for Riley and his family.

Riley is scheduled for a sedated Echo the first week of November and all of his doctors will be getting together to decide what to do about his reflux, watch for Carol to post with more information next week.

We are at over 500 signatures on our online Extreme Home Makeover online petition, please continue to point people to the sign to sign.

Riverside School District had another Denim Day on Friday I am still waiting to hear the results of their efforts, but thank you to the faculty, staff and students at Riverside School District for all you have done for Baby Riley and his family.

Keep up your prayers, thanks again for all your support.

Aunt Chris

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Well, since Aunt Terry said it best, I am copying her page from the guest book.  I know that not everyone reads the guest book so here is what Aunt Terry wrote:

Riley had his heart cath. The doctor worked on 2 of the 4 veins. He didn’t work on the other 2 because “they looked okay”.

He used a "cut balloon", the doctor was able to remove the blockages. He did tell Carol to expect more blockages.

Riley had general anesthesia for this heart cath that lasted from 10 till 2:30. Carol was told by a nurse that Riley charmed the workers smiling before he was asleep!

I arrived at CHOP about 3:30. Riley was still in the Cath Cardiac wing. He was asleep almost the whole time, which is good. He did drink a few ounces of Pedialight from the bottle while I was there. Carol & Riley are supposed to move to the Cardiac wing tonight in a private room. Carol found out that there was a private room available and spoke with Dr. Rome that did the Cath. Carol did get the approval to move Riley.

Riley looked great all swaddled in his blankets! The nurse and Doctor said Riley’s areas that were used for the Cath looked good, the bandages etc.

Unfortunately, Riley has lost the pulse in his left foot. Last time he had a Cath he lost the pulse in his foot. So, Carol and Riley may be at CHOP for a few days again.

This is what I gathered (could be wrong): The consensus from the various doctors seemed to be that Riley is at a wait and see point. They can’t discuss stage 2 surgery with his vein issues, and his heart probably won’t progress. SO, the next option is a heart transplant. However, Riley can not be eligible until his veins are stable.

It sounded almost like a conflicting issue: If Riley gets a new heart, the heart will pump better and help the veins to be more productive. BUT, he can’t get a heart until his veins are stable.

There is just a few things I wanted to add:  Riley’s doctors have said “they are going to do anything and everything to help Riley.”  At CHOP they don’t take the wait and see attitude they tend to go to the extreme and try everything.  We like that!  And, right now Riley’s progress is being measured day by day and week by week since we are not considering the transplant or the stage 2 surgery at this time.

I am heading over to CHOP soon and I will get an update and of course some pictures.  Keep Riley and his family in your thoughts and prays as we take one day at a time.