A Lil' Boy's Journey to Live….

Archive for October, 2009

10/24/09

Hey Riley Readers………So yesterday we went back to CHOP.  First Riley was evaluated by the feeding clinic.  He was accepted into the day hospital feeding clinic.  Now, though, we still have to wait.  First there is a small waiting list.  There should be an opening in Nov. or Dec.  However…..with Riley being listed for transplant we can not really afford to have him in the hospital right now because the Flu is spreading like wild fire.  Transplant wants us to wait at least a couple wks for the worst of it to hopefully pass.  After then….who knows, but what is important is that he has been accepted into the program, and has had his initial consultation.

As far as transplant…..we were with the lung transplant team for about 3 1/2 hrs.  Spoke to the Social Worker, Physical Therapists, Nurse Practitioner and of course Dr. Goldfarb, and Dr. Hanna (Cardiology).  Riley also got the H1N1 Vaccine when we were there.  Regardless of the controversy behind H1N1 Riley can’t get the Swine Flu….any flu for that matter.  We need him as healthy as possible.  As far as the listing itself…..they are just crossing their T’s and dotting their I’s.  They are also submitting paper work to the organ donor network to get Riley on a Level 1A.  That would be the highest priority listing. 

Other then that….we don’t have another appt. scheduled right now.  They want to wait for the flu to slow down some in the hospital.  They will call us to schedule the next appt.  Most likely it will be in three wks.  After that he will have another Cath. in two wks. 

Bottom line…..things are getting a little crazy.  We now have three tanks of Oxygen in the house.  Theory being that Riley will eventually get sick and need the oxygen.  They believe, too, that Riley will eventually need O2 at night while he sleeps.  All that being said…..we are pushing forward!  Riley WILL get through this!!  There is no other option!!

 

One last thing…..as if the Croneberger family has not been through enough lately…..my little sister, Katy, who lives in Nevada in the Navy was riding her Quad last night and apparently her brakes didn’t work and she somehow ended up flipping over the front!  She shattered both of her elbows, and had surgery on them last night.  I believe my Dad will be flying out there tomorrow.  So if you decide to pray for Riley tonight please also pray that my sister makes a speedy recovery!!  Thank You 🙂

Picture from the summer of Riley and Aunt Katy

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Riley’s Halloween Costume

Riley tried on his Halloween costume today.  He looks Soooo cute as a Skunk!!  Thank You Nim for the great costume 🙂

 

          

napping

 

Darren and Riley taking a nap in Riley’s crib at CHOP..

10/14/09

Riley was released, yesterday, from CHOP after one of our most tear filled visits.  The Cath. itself went well without any complications.  The results of the Cath. are a whole different story!  We were thinking that we were possibly moving forward to stage 2, or at least moving forward in the same fashion we have been.  Boy were we wrong!! 

Riley’s upper left pulmonary vein is completely gone!  It is totally occluded.  Apparently beyond where Dr. Rome had previously placed a stent is just not there anymore.  He believes that the lower right pulmonary vein is going to be soon to follow.  The LRPV is already not functioning well.  So the belief is that the loss of it won’t be huge, because it already doesn’t carry much blood flow, but that would then leave Riley with only 2 of his 4 pulmonary veins!  He can live for a while like that, but not forever, especially when Dr. Rome says that disease is winning!  Eventually the other 2 veins could follow.  That all being said…….we are left with only one option.  The one options that we were never even considering because the survival rate is sooo low has now become our ONLY option for Riley to ever survive!  Heart-lung transplant!!  At this point we are in the process of already getting Riley listed.  How could we not??  I can’t sit here and just watch him die!  We have to do everything at this point to keep him alive!  I really don’t feel like I’m being selfish…..I just have to believe that Riley is going to be in the small percentage that survives!  There are children that do, and Riley will HAVE to be one of them!! 

We have already spoke to, Dr. Hanna, who is now our new transplant cardiologist, in addition to Dr. Szwast.  We have also meet with Dr. Goldfarb, who is from the lung transplant team.  No time has been wasted getting the ball rolling.  This Friday we meet with Dr. Hanna and also have pre-transplant blood work done.  Next Friday, Riley already has his feeding clinic consultation scheduled, which we are doing, and then we will go meet with Dr. Goldfarb.  The whole listing process should take between 2-3 wks.  The doctors don’t believe at this time that there is any reason not to list Riley, but there is a whole process to go through that involves about 25 people.  At the end we will all get together and lay everything out on the table.  Assuming that they will list Riley it is ultimately up to Darren and I.  I think we’re sure of our decision already!  I will do my best to keep everyone informed of whats going on.

I do have to throw a couple Thank You’s out there!  Thank You to Rebecca and Sean McClain for happening to be there at the right time!  Before my family had arrived they had became my shoulder to cry on.  I felt bad because they we’re there for their son, Ryan, to have a MRI, and I came in crying about Riley, but they/you were wonderful!  Thank You to Barb and Jackie for coming up, and sitting with Riley so we could eat dinner.  Thank you, too, for sitting in McDonald’s with me for about an hour, and sharing my tears!  I couldn’t ask for better friends!!  Thank You Mary Kay for once again leaving work to come up and comfort us.  I know that I can ALWAYS count on you to be there!  Thank You Chris, Mom and Charles for coming up to CHOP.  It was great to be surrounded by my family and friends on that life altering day!

Now it’s time to run.  Riley is having O.T. in 5 minutes. 

Please pray for Riley!!  God is not ready for him, yet, and we need to make him understand that!!

10/6/09

 Riley loves to sit in the front seat while we wait for Christian to get out of school.  He just looks soooo cute standing there holding the steering wheel and looking out the window:-)

 

On a different note…..Riley’s Cath has been scheduled for Monday October 12th.  He will go Friday for the usual pretesting….blood work and a chest x-ray.   Fingers crossed that it will be a little less eventful then the last one where he came out on a Ventilator!  Hopefully it will show some good news! 

There is one bright side to the day.  The McClains will be there with Ryan.  Of course it would be better to visit under different circumstances, but it is what it is.  Ryan will be having a sedated MRI around the same time that Riley will be having his Cath.  So we will be in the CPRU together, then probably waiting together, but then Riley will have to go to the CICU, and Ryan will most likely be cleared to go home.   It will still be nice to reunite once again with our ORIGINAL heart parent companions .  For anyone who doesn’t know Ryan and Riley were born a day apart and were in the same pods in the CICU at CHOP for almost 2 wks.  I think there will always be a bond!

Until later….. 

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