A Lil' Boy's Journey to Live….

Archive for June, 2008

Pics from CHOP

Riley before Cath.

Riley on the happy meds. before the Cath.  Don’t miss Daddy sleeping in the background!

Riley two days after being admitted.

Getting ready to leave CHOP!!


Hello…I know that Chris has been updating, but I thought I would drop a few lines.  I have run home to get some clothes.  Riley is at CHOP with his Daddy and Granny.  Today is another day that he will not be discharged.  They still are not satisfied with the pulse in his right foot.  They need that artery to be nice and strong because they know that they will need it again for future Caths.  He is currently on Heperin.  Every four hours they check his PTT’s, and they still aren’t where they want them to be.  Riley’s poor arm and hand is black and blue from being stuck so many times.  There was a thought of putting in an IV they could draw from, but they keep thinking he is going to leave and then he doesnt.  He is really handling it all very well, though. 
We are still not sure, exactly, when we are going home.  The thought is now tomorrow, but one of the Fellows came in and mentioned staying until his surgery.  I brought that up to the Attending during rounds and he said that he wasn’t sure at this point.  The Fellow told me she spoke to Dr. Spray, Riley’s surgeon, and he agreed to move one of his other pts. out of his schedule for the wk of the 7th to put Riley in.  Now I don’t know if he had the idea of keeping Riley or if the Fellow just was thinking it herself.  Either way, the only thing that the Attending would say for certain is that we have to stay till at least Monday.  I will do whatever is best for Riley.  If coming home is a concern to them then we stay.  I would like to bring him home, but I know I’m going to be more of a wreck then I already have been.  The thought that he only has one lung that is functioning well is scary, but if they let us come home tomorrow I will be sure to enjoy the wk that I have with him before I have to bring him back.
Dr. Rome was sure to remind us that fixing Riley’s veins with Heterotaxy is extremely difficult.  I told him, as well as Riley Cardiologist, that they have to!!!  There is no way around it…they have to fix him by any means possible…I cant imagine my world without Riley in it!
So in the end I ask you all to pray!  I know it has been said so many times, but God is the only one that can truely decide what will happen.  He needs to give these doctors the ability to fix Riley’s heart, and Riley the power to get throught it.

Visit from Friends!

    Today we had a visit from Mrs. Green and Chuck.  Chuck is Darren’s childhood friend, and Mrs. Green is his Mother.  Thank you so much for the Great outfits you gave to Riley!


Riley will be going for his Cardiac Cath. on Friday June 27th.  We will go to CHOP on Thursday the 26th. for his Preadmission testing.  He will have a chest X-Ray, EKG, and blood work done.  That should be fun:(  Keep your fingers crossed that all goes well, and that the obstruction is not to bad.


Pics from Father’s Day!

Just some extra pics!!

follow up appt.

Riley went to the Cardiologist today.  He now weighs 9lbs. 10oz.  I didn’t get his length.  His BP was 115/65 in his right arm, and 105/59 in his right leg. His oxygen sat.’s were at 89%, and heart rate was 149.  All of these numbers were good, except she wants him to get fatter.
Riley has added a new med. to the list.  He is now taking Digoxin.  I looked it up, and this is what it said.  Digoxin helps the heart to beat more strongly and regularly.  Digoxin is used to treat conditions such as congestive heart failure and atrial fibrillation/atrial flutter (types of fast heartbeats).
Dr. Szwast explained it as his heart is not squeezing hard enough at each beat.  We are not sure of the length of time he will be on the new med., yet.  It could be till after his surgeries or it could be forever.  All depends on his heart.
We also discussed the Cardiac Cath.  They should be calling me to schedule it in 2 wks.  Dr. Rome will do the procedure.  We are not sure, yet, if it will just be a diagnostic procedure or if they will attempt to open up the veins.  All depends on what he sees when he gets in there.  He will consult with Dr. Spray at that point, and decide if the veins need to be opened up, or if things can wait till his next surgery.  They will also decide, at that point, when the next surgery should be.  Dr. Szwast is thinking early September, but that could change after they do the Cath.  Another wait and see.
So all in all it was an ok visit.  I hate to add another med., because he already hates taking the ones he has, but we’ll do what we have to do.  Next step, moving forward, will be the Cardiac Cath., and depending on what they decide to do will determine if it’s an outpatient procedure or if he will spend the night.  I will update when I know when the Cath will be.  Until then pray….pray…pray!!

Tryin’ to find a little hat for his little head!

Just another pic

Riley’s visit to Mommy’s work!!

Aimee and Dr. ElGenaidi!!  How cute!!

follow up appt.

Today was Riley’s follow up appt. with his cardiologist.  All started out well.  He weighs 8lbs. 9oz., and is 22 in.  She was happy with his weight.  He seems to be gaining more then 20 grams a day.  His BP was 115/49, and oxygen sats. were 81%.  She believed that he was still surpassing the odds.  We discussed his Stage 2 surgery that she figured would be in the beginning of Sept., and would be where Dr. Spray would remove the shunt, and connect the Superior Vena Cava to the Pulmunary Artery.  She didn’t think, at that point, she would need to see Riley again for 4 wks.
Next we went for the Echo.  I have dreaded the Echo since we left the hospital, and apparently for good reason!  When we went back to see her for the results she said that there was more vein obstruction then there was at the last Echo.  She HATED to tell me this news.  She said that you would never know by looking at him that things werent going great.  So now they want to do a Cardiac Cath.  She was going to talk with another doctor to see when it should be done.  Should it be done sooner rather then later?  She was going to call me tomorrow with the plan.  Until then, though, she decided she wanted to see him back in 2 wks. instead of 4.  Also she wants another Echo at 4 wks.  Needless to say the call didn’t wait for tomorrow.  She called me on my way home from CHOP and said they wanted to do the cath  in 4 wks.  She also isn’t sure now if the next surgery will be in Sept.  We have to see what happens.  They really dont want to do it before he is at least 3 1/2 months, though.  It all depends, I guess, on what happens as we move forward.  Hopefully they wont have to add more vein repair to the next surgery.  More repair means more scar tissue which means more obstruction and we know what follows.
Oh, Riley also saw a Dermatologist yesterday at CHOP for his rash.  He seems to have Atopic Dermatitis, and Seborrheic Dermatitis.  Boils down to Eczema.  The doctor gave us a script for a cream, and wants me to change his bath soap.  Hopefully that will fix the problem.  If not, we go back in 6 wks.  Riley has been blessed with his Daddy’s skin!
I think its time to start praying harder…louder.  Our little miracle is hiding very well that anything is wrong!!
Until later…

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