6/29/10

Monday morning Riley had a fever, again, that brought his HR up to 150. That’s high for Riley especially with some of the meds he’s on, but the Motrin brought it down.

Went to see Dr. Hanna…had labs drown including a blood culture. His WBC were elevated some, but they also were @ the time of his Cath. Checked his ears to be sure the ear infection hadn’t returned…nope. Of course now there is no fever either cause we had treated it with Motrin. Strangely, though, Riley’s fever does only seem to be at night and in the morning. So..No idea what is causing the fevers at this point, but we are to continue treating as we have, but Dr. Hanna wants us just to do round the clock Tylenol for like the next week, and the Motrin if its needed to reduce the fever.To sum up that part of today…Riley is sleeping…he does not have a fever and I did not give him the Tylenol. If he is not symptomatic.. at all.. I’m not going to give him more meds then he is already on!
Dr. Hanna wants to see Riley every 2 weeks moving forward. See after many Caths Riley has ended up back in the hospital for one reason or another. Usually for a fever and usually we never find a cause. Dr. Hanna wants to try and piece the pieces together and see if he can find the cause. Meanwhile we’ll wait for the culture results and go back in 2 wks.
There have not been any offers recently for Riley:-( That’s a lil’ discouraging, but Dr. Hanna seems to finally get Riley and his cycle of continuing obstruction and isn’t saying…no more Caths…anymore. Where Riley’s veins are narrowing in the 2 remaining veins is in a totally different location then the first 2 that have been lost. He feels… at this time…. that these 2 veins should respond to dilation without occluding….pretty much buying some time.
If there is anything to update I will….Thank You All ♥

In the office with Dr. Hanna and his Asst.  Riley Chillin’ on the desk!

6/27/10

Riley has a follow-up tomorrow @ Children’s Hospital of Philadelphia.

This is good cause Riley has been running a fever all wkend.

Skip the Tylenol..straight to Motrin, while we still can.

We are seeing a pattern, though.  After Riley’s Cath’s, about a wk or 2 something starts to go on with him.  Sometimes we don’t get answers…sometimes we do.

Tomorrow will start with blood work to look for answers then ????

So once again…Fingers Crossed that tomorrow is an Uneventful Day ♥

6/18/10

Riley was discharged from CHOP yesterday afternoon!  The Cath went well!  No Complications and the Lower left pulmonary vein is still hanging on.  Dr. Rome used Cutting Balloons on both veins to remove tissue.  So we bought Riley some more time. He’ll need another Cath around the time that school starts…unless we get transplant first!!  For now…All is well….He is VERY Happy to be home!

Riley said "Mom" today!!! It was Beautiful ♥ Give the boy a lil’ more blood flow and u’ll be amazed at what can happen …:-)

Thank You ALL for your Support ♥

 

6/15/10-2

Riley’s Cath has been rescheduled for tomorrow morning first case. There were 2 emergencies from the CICU. Yeah, it was rough waiting around all day, but I would hope that if Riley was the emergency another family would understand ♥ So tomorrow 8AM ♥

6/15/10

Cath Day is upon us. My feelings are all over about it. Riley’s risk for complications is through the roof, yet, Cath’s have really been the only thing that has kept Riley with us for the last 2 yrs.

My emotions got a little extra rattled today. Dr. Rome popped in really just because he saw us as he was walking down the hall. Anyway…when he came in one of the first things he said was….You are really pushing this aren’t ya? I’m like…what? I’m not pushing anything! Riley’s pulse ox dropped last wk and I called. We came in Friday and he was still reading in the 60’s on 4L of O2. Dr. Hanna made the decision to have Riley Cathed…he started making the phone calls and arrangements. Yes….right now he is sitting in the 70’s on 3L. of O2…..so Dr. Rome says….He may not need to be Cathed … well I guess we won’t know now until we’re in there. I’m like … Riley has been Cathed every 6wks to 3 months his whole life! Everytime you go in you have to use cutting balloons! Riley is being like a car when you take it to the Mechanic and it runs ok….however….Riley was sitting in the 80’s on 2L. of O2 now he is in the 70’s on 3. Sooooo…that’s pretty much how the conversation went!

Sorry if I lost anyone!

After he left I was like….IM NOT PUSHING ANYTHING! God Forbid something goes wrong tomorrow…I don’t want that on my shoulders! I am Terrified for tomorrow, but there is no winning answer here. Everything with Riley is Hard…Complicated….Scary..♥
Anyway…Riley had a pretty good day, again. He did get IVed around 6, but I requested "Chatty Kathy" from the IV team and she is Wonderful. Riley sat with me while getting the IV. Anyone going to CHOP through the CPRU…request Kathy to do your child’s IV!
So as I may have said almost everynight these past few days please keep Riley in your Positive Thoughts and Prayers for his Cardiac Cath ♥

6/14/10

Not really to much to update today. Riley had a pretty good day. Of course most of it was spend walking the halls, but u’ll go Crazy if you stay in the room! Trust Me….I feel like majority of the time Riley’s admitted to CHOP he is on contact and its REALLY Hard!

We changed rooms today to one that had a bath tub…So Lisa…we are in Rm 29 in CCU now instead of 24:-)

Tomorrow…evening he will get his IV for the Cath. I pushed it back as much as I could, but they need some blood tests done before the Cath and if we IV him he’ll only have to get stuck once. Riley’s Regular veins are so small and scarred up from IV’s and lab work….he is a very hard stick! God…Friday night they drew from his foot! I usually avoid that at all cost..even trying to help the tech to find the veins, (I was an MST before having Riley), however I had ran home and wasn’t there and Darren had left the room (I suggested) so to the foot they went! My poor Baby!

Soo…besides that we are moving forward with the Cath on Tuesday. PRAY ♥ PRAY ♥ PRAY……NO COMPLICATIONS…and if possible….LET THE LOWER LEFT PULMONARY VEIN STILL BE HANGING ON ♥

 

     

6/13/10

Sooo…..Riley is Chiilin’ at CHOP! He was on Contact for like 24 hrs. until his respiratory panel came back, but it did and was fine so he was FREE!!

Got him hooked up in his wagon and walking the halls and he was in his Glory!

We brought him back down to 3L of O2 and he’s anywhere from like 70-82%. Hmm… Still…that’s 3L of O2. Without it he is in the 50’s 😦 Riley has been scheduled for a Cath on Tuesday. No…we weren’t doing one ….until….something like now when they feel there maybe a reason to do it. Riley cant go more then 8 wks now without having to have his Pulmonary veins ballooned!

So the continued fear that I have for Riley’s life just got bumped up a lil’ at least till after the Cath. They are EXTREMELY risky for him now, especially if we are down to one vein, Just thinking of it chokes me up!

He Always pulls through…even when there’s complications…I have to believe that he will continue to pull through and fight….Fight for a Life that he has Been Fighting to Live since he was born ….CRAZY!

6/9/10

Riley will go Friday to see Cardiac and Pulmonary. Have labs done and possibly and echo and Chest xray.  I have raised his O2 to 3L. from 2L. Reason..PO hanging in the 70’s.  So we’ll see if this will prompt a Cardiac Cath. Its scary either way….could lose a vein during cath or we could do nothing and lose it anyway!!

God please help to make the right decision to keep Riley fighting till Transplant ♥

 

 

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PT @ CHOPGetting a lil’ check from Dr. Hanna