A Lil' Boy's Journey to Live….

Archive for January, 2009

1/26/09

It’s a little hard to see, but here is Riley napping with the kitty, Sissy!

1/21/09

Any one who has already read the updates on Aunt Chris’s or Granny’s page knows that today
 was what  I would like to consider a good day!  Riley’s veins appeared to be at the same degree
of obstruction as the last echo.  We will take that!  No obstruction would be better, but since we
know its there lets at least keep it under control.  His heart function appeared to be good, also.
The only real area of any concern today was his pulse ox.  He was running in the low to mid 70’s
most of the time, but dipped into the 60’s several times.  This could be caused by the Enalpril or
the shunt.  He may be out growing it.  He should have really had stage 2 between 4-6 moths
and he his now closer to 10. 
Soooo…the best plan is…..Riley has another sedated echo on Feb 25th.  Hopefully that will show the same
results as today.  Then at that point his veins will have been stable for 3 months.  He would then go back
in the Cath lab to have an inside look.  At that point……again best layed plan….Cath will show the same, and we
can move forward to stage 2.  At that surgery the shunt can be addressed, and would be moving forward
with the original…best…course of action.  Transplant is not totally out, but the thought is to move forward with
the stages, and see how he handles it.  If his veins could improve function without a transplant that would be fantastic.
If after moving forward with the stages his veins still aren’t continuing to improve he would then be listed.
Soo….we have gained another month!!
As far as his gtube.  Yeah it has its benefits as far as feeding and meds, but it still really sucks!  I just feel like our day
revolves around setting up feeds and giving meds.  Not to mention that the site is still fresh so its still ozzing, and
because its not the button, yet, it has this round piece that just sits on the skin, and is irritating it. 
It will be nice to get Riley functioning more like a normal baby.  He still needs to sit up
and roll over, yet.  Hopefully with the help of OT and Speech, to help with his oral intake,
we can get him where he should be.
Thanks again for everyone’s prayers and support!  I saw there were over 4,000 views of my page today.
Sorry I didn’t update everyone earlier!  It was just a long busy day.
Until next time….
 
 

1/13/09

Hooray….we are home!  We got home today around four o’clock.   Riley had his first bolis feed this morning.  He took 70ml/hr.  That was good enough for me.  I did my best to make sure didn’t get upset while he was eating.  If he gets himself crying he start to throw up.  That would have delayed us leaving because they would have looked at it as Riley wasn’t tolerating the feed.  Once he was done I tracked down the Attending and pretty much told him we were ready to go.  He wanted to be sure I felt comfortable before we left, and I told him if I have any problems I’ll slow the feeds or call.  He seemed pretty satisified with that answer and pushed along discharge.
It’s pretty weird having this tube hanging out of Riley’s stomach all the time.  We can go back to see Dr. Nance in three wks and he will put the mic-key button back in.  We have to wait for the track to heal before he will switch this g tube out.  Sooo….we will live with it for a couple wks.  We’re are just glad to be home at this point. 
Thank you to everyone for your support.  Thank you to my parents for taking care of Christian for me.  It makes this whole situation easier knowing Christian is with my parents.  Thank you to Jackie, Dennis, Chris, Danielle, Mary Kay, Dad and Christian for coming to visit.  It saves your sanity a little bit to see your family and friends when we are stuck at CHOP, especially when Riley was on contact most of the time.
Next wk is another sedated echo.  Time to check the pulmonary veins again.  Good willing Riley veins are still stable. 
Until next time….

1/9/09

As many of you have already figured…we are still at CHOP.  Riley’s discharge is all based upon his tolerating his feeds.  Right now he is getting 24 calories at 15ml/hr.  He needs to get to 27 calorie w/ microlipids at mininum of 45ml/hr.  That is what we came into the hospital with him tolerating.  This, of course, has him almost on a continuous feed all day…having him eating for like 3 1/2 hrs, then breaking for like 1 1/2 hrs.  Idealy we would like his bolis feeds to last maybe a hour, but I don’t know if that we actually happen before discharge.
I also requested to see a speech therapist.  We do have Chris, Riley’s speech therapist at home, but I thought maybe if we saw one here they might have some ideas about getting him to take things orally again.  Of course no one can figure out why he just suddenly decided to stop taking a bottle.  The only thought is that he got sick…literally….of refluxing everytime he had a bottle.  Anyway…we just had Riley sit in a high chair and pretty much just play with some baby food.  He seemed to enjoy himself as long as we didn’t try to force anything to his mouth. 
Im thinking to just focus more on baby food or regular food when we get home.  We’ll let him get his formula through the g tube.  We’ll see.
Ok…well I’ve been actually writing this blog for about an hour.  Our nurse has been in talking with us.  So I need to sum it up. 
The hope is to be discharged on Sunday.  Again this is all depending on his feedings.  So we shall see.
I am going to post some pics that Dennis took yesterday.  Thank you to Dennis and Jackie for bring me Applebee’s!  Also Thank you to Danielle for being her on Wednesday when the whole g tube episode happened, and thank you to my parents for bring Christian up to visit this evening.  We went to McDonald’s and got to have some alone time together.  It was nice.  This whole thing is really effecting Christian so I was glad to have some time with him.
I’ll update again soon…
 
Finally pics of Riley and Dennis!!
 
Granny and Riley!!
 
 

1/7/09

Wow…what a roller coaster we have been on since yesterday!  Last night…all was well…Riley seemed to be sleeping so I decided to go to bed.  No more then 5 min. pass and his IV pump starts beeping.  I paged the nurse to come in, and as I was waiting turned the lights on and realized that Riley was COVERED in blood.  It looked like someone had painted his face red.  Well…he had pulled his IV out of his hand, and blood was everywhere.  Ok….it wasn’t that horrible that he pulled the IV out of his hand because he still has one on his foot, but it looked really bad when all you see is blood everywhere. 
Then this morning I wake up to the doc telling me that he heard that Riley pulled his NG tube out last night.  I was like no it was his IV.  Well we went back and forth until he said…Carol Im looking at his face and there is no tube.  Sooo….apperently at some point during the night Riley also pulled out the NG.  I don’t know how I missed that, but the doc said that maybe he pulled it out and went back to sleep without there being a big fuss.  Again…this was ok, though, because he was still draining out of his G tube.
Then…as everything is going good they decide to slowly start feeds through the G tube.  Great….right?  We are laying on the coach, and again his machine starts beeping.  I think of last night and that something is blocked.  I lift his gown, and would you believe that his G tube is laying on his belly!?  It is out!  the tube they just surgically put in his belly yesterday is out!  Come to find out that the balloon that inflates in the belly to keep the tube in place was defective.  Again…would you believe Riley’s luck??  There was alot of drama involved with this.  I cryed alot because they wanted to place the tube back at the bed side, and he was not happy.  I just couldn’t imagine his pain!  He just had major surgery, and now they want to PUSH this button back through a whole that was pretty much closed.  Anyway…after much discussion between the doctors they decided not to put the button back now, and to place this other tube that now HANGS out of his stomach.  The one that Dr. Nance said before we were so lucky not to have….we now have! 
Thats leads us to now.  Riley is just not a happy camper.  He is on contact so he is stuck in the room…he has a tube hanging out of his stomach…..he has an IV in his foot…..leads all over his chest…..his lips are soooo chapped the skin is literally hanging….he hasn’t eaten…..oh….and lets not forget he had surgery yesterday.  
Riley’s cardiologist thinks our luck is just horrible.  Speaking of…..Riley will have a sedated echo on the 21st.  Im sure that will lead us back to the cath lab……cutting balloons….etc.
All I know is our luck needs to turn around.  Its a new year…can Riley get a break??    

1/6/08

One of Riley’s first visitors after surgery was David Ackers from the Eagles.  I think Daddy was more excited then Riley, but the whole thing was awesome!

   Finally a pic of Riley and Dr. Spray, his heart surgeon.     Riley and Granny.  Huge Thank you to Granny for being here at 6:30 this morning to help to get us through the day. Riley and his girlfriend Jackie.  Thank you, also, to Jackie and Dennis for coming to CHOP today.  The both of you coming into our lives has been one of the best things to happen.  

Riley holding Jackie’s hand.

I think that Granny did a great job explaining what happened today so Im not going to repeat it.  Right now, though, it’s 7:30 pm, and Riley is resting peacefully.  He is on Morphin for pain which is keeping him pretty sleepy.  This is good, though, because he is kinda stuck in the bed.  He has an NG tube to drain his belly, and they are draining through his G Tube also.   Ok…have to run.  His night nurse is here and I would like to talk to her.  Thank you for all your support!!

1/4/08

I just wanted to let everyone know that we are now at CHOP.  We got here at 11am.  Riley was put on precaution because of his cold.  Pretty much means that when anyone on staff comes in the room they have to wear a mask, gloves and gown.  This way they don’t pass it to other children.  Thats fine….lets just keep moving forward so we can get this surgery behind us.
Right now Riley is with Darren.  He took a pretty long nap today in Darren’s arms which does worry me for tonight….that he’ll be up all night.  He already won’t lay in the crib.  I think this visit is going to seem extra long if that continues….at least the nights anyway.
Well have to run.  Dinner is being delivered downstairs.  Now that I can get on the site from here I will update again.
Love to all..

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