Today feels like a complete rewind to last year. It's Riley's fourth birthday (and Saturday and Sunday my cycling team raced in Brisbane for Riley again). Since Riley is still frustrated, grouchy and depressed, we've decided not to mention his birthday. We hope there will be plenty of time for celebrating when we get home.
Riley had a fairly good night, he was extabated at 9pm before Mom and Grampy went home, and the first thing he said was that he was hungry. He also asked Dad to spend the night again so I pulled a double shift. We had to hold him off from eating or drinking for an unbearably miserable four hours, but finally he was able to drink apple juice and eat some fruit.
His numbers have looked good. Only source of concern has been his oxygen level, which dips into the low-70s and even high-60s without oxygen blow-by. It's in the low- to mid-80s with the oxygen. It's too early to be worried about that. His chest tube output is amazingly low compared to his last three surgeries. He has three tubes and they have each put out about 300-400ccs since he got back to the ICU. Counterintuitively, his overall perfusion looks better now with his sats in the 70s than it looked with his Fontan sats in the mid-90s.
Monday, April 02, 2007
Happy 4th birthday Riley
Posted by Ken Norton at 4/02/2007 06:26:00 AM
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25 comments:
I know this is a less than ideal way for Riley to spend his birthday (understatement of the year, right!?) and I am hoping that he is on his way to a fast recovery from all that he's been through. As you say, Ken, there will be time later for you all to properly celebrate his birthday. Still I know it's a psychological hit to be spending his birthday in the hospital for the 2nd year in a row.
It's great to hear that his chest tube output is so, relatively, low. That must be a strange feeling. I'll be keeping my fingers (and everything else!) crossed that his output keeps decreasing and his O2 sats stay up once he's weaned off of oxygen. My thoughts, as always, are with you all.
love,
Gwynne
Excellent news!!! Hope you get some rest Ken. Glad to hear it and will certainly celebrate his birthday when we are all there later this week and next week. love you all so much. Love, Grammy and Wayne
hey Ken - it's a sign of how hard the last few days have been that "fairly good night" is great news - I'm glad to hear it. Looking forward to hearing about a slightly-belated 4th-birthday celebration ...
What a good, positive update. I was so happy to read this one! I know we can't come close to what you're feeling the past week, but as fellow heart-parents, we ache and cry and worry about Riley right along with you. I'm sorry he's so unhappy - but that he's eating? And the chest output is good? And his perfusion looks BETTER? I even smiled a bit reading this post! Go Riley!
Here's hoping today continues to be small, positive milestones - steps getting you closer to bringing that beautiful boy home.
Oh, I see, he was mid-80s saturation with oxygen yesterday. Did Dr. Karl discuss why they didn't do the shunt?
But, as you said, his sats are something to worry about later - the important thing is he's stabilized and healing. We were so worried about him, going into surgery in such a weakened state... the fact that he's out and doing well, asking for food, that's such a huge step.
It seems to me that there's just something about Riley's anatomy that he does better than most on the Glenn, but has trouble with the Fontan. I've thought a lot about this takedown, and it no longer seems like such a big step backwards. The Fontan never seemed to work well for Riley - I think back to the extended recovery period and constant diuretics. My hope is that these brilliant doctors will learn from this (these guys must be experts on Riley's case by now!) and they will gain perspective on Riley's unique situation over time. Then, hopefully after a few years of research advancement, they may be willing to try some modified version of the Fontan again, this time with greater understanding of the Fontan circulation, and more experience with Riley's particular anatomy.
So, while the idea of takedown seemed so horrible a few weeks ago, now that it's done and he's doing better already, I'm more hopeful. It seems like a new path is unfolding for him. It's not the path any of us would have chosen, but I'm hopeful that it will still provide some level of extended health and normalcy for him.
We wish him a happy birthday, and hope that he can have a wonderful birthday celebration (car cake and all!) in a few weeks.
Happy Birthday Riley! I hope is up to celebrating soon. Love from Boston on a rainy Monday.....
ooh-rah :)
Will
Mike said a lot of what I've been thinking. From the sounds of it, Riley's body knows what works best for him. I read an adults w/CHDs board, and I'm fairly certain there are several Glenn adults who post. I've wondered about living with the Glenn vs. living with the Fontan.
(You'd need to create an acct to access the page, but the ACHA boards are here: http://www.achaheart.org/boards/ - do a search for Glenn.)
I'm a stranger coming here from Suzanne's other blog. I wish Riley a Happy Birthday, and look forward to hearing about his birthday celebration when he comes home. My heart is with you.
bj
nHappy 4th Birthday Riley.
It is so great to hear that Riley is talking and asking for food. I would imagine it is a relief that he is requesting your presence and help. Riley is very fortunate to have such amazing parents!!! Ken and Suzanne you have been wonderful through all of this. I (we) cannot imagine what it has been like to have gone through this past year!
We want you to know we are continuing to pray for Riley, Ken, Suzanne, Carter and all the caregivers. You are in the prayers of those who don't know you and your family. Larry and a group in UK have been and continue to pray for Riley and family.
Sending Love, Prayers and Hugs
The Stegners
Don't want add to the arm-chair medical practitioning - but a neighbor of ours who is a PA (who we have told about Riley) asked if b/c of the asplenia Riley's blood is more prone to the clotting? Am sure you and your Dr's have taken a different blood chemistry into account... but we were curious if that perhaps added to the clotting issues and/or the root cause of the protein loosing.
Regardless, one day at a time, glad Riley is stable and post-op is going smoothly. Perfusion is better? Wonder why - but you will take it! How long can the Glen-flow work for a growing kid?
For the day Riley gets home and you can celebrate... sending Happy birthday thoughts your way Riley! We love you!
Honikman's
We're pulling for you all to get home soon. After Riley's Glenn, it took a few days for the oxygen saturations to increase and stabilize. Hopefully we won't see you Friday, but if you are still there, plesae let us know if we can bring anything.
It sounds like Riley is finally on the road to recovery. I'm glad to hear that the tube is out and he's able to eat. I hope you are all home and celebrating Riley's birthday as soon as possible.
hugs to you all
happy birthday riley!
love-
marisa and dave p
Glad to hear some good progress from our Birthday Boy! We will definitely celebrate more than his birthday when we are with you next week. Hope you guys are able to get some better rest, now. Love and hugs to everyone!! Auntie and Stephen
I'll save the official Happy Birthday to Riley for when he's home and able to have a bit of fun. But I'm happy things appear to be on the right path now! Love and hugs to you all... and I hope you can scoop Riley up very soon and show him your affection again. I can only imagine how hard these last few days (weeks, months) must have been for you guys and MY heart ached for all you've had to go through. Wish there was more I could do....
Just wanted to say how much we admire the determination and attitude of your entire family.
We're looking forward to celbrating Riley's B-Day when he's ready.
-Paul, Lisa and Matthew
I can't feel this is all good news (birthdays in hospital are not something to get too excited about) but I am glad there are some glimmers of betterness. That chest tube drainage sounds much more like it and I am amazed he is nibbling and has the energy to be grouchy and frustrated (showing some spirit!) after all this.
I hope today is stable and improving. This recovery is always a bit of an unsteady path but I hope you will get home in a straight line from here.
I was so glad to read that Riley was making steps toward recovery and second the comments made by Erika and Mike.
We know first hand how much the small steps forward mean. I was happy to read that Riley was extubated and eating those are huge steps. The O2 sats will hopefully stabilize where they need to as he continues to recover.
even though, riley feels crappy... i say happy birthday anyway. looking forward to more good news. :-) much love.
Happy Birthday, sweet boy...I know that when you get home, you'll get a huge celebration. I'm so happy the update was positive - come home soon, Riley.
Glad to hear Riley is improving. Praying for you all! I am sure when Riley feels better you will all be ready to celebrate Riley's birthday.Prayers are with you from the East Coast. Love Laurie
Hey guys:
Kendra pointed out that my post re oxygen saturations may have been misleading. What I meant was that it took a few days for her saturations to go up/stabilize when off oxygen (i.e., it took awhile to "wean" her off of the oxygen). Hope I didn't confuse you. We're still hoping you'll be gone by Friday, but if you are not, let us know if we can bring anything.
-Paul
I sooooo hope and pray that Riley is on his way to better days. I know the cycles that our children go through with being depressed while in the hospital and not understanding why.... I just want you to know that I care and my family is praying for little Riley. There's nothing more important on this earth than our families and I know you know that!!! I wish you strength, courage, endurance and much happier days.
You're wonderful parents doing all that you can for your littly guy and I know Riley feels your love and comfort even when he's grouchy.
One more thing---- when my Taylor was recovering from his Fontan surgery they were able to bring in a real small dog to visit and that seemed to help a little. Just a suggestion...
With Love,
Kimberlie Gamino
I am sending you my prayers, and well wishes. I hope that this is the begining of great things to come.
Drea
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