After a disheartening low point late last week when Riley looked terrible with sunken eyes, poor profusion and low stats, he seems to have made some improvements. We moved to the step-down unit earlier today and Riley is in good spirits.
Here are some updates from the past couple of days:
- His intracardiac line was removed.
- His pacer wires were removed.
- His arterial line from his underarm was removed.
- He is getting an appetite stimulant to increase his interest in food. He is probably taking in 700 to 800 calories per day.
- His drainage has been steady. It is also clearly chylous. The doctors had loosened up his fat restrictions for a couple of days to get him more interested in food. The drainage almost instantly turned to a thick, creamy consistency. He is now back on a fat-restricted diet.
- His PICC line was not drawing blood (a clot had likely formed on the end of it), so some TPA was dripped into the PICC line to dissolve the clot.
- His stats seems to be in the mid 70s. They do occasionally dip into the 60s or rise into the 80s, but 70s seem the most frequent.
15 comments:
Well,
It sounds like there is a mixture of news but I am glad (as I am sure you are) that he is taking in more calories and is out of the PICU. I understand wanting to get other opinions too and I hope that you get the very best of what medical science has to offer right now. Wish I knew someone personally you could talk to. You know they are always making advances so what is true for one patient may not be true for Riley if/when he needs a transplant. We are thinking positive thoughts about Riley and hope his recovery is speedy and steady.
Joce
Wow. It sounds like a lot has been going on, some good and some not so good. I'm so happy to hear that Riley has been moved to the step-down unit (that's always a good sign) and that his appetite and mood are improved. Were they able to get the PICC line working again? I know that happened when Cassidy was in the hospital for so long. Another "trick" the nurses had (along with TPA) to draw blood out of the PICC line was to move Cassidy's arm around as they were doing the draw ......the success of the draw was very positional, but they always ended up being able to get their sample after a good amount of effort.
I'm sure that it's disheartening to feel like the docs at UCSF didn't always make the best decisions for Riley (I'm anxious to hear what's going on with the big changes to his team....very strange). But it's such a good idea for you guys to be looking into other possibilities for any further work that will need to be done. I know that you know we think the world of the cardiac unit at LPCH. I truly can't say enough good things about all the doctors and nurses. Unfortunately, we've gotten to know them very well. You guys have been great advocates for Riley, and I hope you're not giving yourselves a hard time over "what if's". It's very difficult as parents to process everything that happens to our children in the hospital AND at the same time to stay on top of all the decisions the doctors make. You are fabulous parents and people and we love you dearly. Please give Riley a big hug for me and, Suzanne, I hope to see you later this week.
love,
Gwynne
I hope that the recovery continues with some steady progress. I felt very reassured when lines were coming out rather than going in.
While I understand much of the cardiac stuff you describe, I don't really grasp the significance of the chylous discharge from the chest tubes. Does this mean the PLE is still occuring? Have you been given any time frame for this resolving if the step-down is effective?
I too am sorry you are doubting your doctors. When you are not right there its easy to be a bit sceptical but I am sure it was hard to seek other consultations when you are so well known to your team. On that note, I am alarmed to hear of "political" issues. None of us want to think of Riley (or any child) having less than optimal care due to political rumblings.
The best news is that Riley is feeling in better spirits. I hope you are too, just a bit.
hey suzanne,
thanks for the update. glad to hear the kid's feeling a little better.
good luck with those docs.
much love,
Sarah
Glad Riley has moved to the step-down unit,and appetite and spirit has picked up.
You know what is best when it comes to your children....a second,third opinion if need be,he's your child and you certainly ride the same roller coaster he's on (been on).
Hopefully he continues to do well and gets stronger.
Positive/great thoughts and prayers continued on an hourly basis.
Love to all. Melinda N O'Boston
I'm so glad to hear there is some good news. I hope you are starting to get the old Riley back. I am concerned about the politics you talk about at UCSF. I hope and pray that Riley is getting the best possible care and that the second opinions you get confirm that. Stay strong!
Oh, I meant to say yesterday - if you want the line spacing to stay the same after a list you can type a
< p >
(without any spaces) before the next paragraph and it sets it back to normal.
Just wanted to drop a short note of support (connectivity is limited as I am on a cruise ship). We're glad to hear you're exploring options with your doctors. More input can only help.
So happy to hear that Riley is improving. God bless you all.
Great to hear that R is doing better, not so great to hear that there are issues with doctors. I hope that resolves quickly. Second opinions sound like a good idea, but I can only resound Gwynne's comments about not what if'ing yourselves - as she says you have been wonderful advocates for Riley. As ever we are thinking of Riley and hoping for quick recovery and resolution of problems. We love you guys.
Jude et al
It is a good thing to get more medical opinions for Riley's care. You guys are great parents and everything you and Riley has survived is a testament to your incredible perseverance. This blog could be a useful resource for the other institutions in that it contains all of Riley's medical history (peppered of course with insightful parental editorials). Of course, they may be a little concerned about their own diagnoses being put on the internet if they took on his case. But you could just create a historical journal of Riley's care (if you haven't already done so) by copying and pasting past entries into a Word document along w/ Riley's pictures with each treatment and give that to them and they'll never have to know about Riley's blog. We're pulling for you and sending you guys all the good thoughts, prayers and wishes. Hang in there!
Just wanted to let you guys know that I am thinking of you. I agree that obtaining second opinion(s) is a good idea. Let us know if we can be of any help in making contacts for you here in Sacramento. Stanford might be worth looking into.
So Wonderful to hear that Riley has been moved to a step down unit!!! I so hope that you're able to play cars with him in his bed!! I know it's difficult to take it one day at a time when you're constantly having to look ahead for future treatments but remember the baby steps.
You're doing the absolute right thing with getting the second opinions. I've heard that Boston has an excellent team at the major hospital there and we have a heart camper that actually travels to New York twice a year to see her team of excellent doctors. If you need names I'll ask specifics for you.....let me know.
Can we send Riley a care package now?
Kimberlie Gamino
Yay for step-down! What heartening news!
I know you probably already have connections, but Sammy's a patient at Children's Hospital Boston, and I would be MORE than happy to forward any information along and/or call the necessary people to get your names through to them. Just say the word. Email me at erikarenee@gmail.com if there's anything I can do.
It is so disappointing to be praying so hard for this little guy and not get an update for days........how is he doing?
Is it true that Dr Karl is now longer operating out of UCSF? I just heard this via another heart-mom's blog I follow.
We have friends due into surgery there in the next few months so its a disturbing piece of news if true.
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