They pulled the new chest tube this morning, the x-ray showed that the pneumothorax was gone and Riley's lung has inflated. No fluid actually drained from the tube, just air.
Riley is going to go home on coumadin to treat the clot in his leg. He'll be on the medication for about 90 days. Managing the medication will require a daily blood test. Now that all tubes are out, they're going to discontinue the heparin and start the coumadin overnight (don't ask me why it needs to be done at night). It will take 48 hours for the coumadin to take effect and then they'll test his PTT levels. If they're good, we can go home. If they're not, they'll tweak the coumadin and wait another 24 hours. We'll get some sort of home blood testing machine so we can do the blood tests with a finger stick instead of having to go to the clinic. As you might imagine, we're worried about how Riley will tolerate a daily finger prick.
So Saturday is the earliest we could go home. Nobody goes home on Sunday (in our experience) so if the first 48 hour PTT level isn't good, we're looking at Monday. We were on track to go home today but unfortunately the dislodged chest tube and the pneumothorax set us back.
Wednesday, April 18, 2007
Tube is out (again)
Posted by Ken Norton at 4/18/2007 09:40:00 PM
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Just as a head's up, we tried the finger stick method with Cassidy and it was completely unreliable. She was getting (false) INR readings of 8.0 when she needed to have INR somewhere between 2.0 and 3.0. The fingerstick method typically doesn't work very well with kids (I don't know why), but I sure hope Riley is the exception. On the upside though, once Riley's INR is stable (this CAN take a while) he definitely will NOT need it checked daily. Cassidy got to a point where she only needed it checked once every 3 weeks. When Cass got out of the hospital she had it checked 1-2 times a week and then the frequency just decreased from there. Also, as I'm sure the docs have informed you, it's not that Riley can't eat anything with Vitamin K in it. It's just that his levels of vitamin K have to stay fairly constant. In other words, it's not a good idea to go without eating foods high in Vit. K one week and then load up on them the next. HIs diet just needs to stay pretty consistent, but there's no need for deprivation. Anyway, I know that Coumadin therapy is not ideal but, at least in our experience, it wasn't as bad as we feared it would be. I hope that is the case for you guys, as well. Our thoughts are with you and hope for your return home as soon as possible.
Gwynne
Sorry, but there are a couple more things I meant to mention in my last post. Make sure, preferably before you leave the hospital, that the docs have tested the home testing (finger stick) results against the results they get with a regular blood draw (from the PICC line, I assume). It just adds insult to injury if, after Riley is home, he has to get poked twice (once in the finger and once with a regular blood draw) to make sure the results from the finger stick are accurate. Hopefully, the home testing kit can be assessed prior to discharge.
Also, we found it very helpful to have some sort of a ritual prior to, during, and after blood draws with Cassidy. Suzanne, I can talk to you further about this if you're interested. I really think it helped Cassidy cope and "get" that once the draw is over, it's over and she will be OK. I know every child is different but hopefully it would also help Riley (and you!). There are a couple of other things I'd like to talk with you about the finger stick, Suzanne, but I will try and reach you by phone in the next day or so. I'm out of town but can be reached on my cell phone.....but I can try to call you. Anyway, I've blathered long enough. Take care and I hope you're home soon.
love,
GWynne
How Good Is This News?!!!!!
You will all do fine...don't worry to much kids adjust so well to things sometimes and when they do they amaze us!
Riley has pulled through again...he is much stronger then we think,and you have most of the world praying,hugging,sending love,relax...aminute at a time if need be. With much love and happy heart this morning! Melinda
Hip Hip Hooray (AGAIN) but got my dancing shoes ready this time. Just give us the word. I am sure finger pricking etc. will all work out the best for Riley. HUGS TO ALL. Grammy Peg and Wayne
Great news!!! Home again, home again etc. We are celebrating with you and praying that all goes well so you are home by Saturday. Such a wonderful event to anticipate.
Love and Hugs to all,
Larry and Sharon
We so hope you can go home Saturday - it's unimaginable that you've spent almost 2 months there. And now that you're so close to going home, each added delay must be particularly difficult to accept. We're focusing our thoughts and prayers on a successful first PTT test.
It's nice to see all the support you get from those who have "been there" like Gwynne (and others). The prospect of extended coumadin might seem daunting, so it's comforting to hear from people who have done it successfully, especially if they can help to guide you through the pitfalls.
Good luck with the coumadin in the next few days... we're thinking of you.
So glad to hear that there is light at the end of the tunnel. I know this all puts things in perspective, and being home as a family will be the most wonderful thing.
Yeah ! Home !! Fingers crossed. We are coming today after lunch to remind Riley what he has to look forward to (friends and play). Joce and Naomi.
Perhaps in the future less invasive surgeries will be possible:
http://news.bbc.co.uk/2/hi/health/6569283.stm
I have fingers, legs, arms etc. all crossed that you can go home on Saturday. Heck, I will wear a cross my heart bra if it will help.
Hi Guys, Had problems posting last night. Sorry. Just wanted to send some more positive vibes your way. It is time for you to be HOME!! We love you very much and are praying for a departure on Saturday. Miss you! We have our dancing shoes ready! Auntie and Stephen
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