We had our first pulmonolgy appointment this morning. Everything went well. Ruby was sating in the 95-100% range, which is good. I really like the Dr. He think we can take her off the diuretic completely and at the same time get rid of the KCl. Chris and I are both apprehensive about stopping the Diaril, but we see the Doctors point. The dose she is on now is for 3.8kg. She is now 4.7kg. Her surgeon had said they would just let her grow out of it. The pulmonologist thinks it's time. We are to watch her for signs of respiratory distress, which Chris and I know all to well. If she starts having trouble we are to call and they will call in an order for a dose of lasix and restart the diaril. It's still scary, before when she got weaned off of something we had a monitor to tell us exactly what is going on. Now it's just Chris and I counting breaths and determining how blue is blue. On the bright side we didn't have to give her KCL at noon and she didn't vomit. We also got information on the RSV shots that will start in October. The doctor also wants her to start seeing a speech and occupational therapists. He's concerned that some of her feeding problems might be oral aversion, which I was starting to think. I just didn't want to admit it. We go back in a month for check-up, x-ray, and echo cardiogram. The doctor seemed really into getting another echo. EVERY ECHO she's ever had showed a normal heart. I find it funny that's the first thing he wanted, after all the controversy we had at CHOP over her getting one after she came off ECMO. Really though ECHO's are non-invasive. He did mention that the PPHN could come back. Which no one at CHOP ever did. I'm not so sure what to think about that. It's hard being here in Austin and not at CHOP anymore. Bottom line is we like the Doctor and he seemed to know his stuff. I can always pull the "Why don't you call Dr. H at CHOP?" card.
One thing the pulmonologist did suggest is that we have a surgeon here in town follow up on Ruby's incision problems. I was going to give it a couple more days and then call Dr.H and see what she suggests. We will need to see someone to snip a couple of the stitches that are surfacing.
Pictures will be added once Chris fixes the server.
Sorry for all the typos for those of you who have google reader. That's what I get for writing a post while holding Ruby.
Hi Holly, I'm glad to hear
Hi Holly,
I'm glad to hear you like your Dr., that's really important. Ruby is such a trooper, I look forward to reading more. I'm Hua, the director of Wellsphere's HealthBlogger Network, a network of over 2,000 of the best health writers on the web (including doctors, nurses, healthy living professionals, and expert patients). I think your blog would be a great addition to the Network, and I'd like to invite you to learn more about it and apply to join at http://www.wellsphere.com/health-blogger. Once approved by our Chief Medical Officer, your posts will be republished on Wellsphere where they will be available to over 5 million monthly visitors who come to the site looking for health information and support. There’s no cost and no extra work for you! The HealthBlogger page (http://www.wellsphere.com/health-blogger) provides details about participation, but if you have any questions please feel free to email me at hua@wellsphere.com.
Best,
Hua
Em has been on the same dose
Em has been on the same dose of diuril and KCL and she is 12lbs heavier. Dr. P at chop doesn't like to wean in the winter and em pees off a lot. We have had no issues so we stay on it. I do hate the kcl but it goes with the diuril...Make sure you watch he closely. We show no signs of PH any more but we are weaned vey slowly from the viagra. We have showed no signs since last Sept but every doc is different. Best of luck with all.
So glad that you are finally
So glad that you are finally home. Love the picture of Ruby with the sunglasses.I must say, she looks great, you wouldn't even be able to tell that she was in hospital.
Glad to hear that your Dr. is a good one. I know the feeling, it's hard being away from the hospital and the medical staff you've learnt to trust. It took us a long time to stop pulling the " Kings hospital" card :0).
Sounds like you are in very capable hands though.
Hope that Ruby does well without the diarlyte.
Hugs.
Hi there-So glad to hear
Hi there-So glad to hear that Ruby is making her rounds in Austin now and that you like the dr. I hope that you will soon have the technical support that you felt so comfortable with in Philly. At least in Austin, you have a huge circle of emotional support!!! I wish I was there to see her make all those cute faces and hear the cute sounds. xoxo Sarah