Finally, the house is quite, girls are in bed and I can breathe and regroup some after yesterday and today.
So here's what happened...Gracie was in the cath lab for just under seven hours and came out extubated with 8 more coils!! (She now has 25 coils in total, you should see her x-rays the upper right lung is almost impossible to see because that is where the majority of the coils are!) Dr. Day was concerned with bleeding around her bladder because he had to go through a higher vein to place some of the coils in the correct spots, so he wanted to watch her until at least 8pm to make sure she was ok.
The good news is that they didn't find anything too alarming. They debated placing a stint in one of her pulmonary arteries, but decided to wait and see how she does. The pressures in her lungs are rather high, not too high, but higher than they like, so because of that we have added another medicine to her regimen, sildenafil or more commonly known as viagra. It helps relax the lungs and surrounding veins and arteries, thus helping with the pressures.
They also found a plural effusion, it is small and can only be seen using ultrasound, but it is there. So instead of decreasing her diuretics, we have gone back to bumex 3 times a day, aldactone 2 times a day and have needed to add sodium chloride back in at 4 times a day. Which also means more blood draws to check electrolytes.
When Gracie's cardiologist, Dr. Jou came by to see how she was doing I asked him if there was still a chance of possibly coming off of the oxygen, maybe in a month after she has acclimated to her new hardware and he laughed at me! Now Dr. Jou and I have that kind of relationship so don't be alarmed that he laughed in my face, its just that we know Gracie and nothing is ever easy with her. So in addition to not getting off the oxygen any time soon, the doctors also want Gracie's oxygen increased from 1/4 of a liter to 1/2 liter---all this is in an attempt to keep her pressures down in her lungs.
Needless to say things didn't happen the way that I had hoped they would after the cath but it could be worse. I'm having a hard time realizing that at least for the next few years Gracie will have to live with oxygen 24/7 and I know that there are many heart kiddos in similar or worse places, but it just makes it hard.
5 comments:
I hope Gracie is feeling good after her long day. It is hard, very hard to add more meds and hear the oxygen stays longer, but at least you are sure she is getting the best care possible.
Words can't really help, but I know prayers can, so I will pray for Gracie to get better everyday and for you to manage her care easily and enjoy every moment with her stress free and to the fullest.
She is just adorable!
I am so glad she made it out of cath okay and that you guys are home. I am sorry for the not so great news, I will keep you in my prayers. Stay strong, that is about all you can do for now.
Staci (Bridger's mom)
I love that Gracie Girl! She is such a stinker, always pulling out that oxygen tube.
It was so fun to be with her last week. So many times, I forgot that she has any health problems. She has so much personality it seems to cover those health problems up. Nothing like a 7 hour surgery and 8 coils to remind me.
Pleaase post more videos and pictures of your girls. I can't get enough!
Man, I suck, I really need to check your blog more often! SO glad to hear that Gracie is doing well and things went okay, but feel so bad that we wern't there for you guys! How are you doing now? Please let me know if there is anything we can do for you guys! Remember dinner on us ANYTIME! BTW we saw Dr Lener and Dr Ogorman yesterday I couldn't remember who your appointment was with but I am thinking it wasn't them. Anyway, we'll have to get together soon! Lots of love from us!
still thinking of you. I do have to comment that Morgan is growing up! Wow! She is SO SUPER CUTE!
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