Today's appointment with Dr. Liske went pretty well. His sats were 88-90%, and his blood pressure was not as elevated. The bad news is that he lost 2 ounces...he's down to 10 lb 9 oz. Dr. Liske thinks this might just be due to the increased Lasix (diuretic) dose. He may have just gotten rid of some extra fluid over the weekend. With the way he has been eating (or not been eating), though, I wouldn't be surprised if he really has lost a little. That is not what I want to see!!!!
As far as his progress, Dr. Liske said that he looks better than he did on Friday. His breathing is a little slower, his hands and feet are warmer, his liver is not as enlarged, and his color is good. All of these are good signs. We are on the right track, but Dr. Liske said it is just going to be a long and slow process. Another opportunity for me to learn patience I guess. The only real concern Dr. Liske has now is Colby's weight gain. We have got to get him eating more again!! If he doesn't start eating better, our next step would be a feeding tube. Dr. Liske doesn't think this will be necessary, though...he thinks Colby's eating will improve sooner than later. I just wish it would improve now!!! Watching my baby not eat when I know he really, really needs to is beyond frustrating for me!
We will return to Dr. Liske for another follow up the day before Thanksgiving. Dr. Liske will actually be out of the country for a couple of weeks, so I'm hoping that Colby continues to improve while he is gone. I would hate for Colby to need him and him be gone! We are very attached to Dr. Liske!
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6 comments:
Hang in there Colby! God has wonderful plans for you. May God bless you and your family.
“The LORD bless you and keep you; The LORD make His face shine upon you, And be gracious to you; The LORD lift up His countenance upon you, And give you peace.”’ - Numbers 6:24-26 (NKJV)
Stay Strong!! God is with you all right now so hold tight to that. Thanks for the updates although I can't imagine when you have the time. May God Bless you all and if there is anything I can do other than pray let me know.
Jason & Becca -
Stumbled on your blog from Tiffany D's, I've been so out of the loop. That little Colby's a fighter and comes through every downturn with a charming smile, as if to say, "What were you guys so worried about, it's me remember?" Continue to keep that smile in your hearts. We'll keep it in ours as we add our prayers to the many others focused your way!
Kara and the Gees
Hey Becca & Jason... I think about y'all all the time. I'm so glad you are among the bloggers, the best way to communicate in this crazy busy world. We keep you in our prayers and applaud your strength.
Dude. I want you to know that Meghan and I have been praying for you guys...it is great to see that Colby has come home. We know that God has his hands wrapped around your family right now and is holding you tight...
Can't wait to meet the lil' man
hi, i found your blog from steve's "Adventures of a funky heart" blog. i hope you don't mind me barging in like this but i really needed to hear these stories when i was in your frustrating position.
My twin cardiac boy is 20 months old and he has tricuspid atresia. we went through the very same lasix/losing weight/ cleaning up after feeds until his first op., the bi directional glenn. he was also on aldactone. the day after his op., he started eating things that he never ate before...porridge, apple.....the cardiac team gave us our son back. it is hard to be right where you are with him. you are doing a wonderful job. I remember expressing all day so that he could have mum's milk, but on the night feed to give me a break, i gave him formula. we added polyjoule to it and the lasix/polyjoule meant that he had issues with very dry number twos. he took an hour to feed. (that's six hours of feeding!)The polyjoule really helped his weight gain. it worked out better that he had a small bottle as he would get tired and stop feeding, but with the bottle he kept it to his lips for an hour like a pacifier. i would feed my other boy and he would take less than 5 minute! The support i got was an early childhood nurse came to my home once a week until the operation at 7 months to weigh and measure him.
we have another operation when he is 2-3 years old, and we bi-passed the banding operation that can be recommended sometimes.
thankyou for reading this (if you got this far)
carolyn compton
tntcabaker@hotmail.com
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