We decided to go ahead and blog this morning since we plan to spend the day together as a family and probably won't have time to blog today. Merry Christmas to everyone! We are excited about Claire's first Christmas!
We are so thankful for our special gift this year of our daughter. There is nothing that compares to that. She is a special gift from God above. Each day when we get to see her or hold her is like opening the present again and again.
Claire had a good night last night. Due to my severe headache yesterday, I forgot to mention the plans that the doctors are working on for Claire. Basically they are trying to plan a multidisciplinary conference with the neonatologists, cardiologists, surgeons, and radiologists to get every ones ideas, opinions, and thoughts on what to do for Claire's heart and liver.
The doctor yesterday said there are basically 4 courses of action they could take:
1. Check with cardiology to see if Claire's TOF is ok enough to do a 4-5 hour liver surgery to remove the cysts. If so, then they could proceed with the liver surgery. If not, they'd have to take another course of action.
2. Do a temporary procedure of draining the cyst around the stomach and intestines until her TOF is repaired, then do the cyst surgery. I didn't really understand this procedure very well.
3. Keep draining the cyst as they have been doing, but this is definitely not the best option b/c of it's risks.
4. Sclerosis of the cyst. Basically this would be to aspirate the cyst like they have done, then inject some type of material (alcohol) that would make the cyst walls stick together and not allow it to re-accumulate. This would cause it to form like a scar-like material that would stay in there forever. The cyst would not be removed surgically.
The main concern is that they are not 100% sure what these cysts are. They are 99.99% sure they are mesenchymal hamartomas though. A radiologist at Duke that has written a book chapter on liver cysts/masses says she thinks it is definitely a hamartoma. But they don't want to do the sclerosis if it is not benign. I don't think they have gotten any of the labs back on the fluid they have sent off yet. They did draw blood labs yesterday and her electrolytes are perfect. They worry when they drain the cyst that they are taking so much fluid from her that it could strip her body of electrolytes.
I am very stressed that the doctor taking over for the next few weeks will not remain on the path that we've been on this week. We have FINALLY started getting somewhere and I don't want it to stop. That will be my main goal this coming week.
Claire has been eating A LOT since they drained the cyst. Her poor belly actually has room! She was eating on average about 40-50 mLs each feed before the draining. Since the cyst draining, she eats about 60-70 mLs each feed. This is good because more food means growth! And growth is what they need to do surgery. She gained 120 grams last night which is a lot. So she's back up to 6 lbs 4 oz. The nurse said it's probably a combination of the added milk plus probably some re-accumulation of the cyst. I noticed yesterday that her belly button was sticking back out.
I told the nurse that I would really like to be at the multidisciplinary conference. She said it is a possibility and she'd let them know. I probably won't understand anything since they'll be talking in doctor terms! But maybe I will learn something if they let me attend.
The nurse also said she would ask them at rounds this morning if they'd change her feedings to ad lib on demand. She's on ad lib now where she has a minimum amount they want her to eat each day, but she can eat more if she wants it. Ad lib on demand is basically instead of waking her up every 3 hours to eat like they do now, they'd let her wake up on her own (but no longer than 4 hour stretches). This would be nice especially at night if she's sleeping, they wouldn't have to wake her up to eat every 3 hours.
Well, since I forgot to add all of that yesterday, there you go!
Enjoy the day with your family and friends! Merry Christmas!!
PS - I was validated again yesterday by the doctor for my intuitions about Claires's cyst. He announced at rounds yesterday that the lesson learned here was that they as pediatricians should learn to listen to the parent - especially one that is there almost every day! Yay! Now let's just hope the rest of the doctors know this now in our situation......
The Scott Family