Sunday, April 27, 2008

Echo Update

Mila had an emergency echo a few days back after having some fits we thought might be chest pain. Thankfully, her echo showed that her heart has had some slight improvements. While the moderate mitral valve regurgitation hasn't improved in severity ( it is still moderate ) the opening inside the valve has shrunken slightly. The left ventricle (LV ) that was so damaged is showing some slight improvements in wall function, although the apex ( bottom ) is rocking back and forth instead of contracting properly. That area is is likely damaged permanently.

M's weight has been fluctuating as well, and we've seen a defined increase in vomiting lately, perhaps related to her recent runny nose. We tried small boluses ( 60 ml ) once an hour one day, and then we had to move her to a continuous drip overnight. The first night, we ran her feeding at 35 ml per hour over 10 hours - or we would have, had she not puked after a few hours. Last night, I switched things up and gave her 35 ml in about 10 minutes, and then gave her a break of 50 minutes. Luckily, our pump can do this interval feeding all on its own - I do not need to be awake for any of it, unless it alarms. Usually this only happens if it runs dry or if Mila kinks the line in her sleep.

Hopefully, being able to feed her at night will work well for her. Its very tough for her to sit for close to an hour, five times a day, for her daytime feeds. With this schedule, she gets the bulk of her calories overnight, and a few smaller bolus feeds during the day. This might also help with her eating skills, as she might not be so full all the time!!

Robby continues to grow and amaze me in new ways all the time. Today, he noticed the TV was dirty and did his best to wipe the dust off. He is enjoying his birthday gifts SO MUCH!!! The playdough is getting lots of use, the waterguns have found a home under his bed, along with the swim vest, and the transformer is carried from room to room, crashing and banging away. HOpefully later tonight I will have time to post the pictures that I've taken recently.

The weather is improving after the mid april freak snow storm, and Alex is getting ready to fly to NY for his foundry meeting clients thingy. I hope this years show is a good one - Alex is bringing a few good clients.

Also on the up and up - we're moving!!! Where? Why, apartment 232! Yes, we are moving down the hall. Our landlord - He Who Shall Not Be Named - called and said that there is a 3 br available, would we like it? Why yes, yes we would! Its actually PERFECT and in very good condition. The linoleum is in much better shape, the carpets ( although 80's shag ) are clean, and the living room is big enough to divide into grown up areas and children areas. The dining room is also much bigger, so we'll have enough room for all our crap. We are hoping to be able to move our washer and dryer over to the new place, basically just switching them around. I love our washer and dryer. Oh, and the stove! I refuse to move without my stove! The prospective move date is June 1. I leave shortly after that for Rachel's wedding.

Tuesday is M's GI appointment. Think well wishes our way that they can figure out what the issue is. Alex and I are having to very seriously discuss what to do about the NG tube. It is irritating the daylights out of M and we must think of her quality of life. While my preference is that she magically start eating one day very soon, the chances of that are slim. I do not know what kind of damage I am doing to her by holding her down to re-insert the tube. I can say that her face is raw where the tape is, she rubs her nose constantly, and she remembers that it was *I* who did this to her, and she resents me for it. The prospects of a surgically implanted G-tube have been mentioned several times - both by the feeding clinic and by the pediatrician - in a round about, be prepared in case he mentions it type of way.

And now... off to see if I can upload the pictures before Ms Thing Awakes.

3 comments:

Jax said...

Sarah - glad to hear Mila's echo showed a little improvement. Slow but stready. I'm in touch with the mum of another little girl who has ALCAPA here in the UK - she had a g-tube for a while as she had ongoing feeding problems. I can pass on your e-mail to her if you'd like to chat about it. Her daughter eventually had her mitral replaced as it didn't improve, although I think the leak was always noted as severe post-op. Good luck for the GI appointment.

Jackie
Mum to Emily (14) ALCAPA
www.myem.blogspot.com

Big Fishy said...

Glad about the new apartment.
MoM

Big Fishy said...

What's happened to the photos you promised? Surely you have nothing else to do. Love you all

MoM