Day 3 of 31: Update on Madi after surgery

I wanted to give everyone an update on how Madi is doing........

.......she's not doing the best.  :(

To catch up on everything since Friday, we left the PICU on Friday night and went to the regular floor of Children's Hospital.  She did pretty well that night and they were able to reduce her o2 levels down to 3/4 liter.  (Her base level at home every night is 1/8 liter)

She drank pretty well during the morning, so they gave us the thumbs up to go home in the afternoon.  But, ever since then, we have struggled with her to get the fluids in her.

Before surgery.......hanging out in the waiting room!

Mom........I want to eat!!!!

Part of the problem is she has SOOOO much phlegm and mucous that is coming out of her.  I am not sure if she has caught a little cold that is contributing to it or what.  Not to be too gross, but the mucus is the kind that is really thick and stringy and it makes it next to impossible for her to swallow it.  If she can't swallow the mucus, she certainly cannot swallow milk or anything else.

Second, the only thing she drinks is milk.  No water, juice, pedialyte, nothing.  The milk is phlegm producing anyways....so that is only adding to the mucus problem.  We are watering the milk down to about a 50/50 ratio, but then we have to thicken it to a nectar consistency with the Simple Thick.  The nectar consistency adds to the mucus in her throat, too.  

I love hospital cribs........they are so bouncy and fun!!!

Thank god for toy rooms in the hospital.......it was our saving grace while waiting for the surgery in the afternoon.

I have resorted to taking the snot sucker for her nose and using it on her mouth.  I don't go deep inside, as I don't want to create a pressure that could harm the healing of her throat.  But, I just use it around her teeth and the front of the tongue to suck up the excess junk.  Believe it or not.....she sees me coming with it and she opens up her mouth.  She KNOWS that it is going to help her out!

The third problem we are having is the pain meds.  We just cannot get a handle on controlling her pain. And, unfortunately, there is nothing else we can do.  Any other medications that would normally be given....she can't have.  They make her heart rate drop to dangerously low levels.  We are alternating between Ibuprofen and Tylenol every 3 hours.  The medicine takes about 30 minutes to kick in and she feels great and spunky for about an hour.  And then we have 1 1/2 hour of crying, cuddling and just overall ickiness.  

Cruising the halls of the PICU!

Getting the pain meds in is an adventure in itself.  It literally takes 2 people to give it to her.  One to hold her down and the other to squirt it in her mouth.  We are at least doing the Tylenol in a suppository form so that has eliminated those sessions of wrestling with her.

So......that's where we are at.  Every day we teeter on the edge of having to take her to the hospital to get IV fluids.  She is supposed to be getting 20-24 oz of fluids in her each and every day.  We have yet to reach that goal.  She has been getting 15-18.   But, on Monday, she had only taken in 5 oz. and it was 1:30 in the afternoon.  The ENT nurse was a little upset when she heard this.  So, we are trying harder to get the fluids in her now.  At this point, they only time she will drink is if she is watching Signing Times videos.  So....... we watch Signing Times videos all day in the hopes that she will drink a little bit.

Eating.......she has only ate twice since last Wednesday.  Yesterday afternoon and this morning.  She wants to eat.....she keeps going to the fridge and pantry and signing eat but as soon as you put something in front of her.....she refuses it.  And we have tried EVERYTHING!  But, I guess at this point it is more important for the fluids than the food.

I'm hoping that we are going to wake up in the morning and she is going to have taken a turn for the better............here's to hoping!