Friday, May 1, 2009

Do Hospitals Comp the Rooms?

Update from Thursday, April 30 and Friday, May 1 - I was talking to my dad this morning and he asked if the Cardiologist had an answer for us yet on when surgery will be. I told him no and his next comment made me laugh - he asked if it was possible for the hospital to comp our room and all our costs since they can't seem to coordinate everything for surgery. I'm thinking that the answer is going to be a very loud and resounding no! Elle had a pretty uneventful Thursday. Every time the cardiologist walk into the room for rounds, they say the same thing "it's status quo until she gets surgery." Yesterday she slept for a majority of the day. She actually slept through occupational therapy - not once - but twice! Our poor therapist was doing everything she could to wake her up and Elle wouldn't even open one eye. The only thing that really got Elle going yesterday was a bath. She hates baths almost as much as she hates putting clothes on! I think the only two people that have the magic touch when it comes to baths are Vickie and Tanya. They might need to come over once we get out of the hospital and give Elle her baths! In the evening, I can't believe how quickly the hours go by. We showed the night nurse how to suction out Elle's nose at 8:30pm and were hoping to be in bed early. Midnight rolled around and both Lee and I were still up. Sometimes she just needs some daddy/daughter time to help her fall asleep! Today hasn't been too eventful either. Elle made up for her sleeping through OT yesterday because she took 7 cc by bottle! This is the most yet!! If she continues with the 7 cc and starts taking more, she will be eligible for the swallow study. I am praying she starts taking more by bottle! As much as I hate sitting around here waiting for her to have surgery for the feeding tube, it really is our only options. Elle just can't figure out the whole eating thing! We can't go home with the NG tube (feeding tube down her nose) because of the stints she has in her nose and we can't go home with the OG tube (feeding tube down her mouth like what she has now) because 1) our cardiologist won't let us and 2) neither Lee nor I want to risk her throwing it up and we would have to re-insert it. We already have to stick a catheter down her nose 8x a day - I don't want to have to deal with a feeding tube out her mouth too. From what I understand, the G-Button is a heck of a lot better when it comes to ease of use for the parents and peace of mind. The cardiologist came by this afternoon and told me that they are continuing to try to set up Elle's surgery. They will be taking her to the CVICU after surgery. I am so thankful for that - but it also means we have to move out of our room on the 15th floor when she has surgery! Our parents are going to have to bring a dump truck for the amount of crap we have in this hospital room!! I am praying for patience for all of us (including Elle) as we wait to hear what the doctors have to say as far as scheduling the surgery goes.
1 Timothy 1:14-16
"and the grace of our Lord overflowed for me with the faith and love that are in Christ Jesus. The saying is trustworthy and deserving of full acceptance, that Christ Jesus came into the world to save sinners, of whom I am the foremost. But I received mercy for this reason, that in me, as the foremost, Jesus Christ might display his perfect patience as an example to those who were to believe in him for eternal life."


Meredith said...

Hang in there and keep your chin up....they'll get the surgery done soon and get you all home. Love the little sleeper on her in the pic of she and Lee....I remember it well and she looks so snuggly in it!!!!

Becky Mc said...

Elle looks so comfortable sleeping on Lee, what a precious picture! I volunteer to come give her a bath when she gets home, I love bathing babies! Praying for her surgery to be soon so you can come home!

Calista said...

I came across your blog and just felt like I needed to tell you to remain strong. God does amazing things! I'm a pediatric nurse and have seen some pretty sick kids that were healed by God's hands. Your daughter is loved by so many and God has his hands wrapped around her. I will continue to pray and I hope her surgery is soon. You are right about GB and how easy they are. Most of my patients have them and they get the job done. I will also pray for you and your husband. May God give you both peace, rest, and strength. God Bless.