Monday, September 10, 2007
Monday Current mood: gloomy
Happy Monday! Today has been an okay day. MJ has been throwing up some, but that problem will be put on the back burner until after her surgery. The docs here think that she will probably need to go back to the OR and have the Nissen Fundoplication done again if the gagging/throwing up occurs after she has her heart surgery.
Also, the amount of blood in her diapers is starting to increase somewhat. I think I blogged about this before? I mentioned it to the nurse and doctors yesterday when she was admitted and they seemed concerned about it. They will be consulting gastrointestinal doctors to come and see her tomorrow, maybe. They don't think it is anything serious because it isn't all of the time and it really does look like a mucousy vaginal discharge, but they just want to be sure.
Besides that everything is going well. My parents were able to find a hotel today that was actually less than $100 a night to stay in. That is the going price out here for MOTEL 6, if that tells you anything about how expensive it is here. There was one hotel tucked away that offers a massive discount to families that have loved ones in the children's hospital, so we are very thankful for that. We were put on the list for a room at the Ronald McDonald house, but it could take a couple of weeks to get one. The social worker should be getting back to us in a few days to let us know the status.
I really am impressed with the doctors out here! I have actually seen more full fledged doctors.....not residents....not fellows....not medical students, DOCTORS!!! There were some great doctors at LeBonheur, but I guess I will always compare every where with LeBonheur. I just can't get over the change in the atmosphere!!! I miss the people at LeBonheur, but as far as the hospital goes....no way! It's just so pretty. I know that when MJ is having her surgery on Wednesday, I am going to go and sit out by the fountain for a few minutes to just kind of "get away". On the roof is a walking area with flowers and benches and stuff also so I may venture up there if I can get the code to the door that leads there.
I am staying with MJ tonight. She is already wrapped up and ready for bed. I think she is still on Memphis time because it is only 9pm here and she is out. Tonight I gave her her last bath and g-tube dressing change before she is admitted to the CVICU. The amazing thing is that she did not cry one time! She usually screams bloody murder when I change the g-tube dressing, but the site looks much better so it may just be that it doesn't hurt or burn when I change it now.
They have a tv channel here that is nothing but Baby Einstein stuff. Macy Jane loves it!!! People always told me that babies can't see this and that, but if you turn the TV on MJ immediately will focus on it and move her eyes as the characters on the screen move. You can do anything you want to her during that time because she is so focused on it! Today, she also made a cooing noise, but she hasn't done it since, the little booger! She also actually reached out for her green frog today, multiple times!!!
Well, I guess that is it. Most of that wasn't very helpful or useful information, but I am just passing the time tonight. I do not dread tomorrow, I am ready to know exactly what the Lord has been doing in my little girls heart the past 3 and 1/2 months. Given her history of taking a couple of days to come off of the ventilator, they will more than likely leave her on the ventilator after her heart catheterization and put her in the CVICU. That is just as well in my eyes because it is less trauma to her throat. I can still sit back there with her, so I will stay tomorrow night also. They said that her surgery will probably be around 9am on Wednesday morning (11am Memphis time). Dr. Hanley has a conference with the cardiologists on wednesday mornings at the crack of dawn and will do her surgery after the conference. I hope he drinks lots of Starbuck's during that conference Somebody get that man an IV will nothing but Starbucks in it.....haha. Speaking of, there is a starbucks bar in the cafeteria here and they are actually cheaper than going around the corner to the local Starbucks. So instead of my Venti White Chocolate Mocha with 3 splenda's costing 4.75, it is only 4.20 I am going to have to cut down on the size and the frequency of getting them, or I will be broke in a month.
Well, thanks for all of the prayers and encouraging messages. Tomorrow and Wednesday will probably be the longest days of our lives, so far but God is with us. I will post more as I know it, I can promise you that. No matter if it is good news or bad.
Much love,
Bethany