Thursday, October 04, 2007
Wednesday Current mood: crushed
Tonight I am both happy and crushed at the same time. First the good news and the blessings of the Lord: Macy Jane is off of the ventilator once again, on no oxygen (on 2 liters of flow just to stimulate her to breathe deeply, but should be off of that by the morning) and is more comfortable than last time. She loves her pacifier and the Baby Einstein channel. I do not think she has figured out who we are yet, and appears to have a few lasting effects of the withdrawals, but overall much better.
Now onto why I am a little upset. My dreams of having Macy Jane at home for Halloween were squashed in about a 2 minute conversation today. Dr. Hanley, at this point, wants to manage her extra blood flow with medication. They started her on Captopril yesterday to help even out the blood flow in her body. He does not feel that she is ready for surgery and the Cardiologist told me today when I asked him point blank, that Macy Jane would not be going home or back to LeBonheur until she has had her complete repair. I cried when he told me that. All of my hopes and dreams of getting a normal life back were shattered right then and there. Perhaps I should accept that this is my life for now. It is so hard though being away from family and friends. I think the Lord prepared all of us for the separation though because we didn't have a lot of visitors even when we were in Memphis so we kind of got used to it just being family around. It is different this time though because my dad isn't able to be here every night and my sister and brother and in-law siblings are not able to visit. However, the Lord has blessed me with a wonderful mother and husband that are here with me each day.
Oh how I had hoped to be able to dress MJ up for Halloween and have a normal Thanksgiving and Christmas. I do not know what the plan is for her surgery, originally the repair would be done in 3-6 months. However, the cardiologist told me this morning that the surgery would probably be sooner than 6 months. Perhaps I should set a new goal of being home by Christmas. However, I do not want to be disappointed again so I may just sit back and relax and just see what the Lord has planned.
My sister, God bless her, is always willing to take my phone calls in the middle of thenight. The 2 hour time difference is hard to get used to. I will send a text at 10pm and then realize that it is midnight there. However, tonight I needed to talk to her and get her always useful insight. One thing that she pointed out to me is this: God has blessed us more than we even know or can fathom and the fact that we still have Macy Jane in our earthly lives is a HUGE blessing and gift from God. He has plans for this little girl, it is obvious. Yes, it is frustrating that we keep hitting road blocks, but everything is happening for a reason. I guess God knew that in my heart I was fearful of taking MJ to our house and something happending to her and it taking us 45 minutes to get to the hospital. Now I don't have to worry about that. Next time that she sees home, she should be able to stay there for a long time and be pretty much healthy.
The docs here are hard to understand at times. The purpose of the heart cath was to see if her heart was part of the problem with her metabolic acidosis. Well, they supposedly got their answer: 4 times the amount of blood going to her lungs than her body. Well, now they are wondering if she has a problem with her metabolism and some other things. Pretty much all of the things that she was tested for at birth, a long with her PKU. They consulted a geneticist to see her. He came around this afternoon and said that based off of her labwork here he didnt see a problem, but would check to see what Tennessee checks for in their newborn screening. I told him that everything she had checked before, checked out okay. They will get back to us as to what tests there were left to do. Pray that everything is normal. Everything so far has been related to her heart defects that remain, but it seems like the docs are covering their butts and ruling every little thing out. The geneticist was suprised that MJ had never had a renal (kidney) utrasound before, as kidney problems are common in kids with DiGeorge. I told himi that so far nothing has ever been wrong with her kidneys and that in the womb they looked at her kidneys and they were fine. However at some point they are going to check them for their peace of mind. Fine by us, lets make sure everything works while we are here and then if something is wrong let's get it taken care of.
Please pray as we have many decisions to make in the next few days and weeks. It all revolves around what Steve should do for a job. The question now is when is MJs complete repair supposedly going to take place and in the mean time does Steve go back to Memphis to work or does he try to get an assignment out here. I would love to have him out here as he is the other half of me and I need him, but I also know that we have to do what is right for our family, regardless of my feelings. Please pray for the Lord's guidance. We want to make the right decision.
Well, I guess I will go and read a book for now. MJ is resting fairly well tonight. she wakes up when her pacifier falls out which is a lot since she hasn't quite figured out the suck breathe pattern yet. It'll come though.
Please pray that MJ will not have any more setbacks. I do not mind staying out here, I would just like to be able to move to a regular room so that I could sleep at her bedside and hold her whenever I want to and try to give her a most normal life as possible.
Much love
Bethany