Friday, July 11, 2008
Macy Jane’s MRI Current mood: tired
We are finally back at home....safe and sound. My Miracle Baby is sleeping soundly in her bed......so peaceful It has been a long day of sitting and waiting, but things went okay. Macy Jane has at least 30 puncture marks in her arms, legs, and neck. From what you may ask? IV starts! 30 freaking times!!!! I was so shocked when I saw her poor pin cushion of a body. I think 30 times is a bit rediculous, especially since she hasn't been stuck for an IV since her heart cath in April, where they got the IV on the first attempt?! And before that, she was stuck for labs one time since December. It was so many needle sticks that Dr. Joshi gave her a dose of IV antibiotics just to cover her. Thankfully, her reflux has gotten so much better that they were able to put her to sleep with the gas before they stuck her. She has no idea what happened to her. Also, they used Diprivan to sedate her instead of narcotics...thank you thank you thank you! She won't be high all night long now! When she has narcotics she doesn't sleep for what seems like days. Anyways.....
Dr. Joshi made a special trip to see us after the MRI was over. He gave us a preliminary result based off of a few pictures that he saw. However, he had over 3,000 different pictures to look at between now and Monday before we get the official word. So basically I am saying that what we were told today may change on Monday or more stuff will be added. Whew. Her heart function appears to be good, as in it is able to pump the blood efficiently to her body/organs. He also said that her conduit appeared to be okay, not narrowed, from the one angle that he saw it, but he would have to check the proximal images. Her right ventricle is still dilated, but he said that is 100% expected and normal for her diagnosis because she does not have a pulmonary valve yet. So, that part is all pretty good news. We were kind of shocked because he mentioned that this MRI may show us that she needs another heart cath, open heart, or nothing at all. We thought this MRI was to tell us how soon we were going to California and didn't think there were any other options. How wonderful it would be to hear news that she wouldnt have to undergo any more procedures for a while?! We are all praying earnestly for that. She has come so far developmentally and is actually eating a little bit by mouth and if she has surgery it will be steps backwards. However, we are not getting our hopes up. Whatever happens is God's will, no matter what.
Once again, I was reminded today of what an awesome little girl that I am so blessed with. (We are blessed with ) God has blessed us more than our share and I can't wait to see how He is going to use MJ. It is quite obvious to me that God had a specific plan for her life because we have almost lost her many times and technically she shouldn't be here based on her diagnosis. I am so undeserving but I am thankful that I am able to see our beautiful daughter everyday. She lights up my world and if I am ever feeling blue she is always able to cheer me up by smiling that beautiful smile or waving at me. Gosh....I love her! What a tough little girl she really is. To have been through so much and to be so happy.....still. I am trully amazed.
Well, MJ was intubated twice (put a breathing tube down her throat) because the first tube was too small. Because of that they gave her steriods to help with the swelling in her airway. Thankfully she seems to be fine. We will of course watch her closely tonight, but she played all afternoon like nothing happened. If you think of her, please say a prayer that she will sleep well tonight. Thats what she needs the most!
I am going to be busy for the next few days. I work tomorrow and Saturday, have church on Sunday (we are trying to find a new one.....always stressful for me!), work Monday, MJ has her pediatrician appointment on Tuesday. Finally on Wednesday I think I will take a break and enjoy life That is unless something else comes up!
Well, I am going to get things ready for work tomorrow. I hope everyone is doing well and thanks to those of you who prayed for us. Keep it up!
Much Love,
Bethany Jane