Sunday, June 24, 2007
Sunday Current mood: annoyed
All I ask is that people keep praying. Each day we are here things seems to be getting a little bit worse. Today is a whole new day with new issues.
She is continuing to throw up more frequently. Thank the Lord it isn't every feeding, but still......it's too often for comfort. Last night she threw up 40cc of nothing but straight milk. It looked like I had poured the milk from a jug when it came out. Thankfully she didn't throw up the full 80cc. I am starting to put a cup beside me at all times so that I can catch what she throws up so I can count how much it is. Sounds crazy I know, but when you have 5 different residents and 2 doctors asking you "how much" all of the time and you say Oh i don't know....probably 15cc or 20cc, it gets old. Now, I will give them exact answers.
The other issue is that MJ is now on oxygen. This morning since about 6am she has been extremely fussy, clammy, sweaty, coughing and her oxygen sats have been dipping down in to the 50-60s. I finally had my feel and called the nurse and asked her to please get in touch with someone (eventhough she had already called them and gotten the runaround) and that I wanted to see a doctor. They did blood cultures, lab work, a chest x-ray, & urine culture to see if maybe she is getting an infection somewhere or in congestive heart failure. So far, everything is negative--but we still have a baby that isn't resting good and she just isn't herself. SOMETHING is wrong. Maybe this is maternal instincts kicking in, but she does not look right to me. She is doing better on the oxygen and we are going to try to feed her in a little bit. I am a little worried that it is related to her heart defect and those tiny arteries and that they would want to do a heart cath. We'll see.
I have come so close to going off on a certain doctor that is just an absolute idiot. I know it isn't nice to talk about people, but he is a complete waste of time and should be working with rats and mice, not humans. Keep in mind that this is the doctor that is on call for our cardiologist and the one that wanted to send us home last admission with her losing weight and throwing up EVERYTHING. Well, yesterday he came in and said everything looks good and that he thought she could go home and asked me how I felt about that. Sorry he asked because I told him exactly how I felt about that. Needless to say, we are still at LeBoneheur and not home. Anyways, he started asking me questions like what the plan is for Macy and what has Dr. Joshi been telling us etc. Well, I mentioned that we are trying to get her to gain weight for her heart surgery and we need her collateral arteries to grow. He proceded to tell me that WE ( Steve and I) DID NOT WANT TO PROCEED WITH SURGERY and that was what the people in his group thought because they have a meeting once a week to discuss each patient. I was speechless. From February 3rd, 2007 to now we have always said do whatever you can do regardless of money or long distance travel. We trust Dr. Joshi and what he thinks. If we didn't want surgery why would they be sending her info to Dr. Hanley---the SURGEON---TOMORROW?????? Then he proceeded to tell me about how that her surgery might not benefit her and that she could go for years and years without having the surgery. Basically, he made me and my mom feel like the doctors had not been up front with us and that we were being led on and that there was nothing we could do. He continued to insult my thinking by saying that us sending her to California isn't necessarily going to fix her and that it isn't just a one time surgery and she's perfect. DUH. Don't you think I know that? I know that she is facing multiple open heart surgeries and heart caths all of her life. He also brought up her having DiGeorge Syndrome and all of the life-long complications from that. It was almost like he was saying inadvertently (I am sure I spelled that wrong) your baby is going to be sick her whole life, why are you even proceeding. Both me and my mom got that impression so it isn't just me misinterpreting things. One thing he doesn't know or may not understand is that I serve a powerful God that knows exactly what He is doing and He can perform miracles. God gave me and my family Macy Jane for a reason. I do not know how long she will be on this earth, but each day is a gift from God and I have faith that His will is going to be done. I am not a stupid and naive person. I know that the outlook for MJ is a slippery slope and it is a very real possibility that she will not make it through all of this. Am I heartbroken, yes. Is it easy to sit here and say this stuff no. I am a mom with a heart and emotions but I am a reality person and I have to face the facts.
I don't know how many days MJ has on this earth, but the Lord does. He will get me and my family through each day that passes, even when I think that the light at the end of the tunnel must be broken and I cannot take anymore. I have to keep believing that there is a greater purpose in all of this.
On another note....as to my last blog. I have recieved many messages and have read the comments about it. Like I said it is my opinion and if peoples feathers got ruffled over it (which apparently they did based off of the messages and comments that I have received), it is nothing personal--I wasn't attacking any one person. I know that insurance is expensive and hard to get a good insurance and all of the difficulties. TRUST ME. I know about insurance, way more than I want. Anyways, that is all I am commenting about that.
Well, that is all for now. Maybe one of these days I will be able to post a happier more upbeat post, but today just isn't that day. If anyone would like to come and visit us while we are here you are more than welcome to. It gets old sitting up here day after day after day and a lot of people that I have talked to have said that they were afraid that she couldn't have visitors. As long as you are or have not been sick recently and you don't have children that are or have been sick recently, it is perfectly ok.
Hope everyone is doing well. Thanks for the prayers!!! Oh yeah! I almost forgot.....the Lord did give us a blessing today. Out of the FIVE residents that came in the room during the whole fiasco earlier, one particular one named Dr. Blake stuck out to my and mom. He was very upfront with us and took the time to make sure I was okay and MJ was ok. To the point that he almost hugged me, but instead just touched my shoulder. I guess I had tears in my eyes because I couldn't get MJ to calm down etc etc. When he left the room my mom said I really like him, there is something different about him, he is going to be a great doctor. Well, a little while later he came in to tell us that so far all of the tests looked normal and he starting chatting with me and mom. Mom made the comment that God is in control and Dr. Blake picked up on it and told us that he firmly believes that God called him in to medicine and that he prays for each of his patients and he believes in miracles. What a blessing! That is the first time that a doctor (besides Dr. Schneider--the guy who saw us when pregnant) has mentioned God, miracles, etc. We really needed that. Anyways, just thought that I would share that little ray of sunshine!