Friday, November 16, 2007
Lord Help Me Current mood: pissed off
Lord Help Me because I am about to scream and shout at the nurse practicioner's, residents, physician assistants, fellows, and doctors. Maybe if I do that and wear bright red and purple polka dots, someone will come in to this room and talk to me face to face and let me know what the heck is going to be done with my daughter's health.
Shot to hell are the plans I had for going home on Friday. Perhaps the Lord is trying to teach me that when I make plans He doesn't like them and that I should give up all hope of going home. Macy Jane is back on a 7 day course of Vancomycin. Why you ask? Because this morning when I changed her dressing on her chest it was blazing blazing red AGAIN and had some pretty nasty drainage on the gauze. I immediately called the nurse who called surgery and asked someone to come and look at it. The fellow came and squeezed it and pushed on it and rubbed it and said that although there isn't any obvious drainage, it definately looks a bit more angry/aggravated than it should. They drew a CBC and CRP.....white count is actually down a smidgen to 17 but the crp went back up to almost 4 (an indicator in babies of inflammation/infection).....so here we go again on antibiotics. Seven days of therapy is next Thursday being the last dose.
The next issue is that Macy Jane is continously throwing up. Most of the time it is projectile and gets all over her and me and anything near her. Other times it is so sudden without warning and it just runs out her mouth on to her clothing. The pediatric surgeons said that her barium swallow and her upper gi show that she is refluxing but she is refluxing above her stomach and they think that ENT doc should be consulted. So the ENT doc came (although they never came in to speak to me which pisses me off.....they are getting paid to do the consult so by golly at least come and show your freaking face to me instead of going through someone else) and said that the problem was not a throat/vocal cord issue but definately a GI issue related to reflux. ENT talked to GI and both of them are supposed to be going to the peds surgeons and basically saying that the Nissen needs to be repaired.
This is where I am frustrated. MJ had the Nissen before and it lasted a little over a month. They are supposed to last for years! If it is going to last for a month again then why put her through the surgery again. On the other hand, she gains weight and now she is losing weight again. She cannot keep going on like this because she is already behind in her growth and needs nutrition to heal properly, which she obviously is NOT doing right now.
I am thoroughly disgusted right now with the whole entire situation. I am tired of the doctors talking outside of our room just enough to where I know they are talking about MJ just from the bits I can hear and then they never come in and talk to me. I just don't get it. Anything you have to say about my child and your opinion....please come in and tell me. I sit in this room day after day and have nothing but time to think about stuff and I would like someone to come in and actually talk to me besides a nurse practicioner. Thank God for the NPs because without them, I feel like nothing would ever get done. Most of the nurses are wonderful but they just simply don't have the time to do what the NPs do.
I am starting to fail to see the purpose in all of this right now. It isn't like I am living a horrible lifestyle where I go out and get drunk, smoke, do drugs etc and God is trying to tell me to change that. I rely on God every single day and pray for His blessings, strength, guidance, and protection but right now I feel as if all of my prayers are not being heard. Is it too much to ask that I be able to take my baby home and give her a somewhat normal life? Heck I will compromise.....I will settle to have her back at Lebonheur just so that I am back in Memphis where at least we have family and friends. I am starting to realize why God let us not have very many visitors in the 3 and 1/2 months we were at LeBonheur......perhaps to prepare us for being out here for so long without anyone except me, steve, and my mom.
Thank the Lord that my dad, sister, brother, and sister-in-law are all flying in on Monday and Steve is flying back tomorrow. I am so ready to see some different faces it isn't even funny. Just to be able to talk to different people about things other than health. I talked to one of my friends on IM last night and it just took my mind away from here for an hour and was wonderful.
Anyways, I don't mean to sound like such a downer, but I have to vent occasionally. God has brought us this far and I know that He isn't going to leave us high and dry. It just gets harder and harder every day when we see or hear of people that were way sicker than MJ getting to go home. In due time I guess. I just don't want her to be a year old and finally getting to go home. That would break my heart.
Please keep us in your prayers. The specific things to pray about:
1. That MJ will stop throwing up as much
2. The doctors will make a final decision about what they are going to do about her unwrapped Nissen.
3. That MJs wound will start to heal again without infection
4. That she will start to gain weight again consistently
5. Save travels for my family
6. Sanity for me.
Thanks ya'll!
Much love,
Bethany