Thursday, June 21, 2007
Tired Current mood: exhausted
This morning has been rough! I was up with Macy Jane feeding her and "watching" her until 4:30 this morning and then Steve was going to feed her at 6am for me so I could get 3 hours of solid sleep (trust me.....that is like sleeping all night!).....well at 5 something I hear Steve getting her bottle ready and MJ crying. She somehome pulled out or coughed up her feeding tube in her sleep. All I know is that it was in there at 4:30 when I layed her in the bed.
Steve tried to put the tube back in but she was screaming so much it was difficult for him--plus we had Nancy Nurse in the room (she is the nurse that Steve politely got "fired" from taking care of MJ one shift last admission) and I think she was making him a bit frazzled. I couldn't take listening to her scream anymore so I put the tube back in. I feel so sorry for her and I hate having to put her through all of this.
I am not in a good mood today. It could just be a lack of sleep but things are getting to me. Her right eye is matted shut with yellow drainage and I have been trying since we got in here to get SOMEONE to reorder her eye ointment that she was on at home and we have yet to get it. Thankfully my mom is at my house right now getting our own supply. I will be damned if I am going to sit here and just let things go by this time without demanding some action to be taken. It is starting to piss me off royally that everything is such a hassle. I am not being the mom that is a nurse that thinks she knows everything either. I will be the first to admit that i know very little about babies and children, but I have God given common sense and her eye being matted shut IS NOT NORMAL. Everyone keeps telling me that we need to worry about her nutrition first and then the other stuff can be dealt with later. Um.......no. I am very concerned about her nutrition BUT infection hinders that as well and something needs to be done.
Having to go through all of this sort of changes the way that I view my patient's and their family members. It is hard being in the hospital day after day and not getting any answers and having nurses not answer questions and make empty promises or tell you something to just get you to shut up. You do start to feel like just another room number.
One other thing that I need ya'll to specifically pray for (besides her to start gaining more weight) is related to her heart/lungs. Yesterday I talked with MJ's cardiologist about her surgery and our options etc. We discussed the possibility of her needing a lung transplant if they were unable to use her collateral arteries since they were so small. He gave some not so promising statistics about the success/survival rate in children who have lung transplants and does NOT recommend that we go that route (although he said if he ended up doing that he would still support our decision). So. We are earnestly praying that her arteries grow much much bigger. They are at least half the size that they should be even now. If she isn't gaining weight and getting bigger, odds are they aren't either. Also, even if she does gain weight, there is no guarantee that the arteries will grow.
If they do not grow, it does not sound like there are any options other than the lung transplant. Now, this is coming from a doctor that isn't a cardiac surgeon. Dr. Hanley (surgeon in cali) may be able to do things that Dr. Joshi isn't aware of etc. etc. So please please please pray that her arteries grow. We won't know if they have until closer to when they want to do the surgery---if they CAN do it.
I know that God still answers prayers and He is with us through this all and has a plan, but it is so hard. I just want some good news for a change. I know that I have to suck it up and keep going because MJ needs a strong mommy to help her but sometimes it just gets the better of me. I feel like a two year old because there are times that I just want to sit on the floor and beat the heck out of a wall with my head, fist, feet....whatever I can. I try not to question "why us Lord" but that too is hard. I am trying to see the purpose in all of this but so far I am not having any success.
Well, I have vented enough. Don't worry, I am not depressed. I am just a tired, stressed, hungry, pissed off mom We are going with MJ at 10am for her swallow test so I need to run back to the room so Steve can take a shower. Thankfully this test shouldn't hurt at all.......she just needs to take some of her bottle.
Thanks in advance for the comments and prayers from everyone. I do not have time at the hospital to sit down and write everyone individually, but everything is appreciated.