Tuesday, October 02, 2007
I hate Mondays Current mood: crushed
Like I have said before, WHEN IS THE DEVIL GOING TO REALIZE THAT NO MATTER HOW MUCH HE TRIES, IT IS NOT GOING TO WORK??
I wish with all of the heart that I was able to say that everything was great here in California, but alas, I cannot. I stayed with Macy Jane until about 4 this morning and left to get some rest. When I left, she was perfectly content, sleeping and sucking on her pacifier. Well, Steve was frantically trying to call me this morning to tell me to get to the hospital ASAP, but I was in a deep sleep. He was able to contact my mom, who came in the room waking me up telling me that MJ was not doing well and I needed to get to the hospital. Needless to say, my heart was in my throat. I looked in the mirror and saw that my hair was standing up on my head all over and I must have a quick shower. I went to the hospital and all hell had broken loose.
Steve got there around 0730 and MJ was looking around and doing GREAT. She was not on ANY oxygen and her blood gases looked great. She was doing so well that she might have gone upstairs in a few days, if not tomorrow. Well, around 10am, MJ started gettig fussy. Steve changed her diaper, they checked her stomach for gas, but she was still not acting right. She almost immediately started breathing very hard, was becoming mottled looking and dropping her sats to the high 70s (she had been in the high 80s to 90s). They decided to do a breathing treatment, which did not help. The doctors came over and decided that she needed some bicarb because from her ABG she was acidotic. However, MJ DID NOT HAVE IV ACCESS. Remember a few days ago that the doctors said she would be okay without an iv? Yeah, now an emergency situation arose and they had no freaking way to give her the meds she needed. Finally, after 20 minutes, they were able to get an iv in her neck. Needless to say her condition deteriorated during this time because she did not get the meds that she needed at the time she needed. Finally after the IV, they had to reintubate her and try to get another arterial line on her because hers was not working since before all of this happened. Steve was PISSED. He asked for the charge nurse and told her that he wanted to see the medical director as soon as she could get in touch with him. She offered him coffee and tried to talk him down and out of it. Instead of doing what Steve asked, she got the cardiac doctor that is on this week. Steve said ya know treatment was delayed because she did not have an IV and we have been trying since Saturday to get you guys to put in a more permanent IV. The doctor said well she had a peripheral iv saturday night and Steve said RIGHT. And that IV stopped working YESTERDAY. She went 24 hours without an IV because ya'll didn't forsee anything happening to her where she would need it. Well, the unforseen happened and I want to talk to the medical director. Someone interupted them and the doctor had to leave. Needless to say, he still hasn't seen or heard from the Medical Director. I don't know if Steve will let it die down or not. That's up to him, but someone in charge here will get a letter once we leave to let them know how displeased we are with her care. Not all aspects of it are bad, but there are some key issues that are life threatening that need to be addressed.
Needless to say, MJ stumped the doctors. They had absolutely NO idea what was going on and what caused the problems. She had metabolic acidosis, which was confusing them because it showed that she did not have a problem with her lungs. She was breathing fine, fast--but ok. So, they decided that first and foremost she would be going to the cath lab to have a more permanent IV placed under general anesthesia and if the doctor had time, he would do a heart cath to see if that was the problem.
Well, we are feared the worst that her heart was failing or her pressures in the heart were too high, or worse that her new pulmonary arteries were closing off. Finally at 6:45pm, Dr. Perry came and told us the news. A normal person like you or I normally has a 1:1 ratio of blood flow in our bodies. Half the to the body, and half to the lungs. In MJs case, she had a ratio of 4:1. 4 times the amount of blood going to her lungs than her body. This turns out to be a good thing in the long run, but a bad thing at this very moment because it causes things like this to occur. Most babies that have had MJs surgery do not have adequate blood flow or limited blood flow to the lungs, but she has too much!!!!!! 4 times too much.
So where do we go from here? MJ is now the proud owner of a new Broviac Central Line with ports :) On Wednesday morning, they will have a cath conference with Dr. Hanley and update him on what is going on. He has 3 options. The first is to try to manage the blood flow with medications, which is hard to do and not usually his choice. 2nd: do surgery again and make the size of her shunt smaller so that less blood flow is going to the lungs or 3rd: go ahead and do the complete repair of MJs heart. Noone knows what he will decide to do. Naturally, we would all like for him to be able to go ahead and do the complete repair while we are out here, but we also want him to do what he feels is the best thing.
They hope to have her off of the ventilator tomorrow sometime, since her lungs really aren't the issue. We shall see. I totally do not expect this at all. Today I was upset and crying to God why was all of this happening? She was doing so well and then BAM! After the cath, I realized that maybe God was allowing this to happen so that we could go ahead and have the complete repair done while we were out here. Now, I do not know what will happen but I do know that the Lord's hand is in it, eventhough it is way hard to realize that at times.
Please continue to keep us in your prayers. It is getting harder and harder to face each new day and the challenges that it brings. It would be alittle easier I think if the people out here were not so rude and inconsiderate. I swear I just can't believe the way that people behave. Today, we were sitting by MJs bed waiting for her to get out from heart cath. Her nurses told us we could stay back there beacuse the doctor would come here to talk to us. Well, they transferred a kid to the room MJ is in and after the kid had been there 15 minute, the charge nurse came over with her mouth full of food and told me and my mom that we needed to leave so that they could admit the kid. I was SOO beyond pissed off. The kid was already admitted and settled in and NEVER once have they kicked us out when they bring a new baby to the room. They only ask people to leave during a crisis. Did they ask the 3 sets of parents to leave this morning when MJ was crashing and they were doing sterile procedures? HECK NO. They all sat in their chairs by their kids beds and watched the whole entire proceedings of what was going on with our child. And then they ask us to leave when they bring in a stable and screaming baby? I don't think so. We went to the area where steve was sitting and 2 girls were sitting there probably 10 and 16 years old. One girl was blowing bubbles really loudly every 15 seconds to where it sounded like a balloon popping. the other one was smaking her gum I swear about 200 times a minute. Steve thought at first that she was mentally retarded the way she was acting, but she wasn't---she was just being RUDE. The little girl kept slapping the couch and smacking the pages of her books. If she didn't leave or stop soon, I was about to politely turn to them and ask them to please stop smacking their gum and being so loud! I am to the point now where I am so tired of people being rude that I am about to point out their rudeness to them. I feel like I did my freshman year in college when I had the roomate from hell named Esther. We always argued and I was always on the defensive just waiting for her to lash in to me again so I could tell her off. I hate being like that and know that it is because my nerves are shot. I am trying to be nice, but I would appreciate some in return dang it! :o(
Well, I am going to walk around. It is really HOT in here and they are busy with MJ. Thanks for the prayers, maybe I will have better news tomorrow. I mean yes it was bad news that she was on the vent again and had to go to the cath lab, but in a way it is good because we now know that she has not only adequate blood flow to her lungs, but too much
Much Love
Bethany