What I Really Meant Was...

I really try my hardest to be a nice person. I try to be sympathetic and empathetic and understanding of what people are going through. I try to be pleasant even when I don't really feel like it. Today at work was more trying than most days. A man came into the ER in the middle of the night having a huge heart attack (MI). He was taken to the cath lab, stented, and placed on a balloon pump. He was placed in ICU where I have had the pleasure of his company in a 12X12 cell (or patient room) with him all.day.long. When I say all day long I really mean it, I mean 12 solid hours. I have tried to be nice, I really have. I have said nicely, at least 100 times, that he must keep his leg straight to avoid puncturing his femoral artery and bleeding to death. I have said nicely that he must keep his oxygen on because his heart really needs the extra oxygen. I have said nicely that unless his chest pain comes back he will not have surgery until tomorrow because his heart needs to rest. I have said nicely that I understand how much it sucks to be flat on your back but I have given you all of the morphine, darvocet, xanax, and valium you can have. I have said nicely that we are trying to save his life and that it isn't our goal to make him miserable. But he is an ass. A big one. So what I really meant when I said all of those things so nicely was...Hey moron, nobody made you smoke 2 packs a day. Nobody made you not go to the doctor for 20 years. You are 70 years old with a strong family history of cardiac disease, maybe you should have had yourself checked out. Keep your freaking leg straight, I do not want to clean a whole body's worth of blood up off of the floor and then explain to your wife (who is downstairs smoking) what happened to you. Quit asking me if something is tangled around your foot. It is a restraint...because you won't keep your leg straight. And your family...I think I saw them on www.peopleofwalmart.com. They have caused me to rethink my decision to go to nursing school and work in the ICU because they clearly have much more knowledge than I do. That is why they asked me 800 times if you could sit up in bed after I told them 900 times why you couldn't. Dear sir, nobody asked you to come here for treatment. If you do not like our solutions to the problems you have created then please, go home, but quit taking your anger out on me.

I am not always this way, I promise. I am just really tired of people causing themselves harm and then being rude to me for trying to fix them. If you don't want treatment, by all means, stay home. We have plenty of people here who want to get better!!

Can We Please Keep Her

I suffered two near miss heart attacks by 8:15 this morning but luckily I survived them both. The first came when I got Carly to school and then she reminded me it was picture day. They make you order the pictures the day they are taking them (so you are guaranteed to buy them even if they suck) and I didn't have the order form or money with me and I had mistakenly let Carly pick her own clothes out. So I threw the kids back in the car and drove like a bat out of hell back to the house and changed Carly's clothes and slapped a bow in her hair and off we went back to school. We made it just in time for the last bell to ring. Heart attack #1 over. I know in the grand scheme of things school pictures are no big deal, but it is Kindergarten and I did not want to screw it up, believe me, she would never let me forget it. So I got back in the car and was headed home when I noticed Kenneth had called quite a few times in a span of about a minute. I called him back and he informed me that I need to go log on to our checking account on the computer because there was no money in it. WHAT??!!?? We both got paid last week and will not get paid again for 2 weeks and we are already our of money??!!?? Luckily I logged on to find the money still there. Kenneth apparently is not so great with the ATM in the dark on his way to work. Thank God, crisis #2 averted. Monday are kind of hellish around here even without the morning drama. Carly gets home from school at 3:30. She has just enough time to change into her ballet clothes and we fly to ballet which is from 4:15-5:15 (keep in mind we live about 20 minutes from the dance studio). Another quick change and we are off to soccer from 5:30-6:30. I did not plan for things to be this hectic but they are and we are getting used to it. Carly really enjoys both activities so we will keep it up as long as we can. The kids eat dinner in the car on the way home (something healthy like uh, pizza, or Wendy's or McDonald's) and then as soon as we get home it is shower, homework, snack, books, then bed. After the shower tonight Anna proceeded to pick up the baby gate and throw it at the cat and hit her with it. She may be tiny but do not underestimate, that kid has got an arm! I spanked Anna and she of course just looked at me like "Do it again, I dare you..." and then Carly started crying. I asked why she was crying and she said,"Are we going to get rid of Anna?" I tried to stop laughing long enough to ask why and she said, "Mom, I know she is being mean but I love her. Can we please keep her?" I told her that I guessed since she had asked nicely that we could indeed keep Anna. Aside from her mean streak Anna is doing a little better. Her pH probe showed nothing but her biopsies showed reflux esophagitis. Dr. O restarted her Prevacid. She is starting to eat a little more and has put on a bit of weight. She has actually slept better the past few nights also. I hope things continue to get better. We will go back for a GI check up at the end of October and see where we stand. I am praying for at least 23 lbs...

Well Written

The best post I've read in awhile...

http://babyonbored.blogspot.com/2009/05/acceptance.html

About That Whole Feeding Clinic Thing

I am trying desperately to not be a non complaint parent or the reason for any of my daughter's problems or the reason she doesn't get better but here is where I draw the line. I got a call tonight from one of the therapists at the feeding clinic at Our Children's House at Baylor where Dr. O had referred us. The therapist was asking me questions about Anna's eating and weight and failure to thrive and so on. I really did my best to downplay things because Kenneth nor I either one are any too excited about it. So the girl tells me they are booked until December but that she feels Anna cannot wait that long and that she wants to see her within the next couple of weeks for an evaluation. She says she will mail me the paperwork today and when I get it to get it filled out and faxed back ASAP and that as soon as they have a cancellation they will get her in. I am ok with that. Then she asks how far it is. I said we are 45 minutes from Denton and then however much further it is to Grapevine and she says, "Oh, we aren't in Grapevine, we are in Dallas." Yeah, downtown Dallas. Then she informs me that she feels Anna will need intensive therapy which consists of a 4 week inpatient program. Uh, nope, here is where we draw the line. I will not tear this family apart for a month for any therapy. It has taken us almost 2 years to rebuild what was broken with Carly from the previous hospitalization and I will not do it again, not when I have a choice. I fail to see how taking a kid out of her normal environment will help her learn to eat. Then there is the cost- 10% of a 4 week inpatient stay is too much. If these are our choices I'll take the G tube. Call me non complaint but this is crazy...

All Is Well

Everything went well today. We had to be at Cook's at 8 am. We left he house at 6 am and got stuck in traffic and luckily made it there right at 8. As usual, the staff was fabulous and got us right back to endoscopy. They prepped her with a nasal inhalation of versed and fentanyl and it took her awhile but she got drowsy and off she went. She was gone for about 45 minutes. They used general anesthesia and said she did well. We went back to see her in recovery and for the first time EVER, she didn't want to wake up. She would cry a little and then go right back to sleep. They said if we were comfortable we could go ahead and leave and so we did. If you ever feel you need attention (and we don't) just take a wire to your kids nose and go into Chick-Fil-A. She was the topic of all conversation. Anyway, Dr O said her EGD looked fine. He said the visual picture is worth about 50-60% of the equation and the biopsies and probe are the other part. So the probe is in and Anna is actually tolerating it rather well. We had it around her neck but it looked highly uncomfortable so we put it in a back pack and strapped it to her. It has buttons you push if she is siting up or lying down, eating or not, and if she is showing any symptoms of a problem. She can only eat and drink for 30 minutes every 4 hrs. During the other 3 1/2 hrs she cannot have anything by mouth. They had elbow immobilizers on her but we took them off. We may need them tonight as people tend to pull out tubes during sleep unintentionally. We will pull the probe out in the morning and return it (or be charged another $10,000). We should have all of the results by Tuesday or Wednesday of next week. Thank you so much for your prayers and well wishes! As always, you are awesome. The Periactin was working great until yesterday when Anna totally wigged out. If you don't believe me, ask my friend Joanne who witnessed the beginning of the meltdown. It started with her biting me, then beating her head into the wall and laughing hysterically about it, then hitting me, then hitting the speech therapist, then hitting her sister in the head with the computer mouse, then her biting herself, and well, you get the picture. It started when I gave the medicine and ended when the dose wore off so I am certain that was it. Not that she hasn't been a brat before- but not like that, it was awful. Anyway, if she does not have reflux we will try to continue the Periactin but give it every other day and see if she tolerates that. Then we will start the feeding clinic/therapy. I hope they can help but am unsure if we can absorb the cost and the miles. We shall see...

Steps 1-4 But Not In Any Particular Order

Anna's GI appointment was today and I guess it went OK. I don't really know what I was expecting to happen and I left in tears and angry at the doctor for not being able to fix things right then. That was an unreasonable expectation, I know, but I just want this to be over. My therapist tells me that there is usually some feeling behind anger, that it does not usually occur by itself. My hidden (or so I chose to think it is hidden) emotion is exhaustion. We had those few brief weeks that Anna slept but she is back to getting up every 2-3 hours again and I am growing weary. Enough about me- back to the appointment. By their scale she was down about what I thought she was. Dr O. (Ogunmola- but I refuse to type that over and over) said that there is a 4 step process to "fix" this problem. I think my frustration stems from the fact that the process can be long and my patience is wearing thin. Step 1 is to get the EGD and pH probe done. He moved it up to the 10th so we will be doing that next week. After the EGD they will put the pH probe down her nose into her stomach and leave it for 24 hours. It will come out of her nose and run behind her ear to some little box that will make the recordings of the acidity. It should be great fun to keep her from pulling it out. Then we go back the next morning to have it removed. If there is indeed reflux which I am sure there is then she will be restarted on Prevacid. Step 2 is to start an appetite stimulant. He says he usually waits until after the EGD to start it but went ahead and started it today and is taking the "plan" out of order given Anna's worsening failure to thrive. She will be getting Periactin 2X a day to try to get her to eat. He said it might make her sleepy. I got a good chuckle and said that since in takes 50mg of Trazadone to get her to sleep and she still wakes every 2-3 hours that I doubt the side effect will affect Anna. Step 3 is to start Anna at a feeding clinic/feeding therapy program at Our Children's House of Baylor in Grapevine. The crappy part about it is that it takes 2-3 months to get in and it is about 90 miles one way from our house. I hope the insurance will pay their part but it will still leave us with a lot out of pocket that we don't really have to spend. Step 4 is to insert a Gtube if things do not improve. We discussed going ahead and placing an NG tube and starting feeds that way but he is afraid she will shut down completely and quit taking anything by mouth. We also are switching her milk, AGAIN. We are supposed to use Bright Beginnings Soy but I cannot find it here so I think we are going to stick with Soy Silk and add regular soy formula until we get the calorie content to 30 calories/ounce. That was the point of the Bright Beginnings was to up the calories/ounce so I'll just improvise, I am getting good at that. Thank you so much to all of you who called to check on us today. You never cease to amaze me. On a happy note, Carly finished her first week of Kindergarten his week and she handled it amazingly well. She is not a fan of getting up early but otherwise did great. She is glad I pack her lunch because, "Mom, in the cafeteria they make you eat off of A TRAY!!" Perhaps she is a bit spoiled, eh? She has also started back to ballet and is playing soccer also. She is doing great at both and I am so proud of her. She really sacrifices a lot for Anna and rarely complains about it. God knew what he was doing when he made the two of them sisters. Here she is playing goalie...