I Must Get This Out Of My System

Dear ***** , (after reading this you will know if you are her)
I can't believe I am even wasting my time writing this but I feel I must get this off of my chest. This blog was created to keep my family and friends informed about our lives and our progress, it was never meant to be fodder for your everyday conversations since you are neither family or friend. The health of myself and my children has nothing to do with you and I have no idea why you feel that it does. If you had gotten the story straight from me or at least just gotten the straight story you would know that what you are saying is total crap. In the beginning it was Dr. Klein who sent Anna to the GI doctor, I did not beg to go. Nor do I think Dr. Klein refers patients for the hell of it, I think he usually has a fairly good reason. It was that GI who suggested there might be something wrong with Anna and suggested we should get to a neurologist. That first neurologist, who is well known in his field, did indeed say she has CP. I seriously doubt a well known neurologist would label a child with a condition because as you put it, "she [meaning me] wants there to be something wrong with that baby." Perhaps you should dig deeper into our medical records as you apparently already have and you would see this. It was again Dr. Klein who referred us to see endocrinology due to Anna's failure to gain weight. I am quite sure that once again he had a good reason, he did not just send us because he thinks it is fun for me to be driving all over creation. It was that Dr. who then sent us on to genetics. We then had to switch neurologists because the first one left his practice. That neurologist changed the diagnosis to static encephalopathy which is just another fancy word for CP but you are likely not wise enough to understand that static means not changing and encephalopathy means damage to the brain and you probably do not care enough to look it up. I did seek out another GI on my own because we were still having stomach problems with Anna. I am also quite sure that Early Intervention does not just sign kids up for the hell of it, there has to be a reason and I am pretty sure that "crazy mother" is not on the list of qualified diagnoses. I am glad when labs come back normal as most of Anna's have. However, if you had any knowledge of CP you would know labs and other tests do come back normal most of the time, it is simply a problem with muscle tone which will not show up on any lab and possibly not on any MRI either. I strive to get the best for my children and if having 10,000 labs drawn and seeing every doctor we are referred to is what it takes then that is what I will do to ensure that my children have the best chance at a normal life. Problems found early can often times be corrected and then the child can go on to lead a normal life. Isn't that what we all want for our children- to have the best chance at a normal life? I do not WANT something to be wrong with my child. I did not WANT to have the type of pregnancy that I did. I realize I am blessed to have my child at all. I am not really sure what it is about me that makes you feel the need to say things about me that are untrue or to use my personal life as petty gossip. Furthermore, I do not understand why you think it is ok for you to read our medical records just because you are an employee of Dr. Klein's office. Unless you are Dr. Klein, his nurse, or maybe the biller, you really have no reason to look at any of our records and quite frankly I do not see why you would want to. Are our lives that interesting or is yours really that boring and pathetic? I have always laughed at HIPPA but now I see it was created so that pathetic people like yourself would not be able to do what you love to do most- snoop into other people's business and then spread it around using some half-truths and mostly non-truths. You are not a friend to me nor have you ever been. You pretend to be friendly to my face and then no sooner do you turn around, you have nasty things to say. I have had enough. I would suggest you refrain from any further reading of our records or from other slanderous remarks because my patience with you is wearing thin. Perhaps the time you spend meddling in my life would be much better spent in therapy for yourself because it is apparent to me and all of those around you that you have got issues that need to be dealt with.

Hand Washing 101

Seriously, I am not a man basher but what makes it so hard sometimes for 2 brain cells to fire at the same time in a man's brain? Both of the kids were in their beds sleeping and Anna lost her pacifier and started crying. Kenneth, being the sweet daddy that he is, went and quickly and gently replaced it. He came back in the living room and suddenly there was a horrendous scream coming from Anna. Note to all men- while preparing beef jerky using crushed red pepper, wash hands before touching baby's pacifier. Needless to say Anna screamed for a bit and had snot and tears running down her face for quite awhile. Ever seen those episodes of Cops where the bad guys get the peeper spray in their face? I gave her cold formula hoping it would stop the burn and I guess eventually it did because she went back to sleep. Things have been pretty uneventful around here. I like it!! Carly jumped off a stool in the bathroom at school and fell flat on her chin and has a nice goose egg covering her entire chin. It looks like she took a purple marker to it- nice! I've got to get that on camera!! Luckily Miss Shawna was there to rescue her and provide the ice pack which runs a close second to band-aids with Carly. She is at that stage where blood or no blood- a band aid will cure all. EI came out today and has decreased their visits to once monthly since Anna is doing so well. She is letting go of stuff now and will likely be walking soon. If I have learned anything it is to NEVER EVER underestimate your children. They will do more than you ever dream of and they will do it whether you are paying attention or not so you had better pay attention. I have to work tomorrow but just cannot make myself go to bed. I know, this classifies me as an idiot and I will pay dearly tomorrow but I just can't force myself. Hmmm, work has been crazy. If people only knew the things I have to do at work they would cease to be my friends I am pretty sure. Sometimes it is just down right nasty. And the patients- they just keep getting crazier...HIV positive patients ripping out IVs and squirting blood at their nurses and patients refusing to give consent for an ambulance to transport them home until their demands are met (um, yeah, I think I was a hostage that day) and 500 lb gastric bypass patients who want us to take sensitivity training who never stop to consider how sensitive our backs feels after moving them around in bed and doctors who think it is normal to try and keep 95 year old demented people alive at any cost and an administration who thinks working short staffed is the ok and the list goes on. I must be a glutton for punishment because I keep showing up for more...

Funny Lookin'- Just Like Her Daddy

We took Anna to her GI appointment on Friday and all went quite well. We loved the doctor, Dr. Ogunmola. He was kind and quite knowledgeable and explained things very well. He really feels Anna's FTT (failure to thrive) & ongoing stomach issues are due to a severe milk and soy protein allergy. Although the protein in Alimentum is quite broken down he feels it is still not broken down enough so he has put her on Elecare. He says that in terms of protein sizes- regular formula is like a basketball, Alimentum is like a tennis ball, and Elecare is like a golf ball. We had to mix it 1/2 and 1/2 with the Alimentum for a few days to get her to drink it but now she takes it like a champ. She should- i just picked some up from the pharmacy a little bit ago and it was $47.09/can. We use about 1 can every 4 days. I looked on eBay and found some cheaper. I think I'll get it there next time and I am also appealing our insurance company to pay for it. I am not holding my breath but maybe they will help. Her stomach does already seem to be better so I guess it is worth whatever it costs. The weekend pretty much kept us in the house due to Ike. We didn't get any bad weather but a good amount of rain. I am thankful it was only rain and I am thankful because we really needed the rain. We cleaned house all day including ceiling fans, taking down mini blinds, baseboards, etc. It is sad that it took a hurricane for us to get the deep cleaning done. Then, we kept our niece and nephew and some of their friends that night. I don't know why they like to stay here with us so much but hey, whatever. Kenneth was on duty Sunday and the girls and I didn't do much. Monday was Anna's genetics appointment and it went quite well. I had no idea what to expect- it isn't like there are tons of people walking around who have visited the genetics clinic to prepare us for it. Anyway, Dr. Drummond-Borg was her name. She was a sweet little older lady with a cute British accent. She is amazed by Anna's height but feels that she is just a normal kid with CP. She does think Anna's head is small but she measured Kenneth's head and said it is on the small side as well and that is where she likely gets it. She mentioned a couple of syndromes but said they are mostly unlikely and that she really just thinks we have a little girl who looks like her daddy and is going to be very tall and very skinny. What a relief!! I have waited so long for someone to tell me my little girl will be okay and I finally heard it. She definitely agrees with the CP diagnosis but says she really feels her left arm will be all that is affected and that in time Anna will learn to overcome that as well. She finds it very curios that Anna's brain cyst is on the right side and her problems are on the left side since the right brain controls the left side. She really feels this is worth checking up on, and that as Anna grows and her brain gets bigger that we will likely be able to see the area of her brain that suffered the insult as a result of placental insufficiency. She said sometimes in tiny babies it is just hard to see but as they grow and the brain grows it becomes easier to visualize the damage. Her comment after that was something to the affect of, "You don't plan on having anymore children, do you?" That door just got slammed shut again. Oh well, I guess I should be thankful I have 2 beautiful girls, I know plenty of women who would give anything just for one child. God has a plan for us and I guess if he wants us to have more than 2 he will make it happen and if 2 is his plan then 2 it will be. I am working a lot this week but am fortunate today to get a day to myself. I took a 2 1/2 hour nap and am feeling so refreshed. I think it's about time to get dressed and go get a pedicure or something. Carly's newest thing goes something like this:

Me: "How was school today? Did you get a happy face or sad face on your stamp page?"

Carly: "I got a happy face. How bout' them apples?"

She really cracks me up. Last night I hear her yelling out from her room, "Maaaamaaaaa, maaaamaaaaaa." I am praying at this point she doesn't wake Anna up and I get up to see what is the matter. "Carly, what is wrong?" I asked her. "Mama, I'm weeeetttttt!!!!" I guess she had one of those dreams- you know the ones- and she peed the bed. I cleaned her up and put her in our bed. I DO NOT do laundry at 2 am. I think that is the first time she has done that in like 6 months, it was actually kind of funny...

Other than Dr. Miller (the first neuro who we will never get back
but who I miss sooo much) we met the best Dr. at Anna's GI appointment on
friday. His name is Dr. Ogunmolu. He was 1.) on time, 2.)so very
kind, 3.)Anna smiled and laughed at him, 4.)took us very seriously, 5.)has a
plan of action described in detail, and 5.)explained things so well that I
didn't even have any questions to ask. I highly reccomend him and I do
not
highly reccomend too many people. He truly believes Anna's
failure
to
thrive is all related tot he milk/soy protein
allergy.
He thinks
the
protein in the Alimentum is still
not
broken down enough
and has
switched her to
Elecare. He
explained that the protein
molecules in
regular formula are
like
a
basketball and in Alimentum are
like a softball
and in Elecare are
like
a
golfball. He
really
thinks with the Elecare
she
will
thrive. There
are only 2 problems
with the Elecare.
First, she doesn't care
too much for
the taste
but she is
adjusting.
It does
come
in Vanilla so if she won't
tolerate
the
unflavored we
will
switch. The second problem is that
it
is
$40 a
can.
She
generally takes about 2 cans/week.
Regualr
formula is
about $12/can
for those of you not familiar with
formula
prices. You
have to
order it from a pharmacy
and
it
only comes in a case of 6 cans
so
we must
spend
about
$240
everytime we order. If I see improvements
I
will
petition our
insurance to pay for it eventhough it is
listed
as
an
exclusion on our
policy.

I Hate You

Imagine this- new doctor tomorrow and I am nervous as hell and nauseated along with that. You probably wonder if these appointments make me so sick then why do I keep making more and going to more. Well, it's actually simple. I love my child more than anything in the world and I want the best for her and I am so afraid that something is going to be missed and I would never forgive myself if something was missed because I didn't take care of it as I should. I failed her once and I will not fail her again. Today was one of those days when I think about how much I would like to have just one more baby maybe, but I know it just isn't in the cards for me and it breaks my heart. I wanted that decision to be mine. I am so pissed that it was taken out of my hands. I hate preeclampsia. I hate that it robbed me of a normal pregnancy and I hate that it has likely robbed my baby of so much also. I hate that it has robbed me of the chance to try again. It has been awhile since I have broken down but tonight the tears just won't stop. I am so happy for people who can have healthy pregnancies, I really am. I wouldn't wish this on anybody but I am so jealous of what it must be like. I still wonder if I could have done things differently if it would have made any difference. If I had stopped my Effexor or not needed so much Zofran or slept more or corrected my anemia sooner or just anything, would it have mattered? I'll never know...

Not Exactly The Same Conversation

First off, people who send mixed signals get on my nerves. Enough about that. I did not manage to get a wink of sleep on Monday and Anna was up most of the night Monday night so needless to say I was draggin yesterday. Kenneth and I were actually off together though so we went out to lunch and then blew a few bucks at the casino. I'm glad I don't really enjoy the casino so much, it could be dangerous. Carly had ballet and tap and that went well also. Kathy, our OT, came yesterday to see Anna. It seems the message I got from Kenneth regarding the last appointment was not exactly how things went. Kenneth told me that Anna was "doing great and all caught up but they would keep her on service anyway because it would be easier to keep us on than have to sign us up again later if we needed them again." Denial, it must be a nice place. Kathy says she is very pleased with Anna's progress however she feels there are likely some cognitive delays. She also says that although Anna has done great at "catch-up" that her movements are still very precise and calculated, not fluid as they should be. She feels this is a motor planning issue. She brought some sheets for 9 month old skills and Anna is doing great for the most part but we are still lacking in a few areas. I am so sick of Dr. appointments as I think I had probably posted somewhere earlier. BUT... the OT suggested I really need to talk further to the neuro about Anna's cyst in her brain. So I called to make an appointment and as my luck would have it, Dr. Hernandez is no longer coming to the Denton clinic so we have to change neuros again. This time we will be seeing Dr. Marks but I am ok with it because he is the head of the "movement disorders" part of the neuro group which really fits our problem. Kathy also wanted us to see another GI so we have an appointment on this Friday at the Denton clinic. She is still concerned about the weight issue and truly believes nutrition is key to overcoming lots of Anna's problems. Anyway, enough about all of that. On a funnier note, I was taking Carly to school this morning and decided to go to Sonic and get a drink first since I had to head to work right after dropping her off. So we pull into Sonic and I get my drink and Carly tells me, "Mommy, one time when Daddy and I came here, 2 girls brought out our food. They thought daddy was cute. They asked him to come home with them." I chuckled and went on. I have given Kenneth hell about it and he says he will have to go find these girls who think he's a hottie. My free time is over, off to do more work it is...

New Kicks

At the request of Anna's occupational therapist, she got her first pair of real shoes. We are trying to avoid orthotic foot/ankle devices. I think she looks so cute and grown up. She is so proud of them.

The Wall Around Me

I had such grand plans to sleep in a little today but apparently the kids didn't get the memo. Carly was up bright and smiley at 6 and ready to watch Blue's Clues. Thanks Steve!! Anyway, her baby sister was up minutes later and I soon realized that the best laid plans are...just that- plans, they rarely work out. So we were up and going quite early and that made it oh so necessary to make a pit stop at McDonald's on the way to take Carly to school. Carly just doesn't understand why she can't have a Happy Meal breakfast. I finally convinced her that she wouldn't like a Star Wars toy anyway. So then I thought Anna and I would come home and cuddle up and take a little nap- yeah right. She has other plans for us. I worked 60 hours in the last week and I am so tired but alas, I will go on. I pray this afternoon holds at least a few minutes of shut eye. Kenneth is on duty so it's just me and the girls. Carly always says, "Mom, is it just girls day today?" So here I sit blogging and eating sweet tarts as if my butt isn't already big enough. The weekend flew by. I worked both days and neither day was much fun. We had a lot of patients die, some that were expected and some very unexpected. I have learned to put a wall between myself and most of my patients so that I care a lot but not so much that it hurts when something bad happens to them. This weekend I lost one of those patients who got to me and I never was able to build that wall around myself. She was such a sweet lady and had such a wonderful family. She had suffered for months and her family decided to take her off the vent and let her go. We disconnected her Saturday evening and when I went back Sunday morning she was still there. Her b/p was crap and she was barely breathing but because she had a pacemaker she just kept on going. Her family finally requested that the pacemaker be turned off as well. It was turned off and she did immediately thereafter- her heart did not beat one more time after that. It was somewhat of an ethical dilemma and in some ways I felt like we were playing God but I guess when it comes right down to it turning a pacemaker off is no different than turning a vent off and I am almost never opposed to shutting a vent off. I know eventually she would have become acidotic enough that the pacemaker would quit capturing and she would have died anyway but it just really seemed to her family, and to me, that she had suffered long enough. It's so funny sometimes how death brings people together. The patient had 2 sons who had not spoken much in years and now they are back together. I hope their momma is proud as she looks down on them. When I look back on my career there are a few cases that really stick out in my mind and although sometimes they make me sad I think they remind me why I do what I do. I digress. The girls are doing good. That picture is when I made brownies with Carly and Kenzie. Anna is so proud of herself- she is just crawling everywhere and just smiles as she goes as if to say, "I knew I could do it." Sooner Start will be here tomorrow and I am not sure what they will do with her. I have been at work during the past couple of sessions so it will be good to see Kathy again. We will still be going to see the geneticist next Monday at the request of the neurologist. I am a bit nervous but I know everything is going to be ok. There is just something unnerving about new doctors. About 3-4 days before each new specialist visit I get nauseous and sad and start not doing well. I have got to overcome that although i think we are about done with all this specialist stuff. I am going to have lunch with my mom in a bit so I guess I better go get myself into the shower, she'll appreciate that...

The Tail Is Wagging The Dog

First off, my brother in law is a surgeon in the Army currently serving in Afghanistan. I wanted to show off a few pictures of him- give these guys props- it looks pretty nasty over there!! Now, on to my issues: Daddy's girl, yep, that's what she is. Carly has got her daddy wrapped around her little finger. She is only 4, I fear this may only get worse. We have been having issues with her not wanting to go to school on the days that i work and Kenneth is supposed to take her to school. She gets out of bed, asks to stay home, he says no, she throws a fit, he gives in, she stays home and gets what she wants. He can't seem to understand why she doesn't throw these fits for me, only for him. I keep explaining that it is because it works for her and she gets her way. So he has agreed to not give in anymore- whatever. I was at work today and called about 12:00 to check in on everybody and I hear Kenneth say "Carly..." and realize she is not at school- again. (When I say school I am talking pre-K here so it's not like a truancy issue or anything) I ask him why she is at home and he says she threw a huge fit and he tried everything to get her under control and to get her dressed for school and she just wouldn't cooperate. He finally gave in and told her she could stay home but she couldn't watch t.v., couldn't play with her toys, and couldn't play with Mackenzie. Great punishment Dad!! She still got to stay home which is exactly what she wanted. So- the tail continues to wag the dog and I am afraid his will not change anytime soon. She is such a good kid bu she plays her daddy like a fiddle!! Anna is doing great. She started saying "mama" and I couldn't be more proud. She is sleeping better and we are so happy about that. Work has been crazy busy. Today we had a lady code because her lung is hemorrhaging so her trach got a blood clot in it and it occluded her airway. We took her off the vent and tried to bag her but no luck. As we started to do chest compressions the clot flew out of her trach and landed at the foot of her bed. I have never seen such a huge group of people part like the Red Sea before- that clot had some velocity!! Lucky for her (or maybe not so lucky for her)she lived. I think her family has made her a DNR now. JCAHO is at our hospital doing their survey this week so all of the suits are walking around with their heads up their butts. I am pretty sure we will invest in glass belly buttons for them, then maybe they will at least be able to see out. I am so glad to be off tomorrow and then I work Saturday and Sunday. Saturday is an extra shift I picked up and I told them I couldn't be there until 8:30 so at least I'll get a little sleep. I love these extra shifts where I call the shots and tell them when I'll come in. Well, not much else going on here. Things are pretty boring and I couldn't be happier. I am meeting Joanne at Deiter's for lunch tomorrow for BBQ and beer, mmmmm, can't wait....

Freak Week

It never ceases to amaze me the kind of freaks that come out of the woodwork sometimes. This past week at work was full of freaks- not so much patients but family members. I can't even begin to describe these people but they are the ones you generally see on Jerry Springer- and they were all hanging out in the ICU at Presby Denton this week. Some of the patients were real winners too. I knew today would probably not be too great when one of my patients was dead by 7 AM. So I got another and one of them turned out to have lice but didn't really feel it was prudent to share that information with me. What the hell? How do you have lice and a.) not know it and/or b.) not tell the people taking care of you. And yes, these are the people working at your local fast food restaurants. Needless to say I all but screamed as I saw this louse crawl up the patient's arm and I immediately got clean scrubs from OR and came straight home from work to take a decontamination shower. As if this wasn't bad enough we had a guy in DTs who decided that after we got him off of the bedside commode he would fall face first into the bed with has butt shining up in the air for all to see and then he would pass gas and shart all over himself. Seriously- did I go to school for this? Then he proceeds to tell us, "Man, I don't know how much they pay you but it is not enough." I'm thinking if you are cognizant enough to worry about my pay shouldn't you be somewhat able to control your bowels or at least excuse yourself after you crap all over your nurses? Nope, he proceeds to gripe at us because we didn't get him back into bed the way he wanted. He is by far one of the finer male specimens in this society. If people want to kill themselves I can handle it but I am so sick of getting people through their withdrawal so they can go out and do it over again and again and again. For some dumb reason I picked up extra shifts this week. I suppose I am a glutton for punishment. Wanna join me?