The "Legacy" Continues...

About a week ago I received some good news to balance out the bad news we had received the week before. The good news- my calcitonin levels haven't risen in the last eight months! I was so very relieved to hear this as I'm sure other Meddies can understand.

The odd thing was that I was on the verge of having a panic attack waiting to hear these newest results which is so very unlike me. I have NEVER had anxiety about my results before even if I knew they would be bad! Come to find out, my TSH levels were high and my Endo said that can cause anxiety. That might also explain why I've been having such gory nightmares lately too! Lol

Bad news was that my oldest child (21 year old son) got the results of his 24 hour urine test and we are finally at a point where he needs to have surgery for the Pheochromocytomas that are forming. It breaks my heart that my children have to go through this too but thankfully he has a mama who has educated herself on this who will help him through.

My son has decided to have Dr. Jeff Moley in St Louis do his laparoscopic Pheos surgery. This is the man I wish I had asked to do mine and I know in my heart that he will make sure my son doesn't end up messed up like me.

Big B will have the surgery after the New Year when him, his fiancé, and I will drive to St. Louis. I'm honored that at 21 he still wants me to be a part of this.

In other news- my Endo had me quit my 2 liter a day habit of drinking soda which cut out all caffeine and most sugar for me (yes, I've been a real bitch this week!), my Fibromyalgia is behaving itself, my Peripheral Neuropathy is getting worse all the time, and I think my Costochondritis is actually Tietzes Syndrome due to where my pain is located. The other 2 million diagnosis' I have really don't bother me much so they're not worth reporting.

Ahhhhhhh the life of a messed up MEN2a Meddie....gotta love it! Lol

I have spent

the entire day feeling like such a moron for not going into the ER last night. So much could have gone wrong and I KNOW that but stupidly talked myself out of going. The only reason Vin even went to work last night was because I guess I talked him into it (I don't remember any of that though). He has informed me that from now on we do what HE decides with medical situations. I told him I agree and that is the plan from here on out. I have reached the point of being too incompetant to even handle my own care.

I told the endocrinologist about my symptoms and she said it sounds like maybe I had another TIA and a severe reaction to the antibiotic that my regular doctor put me on. She said she didn't see a reason to order a CT scan. She is stumped though as to why I'm still having mini-strokes because we thought that lymph node we removed would stop that but obviously it hasn't. So now we're back to square one with that.

Personally I don't agree as far as the reaction goes but I'm so tired of going through doctors because it feels like they either don't know or don't care. Vin isn't happy with the diagnosis either but he's at a loss as well because it's all just so overwelming with all of my health problems. I feel so bad for him because he has to take care of his 33 year old wife. So not fair.

So what happened yesterday very well could be a in part a severe reaction to the Avelox that I was taking I suppose. To be honest, I'm still really out of it and don't remember much about yesterday. Today things are still foggy, I can't concentrate, and I feel like I'm going to black out but I'm suppose to quit taking the Avelox and if symptoms continue then contact my endo again and she will decide what to do. *sigh*

I really don't know what to do at this point. I have a number of the severe reaction effects from the Avelox AND I have all the signs of a stroke as well. My top lip is also swollen and has been all day. No clue why. I don't know what to do from here. My endo didn't even really seem like she wanted to hear about it you know? Even Vin was upset about that.

I'm sorry to scare all of you and I'm sorry I can't give a straight answer to you right now. It may be a severe reaction to a med or it may have been a stroke. I don't know but unless I can convince a doctor to have a CT Scan done all I can do is sit and wait for the next one. I am really out of it and just can't think clearly. I made Vin go to bed because he needs to work tonight and needs some sleep. He doesn't need to be sitting up worrying about me.

I think I'm going to clean out some email, tell the kids what to fix for dinner, get something to drink (I'm also dehydrated the doctor said), and just lay here feeling all funky. lol. Fuck I can't focus! I hate this so damn much.

Now You See It, Now You Don't

What is it about me that makes tumors or "possible" tumors in my body want to play hide ~n~ seek with imaging equipment? Yesterday I got the results of my 6 month follow-up ultrasound on the lump in my right breast and now I don't know whether to feel relieved or like it's just same shit different spot. *sigh*

The results this time are that they couldn't find the lump anymore. So either it is gone (which would be fabulous news) or just hiding and will show up again in 6 months making this start all over again. If you remember the trouble I've had off and on through the years with a "now you see it now you don't" possible tumor, then you'll know why this is so frustrating for me. For right now though I am taking it as a good sign and enjoying the news. Now I can move on to bigger things in life right?

The infection in my neck has also returned after being given the okay by the surgeon. This lady pisses me off to no end. I told her nurse that the infection is back but I refuse to see that surgeon EVER again! I told her I would rather go sit in the E.R. for eight hours and have another surgeon lance it instead. The nurse asked again if I was okay and I told her that I want released from Dr. T's care...period! Thankfully the infection is nothing like it was last month and I actually have a normal sized neck.

At this point I will be having my endocrinologist refer me to Dr. Moley in St. Louis because I don't trust anyone around here. Let him look at my scans and my neck and decide how to treat me. I'm tired of being afraid of what is going to get screwed up next by some half-assed quack. I've heard alot of good things about Dr. Moley and I think I would finally feel like I was getting the care I need.

Big B will see his endo next week and we'll get the new results from his 24hr urine test. I'd love to hope that everything will be normal but the realist in me just hopes things haven't changed at this point. I don't want him having to join me in adrenal sufficiency ever if possible.

As always, things here are never boring.

Since my last post Monkeyboy got a bug bite on his bottom lip and we have had a wonderful run in with MRSA, the results came back on Big B's 24hr urine showing that adrenal tumors are most likely beginning, and just all kinds of fun. haha

This was our first time dealing with MRSA so it was a little scary especially since no one bothered to tell us (doctor and then urgent care who had taken a culture) what the infection was until it was pretty much too late for the rest of us. Considering that I don't like the idea of ANY of my kids being sick plus I have a weakened immune system.... well that didn't sit too well with me AT ALL. Saying I was beyond pissed would be an understatement. Thankfully though no one else got the infection and Monkeyboy is doing much much better. To be honest, I didn't know a whole lot about staph infections before this month but boy do I now! Nasty stuff and I recommend everyone to read up on it because you just never know when it could show up.

As for Big B, we had elevated levels in his test results and had to see another endocrinologist (because his ped endo felt he was old enough to go to an adult endo) to decide what to do next. I felt really comfortable with this endo considering that he is MY endo's husband! After going over the results and talking to Mr Dr Endo the plan is to test Big B every three months to see how the results flucuate/rise. If it looks like things are going slowly then we will wait it out for a bit (because pheochromocytomas usually grow fairly slowly) but if it looks like tumors are forming quickly then the search for a topnotch adrenal surgeon will begin. There is no way in hell I'm letting any of my kids end up all messed up like I am. I love them too much.

So please keep my kiddo in your thoughts for awhile. I'd really rather things not come to him needing surgery. I think they've dealt with enough of this MEN2a bullshit already.

I am happy to report that I did not almost die this month. Amazing I know!! *smiling* Actually, now that I know what to do I see adrenal crisis being a very rare thing for me and I'm very happy about that. Now all I just need to make it through the upcoming appointment with the thyroid/breast surgeon on March 31st and things will be all good. To be honest, I'm scared about that one but really really hoping the lump in my breast is nothing and we can go back to life as usual.

Life And Almost Death

I figured that title covered both things I am posting about today. LOL. First, the story about what a shitty month February was...

As I said in my last post before I "disappeared", I felt like hell so on February 6th I went to see my PCP and find out what was going on with me. On the way to his office I started getting extremely horrid nausea and feeling like I was going to black out. Once we got to the office I informed them of what was happening and they still had me sit in the waiting room for 45 minutes. Finally I asked the nurse if I could please go to a room before I passed out.

Once in the room my doctor came in fairly quickly. He diagnosed me with a sinus infection and bronchitis. When I asked him about the feeling like I'm going to blackout and nausea he just said it was probably from the sinus infection. Ummmm okay. Personally I was worried about it being the start of an adrenal crisis. Anyway- got meds for the infection and bronchitis, went home, and proceeded to go downhill from there.

By February 9th I was sicker than I have honestly been in my entire life. It was the worst nausea I could ever imagine and it was a real fight to stay conscious. Finally I told Hubby that I needed to go to the ER because I believed I was in adrenal crisis. Before leaving, I decided to use my injection kit in hopes that it would help ease the nausea some (this part is important later).

So we went to the ER, spent over two hours in the waiting room even though they were told it's a medical emergency, and once we went back were there for another six hours. *sigh* I ended up taking through an IV- two different nausea meds, two doses of steroids, and three bags of IV fluids because I was so horribly dehydrated. Once that was in me I felt MUCH better and continued to get better once we were home.

I honestly thought the whole thing was no big deal but when I told my endocrinologist about it on February 22nd (that was the first appointment I could get as she's been out of state for a family emergency), she informed me that had I not given myself an injection before leaving I would have died on the way to the ER. That scared the hell out of me!! She then proceeded to explain adrenal crisis in depth to me which is something that wasn't done before and told me exactly what to do when I get sick again. I also found out that doubling my steroid dose when sick was pretty much worthless because I take 5mg a day of Cortef so the most I took while sick was 20mg. Ummmm, I guess when you get sick the LEAST you should take is 40mg in the morning and 20mg in the afternoon. Whoops.

My endocrinologist is sending me to a thyroid/breast surgeon on March 31st because she says that even though the biopsy results on the lymph node in my neck came back benign, it wouldn't have shown up on the Octreotide scan if there weren't cancerous cells in there so she wants it taken out. If this surgeon can do it then we'll have it done here in New Mexico but if she isn't comfortable then I'll be sent to St. Louis for surgery.

My endo wanted me to see this surgeon also because she is a thyroid AND breast surgeon which leads to my second bit of news. My doctor is worried about the lump in my right breast and her opinion is that it needs to be removed and then biopsied because as far as she's concerned it's gotta go whether its benign or malignant. Of course, we will go by whatever the surgeon feels is best in this case and personally I don't care what they do with it as long as I hear the word "benign".

I seriously think learning I have breast cancer would be the breaking point for me. I can take alot of shit but being told yet again that I have another form of cancer would be too much.

For now though I'm just enjoying life whenever I can. I let Big B get his ear pierced for the first time two weeks ago and last week I let Sis get two new holes (three total) in her right ear. I think at this point Hubby is worried that I'm going to bring the 5 year old home with a piercing. Haha

2007 Is Ending With A Bang!

I know it has been awhile since I've posted to any of my blogs and I'm sorry. I know it lost me alot of readers but that just can't be helped right now. Before Christmas I received the results of my recent CT scans and ultrasound. As I said before, the purpose of the scans was because an Octreotide scan I had showed uptake in my neck along with questionable spots in my heart and right pectoral wall. We wanted to be safe rather than sorry so I had the other scans on December 19th. Well the results were not what we were expecting to say the least.

Good news: Results for the heart- They feel that it is nothing more than a heart murmur at worst but I will still have a few more tests to make sure. So heart is okay.

Lump in pectoral wall- They feel that it is probably just an infected lymph node but not sure if it is a bacterial infection or the medullary cancer. Either way it's one lymph node in that spot and not worth worrying about at this point.

Okay news: I have a total of eight cancer infested lymph nodes in my neck. There are three on the left side under my jaw, one on the right side under my jaw, three on the right side of my neck, and then the one on my left side that we already knew about. The plan at this point is to remove the one on the left side no matter what and then if biopsies confirm medullary cancer in that one I will be sent to either Dr. Jeff Moley in St Louis or to MD Anderson in Houston to have them pick through my neck and remove every single lymph node etc that they can find. Dr Moley is highly recommended and will not miss anything. He is my best chance for keeping it out of my neck at least for awhile.

Now for the bad news: We now know why I've had this cough for so long. They found six nodules in my lungs at basically three in each lung. They are all around the size of pencil erasers right now. They also found cancer infested lymph nodes in both armpits and one in my right breast (not behind it like the other thing but in). What does this mean? Well it means that the medullary cancer has definately spread past my neck and isn't curable but that isn't as horrible as it sounds. I already knew all that so its okay.

We can't do anything about the lungs right now because the nodules at the size they are now aren't worth going in after. They might take years before they are actually big enough to bother operating on and even then they have trials going on right now that are showing alot of promise in maintaining and shrinking medullary tumors. So that means that the cough is here to stay.

I have been exceedingly tired and had been sleeping almost ten hours a night which is something I haven't done since I was little. When I went to my Family Doctor and told him he said it must be depression. To be honest, I was extremely pissed off! I knew it wasn't depression and I was feeling just fine! After having bloodwork done we now know that my thyroid levels (TSH) were at 19 which is definitely off. That explains the extreme tiredness and is easily fixed by upping my Synthroid.

No clue still why I can't eat without getting sick but I found something that I'm going to ask my PCP about. It might just be a simple matter of I got food poisoning once, the bacteria stayed, and now I have chronic gairdisis is all. So if that's it then I will be eating again soon.

So that is the update. I have an appointment with an ENT doctor on January 8th My endo would have liked it to be sooner but that was the best they could do which I understand. The ENT doc will check my neck, maybe do another scan, and then decide how we go about removing the left lymph node that is pressing on my carotid artery. That should take care of a few problems with it gone. Hopefully one of them is the mini-strokes. I'd like that alot!

I will have whatever other bloodwork and scans need done within the next two weeks and probably surgery by the middle of January at latest. Then when we get the biopsy back its results will decide if I'm taking a little vacation or not. If not then we just wait for the cancer to get bigger in my neck and then do surgery. I know it sounds stupid but since we can't do radiation or chemo and we already know the cancer has spread, it really doesn't make sense to cut me open constantly for the little stuff.

So don't worry. I throw up alot, I'm getting over being so tired, I cough alot, and I've got a bitch of a cavity but Christmas was nice this year and I enjoyed it. I got the one thing I wanted most- not one single argument the whole day! It was awesome! I'm content and I'm enjoying my family.

No Hump No Hump Just Ugly Little Lumps

They are soooooooo not lovely either!! Well I got my Octreotide Scans results back today and it wasn't what I was expecting.

The cancer is definately back on the left side of my neck and coming back in the right side also known as there was definate uptake on the left and mild on the right. I expected that though and knew someday it would come back. I really didn't expect it this soon though so that kinda sucks. *sigh*

The part I didn't expect is that there is a questionable spot on the scan behind my right breast and also two more in my heart. Yeah, a little scary. I figured I would go in and hear that NOTHING lit up and just go on with what to do with this lymph node that is pushing on my artery. So much for thinking right? It's not time to worry yet because the spots in my chest and heart very well might be nothing. That's what getting more scans is going to find out.

So I have to have three scans done- a CT Scan of my neck and chest (with and without contrast), an Ultrasound of my chest, and an Ultrasound guided biopsy of that lymph node in my neck. The first two will tell us if there is any reason to worry about the heart or chest and the last one is just so a surgeon will agree to operate on me. My endocrinologist said the scans should be scheduled pretty quickly so I will keep you updated.

I've also been quite sick this month for some reason. The fibromyalgia is with me everyday now, I'm getting horrid migraines, nausea and/or vomiting everytime I eat, no energy, and just an all over feeling like I'm burning with fever yet on a thermometer I never go above 100 degrees. No blue what is going on at this point. That mystery cough is still with me too. I've had it for over a year now but nobody seems to think it's important.

So much for thinking I got to relax and kick back this month. Hey, if I can't laugh at it then it wins and I'm a sore loser. ;)

Long Time No Post

I have so much to post about I just don't have the energy to do it. I'm sorry.

Let's see what is new since last time...

-I've had several ministrokes.
-I've had memory loss and problems "finding" my words since the ministrokes and a possible mild stroke.
-I won my Social Security Disability hearing which is bittersweet.
- I have a swollen/inflamed/enlarged lymph node on the right side of my neck that is either pressing on our wrapped around my carotid artery.
- I now have the joy of giving myself B12 shots weekly for one month and then monthly after that.
-I can't eat without getting sick now.

Since the middle of July I have been having these "episodes" where I get sudden jerking, then numbness and tingling down the left side of my body. It usually wasn't a big deal and I honestly just mostly ignored it. That is until I had a bad one at the end of August that sent me to the ER. I had just layed down because I was feeling very tired when right after closing my eyes my left arm jerked quite violently. Immediately after I started feeling this creeping tingling and numbness spread from my face all the way down to my foot. Needless to say it scared the hell out of me.

By the time we drove the 45 minutes to the ER the episode was pretty much over and even though all my symptoms matched a TIA and even though all the doctors and nurses said TIA AND even though I was having problems pulling up words to finish my sentences... they sent me home. Needless to say that made the stubborn side of me win out and I didn't go back for the following two I had after that. I should have I know. I just didn't.

As I said, I have been having problems "finding" my words and finishing my sentences ever since that attack in August. It of course got worse with each following attack and almost two weeks ago I had a period of time where all I could do was sit and stare without even blinking, then numbness, and then I had trouble talking for the rest of the day. Yes, I told my doctor about it. No, he didn't do anything. Yes, I am hiring a neurologist.

Bottom line? I'm going to fucking die before anyone does anything. Seriously.

Some people know that my doctors advised me to apply for Social Security Disability back when it was clear I had nerve damage to my neck and shoulder after the second surgery plus other things starting to go wrong. I applied back in June 2005 and by October 2005 they had denied me. I appealed that one only to be denied again in April 2006. I of course appealed that one and hired a lawyer. Social Security was not basing their denials on my medical evidence or even by anything a doctor who was even remotely familiar with my medical problems. They just denied me pretty much so I would give up and go away.

My last hearing was on September 12, 2007 and let's just say that the judge didn't ask the vocational specialist any questions and it only took me two weeks for her to rule in my favor. That is bittersweet because while I'm glad the battle is over and I can finally help out my family, I'm only 32 years old and being considered disabled wasn't one of the things I had on my To Do List. I'd rather be healthy and be able to chase my youngest child around. I'd rather be training for a marathon and proving to myself I can run that far. I would rather be doing anything other than sitting here waiting to collect a small little check each month that won't even pay my mortgage. Something is better than nothing and I AM very thankful, I just wish I had worked better jobs when I was healthy so I had something decent to draw on now.

So we are just waiting for the Notice of Award that tells me what I will get each month and how much I will get in back benefits for the last two years. Any money that comes from back benefits though is already spent as we need a new water heater, dental work for Lil Man and I, credit cards to pay off, and bills to pay. Sounds like tons of fun doesn't it? Woohoo look at us live it up! ;)

At my last endocrinologist appointment, I told her about a lymph node that has been quite large and painful on the right side of my neck for awhile now. It doesn't get any smaller and it never goes away so it had me worried about it being new cancer. Once she palpitated it she was able to tell me that it's actually either pressing on or wrapped around my carotid artery. She couldn't tell me though whether or not she thought it was cancerous. To find out (and because it's that time again) I have to take a two day Octreotide Scan like I did back in 2005. Wherever I light up like a Christmas Tree that is where the medullary cancer is. Maybe it will even show me if I have a new adrenal tumor forming.

As soon as we get the results back on that then I will have surgery to remove the lymph node. The only scary parts of this surgery are that it's so close to the carotid artery and I don't want to be flayed open like a fish again. This might also explain the ministrokes also knowns as TIA's (transient ischematic attacks).

The last three times I've had my B12 checked it has been very low so my endocrinologist tested me for pernicious anemia. Because I'm having malabsorption problems that keep getting worse as well she tested for celiac disease too. The anemia had me wondering but I knew I didn't have the celiac disease and I was right. Both tests came back normal though so no helpful news there.

Two weeks after that appointment I had one with Dr. M where I told him that I had developed two sores in the corners of my mouth (I don't get coldsores nor do I have the herpes simplex that causes them so that was odd for me) that refused to heal plus the pain in my hands and wrists had moved up to my elbows making me want to gnaw my arms off! My feet and legs weren't doing much better. After considering my low B12 levels, the dual sores, and the pain he decided we should try a B12 shot and see how it makes me feel.

ANYTHING that might take away some pain or make me feel better is something I'm going to try and he knows that. LOL.

When I saw Dr. M last week I was happy to tell him that the pain in my limbs had eased back off, the sores healed three days after the shot, and I wasn't getting sick as often as before (stomach wise). This was very encouraging to him so we decided that for the next four weeks I will get a 1000mcg shot of B12 in my arm and then once a month after that. Dr M said that it takes six to eight years to develop a B12 deficiency so one shot wasn't going to cure everything but at least now we know we have a chance of fixing a few things. The hope is that by kick starting the B12 in my system and liver that it can make my levels almost normal.

Why am I giving the shots to myself? Well because I've had a huge fear of the day arriving when I have to give myself the emergency steroid shot so I figured the only way to get over that fear is to conquer it. The nurse showed me how to do the shot, I did it, and it wasn't that bad actually. Now I also won't have to drive into town every week just to have them stick me. I also can enjoy grossing out the kids because you know they're going to be curious and watch! haha

So that's about it for right now. My scan in on October 30th & 31st and hopefully I will know all I need to within a week after that.

The kids are doing great and have been very healthy thankfully. My hope is that I'm taking all the medical problems so that they don't have to. I want nothing more than a healthy life for these kids and I hope they get that.

New Endocrinologist- Again

I did see the new endocrinologist in May and she seems much better than the one I saw when we first moved here. She even has another MEN2a patient! It was exciting to hear (in that morbid sort of way) that the kids and I aren't the only MENnies in this area.

She had me do a blood draw for calcitonin, TSH, intact PTH, Vitamin D, B-12, calcium, and something else I can't remember. I just had all this done in February but I can understand her wanting fresh results for her own records. Besides, I'm so use to blood draws at this point that it doesn't bother me at all anymore.

The calcitonin came back pretty much the same as before which is good, my TSH levels are good as usual, my intact PTH was actually close to normal for once so that was exciting, calcium was really good, and the only problems were with B-12 and magnesium. Dr TE just told me to try taking a daily vitamin and see if that helps.

I'm very glad I listened to Dr. M and made an appointment with this endocrinologist because she seems like the kind that cares and will listen but also knows what she's doing and can take control of your care if need be. I like knowing that she knows about MEN2a and will know what's going on with me.

Now all I have to do is find a new rheumatologist (because of Dr Jerk I've been weary of going to another one) and maybe look into an oncologist again.

Insurance Companies Suck Too

I filed a formal complaint with our insurance company (Lovelace Health) on Dr. Jerk Rheumatologist in hopes that they would actually look into it. Of course, I was wrong. All they did was have one of their people go to Dr. Jerk, ask him if he "fired" me, he told them "no", and that was it. They believed him and basically told me too get bent. :(

He of course didn't write down in his notes what he said to me so he was able to lie his way out of the whole thing even though Dr. M said the notes that were sent to him basically stated Dr. Jerk was finished with me! They didn't bother to ask Dr. M any questions. Of course, why would they because then it would mean they were actually doing something.

That creep sat there, looked me in the eye and said... and I quote-

Jerk- "Well we won't need to see you again unless something new comes up"
Me- "So what does that mean? So I don't make anymore follow up appointments?"
Jerk- "No, there's nothing more I can do for you. Okay, so you don't even need to go by the window on your way out. Good-bye"

That is exactly how the conversation went and that jerk lied his ass off when questioned! I know he's ignorant but it's upsetting to know that Lovelace Health doesn't care about their customers either.

I sat in my van and cried for TWO HOURS because of that asshole and when I file a complaint I pretty much get told just to shove it! Nice, I'm very happy to know that each month money is being taken out of my husband's paycheck to pay for insurance through this company!

Until some of these doctors pull their heads out of their pompous asses we as patients are damned if we do and damned if we don't.

I had an appointment with a new oncologist that I cancelled when I received the insurance company's stupid letter. I'm just not going to do it anymore. I'm finished. They win. I'm through being a good girl and going to all these doctors just to get treated like dirt because they think they know it all.

Unless you are a doctor that specializes in MEN2a and/or medullary thyroid cancer then you don't know even a quarter as much as I or most other MENnies I know do. WE study more than just a chapter on it. WE live it every day of our lives. WE are the ones who do the research while you sit back in your chair with that smug look on your face bluffing your way through our appointment. WE educate ourselves to understand this because doctors like YOU could care less.

It's because of YOU that most of us have been through botched surgeries, problems with medications, scary trips to the ER, and left in pain. It's because YOU think you are the be all end all. Here's a little truth to shove down your cocky self-righteous throats... you don't know squat! You know nothing and your manners with patients suck even worse than your attitude! But hey, what do you care? No matter what you get your money and isn't that all it's really about for you? It surely isn't because you want to help people. Every single one of you doctors with your heads up your asses make me sick!

To the doctors who truly care, who actually listen, and who give us even just a little respect and credit for knowing what we're talking about as well... Thank you. Thank you from me and my children. You are too few and far between which is a shame. Knowing you are there though helps people like me not just give up hope. Thank you for that.

Thank you to Dr. Jennifer Lawrence for crying when she gave me the MEN2a results on my children. Thank you for caring for them during our search for a ped endo. Thank you for trying to talk me out of going to Tampa for my surgeries. I'm sorry I didn't listen to you.

Thank you to Dr. Samuel Wells for all the phone calls two years ago when we were trying to figure out if I was eligible for the study. You always cared first and foremost about how the kids and I were doing and even when we knew that I couldn't be in the study you still cared. That meant alot.

Thank you to Brad Ridge the PA at Valdosta Family Medicine Associates PC. If it wasn't for you who knows when the MEN2a and cancer would have been found. You literally saved mine and my childrens' lives and for that I am forever thankful. Being upset over a pregnancy test seems so silly now. ;)

Thank you to Dr. Christian Meuli for always listening to my ideas, thoughts, and suggestions. Thank you for letting me be a part of my healthcare. It's because of you that I stand up for myself and my kids with other doctors. It's because of you I know we deserve great care. Thank you for that.

I know that anytime someone Googles any of those names they will be led to this blog and hopefully they will read about the great care providers I listed. If only there were more doctors like these in the world it would make things so much better for us and them both. Of course, if all doctors were like them then I couldn't say how special they are now could I? ;)

Bret and Chelle's Thyroidectomies

We left for Atlanta around 10am on Tuesday, March 29th so that we could get to town fairly early and get settled into the Ronald McDonald House. I was also suppose to meet up with some of the ladies from Amity but thanks to traffic on the way up we ended up not getting to RMH until 2pm so I had to miss out. :( It took about an hour to get checked in and get settled and then we decided that we would go have a nice dinner so the kids could have something nice the night before their surgeries.

After discussing it a little we settled on Papadeux's for dinner. We let the kids order what they wanted and Lil Man was even good during dinner. It was nice and relaxed and actually enjoyable for once. We even had a very good and nice waitress which was a change for us (our bad luck usually even runs to getting bad service or servers when we try to eat out somewhere). :)

We left there and headed back to RMH to relax and just spend time together. The kids and I hung out in the family/play room while Vinny talked on the phone most of the time. Big B played the old Super Nintendo that they had there, Sis made a friend and colored with her, and Lil Man ran around trying out EVERYTHING which meant Mommy was left to clean up after him constantly (especially since Daddy wasn't around to help). Around 8pm we headed to the kitchen for a quick snack for the kids and then up to our room. I took pictures of everyone, Sis had a meltdown, Lil Man didn't want to sleep, and finally we all settled in. Of course, there was no way I could possibly sleep so I just laid in bed until around 4am when I got up and got ready to go.

At 5am on the day of the surgery I got everyone else up and ready, took more pictures, and then we were off to the hospital because we had to be there by 6am to register at Day Surgery. We went to the wrong part of the hospital at first and had to totally backtrack and go a block down to the Children's Hospital but once we got there it was fairly easy to find Day Surgery. Got in there, added our names to the sheet, and then sat down to wait. The film crew was suppose to show up at 6:30 but never did (I'll fume about that one later on). We only had to wait about 10 minutes before we were called to register and then sent right back to a room. Nurses came in to get the kids stats and let us know how things would go and then Dr. G (the surgeon) came in and talked to us for a few minutes going over everything that was suppose to happen. He said it would take about 3 hours for each child and there shouldn't be any problems.

At about 7:15am they gave Sis some Vercet (not sure that is the right name) to calm her down before the surgery and then they came for her at 7:30am. I was able to go down to the first floor to the little room right outside the Operating Room and stay with her until they were ready. Unfortunately the medication never took affect and she was so scared and nervous. My heart was breaking the whole time as I was telling her that everything would be alright. Finally when they came for her at 7:45am she started crying and all I could do was tell her I love her and watch them wheel her through the doors. It took everything I had not to lose it and go running after her. All I could think was how this just wasn't fair and my kids shouldn't have to go through this. I got back on the elevator wiping the tears and went back up to the 6
th floor to wait for an update. An hour later they called us to let us know they were JUST STARTING the surgery. That was the first upset of the day.

They called us every hour for the first two hours to update us but then as the third hour came and went we heard nothing. I started to freak out and wonder what was going on. Finally around hour FIVE they called to tell us they had just moved her to the Recovery Room and were waiting for her to wake up. They also told me they had to use more anethesia than normal on her so she was having a hard time coming around. At this point I was a wreck!

Big B's surgery was suppose to start at 10:30am but of course it didn't. When 1:30pm rolled around and we still hadn't been told when he was going back I felt bad. The kid hadn't eaten since the previous evening and he was hungry. They had said no food or drink after midnight which from MY experience meant they wanted nothing in your stomach so you didn't throw up during surgery. Well what they DIDN'T tell us was that he also couldn't have gum, mints, hard candy etc. So I gave him a piece of gum hoping that it would help his stomach a little. Ten minutes later a nurse came into the room and asked how long he had been chewing the gum. I told her around 10 minutes and she said "Well this is probably going to postpone his surgery now because you're not suppose to do that!". I looked at her and said "POSTPONE?? You have GOT to be kidding me! Over a damn piece of GUM?!!".

So I was on the verge of completely breaking down and another nurse came in and explained some junk about saliva blah blah blah and I told her that no one had said anything about that because if they had I wouldn't have given him the gum and what the hell did they expect me to do when it is going on THREE hours past when the kid was suppose to be in surgery? She started to get ignorant with me and then told me that Big B's surgery was going to be postponed another two hours because of ten minutes of gum chewing. I started to tear up and almost totally lose it. I informed her that this was bullshit plain and simple. She left and then came back in a few minutes later saying that the anethesiologist said she isn't holding up surgery over a stupid piece of gum and that he would be fine. I fell in love with that anethesiologist right then and there. LOL.

So Big B was given his Vercet as well and around 3:30pm he was wheeled down to the OR. The meds took with him and I can honestly say it was one of the funniest experiences of my life! The boy was such a hoot!! It affected him so much that he was getting looks like "Oh that poor mentally handicapped boy has to have surgery". Seriously! If I ever wanted to know what my son would look/act like if he was stoned I now know. I wish I would have had the video camera. LMAO. So it was a little easier to let him go to the OR but again, as soon as he was out of my sight it was tears and back up to the 6th floor.

At this point we STILL didn't have Sis back yet and had been sent to the 4th floor to her room to wait for her. Luckily after about 20 minutes they finally brought my baby girl to me. Seeing her broke my heart. She was so pale and her face looked swollen. She also had bandages on her neck and she was so drugged that it hurt to look at her. :( After about half an hour she started to come around a LITTLE and just looked at me with this pained look in her eyes. She couldn't talk and was in alot of pain. She kept motioning that her head hurt. Come to find out they had put her head in some messed up position during the surgery and it would end up causing her alot of pain over the next few days.

We got the first call on Big B at 4:45pm and were informed that they had JUST started on him as well. Of course, I got upset again but tried to focus on Sis. Two hours later we received our second call on Big B and the lady said they were halfway done. An hour later we were told they were JUST NOW starting to take out the thyroid!!! Vin and I about went through the roof!! How could they have been halfway done with a thyroidectomy an hour earlier when they were just NOW touching the thyroid??? I was regretting having this done at Egleston more and more with each passing minute.

Add to that the fact that the few minutes here and there that Sis would wake up were filled with pain, her having NO voice at all, and then we find out that she has what looks like BURNS (welts) on her back from the electrodes during surgery which is also hurting her!! Her nurses were nice and quick to help her whenever they could though and that was probably the only thing that kept me from storming the OR and taking my kids out of there!

By the time all was said and done I got Big B back around 11pm that night. He came back to me looking so much better than Sis. He wasn't in any pain, he had a raspy voice, and he was awake. It made me hurt for Sis even more knowing that this was how she was suppose to come out too but hadn't.

They were unable to put the kids in a room together (and had even originally said they would be on different FLOORS until I told them they would seriously kill me if they did that because I would spend the next two days running between two floors and I just couldn't handle that) so they ended up across the hall from each other. While I was in Big B's room getting him settled in the nurses decided to try to get Sis up and going to the bathroom. Then my two children in different rooms across the hall from each other threw up at the EXACT same time! I could not believe it! LOL. After that Big B said HIS back hurt so I rolled him over and I'll be damned if he didn't have the exact same burn/welts that his sister had! I was beyond ticked off at this point and wanted blood! :(

Dr. G finally came in and said that both surgeries went fine just took longer than expected. He said they didn't have to touch the kids' parathyroids and had left them alone. We asked him about Sis's head pain and were just told it must have been how her neck was angled. When we asked about the welts on their backs he had no clue what it could be from. I was not a happy camper at this point and had to order pain meds for both of my kids.

We also asked about the whole halfway done/just starting on the thyroid thing and he said he had no clue why the nurse said that. He said around the time she said that he was finishing up and he was sorry we were made to worry like that. Then he proceeded to talk to Lil Man and tell him how cool his shoes were. LOL.

Big B fell asleep and settled in fairly easily. Sis was scared to death she was going to die in her sleep and basically refused to fall asleep. So I stayed up with her all night in her room while running back and forth checking on Big B well. Vin had Lil Man at the RMH trying to get some rest and give Lil Man a break from the hospital. I tried to get them to give Sis something to put her to sleep but their answer to that was to give her Morphine. So needless to say she didn't feel much pain but of course still didn't sleep because Morphine is NOT a sleep aid.

Oh and did I mention that in the middle of all this I started getting a wisdom tooth in? It was lovely let me tell you. Of course, I needed to be there for my kids so I couldn't just drug myself on pain meds so even if Sis had slept at all I still wouldn't have. :(

The next morning Sis was still having head pain, still not sleeping, on a liquid diet, and still had no voice at all which was really starting to worry me. Big B on the other hand was feeling fine, getting bored, eating a regular diet, and his voice was fine. Around 1pm the attending doctor said that Big B could be released. Big B hadn't been out of bed yet to walk or anything and when I asked what to do if he had pain I was told just give him some Tylenol when they had had him on Toradol the last 24 hours. Sis on the other hand was in no way shape or form ready to be released which really upset her. They released Big B and he walked across the hall and promptly got dizzy, weak in the knees, started hurting, and was feeling very sick. I called for them to get that doctor back up here and re-admit him ASAP!!

Of course, that doctor had left for the evening and another doctor had taken over. When we asked where HE was we were told that he was in the waiting area on his cell phone. Vin and I waited for about 10 minutes and then I had had enough so we walked over there, stood right in front of him, and when he looked at us I informed him that as soon as he was finished we needed to talk to him. Yes, I had hit bitch mode at this point due to incompetance, lack of sleep, and a wisdom tooth from hell!

He came back to the room with us, told us he had no clue why they would say just give him Tylenol and said he would prescribe Big B a pain medicine and then told us that we couldn't re-admit him. We would have to go down to the ER, let them check him over, and then if they decided he needed admitted he would be put on a whole other floor. He also said he couldn't believe they released Big B without letting him walk around first. A comment two of the nurses echoed as well.

The doctor informed us that everything Big B was feeling was normal and what we could do is have him stay the night in the room with Sis and I that way if he got worse or I decided to take him to the ER we would already be there. So after talking to Vin we decided to do that and Vin filled Big B's pain med so he could take one. I gave him half of what they prescribed having had the "joyous" experience of several pain meds by now and it was more than enough to make him feel better and put him out for the night. We also made them give Sis a benedryl/tylenol mix so she would actually sleep this time. She had tried to sleep during the day but nurses kept coming in and out of the room waking her up. She ended up only getting an hour long nap total.

Vin and Lil Man hung around for a bit so Lil Man could snuggle with me and get some love. They finally left to go to RMH and the rest of us settled in at the hospital. Luckily Sis slept decently that night (March 31st), Big B slept like a log, and I was even able to steal a few catnaps off and on. The next morning Big B felt fine and Sis STILL had no voice whatsoever. It was really starting to worry us but they assured us it would come back in a few days and let us finally check out in the early afternoon.

The same doctor that had released Big B came in to release Sis and I laid into him. I told him that I didn't appreciate him not checking to make sure my son had walked or saying just give him Tylenol. I also told him that he could go ahead and prescribe Sis something for pain now because there was no way she was going to get by on stinking Tylenol. I think he saw how close to snapping I was because he was more than happy to oblige. :)

Thus started our trip home. Vin wanted me to sleep the whole way home because he said I was starting to look ill myself but I stink at sleeping in the car/van so I kept him company instead. Both kids slept most of the way home and Lil Man watched movies and was so good. The whole time he was better than I had expected and I was so thankful! Everyone was so glad to finally be home so we could try to get back to SOMEWHAT normal.

Unfortunately, here it is four days later and Sis STILL has no voice. We are now being told it could take up to 6 MONTHS before her voice comes back and I am NOT happy at all! The whole experience was horrible and made so much worse by incompetance on so many levels. I would not recommend Children's Hospital at Egleston in Atlanta to ANYONE and we will not be returning there ever.