Vent update..

After some calls that ended up being not so nice....I got a very nice call back from the PA this afternoon.

Philip will be seen tomorrow at 11:15...I was warned that the regular Dr is out of town so this may be just a "lets get him over the hump" fix appt tomorrow. Not the best..but we will take it...It is a step in the right direction.

The reason I did not take him to the ER is because of the type of machine he has..he can only have certain types of meds and also they can only set the machine. I think in the end the ER would of been a big mess. BUT...I will be asking the DR what we should do next time we face this..and he is gone or it is at night..or a holiday..etc.

Philip has been sick all day. He finally got up at 5:30 and is just taking things really slow.

Thank you all for your comments...your support meant so much to me today ....and everyday.

How in the world..did I get so blessed to have all of you on Philip's team?

Oh yes I am here to vent again..

I bet many of you will get what I am about to say...I LOVE Philip's DR. I think he is wonderful and cares and everything else good I can think to say about him. I also love his front office lady. She is sweet and always seems to care how Philip is doing and even ask about me. I also have a soft spot for her because I had my kick butt shirt on that said LOVE HOPE FAITH and she looked at me and said..I love your shirt and I learned that lesson late in life. I said well at least you learned..so from that moment on...I have had a nice feeling when I talk to her. Wow I just gave you tons of info you may not of cared about..But you know me..lol

So my sweet son is sick. He is miserable and in pain. He did have a few good hours yesterday afternoon where he was not hurting as bad with his pump and pain meds...then last night it all got bad again. So as I have mentioned before he is maxed out on meds..between his pain pump and the pain pills and the seizure meds and on and on. It is alot..too much..for him to need to take and still be hurting.

Philip ended up throwing up all night...needless to say I have been counting the hours till the Dr office opens to call them. Why? Because I THOUGHT they would be able to help me..

So I call..and find out his Dr is out of town..so I ask about his PA. The lady says he is here but he is booked up...I said until when and she says till the 31st. I explained to her that Philip was in a lot of pain ..and not functioning well. I also told her I had a concern as to if the pump was working correctly. She listens and says ...I can give you no medical advice. I am thinking where in the world is the sweet lady I always talk to..of course she is not there. So I say...does your office have appts set aside for emergency patients. She says..Mam...all our appts are for emergencies. She explains to me when dealing with such strong medications things can go wrong. Wow thank you for that ...so I left her with...well not all your patients are kids and kids who have had 19 brain operations and now are so drugged up they can not function. So please make sure you send all that info the PA because if something goes wrong I want to make sure I know that you knew just how sick he was.

It is just a hard place to be..because we always are able to get in. He is a wonderful Dr and he is the best at what he does. But his staff ..or whoever answered this morning really made him and his whole office look awful , at least to me. Plus the bottom line is Philip is just really sick and needs to be seen.

Have I heard back? Two guesses and the first does not count. HECK NO.

Here I go again..

Okay I am feeling really guilty about my post last night .

Sometimes I wish I could be more of a person who says it and leaves it alone. Then again I like that I am a person that does not want to hurt anyone...

I want to make sure each of you understands something...the post had NOTHING to do with ANY OF YOU asking questions on here , in emails, on twitter or facebook or the phone. I love that you care and want to know. Do you have any idea what it does to my heart to know that no matter what is going on...with who..or what time of day..Someone will be here to pray ..and they care. That is a true blessing...

I think I was very frustrated last night because ...well because I just feel bad and I am over feeling bad. And maybe I can admit I was feeling a little sorry for myself. Just a little.

I have been thinking that I miss the old me..but the truth is..so much good has come from this hard time. I have found myself being forced to lean on GOD more then I ever had in my life. And that is a wonderful thing. I have forced myself to make more time for my children..and my family. And I have found all of you...so many wonderful new friends...

So while I miss feeling stronger and healthier..I would hate to only think about that and not the good that has come from all of this..

With that being said..I was frustrated..I have people who email me and are very upset that I have not done this or that ...They are mad because I have not shared the deep personal issues of my family. I have had someone be very upset with me because I have ignored emails from them when they say that maybe it would be better for Philip to not be here. I am NOT and will NEVER allow someone to force me to do or feel like I need to do something because I owe it to them. Heck..I am still trying to figure out what I owe to myself and my family.

So for each of you my friends who support me..please do NOT stop posting here..do NOT stop asking how we are doing..I know you do it cause you care..and that is a wonderful feeling on some hard days.

So come on...come here and ask me some questions..make them good..you know you want to..right?

Sunday Afternoon Philip update

I wanted to give you a quick update on Philip. He was up a lot last night but slept this morning. he got up about 3 and took some more meds and seems better for right now. I will be making sure we get in to see the DR tomorrow morning. WE have had too many days where it seems like everything is going better and then all heck breaks loose. A plan of action will be nice tomorrow.

I guess my issues still goes back to...sure today he seems in less pain and is up and functioning..but the amount of meds he is on along with his morphine pump is scary and shocking. Wish we could find and fix the issues vs taking more and more drugs. But for today I will be thankful that the meds have been controlling his issues better. Baby steps...

Also without going into personal details...I would like to ask you for prayers for Philip dealing with some issues that are ongoing and personal as a result of him having a stroke. These will be dealt with but it may not be easy pleasant for him or me. But ya'll know me..we will get it done.

Have I mentioned I so wish there was a book called How a Mommy is to know what to do for all of this..

Can any of you write one and send it to me?

Love you all and am more thankful for all your support then you know..Please stick around..I promise things will get better ..They will...right?

Questions and Answers...Part Eight

A wonderful blogger friend Rachel... who has been so supportive asked.... what do you do to wind down? What kind of fun stuff do you enjoy? (my list would be all FOOD, so I'm sure you are far more interesting, LOL)

Oh Rachel...Food has always been really big on my list to cover all the bases. It has been my best friend on some VERY hard days at the hospital ...I ended up weighing 223 pounds ..One day I realised I was as upset being heavier and eating as I was facing life. So the diet began and I lost 95 pounds. Know what happen ? After I got down with my weight and was on a way too strict not so healthy diet..Philip was in the hospital..I gained 15 pounds in 2 weeks. That was a reality. Then know what happen the next time? Philip was in ICU for weeks and I stayed hard core on plan and almost had a nervous breakdown. I had no idea how much I depended on food.

Oh wow I just realised that is not the question you asked me. But I will go ahead and just keep this here...

Now Rachel..How about I answer that question..

I LOVE to take bubble baths...I LOVE candles..I LOVE all smell good stuff. Especially for the house. My new favorite scents are cucumber and I love coconut. I love getting pedicures..they make me feel so spoiled...Wish I could get them every month. Heck I wish I could teach Emily to do them. And the idea of getting another massage is just heaven. So I guess I like spoil Amy things...maybe we need a girl weekend away to do some of these..wanna join me?


My new sweet friend Lianna ( who I am so glad I have found on blogger and Tweeter ) asked...
with all the things going on in your life, what do you do for YOU??? I know you always put everyone else in your family first (which is what I try to do too), but sometime a girl just needs her time. So what, if you could, would you do for YOU??
I think I answered a lot of these things above. I LOVE smell good stuff. I love bubble baths...I am thinking about trying to buy one of those cloth pillow for the tub to use when I am not feeling well and have a headache. Bubble bath and a candle..and lotion ...Heaven.
I also would love to try to get a massage soon. I have been looking at some signs around town ..I think they are taunting me..LOL.

Oh and one new thing I LOVE is very strong smelling..what are they called? The smelly sticks you light..I found some one time before that were real strong and smelled wonderful. Now all I can find are wimpy ones.

So if you know of any ESTY ladies who make them or sell them..Let me know.

Odds and Ends...Small Vent

Tonight we are in the same pattern as the past three days. Maxed out on meds..and he so needs more...Finding a balance is NOT going to happen. We will be getting some testing and procedure on Monday. Part of me wonders if the new machine could be broken ..chances are no....more then likely it is just not working for him. We will know more Monday. The Dr who is covering for his DR would be more then glad to see us and try to help..but as we have heard way too many times..Philip is complex and they are not sure what to do or try etc. His Dr will be back Monday and I just feel in my heart He is the best one to even start to change anything...Guessing games are never good..and when it is my son..It is not a option I am willing to take..So we are taking it day by day..Hour By Hour..

I am healing...still sore..but that is to be expected. I had a wonderful conversation with my sweet friend Sheli last night. Her DH who is a pastor blessed me with a wonderful time of prayer...He said just what I needed to hear. In fact I told Sheli I thought I had a pastor crush on him...she just threaten me and said some things that I did not know a pastor wife could or should say...Nah..I am joking..

Sheli listened to me tell her how concerned I was that I was so tired and worn down ..and even got out of breathe so easy. She listened and then reminded me that I am sick and have been having surgery after surgery. It is odd...while I know all of that...and I live it daily..it is easy to forget it and get down on myself for feeling "OFF". I Hate to feel like I am giving into being sick. But you know what...as much as I hate to admit it..some days lately it has won. This thing called Cancer and Treatment has been taking a toll on me . But not for long...

I wanted to share that my anxiety has gotten some better. I have been really trying to focus on the wonderful blessings in my life and not all the things that can and might happen. It does not always work perfect..but I am working on it daily. I do NOT want to give in to worrying about what if's...cause there are some real bad ones out there...

I have really tried hard to spend some time focusing on the kids. The truth is..Philip's medical issues require a lot of time and physical and emotional energy. Reed is growing up by the minute and before long he will not even want to share silly jokes or gross stories with me...Emily is turning into a young lady by the minute ...she is anxious about gong to Jr high..and I am anxious and excited for her. And well you all know I LOVE every second I have with my sweet 4 year old. The kids require care and time from me..and they give me back something more special....then money can buy...LOVE .

Sometimes it seems that I feel like I am being short or nasty or judged...if I do not call or post or share this or that. The truth is..I am who I am..and I am doing things MY way. In the end of the day..I have to lay down and know I have done the best I can in a day..and some days that means I can not and am not going to talk, share, dwell, or harp on my personal life..or details. Some days I can not and will not answer emails...and I also may not answer my phone. Sometimes when "you" get upset that I have not answered the phone or answered that email...I have my head stuck in a toilet...or I am laying in bed trying to figure out if I can make it one more day without washing my hair. The fact is..while you want to hear the details..the answers to your questions..and or what is going on...It is not just simple fill in the blanks..it is my life we are talking about. Conversations about my Son and his medical issues are painful for me..if I want to talk about it..I will..when I can. If you ask and I say I will share later..I will. I do not and am not going to share details about my DH UNTIL I want to...It is not a reality show..it is my life. It is me who has been lonely and hurting and sad. Is it that hard to understand that I do NOT want to give out details? My medical..it is hard enough for me to even think about what may happen..I will tell you the "ugly" facts when I am ready..if I am ever ready.

This is not to you or you or even you..it is a general FYI...I can not even begin to tell you all how much your support means to me. But I am finding MY way. Somehow I did not really GET it that I am sick ...until it has gone on and on..until I have had operation after operation. Until I figured out I need meds to do the simplest of things...I think a light bulb has gone off..this is real..and I am finding my own way of dealing with it. So be patient and let me find my way..

Speaking of meds..I am tired and my pain meds are kicking in...

Steps Backwards..Philip.

I come to you all tonight and ask you to please pray for Philip. We are taking steps backwards... Things are not going well are NOT going well for him and I just am just heart broken. I have spent hours watching him suffer tonight...actually I have spent years watching him suffer.
Between Seizures and Pain and Severe Headache..it has been a long hard day.

We keep adding meds and pumps and seizures meds and then more meds that lower the seizure meds so we have seizures and add more meds...trying to not be negative here..but it seems like we take one step forward and a bunch back. It is crushing me tonight...really. It is just painful to watch and think about tonight.

He has had all the meds he can take tonight plus some.

I have a call put into the surgeon. Maybe he can up the pain pump..He has done it twice already. Know what nags at my heart....and also makes me angry...we can not figure out how to fix this..

With everything else..19 brain operations, strokes, seizures, loss of right side function and now weakness of left side..why why why and what what and what...Okay..I went there..some days and especially some nights I just can not help it..WHY..and how can we help him.

Please pray for Philip..He is just a kid..my first born son..

Thank You all for being here for me always..I am so blessed by each of you..