Saturday, November 29, 2008
Friday, November 28, 2008
We are so blessed. We have such a wonderful support team with all of you. I come here..I pour more heart out and within minutes you are all here...offering the words I need to hear. What more could I ask for? You all mean so much to our family. Thank You.
Today I watched Philip try to make the best of his day. He took his pain meds and ate dinner with our family at my SIL's. We got back home and he took more pain meds ...and went to bed.
Next week is going to be a tough week. So for all you who are so faithful to pray for our family. Please remember us next week.
Philip has some very serious and some painful test and procedures next week. I am anxious to get some answers yet I will admit I have been really worried all of this. Lately I wake up in the middle of the night in a panic. I hate not knowing. I just need everything to be okay for Philip. Have I mentioned just how much I love him. I am so proud to be his mom.. God has sure blessed me to allow me to be his mom.
I have been thinking about if or when I should mention this next issue. But I decided that since some of you who read this already know. ..I am going to ask for your prayers again.
As most of you know I had surgery less then a month ago. The operation ended up being a little more involved then we expected. And I am still working on my recovery. Getting stronger each day.
Last week I had a appt with a specialist to follow up with some medical concerns. Everything was going great...Until the lab sent over the last test. Things turned kind of scary. I had two special send out test come back showing a serious problem. The Dr also found a mass that needs to be removed. So what started as a simple follow up appt turned serious really fast.
Special thanks to my sweet friend MomtoEli. She kept me calm while I waited in the waiting room for the DR to get my follow up appts scheduled. She listened to my nurse tell me what and when to do my testing. I think she was as shocked as I was. So thank you MomtoEli. Your support is always special. But Friday it was wonderful. I think I even woke her up.
I will be seeing a hematologist who specialized in oncology. And I am seeing a surgeon next week to have the mass removed . I hated to even have to tell Jim about this. But as always he said..We will deal with it. and we will. As a family.
So next week will be very busy. Thank Goodness I have my appts early next week. I need to get some answers. And it seems that Dr needs them also.
I promise...before long. I will be here with a great update. until then. I will say..I am holding on to my faith. It is a little shaky right now...but never broken.
Tuesday, November 25, 2008
As I listened to the Dr talk today I felt my heart just crumble. I felt scared and sad . I was sad to watch my son sit across from me and know he was hearing the same words I was. I wanted to go hold his hand , but he is a man know. Or so he says. He will always be my baby boy.
The Dr was very nice and very concerned about Philip. Both of those things gave me a sense of relief. I wanted the Dr to care and it is clear after out 3 hr appt, he cares.
The MRI showed a issue. Due to the fact that this issue was found almost by accident . The scan only showed part of the issue called a syrnix. This is something that can be very dangerous for someone like Philip. because to fix it requires Brain / Spine operation. And due to the fact he has a shunt on the side that it is...would mean moving the shunt. His shunt can not be moved because it was moved last April due to infection. The right side has way too damage to put a shunt. And when he had the shunt in his spine it caused nerve issues in his legs. So....I am not sure.
Philip will be having a special scan JUST to look at this issue. That is important.
The next issue is Philip has developed a weakness in his left hand and his left foot. This was found on the Neuro exam and is not a good thing. Due to the stroke on his right side. He depends on the use of his left side. Of course I knew about the pain and the burning. But not the weakness.
The next issue is. The Dr is worried this could be a condition that is scary. It is a degenerative disorder . When he said this I said..well can we fix it. Remind me to never ask such a question again in front of my son. The answer is NO. And then Philip asked how we would treat it. The answer was pain management. Humm..that is not the fix we wanted to hear.
Due to some other issues we need to do a work up on his nerves controlling his respiratory area. Some of these issues can cause problems there. Where the syrnix is..it can cause a problem with that area. It can compromise the respiratory muscles.
We also have to be very concerned that the mass in the brain stem is growing and causing a issue. We will be looking at that also. The mass is a big concern because the surgeons think it could be very dangerous or worse to try to remove it...or we would of already. The mass is in a very dangerous area and surrounded by major blood vessels. This is also the same place that he had the stroke before. And the last time the DR try to get to the mass they could not.
So the appt ended with a game plan.
A script for percett 10 mg 2 pills every 4 hrs. And pain patches. Until we know the cause he needs to be off all other nerve type pain meds. We do not want to mask anything. I hate he has to be on such strong pain meds. And yet I would never want him in pain. Wishing we had a balance. Well I need to say I will pray for a balance. Will you all join me in that prayer?
The game plan is a hard one.
Three MRI scans to be done stat.
MRI of the Brain
MRI of the Tspine with and without contrast
MRI of the Brachial Plexus
Follow up asap next week.
Now one issue is every scan effects his shunt and causes it not to work. It deprograms the valve. So we will need to address that also.
Tomorrow I will get started on getting all this done.
So now I will explain my title. I am just tired. As a mom I want to fix Philip. I want to feel like I am able to help him. I miss him being small and being able to protect him from hearing the words we heard today.
I trust God. I am NOT mad . I am NOT disappointed in him. But I will admit ...I do not understand what in the world he is trying to get from me. What does he want from all this? I am just a little spiritual worn.There are no more tears for me to cry. I would love to come here and say something else. But after tears all day . I am just worn. Blessed to have my son. Blessed to be his mom. Blessed to have the sweetest most brave young man as my role model. But worn a little.
Tomorrow will be a better day. It just has to be.
Appointments start at 8:30 am. So it will be a busy day for Philip.
I just need to say....I really thought we were looking at a pinched nerve in his neck. I had no idea that things were so "complex". So I will need time to digest this and all will be okay. Cause it just is going to be..
I feel aggravated with everyone and everyone seems aggravated with me. I would dare say I am not fun to be around right now. Maybe I have been trying to fake it till I make it and I am not making it..and now I am in a bad way.
I am going to step out here and say that my DH really started this off with me today. He said a innocent comment ...something like...well Philip has so many appts everyday. Dh did not know that TODAY was the long awaited pain management DR appt. In my head I know it is not the end of the world and that he knew there were appts everyday . And it was 6 am and it just was not that big of a deal that he did not know what day was which appt. BUT..lol...to me..I have been thinking of nothing else. Worried...praying...stressing...and filling out 20 plus pages of paperwork. So in my mind..how did he not know..
So from that..came a flood of things..that I think have been bottled up. I so try hard to show the positive side of everything..my thoughts and feelings are not always positive. I am overwhelmed and discouraged this morning.
For example..yesterday. We had the nerve test. What could of been a simple test. I have been waiting for Philip to get this test for a week. So yesterday was the big day. We go and it was hard. They had to use his right arm for the base test. Now remember he had a stroke on that side and has tons of scars from operations. They had to do the needles through the scars and that has caused a flare up with the nerves in that arm. I asked the tech if the Dr would be able to use the right arm as a base for the left arm test. He says I doubt it. So you mean we did the right arm, why? BY the time we were done..I felt sick and Philip was in severe pain. The tech looks at Philip and says..wow you are such a stoic young man. I wish all my patients were as strong as you. I felt a lump in my throat. Philip just learned at a very young age...you gotta just do it . In a way it is sad to see him be so resigned that this is the way it is for him.
I do NOT want it to be this way for him anymore.
I am not mad . I am not questioning God. I am just making this loud and clear. I want Philip to have some peace and pain free days. I am his mom and I am not fixing this for him. I can not help him. I Can not take this for him. And I can not seem to stop my tears today.
Monday, November 24, 2008
Sunday, November 23, 2008
But just for all of you..I will most likely post them...Why? Cause I love when you all post yours and make me smile..so it is the least I can do. LOL
Okay..I will be back tomorrow to get my weekly dose of free but so needed therapy.
Tomorrow is a big day for Philip. Lot's of test to see what we can do to help fix the pain in his arm. I am hopeful the neurologist may take a quick look at the CD tomorrow...heck we went through enough to get the dang thing done..huh? lol
I hope everyone has a blessed day. We are going to watch some Dolphin football...
Saturday, November 22, 2008
So he just had some very strong pain medication and we are hopeful that he can get some rest tomorrow.
We have a very busy week next week. Monday starts with the nerve test on both arms, hands, back, neck and one leg. Then Tuesday we will try to get the muscle test done. Then we need the muscle biopsy done also. While it is busy it means we are moving toward some answers. We needs answers to make a plan.
Philip's pain is not managed at all right now. So we are counting the time till we get him in to see the pain doctor On Tuesday.
I could feel the prayers today for Philip. We are so blessed to have such a support team for Philip.
SATURDAY, NOVEMBER 22, 2008 08:50 AM, CST
There were issues yesterday while getting the MRI. After after hour calls to the Neurosurgeon and the neurologist it was decided that Philip will need to go over to Arnold Palmer today for the Neurosurgeon to look at his shunt and for him to be re scanned in the Emergency room.
The MRI caused his shunt valve to become UN programed and now it is not controlling the pressures in his head.
So today we will do the ER visit and the scan and the surgeon will meet Philip there to deal with the shunt valve getting reset.
Just a simple MRI caused all heck to break loose yesterday. The lady at the imagining center was all freaked out. I was frustrated. Philip wanted to go home. Ahhh...what a day....lol
I hope everyone has a wonderful Saturday. I will update again tonight after we have the scan and the shunt is working again. See that positive attitude. LOL.
Today is the day ...we will get it done. please .repeat after me..lol
Friday, November 21, 2008
I also should send Lisa a check for being my blog support team. I have emailed her with some silly questions. She always takes time to answer. In fact she taught me how to hyper link ..like I did with her name above. Thanks Lisa..
I got a wonderful email late last night from a lady name Jessica ..who found me through...yep you guessed it ..Davisix. She wrote the sweetest thoughts. Thank You Jessica. When I get back from the appts today I will e-mail you back.
But Jessica gave me some wonderful advice that I plan to follow starting tonight.. Maybe this is a good idea for all of us.
Here is her suggestion..
P.S. I was just thinking... I'd like to encourage you to pray through the Psalms. Just start from the first one & pour your heart out to the Lord through the words on the page & also add your own. It is awkward at first, but keep going- you will be surprised how you relate to the prayers David prayed himself when he went through dark times. It becomes so relevant to your own life & will bless you immensely. You will draw so close God. And you can do one chapter a day or one every hour if needed! Jessica.
So where do I start? I will admit that those of you who say how great I am doing holding it all together...are being fooled. LOL. I have had a hard week. I would wake up and promise myself that the day would be okay no matter what. I told myself that I can only do what I can do. And I promised I would not allow myself to look at the big picture..just piece by peice..we would do what we could each day. That lasted not a day.
Today I really think I have a bump on my head...from feeling like I am banging it on a block wall...My goodness. Philip's disability worker is trying to make me crazy and she is not far from seeing it happen. I have been a nervous wreck dealing with her on a daily basis. Today I ended a phone call with her...and the tears started. And you know what...it kind of felt good. Just to say..I am frustrated and overwhelmed . And I cried and then I dried my tears..and we are moving on.
So as many of you know the important test had to be canceled earlier this week. Due to that being canceled, we could not do the follow up muscle test. They have to be back to back. Then we missed the MRI because we thought we could not be there due to the test. And by the time it was canceled the MRI spot was taken. Okay...got all that so far? LOL
Today...I think we got somewhere. Philip has a stat MRI tomorrow. They called and he is to have the nerve testing Monday. Tuesday he will have the consult with the pain management Dr. Wed we will see the Surgeon to follow the brain stem mass/cyst . And Thursday we will be Thankful.
There past few days have been rough for Philip. His left hand and arm is hurting so bad. The pain meds are not helping...it is a nerve burning type. His right arm is acting up bad tonight...due to the stroke and the pain from all the operations trying to repair the damage. So needless to say...it is a hard night for him. But we will get through it..cause there is no other choice.
Philip is having to ween off his one seizure medication and headache medication due to a problem it is causing him. This is scary. But he was having some heart racing and other issues that could of been a bigger problem left on it. So until he sees the Pain Management Doctor..we are going to just take each day and pray for things to not get out of control with the headache or seizures.
Philip will start high does steroids this weekend. So he will need to be very careful about germs. It lowers his immune system. That means I will be forced to clean ...deep clean. LOL
With all that being said. Let me end with something positive. We are blessed beyond anything I ever thought we would have at this age. There have been many days that I just was not sure what the future would hold as Philip grew up. So yes we are blessed. I love being his mom. And we as his family can not believe that we were picked to have him as the example we strive to be more like. Strong and Brave. I guess I just love him so much..it sometimes scares me.
Wednesday, November 19, 2008
I just have felt such support and peace knowing each of you are reading and praying for my son Philip.
I just love him so much. I need him to be okay. I need him to not be in pain. I just need some answers. I need these things , so I can help him. That is what us moms do..right? I NEED to do that.
Once again..thank you all very much. It means so much to our whole family. I FEEL the prayers.
If you get a chance go by and take a look at the cutest idea...called Santa's Key at Juju's
Tuesday, November 18, 2008
Things do not always go as we have planned. I swear I know God laughs when us mortals make plans. That is clear after the day we had today.
Yesterday we meet with the DR and spent a long time meeting with him. he was kind and gentle and very attentive to what we had to say. It is such a nice feeling to leave a DR office KNOWING a DR has not only heard you but listened to your concerns. That is very important.
The Dr was very concern about making sure we find the cause of whatever is going on with the arm hand..because we we all know..it is the only hand and arm Philip has use of...and we need to find the cause so we can make sure we can protect it.
Philip will have a stat MRI to check for a stroke, a neurological cause such as the mass/cyst pressing harder on anything in the brain stem. He will have a Nerve test, a muscle test, a stat Cat scan of his neck and spine and we are looking at a surgical procedure to look at a sample of the muscle. We also need to make sure this is not a spinal issues..because he has had spine operations in the past.
So we had a plan..or so I thought. Today I had a meeting with a Doctor that I had to keep at noon. The only time the tech could do the first test was a half hour before the meeting that was 45 minutes away. So I knew there was no way that would work. As I panicked and started talking to the nurse..she knew how important both appts were for Philip's care. She called 3 other patients until she found one that could switch and that way we would be able to do both appts. I was thrilled and just felt so relived that things were falling into place. Then tomorrow we would follow up with the second part of the test . Everything was all planed.
This morning we got up and I helped Philip get ready...which is not easy considering the pain he is in and also the issue with his "good" hand. We get to the van and my cell rings. The machine is broke and we can not do the test. And now we can not do tomorrow's ...ahhhh...crud...I am so frustrated by this...I just can not stand it.
So now we are waiting for them to hurry up and get things moved around around...not easy when a special Dr has to do this test. But I know it will get done. It just has to....soon. His pain is so bad right now and he is not going to be able to keep this up long.
So we also made some other decisions. Philip has to come off one of the seizure meds..his body is not handling it well. And due to the severe pain of the stroke issue..he will not be on the list to see the pain management DR. Scary stuff...makes me sad we are so deep into all of this. I sometimes am shocked we got here....but then I am also so thankful we are here...ya know?
And one last bit of hard news...Philip will need to start a high dose of steroids to help take down swelling on the brain..for those of you who know about this from the past...this is a very hard time for our family...with his immune issues and his emotions. So patience will be a thing to add to your prayers.
Thank You for praying for Philip and our family. I know I am new to many of you in the blog world and I hated to "dump" on you..but I feel like I know many of you. And yesterday I needed to reach out to you. Thank You for caring. There is likely to be more days like these...but we will get through them.
Monday, November 17, 2008
I have been thinking all night which DR is the best one to call. I think the Neuro Dr is the one I will start with. Since his arm is feeling on fire and not able to move I think it is his area and not a structure issue for our Ortho DR. I will know more when they open. We also need to make sure this is not a issue with the brain and the cyst on the brain stem. I also know he did have a syrnix that showed up on a MRI. That can be a serious issue that can require surgery. He was not a good candidate for this operation since it is brain and spine operation. He has had so much work on both. His was small in size and we were going to just watch it. So many issues, so few answers. Maybe one day soon.
I will admit...seeing Philip in this mush pain with his side that is not the stroke side hurts my heart. It scares him . And well me too. I just know everything will be okay. It has to. But you know there is a side of me that is just said enough already. ENOUGH. He is young and handsome and I want him whole and happy and healthy. Please.
So I am pretty worked up on about 2 hrs of sleep and waiting for that clock to hit 9 am.
Please pray that we can get some answers today. As a mom I need to help Philip today. And Philip needs to have use out of one of his arms and hand.
Thank You.to my new blog friends. What a nice feeling to be able to come here and share laughs. But when things gets serious and scary. I know I can count on you also. I is a nice feeling.
I will update later today.
Sunday, November 16, 2008
Tonight I come to my new blogger Friends to ask for prayers. My son Philip is hurting and i just am at my wits end with worry, frustration . So with that being said. I thought I would put his medical update here tonight. Thanks for taking time to read.
Well today has been a really rough day. I just am not sure what in the world is going on and what we are going to do about it. But Philip is worried and I would never let him know but so am I.
Phillip has had major pain in his left arm all day...it has spasmed all day and had pain ...all day. I finally gave him a strong nerve type pain medication but it did not touch the pain. I could feel the muscle jumping around on his left arm. The scary thing is...this is his non stroke side. So today he has had no real function out of either side. This has been not only very painful but scary and very frustrating for Philip. I have not seen Philip this quite and sad and down in a long time. I know between his head and his pain today has been a long hard day.
I will be calling the DR first thing in the morning because there is no way we can do this one more day.
If you would please pay for some relief for him tonight. He needs to get some rest. He is starting to panic with it being so out of control.
Thursday, November 13, 2008
Wednesday, November 12, 2008
But today I did some serious thinking about something that has been nagging at me for a LONG time. I decided that IF I post about it maybe I will have some accountability with it. And maybe I will be more inclined to follow thorugh..Maybe...I hope.
A little background. I grew up with a very strict dad. The words control and stern do not do him just. I vowed to never be anything like him. And to most degrees I have followed through on that. But one thing I did not realize until lately is...some wounds take time to notice and even longer to heal.
My father was very stern about food. Did we starve? NO... But did we have enough? NO. In fact he made sure he had what he needed and wanted over us his children. Over time this left me feeling as if I needed to make sure I had enough always. Now let me say that I do not have closets filled with food or a basement filled ..just in case. But I do have a deep freezer filled and my cabinets are filled. While this may sound great it is a constant reminder to me of something. What? I am not sure. But something. Maybe that I am lacking something..or better said..That I fear I may lack something.
As I mentioned before I have lost 95 pounds in the last year. I have worked really hard at not over eating but still need to work with over buying.
I find myself not using what we have and buying more because I want to make sure the freezer stays full at all times and what if we run out etc. And most times this would be okay thing. But besides the emotional reminders. There is always the risk of the food going to waste...such as if it goes bad..and even wore when we lost two freezers filled during the hurricanes.
The filled freezer seems to bring me more guilt then comfort.
So ..instead of a cute little post or a woo hoo all is great update. I am stepping out of my comfort zone and putting this out here,
I am going to make a big effort to start eating out of my freezer and pantry till the new year. I am going to only buy the side items needed to make meals complete. I am going to make a effort to not feel the need to have the freezer filled. I am going to have faith that I am not going to starve...I would put a LOL or HAHA after that but deep down maybe I am afraid of that.
Does any of this make sense?
Tuesday, November 11, 2008
1. Name 5 things you love.
2. Pass the award on to 5 blogs you love.
3. Please link back to my blog.
So, 5 things I love......
Monday, November 10, 2008
My new friend Lisa tagged me and now I am it. Now it is my duty to post 15 things that alot of you might or might not know about me. I hope this helps everyone get to know me a little bit better. Here we go!!
1. I meet my DH right out of High school and got married.
2. We also got married after only knowing each other for 3 months. I would lock Emily up if she did that. LOL
3. I had a total of 5 Miscarriages .
4. There are times I feel like a complete failure as a mom.
5. My favorite colors are black and brown. Love them.
6. I recently lost 95 pounds.
7. I am working hard to switch over to weight watchers and it is not going great YET.
8. When Philip got approved for his Make a Wish Trip I was excited and heartbroken at the same time.
9. I miss our 18 kitty Booger daily. We had to put her to sleep two months ago.
10. Some days I worry that God made a mistake thinking I could be Philip's mom. Yes I know he does not make mistakes but some days it scares me. I never want to let either one of them down.
11. I have two greyhound boys that I love like my children..they are so darn sweet.
12. I am addicted to Diet Coke.
13. Turning 40 was as hard as I thought it was going to be. HARD.
14. I wake up some days and see my children and think..wow I am so blessed.
15. I have felt in a slump lately and starting my blog has given me a new "emotional lift"
Now I am suppose to tag other fellow bloggers in order to get to know them a bit better. Since I am new to blogging and all the people I stalk..I mean follow have this..I am picking out some new people I am reading. I hope they appreciate this..LOL
Saturday, November 8, 2008
Wednesday, November 5, 2008
When I look at this picture I get such a mix of emotions. For those who are new to the who and what and why. I would love to take this chance to share a little bit about the sweet boy in this picture Philip and how blessed I am everyday to be his mother.
This picture was taken the day before his "Miracle Day". When my first son Philip was born I knew that I had to be the most blessed women in the world, and sure enough I am. After three Miscarriages I just feared in my heart I would never be a mommy. God blessed me with a baby who we named Philip James. The very first time I saw him I just KNEW God handpicked Philip to be my son.
A few weeks after Philip was born he became very sick . We spent weeks trying to find out what was wrong with him. After being airlifted to a out of town hospital it was found that Philip had a mass in his brain. Philip had his first brain operation at six weeks old. While I felt a little worn as a mother, I felt blessed that we had put this behind us and could now enjoy being a new family. Or so we thought.
Philip's brain mass came back and at the age of six months it was decided that the only choice we had was to have another brain operation on Philip and this time not only try to remove the mass but to place a shunt. While we were scared we felt somewhat prepared having been through it before. This operation was nothing like the earlier one.
Philip celebrated his first Halloween at Arnold Palmer Hospital dressed in a cute pumpkin diaper cover. Philip hooked up to a IV pole got to go to his first party to see the older kids dressed up on the floor. And something that I always remember. If you look close in this picture, Philip had his first Popsicle on his first Halloween , hours before our lives would change forever.
The next morning we handed our sweet son to the surgeons and trusted like before that after a few weeks in ICU on the vent and some time on the peds floor. We would put this behind us and move on being a "normal" family.
After five hours in the operating room the nurse called to tell us that things got tricky. I think back to what I must of thought when she said that. I have a feeling I was not as aggressive with the questions as I would be today. Us moms of children with medicals issues learn fast to speak up and demand answers.
After thirteen hours Philip's team of doctors came out and told us....we just do not think he will live through the night. The DR said it was like cutting through a jungle and he just could not be sure what he cut through. If he does he will not wake up and decisions will need to be made. There was more...and I admit that after hearing the first part I probably did not listen too closely.
For months and months we lived in ICU. I lived in the waiting room with two chairs pulled together , scared to leave him in case something bad happened. Philip was blind for 17 days after his operation and we waited in a MRI room waiting to see if they had cut through his optical nerves. Thank God they had not and it was severe swelling. After being weened off the vent Philip had to learn to nurse again due to suffering a stroke on his right side. The list goes on and on. And in truth the list is still going on.
The idea behind this post is simple. The picture above was taken the day before our lives changed forever. But that picture does not make me sad. Okay ...it does some days. But most days it makes me smile. Wanna know why?
The picture above was taken the day we were blessed with our Miracle. Philip's life. Philip lived and he still lives.
I often say I wish I had known ....if I only knew what was going to happen. Thank you God for not letting me know. Thank you for allowing me to have that first Halloween with Philip and watch him have his first Popsicle. Thank You God for sparing me the knowledge that here we are years later dealing with almost 20 brain operations, 2 shunts, stroke, over 25 painful orthopedic operations, seizures and the recurrences of the brain mass. If I had known all that in advanced I might of missed enjoying the sweet simple things worrying about all the big scary things.
So due to my surgery I missed being able to post about our special day ....we call Miracle Day..every Nov 1st. Philip lived and he still does. Thank you God for blessing us.
Thank you Danielle for being so patient and helpful with the design of my blog. You were wonderful to work with.