Piper turns 7!!!!!

Piper turns 7!!!


Wow!!! Where does the time go?

She cannot be seven can she? I demand a recount! Haha

It seems like yesterday Miss Piper Collins could hardly walk and now she’s a little soccer playin, fashion diva.

We had a great birthday party for her on Sunday and I could not have pulled it off without a lot of help from my wonderful mother.

The theme of Piper’s party was “Cooking”

When all her guest arrived they each received an apron and used special paint markers to decorate it. Then they each decorated a placemat for themselves using foam pieces. It was great to see the different artistic abilities of each child.

After that it was time to cook! Pizza time! Each party girl made their own personal pizza and I have to say the girls made some mighty nice looking pizzas. For the adults that were there, we had hot dogs with all the works, potato salad, and chips.

Now for the really fun part. Each guest received their own 9” cake plain cake. On the table before them were three containers of white icing and dozens of bottles of sprinkles. And if that was not enough, there were cake decorating bags filled with different colors (red, green, purple, pink, blue, yellow) of icing and a variety of cake tips. With the only instruction of how to hold the cake decorating bags I told them to have at it. LOL!!!!!

These girls had a blast decorating their cakes. There are some budding artist out there people, so watch out. Each cake was decorated completely different and they were all sooo beautiful. I think the girls really enjoyed this. I mean, how many times as a kid were you handed a cake and a ton of icing and told to have it and not told how it had to look? LOL! After they had finished there edible creations I put them in a cake box for them to take home and show off and enjoy with there families.

So now after all this cake decorating it was time to eat cake!!! My mom made Piper’s cake and it was too cute!! It was in the shape of an apron and had a real bowl and mixing spoon set on it. To outline the apron and to show the apron stings she used pull apart twizlers. Written on the apron cake in icing was “Happy Birthday Piper. #1 Chef “

Yummy, Yummy…I will say here that the icing mom and I made ourselves for the kid’s individual cakes and Pipers cake and it was sooooo good. Heck, it should be when it called for 3 sticks of butter and 2 sticks of Crisco for each batch. Eekk!!!! LOL!!

So with cake you must have ice cream, right? Of course. So I had set up and ice cream sundae making station complete with marshmallows, nuts, cherries, M&M’s, Oreo’s ect… for them to make their final item.

After presents it was time for everyone to leave.

Whewwww what an exhausting party. I was spent and so was my head. But it was worth it when Piper came up to me and told me that this was the best birthday ever and that the girls thought this was the coolest birthday party they had ever been too.

See, that’s the thing. When you are a Mom you will do anything for your children, anything. To me, it does not matter how bad I feel just as long as I continue to see my children happy and smiling. I

Seven….can you believe she is seven?

Next thing you know she’s going to be sixteen and giving me a royal heart attack…so maybe seven is not so bad.

Questions I will try to answer

So I had a lot of people ask some questions in light of my recent blog entries, so I thought I might try to answer them. Try being the key word..LOL

Q: Where are the Syd and Piper (my children) when you travel back and forth to Baltimore?

A: They are with their Dad, my first husband. I try to schedule everything so that they are with him when I have appointment so not to disrupt their lives.

Q: How long does it take to get to Baltimore and why don't you just fly since you can for free?

A: It takes around six to seven hours to drive it depending on traffic. I don't fly into Baltimore becuase #1, I have to fly standby and usually I have a set time I need to be somewher and can't afford not to get on a flight. #2, Once getting to Baltimore I would then need to rent a car and that is just another added expense we just don't need right now.

Q: Why doesn't Wes alway's go with you to all your appointments?

A: Wow! I can't belive somebody asked this, but I guess it is a fair question. Yes, he does have FMLA but when he uses it he does not get paid. I am not working right now so basically he sorta needs to. LOL!!! So he goes to the big stuff and things when he is already scheduled off.

Q: Are you going to cut your hair again or shave it all off?

A: Good question!! I seriously thought about shaving it all of, well for about 5 seconds. I am not about to pull a Brittany Spears. This time its not as bad as I thought it would be. I am still able to cover it up pretty good and with the help of bobby pins it stays in place pretty nicely.

Q: With the blood in the ventricle wouldn't that be Hydrocephalus?

A: Another great question! That was what my Doctors feared was happening when they saw the CT scan after surgery. But my ventricles have stayed very small, in fact the ventricle where my shunt is has collapsed. Which for my shunt to work is not good but for fear of hydrocephalus it rules it out. For those who don't know, in Hydrocephalus the ventricles expand and get larger which is a problem. Dr. Dorai has commented several times how tiny my ventricles are which is very common in patients with Intracranial Hypertension.

Q: Why are you traveling to a Doctor so far away?

A: Not to be rude butif you read back over my past blog entries you will see why. It's not been easy to find a Doctor that can effectacly treat this disease.

Q: Since this new shunt is blocked wouldn't this surgery be a failure, and aren't you mad at these Doctors?

A: Well...yes and no. I don't consider this latest surgery a failure becuase who would have thought that I would have a brain bleed dirctly during/after surgery that would immediatly clog and block up the shunt? She has done tons of these surgeries and I am only the seconed patient she has ever had this happen to. What are the odds of that? Wish I had that kind of luck in Vegas! No, I am not mad with her. I think she is an outstanding Doctor. She has not given up on me and continues to have a plan.


So there you go, some random questions answered.

Today, so far, has been a pretty good head day pain wise. I hope it stays that way. Wes made some awesome homemade pizza last night and tonight he is making spagetti with his homemade suace. I love when he cooks!!!

Tomorrow I am going to make Piper's birthday cake with a lot of help from Mom. Hopefully her birthday party will come off without a hitch! Now if we could just fiqure out what to get her.

Baltimore ^$^#*&* ummmm Well Ya Know

Well maybe that's not a very nice way to open things up?

But that about sums up how I feel at the moment.

Mom and I left for Baltimore yesterday and I think we both had our doubts that we would even make it to I-95. I woke up with an excruciating headache that morning. It was to the point of being in a sweat and sick to my stomach. I took my Oxycontin and Percocet..nothing. I had spent the previous night at Mom and Dad's but we had to go to my house for me to pack. By the time we got to my house I really thought my head was going to explode. I knew it was time to bring out the big guns. Yep, Torodal injections. I never thought I would welcome drawing up a medicine into a needle and injecting it into my upper thigh but I gladly welcomed it this day. About ten minutes after the injection and a Phenegran pill I felt so much better. I slept all the way to Baltimore.


We met with Dr. Dorai this morning and I knew in my heart of all hearts it was not going to be a great appointment but still I guess it just stings to finally hear it directly from her. I knew things were wrong because my head is still hurting as bad as ever.

She looked over my CT scans and the blood in the ventricle has not gotten any worse and is starting to dissipate. Now for where the appointment goes downhill fast.

She does not want a shunt patency test done now (this is the test where die is inserted into the shunt to see if it flows through that will show if the shunt is blocked) because it will only tell her what she already knows. The shunt is not working. Yes, you read that right. Not working. The blood in the ventricle has blocked up the shunt. How did that happen? Well...When they took the first shunt out it was attached to tissue in the brain and the removal caused bleeding. This was not seen until after surgery was over on a CT scan.

We asked does this happen a lot? She said No. I am only the second person she has ever had this happen to. Oh course I am. That's the kind of luck I have.

So what do we do from here?

Basically we wait. Crazy I know. The blood should dissipate. Should being the key word. Once it dissipates we will do a shunt patency test to she if the shunt is working. If it is not we will do surgery again to replace the surgery. There is a change that the blood in the shunt has clotted up in there and even after the blood in the ventricle dissipates the shunt will not work.

However, if my vision starts to be effected before the blood clears she will have to go ahead and place a shunt in my left ventricle. (this is not the desired location for a shunt) She will not compromise my vision.

So what do I do about the pain I am in for now. This is a very legitimate question we asked her. She very plainly stated that I do whatever I have to do to stay comfortable. Meaning, pain medication wise.

I am to have another CT scan in one month and mail her the scan. Then I will see Dr. Doari and Dr. Williams and we will make a game plan from there.

Whewwww.. That's a lot to take in. I am not sure I have taken it all in yet.

I still cannot believe that the surgery did not work. I really thought I would walk our of that hospital pain free and feeling like my old self again. It was not to be.

We did ask her about an LP shunt. This is a shunt that is put into your back, if you remember this is the shunt that I came very, very close to getting. She said that she has never put one of this in anyone because there is no way to control the valve and overdraing is a big problem with these and low pressure headaches. Boy am I glad I did not get one of these because I have had low pressure headaches before and the only thing that makes them better is to lay flat. That is definitely not a way to live.

Overall I am just numb. That is the only way I know how to describe it. This disease has been right in my face for over seven months and I am still do not feel like I have a handle on it yet. I do feel like I have finally found the best set of doctors for this. Dr. Zeena Dorai and Dr. Michael Williams, they are wonderful!!!

I cry, I yell, I am angry, I am sad, I am frustrated, I am disappointed.

But I have hope. I will never loose hope. You can never loose hope.

Fred Flintstone

Fred Flintstone


Welcome to Bedrock!!!

Well my ankles are welcoming you that is. They are more like cankles at this point. They are swollen and hideous. It’s a good thing it is summer and I can wear flip flops because there is no way these puppies would fit into a pair of shoes.

I woke up on Thursday and right away noticed how swollen both of my ankles and legs were. Of course I was panicked by this. After a couple of phone calls, off to my PCP it was. Considering that I had just had major surgery and the swelling was severe he was concerned that I may have developed a blood clot in my legs. The only thing that made him think it may not be that, was the fact that both ankles and legs were involved. He sent me off to the hospital to have an ultrasound done on both legs to rule this out. While I was going to be there he went ahead and ordered the CT head scan and X-ray of the abdomen. (one less trip to radiology works for me)

The results can back pretty quickly from the ultrasound…no blood clot…that’s good! Now what is causing all the swelling? After looking at all the meds I was taking we think we may have found the culprit, a muscle relaxer. One of its rare side effects (like less than 1%) is swelling. So no more of that for me…easy enough right? Wrong!!
BTW- The CT of the head showed that the bleed in the head was still there but it had not become any larger.

You would think that simply stopping that medicine would solve the problem, yeah me too. Well the problem is still here and it is now causing my hands to swell!! My poor feet almost look square they are so swollen. As of this evening my calves are swollen and very sore. None of this can be good. I may not hold a medical degree but I do know that something is not right. It goes without saying that tomorrow I will be headed to the Doctor…again

For everything else well…..I had a horrible headache most of today, my side is killing me, and the whooshing has come back in my ears sporadically. Wes goes into work tomorrow for a three day trip and the girls are with there Dad until next Sunday.

Sounds really gloomy but on a positive note…the sun rose this morning and so did I.

Not for the faint at Heart

So everyone always wants to know where they cut at on my head.

They want to know how big the scar is.

They want to see it.

So I have decided to post a picture of it.

Now I am giving you fair warning that this is not a pretty picture.

I am telling you right now that it may make you squeamish, or sick to your stomach. Its not bloody or gory but it just looks, well...frankensteinish.

I am telling you, no, I am warning you that if you don't want to see it then DO NOT scroll down.

You have been fair warned so don't get mad and be "I can't believe she posted something like that"















TA DA......Wes has dubbed this the question mark incision






So there you have it my friends.

Thank goodness my hair will eventually grow and cover up that scar.

So now you will understand when you see me why I will be sporting a scarf. From my original surgery I lost 14 inches of hair but my hairstylist was able to "do" something and give me a new hair style. This time, there is just not much hair left to do anything with. Oh well...it will grow and on the plus side I get to go shopping for a lot of scarfs!!

Falls into place. Falls into peices

Home sweet Embassy Suites Home!!!

Considering it has been some form of residence for my parents, Wes, or me for almost a week now.

I was spent Friday and Saturday night in the hospital and was discharged late afternoon on Sunday. Before being discharged Dr. Williams (my Neurologist)came by with the second set of CT scans. (if you remember the previous CT scan showed blood in the ventricles of the brain...not a good thing) The second set/series taken Sunday morning showed that the blood was dissipating and not getting any larger. So that is a good thing!!! On a sour note he did say there is a possibility that the blood may have clotted up/blocked the new shunt OMG!!!! NO WAY!!!! In the same breathe he also said that is appears that the bleed may be a little above the shunt. Aghh....only me people, only me...

So to be honest this has had me in a not so lovely mood.

As far as how I am feeling? Well do you want a sugar cookie answer or the truth?

Ha Ha...you know I am going to give you the truth.

I feel horrible. But hey, what do you expect? I just had brain surgery.

My symptoms and pain are still here....they left for a little while but then they came back....why?

I awoke from surgery on Friday and did not have a headache. I spent all day Saturday without a headache. Now, don't get me wrong my head hurt but it was a sore, hit your head on something kind of hurt. It was wonderful not to have the gorilla jumping, jackhammer headache that has been a constant with me since January.

Well that all went to shit pretty quick.

It started out slow but them came raging back quick as lightning. My old familiar friend headache. Yep, he showed back up on Sunday and has not left.

This really worries me. One sign/symptom of a shunt malfunction or blockage is a return of old symptoms. That combined with the blood in the ventricles does not help any.

Instead of wallowing in despair I took Wes's advice and called Dr. Dorai (my Neurosurgeon) to ask her about this and a few other questions.

#1- What was her opinion of the blood found in the ventricle?
She said that this was not something they expected to happen during surgery (only me right) when they took out the old shunt from the ventricle this caused trauma and that is why there was a bleed. She was however pleased with the results of the second CT scan that showed the bleed was not getting larger. To continue to monitor this, I am to have another CT scan done at home before my follow up visit with her on the 12th.

#2- I am having horrible pain still in my upper abdomen, like before just on the other side.
She really did not have a good answer for this one and to be honest its the only thing she has never really had a straight forward solution/answer for. She feels that it is the tube loose in the abdomen trying to find a place to "rest". Hmmm not what I wanted to hear but I will take the "lets give it time" answer for now.

#3 and most important- The headaches were gone for 2 1/2 days, now they are back.

This is why I love Dr. Dorai. She did not mince words, did not sugar coat it, did not brush it off. Basically, the blood in the ventricles may have caused the shunt to become blocked, I may need another revision aka...surgery. Before jumping into surgical options she wants to see what the ventricles look like on the CT scan. I would also need to have another shunt patency test (this is the test I had where they inject dye into the shunt and watch to see if there is any flow) Mostly she is hoping the headache goes away.
But she is realistic. She is not going to leave me high and dry. She has a plan.

So...... The conversation with Dr. Dorai was not exactly what I wanted to hear, but in my mind I knew that was what she was going to say. Once these horrible headaches came back after being gone for over two days, I knew something was not right.


Since Sunday night Wes and I have been staying at the hotel. Poor guy, I know he is going bananas! Thank goodness we have a two room suite so that I can sleep in one room and he can have the TV roaring in the other. Like always he has been wonderful through all of this. I am sure at times I drive him crazy but when I get upset about this whole situation he is right there to hold my hand or give me a big hug and that lets me know it will be ok.

Today we called my Neurologist Dr. Williams to see what his thoughts on things were and if he wanted to see me before we left Baltimore. He wants to see me next week when I come back for my post-op appointment with Dr.Dorai. He is very concerned about the returning headaches and most likely will try to schedule some testing for next Wednesday also. He will be in contact with Dr. Dorai in the next few days so they can get a "game plan" together. I should hear from him by the end of this week with more information.

I have an amazing team of Doctors, no doubt, all of that has finally fallen into place.

The problem now, is that I keep falling into pieces.

All New Parts for Me!!!

All New Parts for me!!!

Surgery went well yesterday. Thank God.

The only snafu I ran into was my wedding ring and engagement ring. I started Thursday night trying to get those suckers off. I tried soap, lotion, ice water, Vaseline….you name it. By the time I got to registration and the pre-op holding area my knuckle was four times its normal size. EEKKK!

But have not fear as Mom was near. She new of this trick with dental floss or string to get them off. Problem was, no one could seem to find those items. We and the are discussing this as an Orthopedic Doctor happens to hear this conversation and says “Oh yeah, I can do that with my mask string”

LOL..I swear there was an audience of at least nine nurses and four Doctors watching here get those blasted rings off my finger. The way she did this was taking the mask string and threading it under the ring, wrapping one end and then wrapping the other end over and over the skin. All the while doing this you pull and twist on both ends of the string. This action forces the swollen skin down while also raking the ring across your finger and finally off. Now, it hurt like hell, but I did not want them to have to cut my beautiful rings off.

After all that excitement it was time for surgery. Off I went.

The next thing I know…I am in recovery. Naturally the first thing I did was reach for the top of my head (uhmmm we will discuss the horrid hair later) Then I see Wes. Yeah!!!

He tells me what they did..in a nutshell here we go.

The general surgeon was able to do the distal/abdominal part of the surgery laproscoptically. He did find a mess of scar tissue and adhesions but more importantly he found that the tube was blocked, major blocked. So all the tubing was replaced by new and they were able to find somewhere to place the tube without having to go into the chest cavity.

Dr. Dorai’s part of the surgery was the actual shunt in my head/brain. What she found was that I had a major blockage. There was very little if anything coming out of that shunt. So she replaced the whole shunt system. From the catheter, valves shunt that goes into the ventricle to the tubing that runs from the brain, down my neck and under my collar bone.

Basically it was out with the old (well it was not really old, it was just placed in March) and in with the new.

I don’t remember a lot about being in recovery and that’s probably a good thing.

The only concerning thing going on right now is that the CT scan that I had at 2:30 am, yes you read that right 2:30 am, showed some bleeding in the ventricle where the shunt is placed. Dr. Dorai’s PA is the one who informed us about this. The other Neurosurgeon, that is on call this weekend) will be coming by to check on me and discuss this later today. I asked the PA what they would do about the bleeding, and all she would really say is that she had to talk the other Doctor but normally if the bleed is not to large they will just let it heal on there own.

Pain, Discomfort, Sore, Ache, Bruised, Relived, Anxious….those are just some of the words I would use to describe how I feel right about now. Basically I feel like a Tractor ran over my neck and head. So for now I am going to let them pump me with IV pain relief and close my eyes.