With a heavy heart...

I am just so sad. My heart is heavy and I cannot believe that someone whom I loved so dearly could be so mean to my child. If you are going to be a brat to me, that is fine. But lay off my kid. I ask for VERY FEW considerations for my children. I ask that if during dance classes that they need to lie down on the mats out of the way an observe, that they are allowed. I also ask that they be able to drink fluids as needed to prevent dehydration due to their shunt. I warn teachers when there are bad brain days. I explain that the headaches are bad and that their brains are processing slowly. We have a person in our lives who is being quite mean about these things. I have explained that past few weeks that Wednesdays are hard days for Gabe. That I have to wait until his shunt is exhibiting that he has high pressure before I just reset him. Just because he was at the school does not mean that his shunt reset itself. The past 3 weeks it has. It is a pretty consistent trend that I need to, but just to randomly reset his shunt because he was exposed to magnets is not a prudent thing to do.

I am tired of fighting for the few things that I ask for my kids. I am sorry that it takes Gabe too long to drink his water sometimes. I am sorry that his pressure on his brain is so high that he gets easily distracted or that he is sometimes so to respond or react to your command. It is not okay to tell my child that he cannot get a drink of water during "warm ups" when he has already warmed up for 2 previous classes and he is miserable and trying to push through classes. It is not okay for you to make my child feel badly about his health because it is inconvenient to your schedule.

My heart is broken. You are going to school to be a health care professional. Try to be compassionate.

Living with an Invisible Illness

LIVING WITH AN "INVISIBLE ILLNESS"

by Mary Hastings

written May 2003

While from the outside I may seem normal,

It’s the part that you can’t see,

The constant pain and struggles within,

Are ever so apparent to me.

Although I may wear a smile,

Often times it's covering the tears,

Yet not tears because of sadness,

As it often may appear.

Don’t be too quick to judge though,

Because there is so much more than is known,

What may seem to look like one thing,

Just might turn to prove so wrong.

I may sometimes seem unfriendly,

Or too centered around self,

Because sometimes standing takes all I’ve got,

And there is just no energy left.

Sometimes my words may sound awkward,

My communication may not always convey,

My true inner thoughts and feelings,

Aren’t always expressed by what I say.

You may think that I’m not really listening,

Sometimes my face or speech may not show,

But I do hear every word you say,

I really want you to know.

The information doesn’t always process,

As quickly and as clear,

And sometimes it takes me longer,

To interpret what I hear.

I possibly miss many opportunities,

To offer needed love or support,

Because sometimes it just takes to long,

For my thoughts and words to sort.

So if my actions seem inappropriate,

In the things I say or do,

I hope that you can understand,

That it is not because of you.

There are times I get discouraged,

When forced to accept my inability--

It’s hard to admit my limitations,

And it leaves me feeling so guilty.

Yet every moment is a reminder

As I look all around,

The effort it takes just to get through the day,

Just picking my feet up off the ground.

I am not looking to find pity,

I am just attempting to explain,

That the person that you may often see,

And the real me aren’t exactly the same.

You may not see the peace and joy,

When you look upon my face,

But I know that each day I live,

Is because of God’s amazing grace.

It is hard to always be cheerful,

When the pain is so very real,

And not everyone can comprehend,

The extend of how I feel.

I don’t see it as all bad though,

Although I’d much rather it not be so,

But I know that if I must endure,

God will strengthen me as I go.

It may seem as if I take no pride

In the way that I look or dress,

However, there might be much more going on,

Inside of the big mess.

My home may not be nice and neat,

My bed not always made,

The laundry may not all be done,

And often it makes me ashamed.

But I must only do what I am able,

Each day I have to choose,

What is most important right then,

And the tasks I am able to lose.

All the plans and dreams I once held,

Now don’t seem quite so clear,

Yet I feel a peace within,

As my Lord keeps drawing me near.

To have a chronic illness,

Or a disability that one must bear,

Somehow puts life into perspective,

And helps to make us more aware.

I realize now that each day I live,

Is a gift from God above,

It is hard not to lean on Him,

Or to look to His great love.

I now can fully understand,

On my own, there is nothing I can do,

It is only be faith and prayer,

That I can make it through.

It may seem an exaggeration,

No one can always feel so bad,

But only those who have walked in these shoes,

Can appreciate the battles that I have had.

I see so many people less fortunate than me,

Don’t have to look very far,

There are so many suffering all around,

It doesn’t matter who you are.

Circumstances and illnesses can hit unexpectedly,

And you can never really be prepared,

It may be difficult to understand,

Leaving you vulnerable and feeling scared.

I must constantly guard my thoughts and mind,

As Satan always tries to bring me down,

He wants me to feel hopeless and unworthy,

And turn my smile into a frown.

It is hard not to get depressed,

When I see the burden my family must bare,

The fact I cannot always meet their needs,

No one could be more aware.

There are times I feel like giving up,

When I look too far ahead,

But I know if my loved ones were given the choice,

They would just choose to have me here instead.

There are so many ups and downs,

New challenges each day,

I must strive to keep my eyes on God,

So that I be not led astray.

It would be so difficult to cope,

Without God, my hope would all be gone,

Because through submitting to Him in prayer,

Is when my weaknesses are made strong.

So when you see the way I look,

When my insecurities are in view,

Base who I am on what’s inside,

Not by the things that I can do.

The greatest lesson that I have ever learned,

Is the reason that I am here on earth,

Is not to live for self and gain,

For in these things are not my worth.

God has a purpose for my life,

Although the details I may not see,

He still has it under control,

And is continually watching over me.

Maybe one day I will be well,

And my health He will restore,

But if that is not in God’s will,

I will still praise Him ever more.

If this suffering can bring honor to Him,

I will gladly accept the call,

Because of His great love for me,

He suffered and gave His all.

I have to believe that what I am going through now,

Will somehow work together for good,

And one day it will be revealed,

And all things will be understood.

While I still worry about what you think,

More the example that I may show,

I am learning so much more each day,

And this has really helped me to grow.

Leaving...

Today I will finish packing, load up my girls stuff and drop them off at Auntie Becca's house. My Mom and Becca will be keeping the girls. It will be a busy week for the girls and my mom and becca. But they always work it out. The best part is that when I get home they always say, "I just don't know how you do it!" That is a pretty awesome thing to hear. :)

Emotionally Gabe has not been doing well. He is not happy that he needs this surgery. It has broken his spirit a wee bit. He is frustrated and just wants this to be over. The hardest part is the fact that he knows that he is going to have to do it again. We do not know how many more surgeries he will need until his brain has enough room to adequately grow. According to his CT from 1.5 weeks ago, the brain had expanded and had nearly filled the cranial vault capacity. While this is good news....the fact that we were only 6 weeks post the end of the distraction process was a bit disheartening. I know that God is in control of this, I just wish we had a more clear answer of how many more surgeries he will need. Pain wise, Gabe's pain is out of control. It is horrible. But he continues to push through. He is an amazing young man.

I am hanging in there. Last night was a rough night. The guilt of leaving the girls was ringing hard in my head. It makes me so sad to leave them. But I have to keep the stiff upper lip and just get through this and make is as easy for the girls as I can. Today will bring tears from Hannah and Fayeth. This is always the hardest part. Even though I am leaving them with Auntie Becca, Hannah is going to clingy to me and sob. I will pry her from me, kiss her and walk away with her crying. My heart breaks every time. Fayeth will cry because Hannah is crying. Lindsay will be strong and be the champion. She will console the girls with Aunt Becca.

I am getting exhausted from this journey. I always have the strength to move forward because of God, but the emotional aspect of this is just so exhausting. I am quite frustrated. 6 surgeries for craniosynostosis. Seriously, he is a single suture with no syndrome. This should not be where we are at. But I thank God that he has given us good doctors, a great hospital, great support staff at the hospital and a marvelous family that will help us through it.

I will try to post updates as often as I can.

95

A little sad and depression to write....but we were in the hospital 95 days last year. I understand for some that is not a large amount. But for MY family it is. For my small little people that is 3 months. Wow! That is enough to make one very sad. :(

Cranio Surgery #5

You can read Gabe's journey for his 5th cranio surgery here.

The journey continues

Cut, Copy and Pasted from Caringbridge..

WEDNESDAY, MARCH 31, 2010 6:24 AM, CDT

Lindsay had another rough night. (this means mommy did too) She has had a lot of vomiting throughout the night. We do not know if this is due to the meningitis or due to the increased pressure or due to both.

Around 4:30am I went to suction Lindsay's mouth and she felt warm to touch. From 4am-4:30am she went from 37.0-39.5 (98.6-103.1). Our nurse called neurosurgery and they think that Lindsay may have pneumonia. (Which now I remember them telling Darren that she vomited as they were putting her under for surgery) So, now we wait to see what happens. Hopefully the antibiotics are working....

I will update later-
Love to all-
Michelle

Wednesday March 30, 2010...

TUESDAY, MARCH 30, 2010 5:40 PM, CDT

It was a long night and the morning started off long. We were unable to break her cycle of pain. It seems by adding another anti nausea med we broke the cycle of vomiting however she is still extremely nauseated.

She went down for a CT of her head today. They wanted a baseline of what her ventricles look like now to monitor for hydrocephalus. The Neurosurgeon said that since we pulled her shunt this could develop. So we will continue to watch her for increased neuro symptoms.

Her pain is not well controlled. We are trying. After her CT they changed some meds. They changed her to a stronger pain med, started a strong anti-inflammatory and more GI meds. The first dose helped. Whether it helped or if the fact it knocked her out and let her sleep for a bit... but since then she has not received relief from the increased pain meds.

We moved to the 5th floor to a neurosurg bed this afternoon. Since then she has declined. She is having more symptoms of meningitis. Her neck is really stiff and she is not turning her neck and her head pain is horrid. We are in a dark room. She even went so far to tell her nurse that she wanted to die her pain was so bad. So we are waiting to see what neurosurg wants to do.

Yesterday we found out that Linds was growing Gram positive cocci in chain, clusters and pairs. Which infectious disease informed us could mean that she has more than 1 type of bacteria growing. This morning we were informed by the PICU that she was growing Staph Aureus. ID said that we would need to wait the full 72 hours before we could say that was the only thing that she was growing in her CSF. And yes that was what she was growing when we were here last.

I have had some questions about her appendix. Upon doing the ultrasound they found out that it was normal. The abdominal pain was inflammation to her peritoneal caviety. (peritonitis) The abdominal pain is better. The pain is only severe when her abdomen is palpated. So in that respect, that is doing better.

Infectious Disease was just here. We will have a game plan tomorrow after the cultures show sensitivities. We are looking at at least 14 days of antibiotics to treat the meningitis. Anything that we use to treat the meningitis will cover if she has anything in her abdomen (aka abcess). So now we take 1 day at a time.

Again, thank you all for the wonderful emails, messages on facebook and comments here. I have read them to Lindsay and she said: "Thank you so much for loving me!"

Love to all,
Michelle

One year ago...

Cut and Pasted from caringbridge:

MONDAY, MARCH 29, 2010 12:59 AM, CDT

We made it to Comer and are currently on the 6th floor. We saw Gen Peds, Peds Surgery and Neurosurgery. Everyone has assessed Lyns and she is NPO. Shunt X-rays are done, Shunt tap is done and bloodwork is done. NS has spoken with the attending on call, but he is not overly familiar with Lyns and the thought it would be best to touch base with Dr. Frim. I am very comfortable as one of my favorite residents is on call toni

ght and is

making sure that things happen. There have been some discussions on how it would be best to proceed with Lyns but we have to wait for lab work to return. When they tapped her shunt Lyns has no measureable pressure per Nassir...."Very low pressure". Nassir had to disconnect the manometer and use a syringe to pull some fluid out of her reservoir. He was able to pull fluid...but it never would flow willingly. I have been informed by neurosurgery that we will be moving to Comer 5 tomorrow. Neurosurgery is going to manage her case. I will say that I have received exceptional care on Comer 6. :) We have a kick butt awesome nurse. I know that I am forgetting something...But I am too tired to think straight. Love to all, Michelle

MONDAY, MARCH 29, 2010 4:03 AM, CDT

Good Morning All! At 3:20am Nassir woke me from my much ne

eded rest and my wonderful sweet dreams to inform me that Lindsay was being moved to the PICU. His exact words were more like, "Mrs. Hartman. Good morning. She has bacteria in her CSF." Nassir m

ust have known in the pit of his stomach that something was going on because when he did her shunt tap late last night he chose to shave a section of hair over her reservoir "So there is no question that this is not a contaminated specimen". So as I said, we are being moved to the PICU. When we arrive there they are going to sedate her and pull the abdominal drainage tubing and I assume that they will drain her CSF that way. Nassir said that the rest of the shunt will need to come out and he is not able to pull it in the PICU at bedside, but that we can deal with later in the AM. Right now we need to get her moved and get meds

(ANTIBIOTICS) started. They ideally want to give her Vanco and Rocephin. But if you remember back to February that made her "itch like a dog with fleas" and break out into a rash. So we are trying Ancef (we were on that at home and still itched) and Clindamycin (which she has reacted to the oral meds but we are going to give it a try for now). The PICU fellow has been informed what is going on and I find myself hoping that it is Dr. Dawson. I had issues with her in the past however t

hat was addressed and she is VERY smart. I know that Lindsay will be in good hands if Dr. Dawson is the fellow. (I know Janet.... You probably just fell off your chair.... Now Super D can laugh at you...LOL) Frim is on Holiday until the 12th. They did

speak to him by phone last night. Infectious disease has already been consulted re: meds and I believe that they have already been changed from the ones I wrote above. We are getting ready to move to the PICU. I will update later. Please pray for my little girl!!! Love, Michelle

MONDAY, MARCH 29, 2010 7:45 PM, CDT

It has been a very long day. Lyns was moved to the PICU by 5am. By 6am Nassir was here and ready to remove the shunt tubing from her abdomen and chest and c

onnect it to an external drain. This drained fluid out of her head and into a bad hanging on an IV pole. I even stayed and watched most of what they did. She was completely sedated and she tolerated the procedure well. Peds surgery came and reassessed her and wanted another ultrasound of her abdomen to make sure that she was not having appendicitis also. Lyns abdominal pain came from the infected CSF draining into her abdomen. Her entire peritoneal caviety is inflammed due to it. (aka peritonitis) This is why they h

ad to remove the abdominal drainage tubing asap this morning before any other inflammation could be done. On Lyns CT at our local hospital they thought she had a bad UTI because her bladder was inflamed (they could see this on the CT) Now we know it was due to her infected CSF. By 11am to

day Lyns was taken to the OR to have the rest of her shunt hardware/tubing removed. Unfortunately as I have stated in a previous entry Dr. Frim is on holiday. This did not bode well for Lyns as she had to have one of the other peds neurosurgeon operate on her. She was NOT happy. The Neurosurgeon did not want a drain placed to drain off her CSF since she had so much grown in her CSF and he wanted to make sure that they were able to get this infection straight away. While they were in the OR they placed a PICC line. Yes...we will be goi

ng home on IV antibiotics and NO we are not even talking a date yet. Lyns was out of surgery around 2 and back to the room. She is really uncomfortable and she is getting a boat load of morphine. The head pain and vomiting are crazy and she said her head is going to explode. So now we just hang tight and focus on getting Lyns healthy. Thanks for all the thoughts and prayers. We do appreciate them. Love to all, Michelle

It is so very amazing what a difference a year can make-March 29, 2010...

March 13, 2011

Frustration...

Before Craniosynostosis Surgery #5

February 6, 2011

6 weeks post op-March 23, 2011

Not overly impressed with the outcome so far. I am very concerned that we will, yet again, see another reconstruction in the more near future than first expected. Just in case I have not said it recently, I am NOT a fan of craniosynostosis

Sleeping Beauty

I just cannot help but share. In the actual newspaper her picture was 1/2 page. We we very excited for her. :) We are four days out from show day, well 3 if you consider that we are now on Wednesday. The kids are very excited.

Resolutions

1. Blog 3 times a week. I miss it and it makes me feel better.

2. Get back into exercising and make a life style change. I LOVE exercising and I need to take the time for myself. It teaches my children volumes about taking care of oneself.

3. Be more patience with the children. Self explanatory

4. Stop allowing stupid people to bother me so much. I cannot help it if a person wants to throw 1 pity party after another for themselves. They need mental health help and there is nothing that anyone can do for them until they do that for themselves.

5. Get into a better routine at home!

6. Post a photo on my photo blog 3 times a week. :)