Merry Christmas...Silly Kids....

This Screams Holiday Cheer! ;)

"Unfriended"

I (use) to have a friend who was high in the maintenance department. She has a great heart, would pretty much do anything for any one, but was very self centered, poor me and high on drama. Every little thing that would occur over the day was high in the drama field. But like I said, she has a really good heart and that alone was a reason why the drama momma aspects were easy to over look. In the past 3 years my tolerance for drama and BS have seriously become smaller and smaller. I have realized priorities and honestly tried to stop "stressing" over the small stuff. This friend has had many true traumas in her life that really caused me to wonder exactly HOW she could be so drama momma over small things. I started worrying about her mentally. I noticed that she was showing some very significant signs of being very depressed. Her moods were HIGH then they would go LOW and he smallest thing pushed her over the edge repeatedly. In October, after one of her high drama posts, I vented to a friend, then I received an email from another friend that she had just received the "There is nothing more I can do for your chronically ill child" speech. That was the straw that broke the camel's back. I made my facebook status below:

"Michelle W-H really wishes that people would take a few moments to stop, take a deep breath, look around, and then be grateful for the blessings in their life. Because honestly having ones health, a roof over ones head and their loves ones near by are the most important things in the world. Ask the people who do not have it, I am sure they would agree"

Was it at just my "friend", not completely. Did I hope that it rang true in her and helped her to see what a negative nellie she had become, I could always hope. However it was also to me and everyone. It was a reminder to take a moment and appreciate what you HAVE instead of worrying about what you don't have or keeping up the appearances of having a perfect life. Just live your life and be grateful.

However, my "friend" unfriended me. So, I did the mature thing and also deleted her off of my yahoo, ect. :) I let her know that I knew. An email was started between us and I put it out there that I was worried about her mental status. That I felt that she was battling depression. She chose to close the door on that conversation. This "friend" who did not like what I had to say, still stalks my blog and still stalks our caringbridge page, so I have chosen not to update there much.

However, to be honest, since I no longer have to receive her updates, it has been nice not to shake my head and wonder WTF is she thinking. It has been nice to cut her drama from around me. It has made me feel lighter not carrying around her emotional baggage. It has been so very nice.

Lindsay's Holiday Card

Lindsay was asked to draw a poster for the U of C Comer. Her drawing was selected to be placed on the front of the Comer Holiday Card. She is quite proud!

A blonde sort of day...

Lindsay is having a unique sort of day. A few funnies from this evening.

Gabe: Lindsay, do you know what Greek Goddess this is?

Lindsay: I think she is Aphrodisiac!

Mommy: Laughs hysterically

While carving pumpkins...

Lindsay to Hannah: I am going to pretend that I am a Neurosurgeon and I am removing my patients guts!

Gramma: Wrong type of surgeon Lindsay. That would be a BIG law suit!

I really do heart her!

Homeschooling....

...I LOVE IT!

heavy heart

Tonight my heart is heavy. I am not feeling sorry for myself or Lindsay. I am just tired. Today she was an amazing little person and had her shunt tapped. She was so good and never flinched when she had blood drawn. It was decided that she is in fact reacting to her tubing. The new tubing, the old tubing and the codman valve. UGH! So now we go onto polyurethane tubing which opens its own can of worms. But we are hoping that the polyurethane tubing, because it does not contain silastic will allow her not to reach to it. I am getting a bit fearful that we are never going to find anything that will allow her to be comfortably shunted.

Felt so good...

After a long break from blogging...It felt so good to blog and to just let it all out. I feel as though a load has been lifted off my chest. :)

I am preparing for a garage sale. The baby clothes that I have not given away are being sorted and ready to be sold. It is amazing to think that I am ready to get rid of everything that I once held so dear. The Moses basket, the pack and plays, high chairs, potty chairs, toys, clothes, strollers, car seats and so forth. I have to admit though, I have a compulsion about buying strollers and car seats. I have more of both than I have children. (Don't worry I still am using boosters-No lectures needed) I am so ready to get rid of all this stuff. Of course, that means that I will now get pregnant. Seriously I do not believe that God would do this to me at this point in time. It just might push my ass right over the edge!

In a week I will be packing up my truck and heading out to discover camp! YEAH! It will be another awesome year!

In Lindsay news... She is doing crappy and gave my mom a scare. We go Thursday to have a shunt tap. So...we will see.

What is a 5 letter bad word that begins with S?

S-H-U-N-T!

I am very frustrated and tired. I dislike shunts! I dislike that fact that 2 of my children will forever need a shunt to function in their life. I dislike the fact that, yet again, my daughter is reacting to a shunt tubing. We are getting down to the nitty gritty and I am becoming terrified of what will come if we cannot get a shunt for her that she is not allergic to. She HAS to be shunted. She cannot function without her shunt. She will loose vision also, if not shunted.

I have, as gracefully as possible, watched my child go through a revision, wound infection, shunt track infection, PICC line insertion, home IV antibiotics, PICC removal, too numerous allergic reaction and drug sensitivities to list, severe abdominal pain, allergic reaction to her shunt, meningitis, peritonitis, surgery to externalize her shunt, surgery to remove her shunt,picc line, procedures out the wazoo, surgery to replace her shunt, more doctors, more pain, more narcotics, another surgery to change out tubing, skin testing and now again, severe abdominal pain, shunt track pain, neck pain, light sensitivity, severe head pain....and now either allergic to her tubing or brewing an infection.

Which one is worse at this point in time? Meningitis would make her very sick, for all intents and purposes it could be fatal. However we would only be removing her shunt and then eventually replacing it. If she is allergic to it, mark off ANOTHER shunt tubing type and then we are down to 1 tubing.

Where do we go after that? No one knows. At what point is watching your 8 year old child suffer in pain and take narcotics that she should not even know the name of but call tell you her dosages and times...at what point does SHE stop taking the punches? I know that God has a reason for all of this, but seriously God....I am asking you to please show us the end of this path soon. One that has a marvelous outcome for her. Lindsay is honestly one of the most remarkable little girls that I have ever met. She continues to function even though her pain is over the top. Today she did beg to go to the hospital. And I would not give in. They cannot do anything for her there. I pacified her by emailing Frim. Telling him what is going on and our plan is to do a shunt tap and rule out/in if she has an infection.

I am a bit of a bitch. I am so fed up with people's crap whining about a little fleck of a problem. A problem that they make into a huge ass drama mountain. I just want to take my flip flop off and smack them upside their heads and scream...WAKE THE HELL UP!!!! YOUR CHILD IS HEALTHY!!!! SHUT THE HELL UP! But I do not. I listen to their crap, roll my eyes at things they whine about and go on. I am a firm believer that everyone's issues are big to them. Honestly, I am though I realize that this rant says otherwise....But people just need to STOP for 1 minute, reflect and take time to smell the roses. Appreciate what they HAVE instead of whining about what they DON'T have or what they WANT to have. Appreciate that little person in front of you....One day something can happen and who they are at this moment can be snatched away from you.

My vent is done.

Frustration

I have not blogged much here recently because so much has been going on and I have no clue where to start. I am so frustrated with everything.

February-

Shunt revision, allergic reaction to dermabond, wound infection, shunt track infection, hospital stay, PICC line, more allergic reactions to vanco, ceftriaxone, oxacillin, ancef, clindamycin, at home IV antibiotics, strep throat, dressing changes, another hospital stay.

March-

PICC line removed, worsening of head and belly pain, abd pain, local ER for "strep throat?", admitted for UTI to local hospital, transferred the next day to U of C Comer, shunt tap, blood work, xrays, transfer to PICU, sedated, shunt externalized at bedside, ultrasound, surgery to remove shunt, meningitis, peritonitis, CT Scan, lots of pain, transferred to neuro floor

April-

Lots of pain, nausea, vomiting, CSF leak, hallucinations, 6th cranial nerve palsy, my mom has a heart attack, surgery to replace shunt, allergic reaction to Shunt, allergist, steroids..... and so it goes

May-

A lot of the same

June-

Still more of the same

The same thing is that this is just Lindsay. Life is frustrating and I just need a brief break. :)

Expanding the family...

Last August Darren and I seriously began discussing expanding our family. We decided the pros and cons and then determined that we needed to make sure that we found just the perfect addition to our family. Last week I found out that if everything goes as planned, we will be adding to our family in mid to late September. :)

A dear friend of ours has an amazing and beautiful English Mastiff (Sirabi) and she was the reason Darren and I began our plans to expand our family. Last week she went into heat and thus the learning curve has begun. I never realized how much work went into breeding a Dog. Our dog growing up, Princess, was the town slut and she was knocked up every time she went into heat. (well maybe NOT every time but it sure as heck did seem like it) She had puppies with "King" and "Corky". Both of which thought that they were the town's Free Stud Service. :) So, now I get to watch the process unravel, and NO! I am not WATCHING THAT PROCESS occur!!! I am so excited. The kids and Darren are so very excited! :) Yeah Us!!!

Oh...and by the way....those of you who thought that I was saying that I was pregnant....Oh...I KNOW who you are (smart asses) HAHA. THAT is not going to happen. I finally realized HOW that occurs and we threw the turkey baster away! :)

A Mother's Lie

I stole this from a caringbridge page.

Mothers Lie

By Lori Borgman

Expectant Mothers waiting for a newborns arrival say they don't care what sex the baby is.

They just want to have ten fingers and ten toes.

Mothers lie.

Every mother wants so much more.

She wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin.

She wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.

She wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two).

Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions.

She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class.

Call it greed if you want, but a mother wants what a mother wants.

Some mothers get babies with something more.

Maybe you're one who got a baby with a condition you couldn't pronounce, a spine that didn't fuse, a missing chromosome or a palate that didn't close.

The doctor's words took your breath away.

It was just like the time at recess in the fourth grade when you didn't see the kick ball coming, and it knocked the wind right out of you.

Some of you left the hospital with a healthy bundle, then, months, even years later, took him in for a routine visit, or scheduled him for a checkup, and crashed head first into a brick wall as you bore the brunt of devastating news.

It didn't seem possible.

That didn't run in your family.

Could this really be happening in your lifetime?

There's no such thing as a perfect body.

Everybody will bear something at some time or another.

Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, therapy or surgery.

Mothers of children with disabilities live the limitations with them.

Frankly, I don't know how you do it.

Sometimes you mothers scare me.

How you lift that kid in and out of the wheelchair twenty times a day.

How you monitor tests, track medications, and serve as the gatekeeper to a hundred specialists yammering in your ear.

I wonder how you endure the clichés and the platitudes, the well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike.

I even wonder how you endure schmaltzy columns like this one-saluting you, painting you as hero and saint, when you know you're ordinary.

You snap, you bark, you bite.

You didn't volunteer for this, you didn't jump up and down in the motherhood line yelling,

"Choose me, God. Choose me! I've got what it takes."

You're a woman who doesn't have time to step back and put things in perspective, so let me do it for you.

From where I sit, you're way ahead of the pack.

You've developed the strength of the draft horse while holding onto the delicacy of a daffodil.

You have a heart that melts like chocolate in a glove box in July, counter-balanced against the stubbornness of an Ozark mule.

You are the mother, advocate and protector of a child with a disability.

You're a neighbor, a friend, a woman I pass at church and my sister-in-law.

You're a wonder.

Happy 5th Birthday

My Sweet baby,

I cannot believe that you are 5. I am not sure where the time has gone. You are such a cute little thing and you have such a mind of your own. You are battling the being a baby and being a big girl. You still want to be THE baby, except when it suits you to be a big girl. You are such a happy little person and you like everyone to be happy around you.

...You love dresses... You ask for them ALL the time. You wear them in the winter and love your summer dresses.

...You despise writing... You still cannot/will not write your name. I believe that you can, but getting you to do it is something else.

...You act as if you cannot identify your numbers, but when I forget "frozen pizza" on the grocery list you sure did quickly point it out. :)

...You tell stories... Like telling Aunt Jane and Karley that Daddy throws Gabe down the stairs and broke his head/arm/leg...whatever body part suits you that day. You also like to tell stories about your travels with Aunt Jane to England and India and how you shopped for ballgowns and danced with Princes and rode on elephants. I think I particularly like the one when you told me that you had your nipple pierced.

...You have your siblings so wrapped around your little finger you do not have to do anything! They baby you and you know how to play it up.

The other day, Lindsay and I were sitting on the bed with the laptop looking at pics of flowers. I was trying to decide if I was going to try my hand at begonia's this year. You have been having a bit of an issue with wearing clothing/panties lately and you were running around the house as "streaking Bare". I told Lindsay, "See this is a Begonia." You stopped running and came back to my doorway. You placed your hands on your little hips and said to me, "Oh Silly Mommy, it is a BA-GINA not a BA-GONIA!!" Of course I could not let this go and I informed you that it was a VA-gina not a BA-gina and that we were actually looking at FLOWERS. You said, "Oh silly mommy, I can call it whatever I want. It is MY bagina!!!" Then you ran off. A few seconds later you were back at my door and you said (as serious as could be) "And technically mommy it is called a LA-BIA it protects my BA-GINA!" How can you argue with that.

I now have to carry a pair of your panties in my car. One day when we were trying to leave for Chicago I went to fasten you in your carseat and I lifted your skirt to fasten the bottom belts and WHOA!!! Holy Moly!!! I was greeted by you pantiless bottom. Had the kids fasten you in, then we would have been in Chicago and you would have had no panties on. *yikes* You informed me that "Panties are optional". Ummm...not when you are wearing a skirt little miss. We have not instituted PANTY CHECK on our way out the door.

You are truly the perfect ending to our family. You complete us and make us laugh the entire time.

The First time I held you

Your are 5!

The past 3 weeks have been quite the ride. When we left on that Saturday night I never in my right mind thought that we would have the journey that we had.

Tuesday March 23rd

I went to the U of C to speak to a resident panel re: family centered care. It was very powerful and an awesome experience to speak to residents and hopefully impact how they interact and deal with families. I visited some friends and went to pick the kids up at Mom and Pops house. I noted at that time that Lindsay had some red streaking on her chest but I thought I would give it time and see if she had bumped her chest.

We came home and I made dinner. The red streaking did not go away and I noted it in 2 other places.

Back of head and neck

Back of head (redness is located over her hardware)

Her Chest

I sent the pics to Frim. We emailed and decided that she needed to be seen Thursday 3/25.

Thursday March 25th

We headed to Clinic. It was decided by Dr. Frim that she was reacting to her shunt track. In our previous (non-blogged) hospital stay, she had numerous reactions to other meds so we did not question this. Dr. Frim was getting ready to go away for Passover and he said he would make arrangements for Lindsay to see Immunology to get tested for what she is reacting to. Lindsay's chief complaints: Headache, neck pain, light sensitivity, burning along her shunt and feeling like her hardware (valves) were going to push out of the back of her head.

Friday March 26th

We had rehearsals for Cinderella (4/3 & 4/8). Lindsay danced but complained of feeling icky.

Saturday March 27th

Lindsay woke up with severe abdominal pain. Curled up on floor. I made her get ready for dance and go and rehearse. We went to rehearsal and she was complaining of belly pain and headache. During her rehearsal she started crying and had to leave rehearsal and lie down. THIS is not like Lindsay and immediately perked me up. By the time we got home she was running a low grade fever.

As the night progressed she worsened. Nausea started and she was not complaining of severe pain at her belly button and right lower quadrant. That was starting to sound like appendicitis and with a shunt you have to be careful especially if the shunt drains to the abdomen. If the appendix ruptures it will introduce bacteria into her CSF and she would get meningitis. However, the nausea, headache, abdominal pain and low grade fever sounded like the last time she had strep. Since I could not say that it was NOT appendicitis I took her to our local ER.

The became worried that it was her appendix. However the CT was not conclusive and on the CT it showed that her bladder was largely inflamed. The ER dr told me that that only happened with severe bladder infections. We were admitted after the Ped on call and I argued with the ER attending. We felt she could go home.

Sunday March 28th

5am and we FINALLY get a room at the hospital. The ped had told the nurse that she would be in early afternoon and she would discharge us to home. :) This made me happy as we were having my mom's rescheduled Birthday Party. Due to the nausea and not being able to rule out the hot appendix Lindsay was put on clear liquids. The nausea really got bad and Lindsay was acting ok, as long as she did not move. If she moved the abd pain was horrible.

The Ped came in and was not comfortable discharging us. She wanted a surgeon to come in and tell her that it was NOT a hot appendix. So she called in a favor. He walked in, took her history, did his assessment and informed us he did not think that it was appendicitis. He said he felt that there was SOMETHING going on since her lab work had a "Left shift" (meaning that there was an increase in immature WBC cells which can indicate a bacterial infection). Then he told us that he would not operate on her that we would have to be sent out. I agreed with him and explained that since she has a history of anaphylaxis and they did not have a PICU that I would prefer to go to U of C if she needed surgery. The surgeon said that that was a good thing because he was recommending our transfer to Comer. He proceeded to tell us that her shunt tubing ended near the tip of the appendix and that was dangerous because if the appendix burst they were going to have to get that shunt tubing out of her ASAP. OYE!

He called the ped on call and then she called us and told us that she was being transfered. I asked about taking her myself and they said that it was too risky that she was at risk for a ruptured appendix. She got General Pediatrics (Gen Peds) to admit us so we did not have to go through the ER. So, we waited for an ambulance to come and transport us to Comer.

6:30pm the Ambulance arrived and by 7pm we were on the road to Comer and we arrive at Comer at 8:30. By 9pm we were settled in our room on the 6th floor. Gen Peds was there when we arrived and they were reviewing her paper work and told me that there was NO WAY that based on her paperwork did she have appendicitis. However, when they did her assessment, they did not like the way that her abdomen was presenting. They paged Peds Surgery and Peds Neurosurgery.

Since we had a friend in the hospital I already knew who was the resident. It was our favorite resident, Nassir. Looking back now...It was totally God's doing that Nassir was on call. Because had ANY of the other 2nd yr residents been on call I would have NOT allowed them to do any of the following because I do not trust them!

Gen Surgery came up and was just getting ready to start their history when Nassir walked in. Lindsay was visiting with out friend and immediately perked up for Nassir. Seriously, Nassir walks on water in Lindsay's eyes. However I told Nassir that I was tired of this in and out of the hospital crap and they needed to figure out what the heck was going on.

Nassir did the history and Christian (Gen Surg) took notes. Nassir informed me that if Gen Surgery had to open her abd at all that the shunt tubing in her abdomen had to be externalized. I told him about the increase in the headaches, light sensitivity and neck pain. He said he wanted to speak to the Attending. However while he was speaking with the attending he wanted a shunt series (xrays). We went for the xrays at 11pm, returned to our room at 11:30pm. Nassir spoke with the attending and came back to talk to me. Nassir spoke with the attending on call and he wanted Nassir to call Frim while he was still available. He wanted to know how I felt about externalizing Lindsay's shunt. I was confused. I had no clue why all of a sudden they were saying the tubing in her abdomen needed to come out. I asked Nassir if we could instead tap her shunt and go from there. Gen surgery ordered labs and Nassir came back and got prepared to do a shunt tap. Nassir must have had some clue that something big was going on because she shaved a spot of Lindsay's hair over her reservoir so that they could not say that the specimen (CSF) was contaminated. Lindsay was not happy. However Nassir did the tap and when the CSF came out it was green tinged and had red and brown flecks in it. In my mind it never registered that there was something wrong. I mean I KNOW there was...but my brain snuck off for the State of Denial. Nassir had told me that I would be moving to 5th floor in the AM, so I only unpacked the neccesities. By 12:30am we had blood work drawn, xrays done and shunt tap done. Nassir took the CSF and blood to the lab himself.

Monday March 29th

By 1am I had changed into my jammies and made the "bed". The last time I looked at the clock it was 1:15am.

3:15am....

"Mrs. Hart...., Mrs. Hart......"

I open my eyes...

"Good morning! We have to move Lindsay to the PICU. You have a very sick little girl..."

Rub my eyes and think...What the heck did he just say? Why am I dreaming of Nassir and being at Comer...The reality hits me....I AM at Comer.

"What did you say?"

"You have a very sick little girl. She needs to go to the PICU to have her shunt externalized"

Rubs my eyes, sits up, puts my glasses on. "What did you say?"

"Lindsay is a very sick little girl. She has gram positive cocci growing in her CSF. We need to take her to the PICU and externalize her shunt. In the AM I will speak with Dr. Y and ask him if/when we will need to remove the rest of her shunt."

"So, Can this be causing her abd pain?"

"Yes Mrs. Hart.... it is the CAUSE of her abd pain."

"When will be go to the PICU?"

"As soon as ID (infectious disease), Gen Peds, Gen Surgery and Neurosurg can get on the same page and get meds ordered for Lindsay"

By this time my brain was reeling. I knew that there would be no more sleep for me. I got up, put the bed back together, went and got dressed and brushed my teeth. It was 3:30am by then and I was feeling pretty alone. When we left Saturday I never thought that we would be dealing with this. I could not even wrap my head around the fact that she had meningitis. At this point in time I was still calling it, "Bacteria in her CSF". Then I knew I had to make phone calls. I called my mom and told her what was going on. I remember saying to her, "Mom, they keep telling me that she is a really sick little girl". I then called Darren. I called my mom first, incase I could not get a hold of Darren. This way my mom could tell him what was going on since they were coming to Chicago in the AM to bring me a car.

I went back to sit with Lindsay. She was wide awake by this time because everyone kept coming in and I was discussing antibiotic options with ID due to her gazillion allergies. At one point in time I remember just standing in her room and it felt like *I* was on pause and the world was on fast forward around me. At times it was hard to catch my breath. I knew that I could call Tommi (who was on Comer 5 with her daughter) but I did not want to impose on them....and I think that as long as I was alone I did not have to accept that what was going on was real.

By 5am it was time to to head to the PICU. They were ready for her and everything became very real very fast. When we got to PICU the room was full of people. We went through her history and it was then time to sedate her and remove her shunt tubing from her abdomen. I sat in the chair in her room, back in a corner. I could see everything that Nassir was doing. I was asked if I was going to be okay to stay and in a calm way that I have never felt before I told them yes. I watched Nassir open an incision at her clavical (collar bone) and find her shunt tubing and remove it from her body.. A few times she moaned while sedated but nothing horrible. It was rather savage to be doing at bedside. Had it not been my daughter I would have been even up closer checking all this out, but I sat and text messaged Tommi/Karen, messaged Darren a list of things to bring to the hospital. I remember thinking that if they made me leave the room I would have lost it. Soon they were done and her shunt tubing was lying across her chest and connected to an EVD (external drain). She was draining a LOT of CSF.

Gen Surg had asked for an abdominal ultrasound just to make sure that her appendix was not also inflamed. Her appendix looked good. It was smaller than on the CT-probably from removing the shunt tubing and the infected CSF no longer draining into her abd. I ran upstairs to ask Tommi is she wanted to go to ABP for coffee when I got a phone call that they were taking her to the OR. Now, I had not told her she was having surgery yet. I busted ass to get down to her before they told her. She had not yet realized that Frim was gone and that was ok. I was not going to tell her.

11am I informed Lindsay that because of the germs in her CSF that they have to take out all her shunt. That her shunt is making her sick. (She was still pretty loopy from the precedex) She took 1 look at me and completely woke up and said, "I am not having surgery today!!! Dr. Frim is not here!!!" So we had to have a quick discussion that it was not an option to wait 2 weeks for Dr. Frim to come back. Both of us were afraid. Dr. Y has never had to operate on my kids. It was nerve wracking. We went to preop holding and I met Dr. Y. The best way for me to describe him is as an odd little man. He tells me, "In children with PTC, when you remove their shunt they can have a shift in CSF and they can develop hydrocephalus. This causes the ventricals in the brain to get large. This compresses the brain against the skull. She will developed even high ICP and could go into a coma and die." At this point in time, everything was so surreal that all I could do was manage a nervous giggle and walk away. He then came up to me and started questioning me on what brought me to the U of C. He was quite interested in Gabe's craniosynostosis. The NPs decided that while Lindsay was in the OR they would place a PICC line. It came time for Lindsay to go to the OR. I walked her to the red line. There were tears (from her) and then I stood at the line as they took her away.

Tommi came to sit with me. I went to the lobby. I needed to get out of that horrible waiting room. We found the admissions clerk and she got our papers signed. Then we went back to the OR waiting room. Finally we were told that she was going back to the PICU. The PICC line took longer and more attempts than anticipated. Around that same time, my mom, the kids and Darren arrived. It was nice to see them and get settled.

After getting her settled in the PICU we were able to see her. Lindsay was in isolation so we had to get into gloves and gowns. Gabe and Hannah got really hot really quickly, but they still enjoyed seeing Lindsay. As well as Lindsay was so happy to see her "Honey and Bubby".

Honey & Bubby

As the evening progressed Lindsay started to decline. Other Veteran Moms had warned me that it would get worse before it got better. And they were right. By 10pm, all lights were off but the TV was on low. She was asking for narcotics every 90 minutes and could only have them every 3 hours. Our wonderful nurse help keep Lindsay as comfortable as we could.

Tuesday March 30th

The morning started with a trip to CT for a baseline CT Scan. You now just incase she developed Hydrocephalus and went into a coma and died. (Rolls eyes). It is quite a production to take a PICU patient anywhere. They have to take a "bag" with code meds, all the monitors, a nurse and a partridge in a pear tree ;) Well...that is what it seemed like. As we were heading out to get her CT we realized just then how much the light was bothering Lindsay. The blanket went over her head. She was very uncomfortable because she could not have narcotics yet, then moving her around, the pressure building in her head, she was very weepy. She kept asking, "Why are you torturing me?"

When we arrived at CT, it is very bright down there and she about came off the table. The CT Tech was not the most patient thing and Lindsay was less than happy about having to move. The 2 drs that I have had issues with in the past were in sedation and immediately jumped in to help get Lindsay as comfortable as possible. The CT was very quick and we got to move her back to her bed again. She was quite happy when we got back to the room because it was quiet but she was so miserable and hurt so badly. I was not as happy. I very firmly told my wonderful nurse that I wanted to speak to someone about pain control ASAP and if I did not see someone within the next 5 minutes that I was going to have the director of the PICU and a patient advocate in my room. Lindsay had been itching all night long. (Come to find out she is allergic to morphine)

The Neurosurg NP changed orders in the computer and came to see me 30 minutes later. I was okay as they changed the orders. We discussed properly managing Lindsay's pain. We were being moved to the neuroscience floor as soon as they got a bed.

By 2pm we were going to Comer 5. We got settled and that is when all hell broke loose for Lindsay. Until that time she had vomited but it had been minimal. Now it was not. She was vomiting a LOT and the pain was crazy bad. ALL lights and noises were to be turned off. The Shades and blinds were pulled, the room curtain was pulled, the door to the room was closed, the IV pumps were turned away from her (and they were still too bright). She was receiving some sort of med every hour. Nothing was controlling the vomiting and nothing was controlling the pain. She was sobbing. It was rough.

Wednesday March 31st

As bad as Tuesday was, Wednesday was worse. ALL night long Lindsay vomited or dry heaved. Our poor nurse worked so hard. It was discussed moving her back to the PICU since she needed so much care. I honestly think at that point in time I would have been okay with that. All night long she begged and begged for more pain meds. No one was comfortable increasing her meds much more or changing anything since she has such a large list of allergies and sensitivities. Then we also have this little issue with anaphylaxis.

By 4:30am Lindsay was running a 103.1 temp. Nursing paged neurosurgery and labs and xrays were ordered. Lindsay had vomited twice while they were intubating her/was intubated. So they wanted to make sure that she had not aspirated and developed pneumonia.

6:45am Neurosurg made rounds and felt the need to call in Peds Surgery to assess the severity of the abd pain. The thought process was that she developed an abscess in her abdomen from the infected CSF.

12pm Ped Surgery came to assess her. They want more abd xrays ordered. Lindsay has done nothing but sleep. She will wake long enough to cry for pain meds then she sleeps. It is not a restful sleep. But she sleeps. We are still IN the DARK. VERY DARK. As DARK AS I CAN MAKE IT.

4pm We head to Xray. Lindsay is hysterical as we are making her ride in a wheelchair. It took forever to get the xrays and she had to stand for 1. She can barley stand she is so weak. It was horrible. She was so upset and in so much pain by the time we got back to the room.

5:30pm Infectious Disease came in. A resident from the Resident panel that I spoke with was there. We found out that she did NOT have MRSA, that she had MSSA. :) They opted to change her antibiotics to oxacillin. Lindsay is allergic to/sensitive to Oxacillin. So we discussed the options and ID and myself came up with a plan. It was a well written thought out plan and stated if XYZ happened to do this, ect. She would be pre medicated with IV benadryl before each dosage of Oxacillin.

Darren was able to come up for a few hours after work today. It was nice to have him there so I could rest. I also went back to the RMH for dinner.

Thursday April 1st

We are still in THE CAVE as I call it. She rarely even interacts with me. All she does is cry for pain meds. By now everyone is stumped. We do not know how to make her feel better. No one knows if she is miserable from the meningitis, the peritonitis or it is increased intracranial pressure. The meningitis and increased ICP had a lot of the same symptoms. Lindsay vomited, cried for meds and slept all day.

Our very wonderful Nurse Nichole evaluated the amount of narcotics that Lindsay was taking and she intervened with neurosurgery and asked for a PCA for her to control her pain. They gave her a PCA and as soon as they were able to get it up and running Lindsay was happier with the outcome. The meds did not take the pain away but it took a smidge of pain away. Lindsay described it as going from a 10 to a 9.99. But if it gave her ANY amount of comfort...I was for it.

around 7pm we noted that Lindsay had an internal CSF leak. It was large and growing.

Friday April 2nd

Today we got good news. The antibiotics are working and the infection is under control. However my favorite resident said the H word (Home) and I became a bit focused on that. So those of you who know me, that means that I crashed and burned at 1 point during the day. Lindsay vomited and it was enough to push both of us over the edge. I asked the nurse to page Neurosurgery. The CLS came in and was spending time with Lindsay when the NP came. We had a long talk and while the bacteria from the infection was under control the meninges, her abdomen and everything else needs to heal and that can take days more. She assured me that we were where we should be in re: to her recovery. I told the NP that Lindsay looked worse than she did before surgery and the NP said she knew that. So we changed her PCA to allow her more doses of the narcotic and changed some of her antinausea meds. The NP spoke with one of the hem/oc NPs and they tried Lindsay on the same combo of antinausea meds that they have kids who are on chemo on. There thought was perhaps it would help Lindsay.

Saturday April 3rd

We should have been in Michigan City preparing for our Outreach Program of Cinderella. Instead, Gabe and Hannah were at my moms and Fayeth was at my Aunt Jane's and I was in Comer with Lindsay. I week ago I took Lindsay to the ER for what I thought was most likely strep throat, but maybe appendicitis. Wow! Has this been a ride.

We are STILL in a dark and quiet room. The text messages on my phone push Lindsay over the edge pain wise. She is not talking much, she is in a ton of pain. It is hard to watch her like this. Today she has not vomited. This is a small victory.

Sunday April 4th

The Easter Bunny came today. He actually came TWICE!

Lindsay and the Easter Bunny

Lindsay was in good spirits this morning. When the nurse came in Lindsay was looking through her name badge and all the stuff she has attached to it. (Our nurses have their name badges attached to laynards) She kept asking Emily where the other picture was and Lindsay kept flipping through the badges.

At breakfast, she asked me... "Mommy were there 2 people here delivering my tray?" I replied, "No sis, there was only 1." She informed me, "No mommy, I saw 2." Emily came in right after that to give Lindsay meds. I informed Emily what was said and then a light bulb went off. She informed me of what Lindsay said. Emily assessed the eye issue and Lindsay was having double vision.

When the on call Neurosurgeon came in he again evaluated Lindsay and it was decided that she was exhibiting vertical double vision. After a lengthy eval we decided to watch and wait and perhaps an MRI or CT would be ordered as well as a visit from Neuro-OPthamology.

She allowed us to turn the TV on softly (no lights though). She only wanted to eat 1 piece of candy. I would have allowed her to eat the entire basket if she felt up to it. I went back to the RMH for dinner. Darren stayed with Lindsay. By the time I got back she needed the lights out and her head was killing her. However no vomiting today. This was almost 48 hours since she vomited. Her CSF leak gets larger.

Monday April 5th

Still complains of double vision, NP does not think that she has double vision. Vomiting is back and bad. Still has bad pain, the good news...her large CSF leak is gone. Not sure where...but it is NOT on the back of her head. Yeah??? She is sleeping about 24 hours a day waking long enough to push her button. The NPs are not happy with the way she looks.

Tuesday April 6th

1:00am Lindsay's left eye is not working. When she looks to the left it does not move. Nurse is paging neurosurg to let them know.

6am I wake up to, "Wow mommy! My room looks like Mario world." (She is hallucinating) Hannah was shaped like a grumpet, Fayeth a mushroom, we had palm trees and 6' talking bear in our room.

8am Spoke with Nassir. Lindsay will be seeing neuro-ophthalmology and having a CT scan.

9:15am I was informed that my mom was on her way to the hospital by ambulance. They think she had a heart attack.

1pm Neuro Ophthalmology came. She hasa 6th cranial nerve palsy. They will check her after her CT to see if she has papilledema.

1:45 CT of her head done

2pm back to room. Neuro Ophthalmology checked the optic nerve. No papilledema noted.

5pm Nassir informs me that Lindsay will be going to the OR tomorrow to have a lumbar drain placed to reduce the pressure in her head. This will hopefully help the 6th nerve palsy.

My mom had angioplasty and an angiogram. They cleared the 1 blockage and placed a stint. She is stable but guarded in the ICU.

Wednesday April 7th

It was decided that Lindsay also needs an MRI before they place the drain. She went to sedation around noon. They sedated her and she went to sleep. 5 minutes into her MRI Nassir calls me. Dr. Y decided that it is just too risky to put a drain in her. They will do an LP to check her pressure and check her CSF. I was mad. An LP only buys a short period of time.

LP was done and her pressure was 31 on the max dosage of IV diamox. (Dr. Y said it was 38, but I am going with what the NP said). MRI looked okay.

By the time we got back to the room I was about to strangle someone. The NP promised me that Frim was coming into the hospital on Thursday and that she would ensure that I would see him before he left.

Thursday April 8th

I am assured that Frim will see us before noon. Lindsay is back on the OR schedule for Friday to have a drain placed.

11:55am I see Frim. LONG TALK. Going to the OR Friday to have her shunt replaced.