MIA...

I need to take some time away. This week is going to be hectic and to top it off I just really feel like a lousy friend. I feel like a life sucker. I feel that I am sucking away all the happiness from everyone around me. I am taking more than I am giving in friendship now. I am taking more than I have to even give out. After the kids I have nothing else to give.

The arrival of the Tooth Fairy....

Monday morning I woke up to Linds getting right in my face and screaming, "THE TOOTH FAIRY CAME!!!! SHE LEFT ME MONEY!!!!" I asked, "How Much?" She said, "I don't know I left it in the pillow". I told her to go and look.

As I climbed out of bed and attempted to pee in privacy Hann ah came running into the bathroom. "Mommy! Mommy! I am no longer afraid of the Tooth Fairy....I SAW HER!!!!" Right about now I nearly crapped my pants. I know I had to have the deer in headlights look. I thought to myself that I could find SOME reason to say I was in their bathroom.
Me: YOU DID???
Hannah: Yes!
Me: What did she look like?
Hannah: She is pink and sparkly and flies!!!!
Me: * insert deep sigh of relief *
Hannah: Mommy she is so beautiful.
Me: thinking to myself, This Tooth Fairy thing sucks more than Santa Claus.

Linds comes running into the bathroom as I am washing my hands. I have a HAMILTON!!! Mommy a HAMILTON!!!! Woohoo!!!!

Here are a few pictures

Here is the tooth fairy pillow that I had to throw together at the last minute. Gabe has specific directions to tell me as soon as he has a loose tooth let me know so I can complete his.

To which the therapist can blame the DADDY!

Location: Family room Lower Level

People Involved: Dar ren, Linds ay, and the 3 others were watching TV.

Lind say walks up to Dar ren (who is pre occupied by his computer) and states, "Here Daddy. I lost a tooth!"

Dar ren looks at her and sees a string in her hand and starts screaming, "Did you pull out your tooth?"

Lind say: FREAKS THE HELL OUT FROM HER FATHER SCREAMING AT HER and starts screaming herself!

I am upstairs in the living room and I yell down, "What happened?"

Dar ren: Lindsay yanked out her tooth with a string!
Lind say: * SCREAMING *
Me: Come up here. By this point I have decided that she must have knocked her tooth out and now she is bleeding because she is screaming like someone is stabbing her. I meet then in the foyer.
Me: Did she get it all out?
Dar ren: Dunno
I note that she is not bleeding so that is good. I said, "Where is it?" Dar ren hands me the tooth. Lind say is screaming. Darren has a look of shear HORROR on his face. To difuse the situation I start excitedly yelling, "YOU LOST YOUR FIRST TOOTH!!! THE TOOTH FAIRY COMES TONIGHT!!! YEAH SWEETIE!!!! YOU LOST YOU FIRST TOOTH!!!!"

The screaming ceases and cheering from the Toothless wonder starts. Everyone is excited. The Daddy is looking pale. We go upstairs to check and make sure that the entire tooth is out. It appears so. :) I note that her tooth next to it is loose also.

Me: "Linds did you pull your tooth out with a string?"
Lindsa: No mommy! It was loose!
So we discuss how the tooth goes into the keepsake jar and that the tooth fairy will leave her money on her special pillow.

I go downstairs where the Father has migrated to.
Me: "What the hell is your problem? This was her FIRST TOOTH and all you can do is SCREAM at her like she did something wrong?!"
Him: "Well, I though that she pulled it out with a string?"
Me: "SO WHAT!!!! Who the HELL CARES HOW it came out. It is out!!! It was her FIRST TOOTH. BIG ASS MILESTONE and all YOU can do is YELL AT HER? Do you realize this is going to be the moment she remembers for the rest of her life. YOU YELLING AT HER!!! SHe went to YOU first. NOT ME!!! YOU and YOU YELLED AT HER! At least it was YOU that scarred her. Next time that one of the kids looses their first tooth. Do you think just maybe that you could NOT yell at them? Her therapist will love you for this one!"
Darren: "It just freaked me the hell out!!! It was like WHAT THE HELL???!!!!"

I swear the man reacts 1 of 2 ways. 1) he OVER reacts in a negative way or 2) he shuts down and nearly passes out.

So now we have a little girl. Missing 1 tooth, 1 loose and a son who is PISSED that his twin sister lost a tooth AND an almost 4 year old who is afraid to go to sleep because the tooth fairy might get her!

Never a DULL MOMENT in our House! LOL

After reading this entry to Dar ren I asked him if he wanted me to add anything in his defense. He replied..."No!" With a HUGE heavy sigh. Dar ren was completely aware that I would be blogging this as while it was happening I kept saying, "You reaction is SOOOOOOOO blogworthy!"

Quiz

Click HERE to take my quiz. I am going to be putting together an information sheet re: chiari for our local hospital to have. AFter Gabe's last trip to the ER where the Doc knew nothing I need to do something. I have to know that I can trust our ER if I should have to go there. Also, since I have pretty well bashed the crap care that we have received at the ER, I would like to send this info sheet along with my survey back to the hospital. So if you can PLEASE help me I would appreciate it.

Also, I was asked if I had a pic of Gabe's herniation. I was able to get one of his pre op MRI. I labeled it for you:
Where it says "Base of Skull" on the right hand side. Should be where his cerebellar tonsils end. In another frame of the MRI in the flow studies you can tell that Gabe has obstructed flow from time to time.

Scent....

Since Lynn tagged everyone who reads her blog. She wants us to tell her about a Scent and what memory it evokes....

My Scent would be gauze.

When ever I see gauze I can smell it. It reminds me of Gabe's first surgery. Gabe's Head was wrapped up in a turban. We called him our little SWAMI. To this day I still can smell gauze on Gabe's head. Here is a Picture of our little sawmi!

Recital Pictures

These are our professional recital pictures. We are very pleased with how they turned out. The group shot was a little cheesy looking, however after 3.5 hours there we will call it success. :)

Ga be Ballet

Ga be-Tap

Lin dsay- Ballet

Lind say-Tap

Han nah Pre-Ballet

Dear Gabe,

In years when you find this entry I want you to read it and know that while it is filled with sarcasm, I love you so much. You are such a brave young man. There is only 1 thing in the hospital or Drs office that makes you weak. It would not be the needles or shots or even surgery. Your kryptonite...TAPE! Child, I HAVE NEVER HEARD A CHILD WHO SCREAMS NOOOOOOOOOOO LIKE YOU SO WHEN THEY ARE REMOVING TAPE! One of these days you are going to learn that ripping it off more quickly makes the pain go away faster. You are such a goob. "Take it off slowly, gently....ooOOOOUUUUCCCCCHHHHH!!!!!" You do not even flinch when you get shots or an IV, but TAPE!

Sweetheart, have you not learned yet that even if a medicine tastes nasty I will hunt you down to take it. TWICE A DAY. You need to find a better place to hide. I KNOW that you pull the trundle bed out and pull it in behind you and that you hide there. Oh, btw if you are going to hide in the secret room off your playroom you need to learn to not turn on the light in either the playroom or the secret room. It is a dead give away. Yes people he is back on the Diamox. The pills that have to be crushed and added to a nasty syrup to make it the proper dosage for a child. Basically it tastes like chalk in aspartame. Or dog butt if you ask Ga be. I do not know HOW he knows it tastes like Dog butt and I do not want to know. LOL

I laugh at you when we are out and people asked you about your "boo-boo". Yesterday we were at a store and some lady asked you, "Were you one of the little monkeys jumping on the bed. You know the ones that fell off and bumped their heads. Did you need many stitches?" You loked at her, flashed her your dimple smile and said, "No ma'am. I had brain surgery." Just as non chalant had you said, "I would like a chocolate ice cream cone". She had a mortified look on her face and asked me if it was "The C word". I prompted you by saying, "Sweetie, tell her what you had done. What type of brain surgery." You were so cute, you again smiled your dimple smile and said, "Ma'am, I am too smart. My brain is too big for my head. My brain was squeezing out my formen magnent (foramen magnum). So my dr opened up my head, took out part of my skull and 1st vertebra. He opened the lining of my brain. It is called the dura. He added a graft, that is like a patch, to make the dura bigger. He separated my tonsils and put them back where they belonged. Did you know that you have tonsils in your brain? And he glued me shut. I don't have any stitches or staples. I have Chi ari Malf ormation." We then of course got the how old are you ect.

You were so cute in the hospital. One of the fellows during your neuro exam would ask you every morning what you wanted to be when you grew up. You replied, "I want to be a dr like Dr Fr im. I am going to find the cure for chi ari. I am going to be a soccer coach, daddy and a male ballet dancer." Every morning they would chuckle and finish their exam. The last day the fellow came in and asked you that question. You answered like you had every day prior. Then you said, "Are you asking me because you want me to say I want to be a dr just like you? I will if you want me to!" LOL Thursday we got to the Clinic early (imagine that) and we went to the cafeteria to get something to drink. You saw the fellow and gave him your dimple smile. He came over and you chatted a bit. We headed out for clinic and waited for a bit. When they called us back the fellow with his entourage of residents and medical students came in. He started the neuro exam and when he said, "Hey buddy what do you want to be when you grow up?" You smiled giggled and said, "When I grow up I want to be a dr JUST LIKE YOU! I am going to find the cure for chi ari. I am going to be a soccer coach, daddy and ballet dancer. Now will you stop asking me that?" Gramma had no clue what all that was about. I was laughing hysterically. The fellow was in stitches. He explained that he only asked you every day as part of your neuro exam to see how your brain was doing. You said, "OH I thought I was making you sad by saying I wanted to be a Dr just like Dr Fr im. Because you know. That is what I really want. To be a dr like him. I like wearing ties!".

You my dear little boy, I love.

XOXOXO
Mommy

Wednesday we arrived at surgery waiting at 7:10am. He told Gramma bye and gramma got all teary-eyed. By 7:11am Darren, Gabe and I were in our holding room. We met with the med students, residents, fellows and most attendings. The child like special Tracy will ALWAYS have a special place in my heart. She was awesome and I thank God for her being there that day. :) Gabe remembered her from the 900 (yes I know a SLIGHT exaggeration) times he has already been there. She got him a new Gabe. Please welcome Gabe the 4th to our family! He picked the scent to put in his mask (rootbeer) and all was good. He asked the Drs questions and was just his normal precious self. Gabe then climbed up on the chair in the room and asked us, "When is Lindsay going to be here?" Lindsay opted not to go the day of surgery. We told him that Lindsay was not up to coming and waiting all day long. He was crushed. The resident saw the look on his face and I said, my mom is in the waiting room can she come back. They said yes and Darren went to get her. He was SOOOO happy to have Gramma. The night before Gabe asked me if I was scared. I told him the truth that yes I was scared. HE asked why and I did leave out the stuff I did not think that he needed to hear. I told him, "Buddy, I am scared that you will hurt badly after surgery. And I am sad for when I have to stop and I can go no further with you to the OR." He asked me that night not to cry and I promised him that I would not. I have never cried in front of him.

So they tell us it is time (8:35am). So we start The Walk to the double red lines. We arrive at the double red lines and we give our hugs and kisses and told him that we would see him soon. My mom again got all teary eyed. Tracy, our sweet angel, told Gabe that she would stay with him until they put him under and he was very excited about that. They walked through those doors and they started to close. Gabe stopped and looked back and waved as the doors closed. My heart stopped beating. The dark thought of that could be the last time I saw him popped into my head and I squashed it as quickly as possible. But I did not cry. I wanted to. I wanted to scream, shout, curse and throw things....But I did not. Dammit....WHY GABE! WHY MY KID! Why can't it be someone else's kid. Someone who takes children for granted? WHY MINE! I quickly got my head out of my ass and we headed off to the waiting room.

9:10am Tracy comes and tells us that the attending anesthesiologist was held up in another room and that is what was the delay. She told us that Gabe was a riot and really had a knack for numbers. When the anesthesiology resident asked Gabe if he knew what surgery he was going to have, Gabe told him...."Yeah, I need a little work done on my head. You know, my brain is too big for my head and my brain is squeezing out the 'formen magnent' (foramen magnum) and they are going to make that area bigger. You know the Dr told me that this happened because I am so smart. You know...I AM smart!" They then had him doing adding and subtracting and had the room in stitches. Tracy told me that he was under and they were starting the IVs and arterial lines.

10am no call that surgery started. Darren heads down stairs.

10:10am mom and I decided to head down stairs. As we are heading to the elevators the anesthesiology resident came out of the OR. I asked him how Gabe was doing and he again told the story about Gabe waiting in the OR. HE was so impressed by his maturity, understanding of what was going on with him and his lack of fear while sitting in the OR for half an hour. Dr Black said that he got a coffee break and that they were positioning him on the table face down.

10:15am ate breakfast went outside. came inside went up to wait. I tried to read but I could not focus on the words. I played a few games of soduku. 12pm I am getting a little agitated. I had not heard anything and I am then starting to worry. Around this time they called to tell me that things were going well. I asked about how much longer and the nurse asked. I could hear Dr Frim tell them, "Tell her that I am opening the brain now." So not something that I needed to hear at that time. I nice 1.5 or 2 hours would have been just fine for me. :)

1:20ish I got word that they were closing and would be taking him to PICU in 30-45 minutes.

2PM Dr Frim was out and we talked about his surgery. It was "boring" and we were THRILLED to hear that. He explained that when he opened the skull his brain "jumped" out a bit and looked like a very happy healthy brain. He did say that when he opened the dura it was poorly attached to whatever structure it was suppose to be connected to and it popped off causing a pocket of CSF to form. So he put in a drain. :) Also that his cerebellar tonsils were pushed together and smooshed. He separated them and now all should be good. :)

2:15pm we arrived at the PICU. We told the nurses that we were there to see our Gabe and she said 5 minutes.

2:30pm I am now getting a bit irritated. I sent Darren to find out what the hell was going on and when we walked into the hall a few people had went into Gabe room and shut the door. He came back to tell me that.

2:45pm I am stressing. 5 minutes I was told and now it has been 30 minutes. I am very irritated. Very worried. Are they not able to get him stablized? Is he going to code and I am going to hear them call a code blue to his room? I am now nearly frantic. This was awful. The nasty dark thoughts that were coming into my head were horrible.

3pm I am now LIVID with worry and fear. I inform Darren to go out there NOW and tell them that I want permission to go into my sons room NOW and that I DO NOT CARE what they think. Darren was walking out of the room when the nurse came to get us. He was so grateful. LOL

3:02pm. We walk into Gabe's room. The first thing that we see are his "finger stumps" hanging over the arm board. It was too cute. He was on his back with his arms bent at the elbows and his hands in the air. It looked like a dog playing "dead". I went to him and spoke to him. He opened his eyes and was groggy but did talk to us. He said, "Hi Mommy! How am I suppose to eat with these on? I guess that I am going to have to use my 'finger stumps'!" He was feeling very little pain. Our nurse told us that the anesthesiologist was a huge advocate in pain management and did not want Gabe (who he had come to love) hurt post op so he gave him quite the healthy dose of morphine and that for the hour after he came to the room someone had to wake him every few minutes to remind him to breath. (Morphine depresses your respiration rate) She said that they could have given him Narcan but they did not want him to have all the meds pushed out of his system so they were just aggressive with keeping him breathing. (This was also NOT the nurse who told me 5 minutes)

4pm Mom and I go downstairs to get lunch/dinner and make a few calls. We were outside and I was talking to my sister on the phone and there was a guy who walked up and heard what I was saying and he said... "Ah! Dr Frim's patient! Was he the little boy hit by the car?" My mom went to explain that Gabe had chiari and the guy says, oh his scar will look like this, and turned around to show us his scar. We then discussed how out of 8 people in his family 6 have chiari and have been decompressed. 5 have had awesome results. He is the only one who developed PTC and currently has to have his shunt replaced as it is broken. We talked for a while and said that based on my and my mom's symptoms that we needed to get scanned since there are only 17 families with 3 generations of Chiari.

4:30pm We arrived back at Gabe's room. Dr Frim and Judy (ANP) were there. We again discussed the surgery, plan of action ect.

5PM Gabe is now asking to go to the playroom. I just don't think so buddy. He asked for dinner and we order him soup and teddy grahams and lemonade. 5:30 he eats dinner, asks for pain meds and is talking to us and watching TV.

6:17pm Gabe poses for a picture:


8pm. Gramma leaves. He is resting comfortably. 9pm he is again complaining that he is hungry. The nurse gives him a "box lunch". He ate 1/4 of the sandwich, 3/4 of the apple.

9:27pm Another Picture:


10pm. The vomiting began. Wow! the force that it came out of him. YIKES! Now when he vomits he screams. An ear piercing scream that shakes the bottom of your soul.

10pm- Thursday 7am. Vomiting, screaming, pain meds. Wash...Rinse.....Repeat... Around Thursday 6:30am I literally thought...OMG!!! what the HOLY HELL have I done to my child. I was warned that it would be like this, but I still was not prepared. They already had Gabe on Zofran for the vomiting/nausea but it was not completely getting the job done.

6/28 7:30am. The residents and Judy (ANP) arrive for rounds. Judy and I talk. She very compassionately reminds me that this is normal and that the goal for the day is pain management and to try and control the vomiting. She said she is starting pepcid IV and increasing Gabe's zofran for the nausea and vomiting. If he continued she would start reglan. Also we were moving to the regular unit :):):)

10:30am. Gabe's pain is breaking through every 2 hours. His order is for pain meds as needed every 3-4 hours. Our AWESOME nurses got the order switched to every 2. Gabe would vomit/dry heave....scream from pain....vomit some more.... It was very hard. I was counting down the hours until the next morning. The nurse came in and I told her what Judy said. She called and we started the reglan by noon. They also changed his morphine to delaudid to see if the morphine is causing increased nausea.

12:45pm Gabe has sediment in his urine. The nurse collects a urine specimen. 1pm Gabe has refused to eat or drink at all today. Constant vomiting will do that to you. He was resting comfortably and I decide to go ahead and give him a bed bath and lotion him down. After his bed bath we up the head of his bed up higher and he decided he wanted to go to the chair. We discontinued his catheter. Gabe just before catheter removed:>


1:30pmWe got him into the chair. We were informed that there were no beds available to move to. :(


2:30pm. Has peed twice :) which is always a concern when you take out the catheter. They removed his arterial line. 1 IV down, 2 to go. 4pm We ordered dinner. He ate in the chair then asked to go to bed as he was "REALLY REALLY REALLY hurting". The vomiting had ceased around 1pm.

7pm. Has not peed for a while. Feels like he needs to go. Pushing fluids. Dilaudid working well. He is comfortable. ***I must add...Gabe's pain was not in the incision. It was in the front of his head. His forehead. sometimes in the back but 99% in the forehead***

10pm. Still no pee. Nurse is starting to get concerned. Great everyone loves urinary retention.


Friday Midnight. I get ready for bed. Go down to the bathroom. Come back. Gabe had woke up and said he needed to pee. He is pushing so hard to pee. Can't go. Has increased pain. Not happy. Screaming from pain in his head and his belly. Gets pain meds. Nurse checks. abdomen slightly distended. Resident tells nurse to let him sleep and see if he will relax and pee in his sleep.

2am. I am pulled from my sleep by Gabe's shrill scream...."I AM GOING TO PUKE!" Puking commences. Pain increases. Head and lower abdominal pain. he is miserable. Pain meds given.

2am-4am Puking and pain. Long night. He is not sleeping for more than 5-8 minutes at a time. I am starting to panic that there is something really wrong with him. The nurse calls the resident who tell the nurse to give Gabe a bolus of saline (5oocc) over 30 minutes and then call him back if he has not peed. Labs ordered by neurosurgery for blood work. They also order a one time order of reglan IV. Tell me that his urine had glucose in it. You dont spill glucose into your urine until your blood sugar is greater than 300.

4am I am told that we will be moving to another room due to PICU being full. Not going to the unit. No beds. We will be going down to the CICU which has been closed due to low census.

4:45am Saline started. We are packing to move. He finally passes out from valium and dilaudid.

5:15am we move to CICU. they are going to use it as a step down. There are 12 beds on the unit. 4 private rooms and 8 open units. We are lucky enough to get a private room. THANK GOD! Saline done. Now we wait an hour to see if it works.

5:25am I cannot sleep. Gabe's heart rate is low (which is normal when he is out on narcotics and sleeping) alarm keeps sounding. Our nurse is still moving the other 4 patients that are moving to CICU. I just sit in the chair.

6am the nurse comes running in asking why I did not push the call light and have him reset the alarm. I told him it was not disturbing Gabe and it was no biggie. Resets alarm to alert at 50 bpm. said he would be back to check on Gabe in 30 minutes.

6:15am was the last time I looked at the clock. I dozed off.

6:30am Nurse back. No pee. Unable to pee. Crying from pain and attempting to pee. Time to straight cath him. Got back almost 800 cc of urine. He looked 9 months pregnant. Urinary retention is a side effect of Dilaudid. We will discuss with neurosurg when they come in for rounds.

7am I doze off and neurosurgery arrives at 7:10am. We discuss the plan for the day. Amanda (ANP) removes Gabe's dressing for his drain and lets his head breath. We decided that we will deal with the urinary retention and leave him on the dilauded. Gabe vomits again. Amanda tells me that this is normal and that it could last up to 5 days. She got the look. LOL she laughs and gives me a hug and says it will get better. I dozed off at 745am and nursing was there at 8am. Dozed back off at 8:45am Dr Frim and Amanda back at 9am. We discussed his headaches and we decided it is from low pressure. The drain is draining lots of CSF. Time to take out the drain since there is very little blood in the CSF. Just enough to give it a yellow hue. Amanda said she will be back later.

9:35am Sleeping Boy


1045am Gabe wakes up screaming about his head. Dilauded given.

11:30am we have visitors. Thank you Pam and your sister for visiting!

12n Amanda back to remove the drain. Gabe will not turn to the left becasue of pain and we need him to, to remove the drain. He is screaming from pain. Remove the drain, apply a pressure dressing to hopefully prevent a leak.

12n-2pm he visits with our friends, eats and sits in the chair. Urinates a bit. :) Gets pain meds.

2pm in bed, sleeping. OUT COLD!!! very hard to rouse nurse getting a little concerned that something could be going on.

6pm...Kid you are getting woke up so your LOC can be assessed. We order dinner. He refuses to eat. 6:35pm

10pm off to sleep for the night. Saturday woke about every 4 for pain. given tylenol first.

8am wakes up. Wants to use potty. Up to chair. STARVING. Order breakfast. He eats everything.

11am wants back to bed. Goes back to bed. Sleeps

2pm wants lunch

3pm vomits lunch rests until his sisters and gramma come at 8:15pm.

10pm in bed sleeping... Sunday wakes every 4 for tylenol. Getting motrin every 8 round the clock.

9am gets up to use potty into chair. wants to wear real jammies not the hospital issued ones. I put them on. Neursurg comes in. Surprised that he is up in the chair and eating so well. I asked about going home. 10:30am I am getting my car out of the parking garage. :)

10:40am Gabe in car.... Home 1:15pm... :):):)

His Dressing:


We still do not know the cause of his glucose in his urine. His blood sugar was only 145 so not high enough to warrant concern. I will be discussing with my ped and have a follow up urine done.

Fine tooth comb....

I have gone through my blog and removed any and all information about the kids and their health issues. I will be moving it elsewhere so if you want the link email me :)