Double Your Pleasure

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Pre-Ops, Post Ops, the Surgical Team, and Happy Anniversary

Aiden had pre ops this morning for his heart repair. Now, Friday when all this was set up, the information I got was to check in at the main hospital. So we went to the main hospital. Only, they didn't have Aiden's information. I knew I should have followed my instincts and went to Children's Hospital first. That would have saved me a mile walk. Carrying a nearly 3 year old.

So we get to Children's and have to walk by admit, because you HAVE to check in with security. Some volunteer has to give you a sticker to wear AFTER she checks the list to make sure you are expected. Then back to admit to fill out the standard form (which after I don't know how many times, I know the form by heart and should just carry xerox copies), hand it to another volunteer who takes it to a room I was just sitting in front of, go talk to the woman, copies of insurance are verified and strap the temporary braclet on Aiden's leg. Then the same volunteer takes you up two stories and walks you to the pre op/surgical desk. There it is discovered that the other patient's files (who went up with us) isn't what the volunteer handed the new volunteer. (Confused yet? That is 3 different volunteers in less than 10 minutes.)

So, Aiden gets called back and gets weighed by the nurse we always see and she even remembers when his last cath was. Then we go into one of the pre-op exam rooms. There she measures Aiden and starts shoving paper work at me to sign. Chris asked if Dr. Heart Surgeon is in the vicinity because he would like to meet the man who is going to crack open Aiden's chest and play with his heart. I told Chris I really didn't need to meet the man; I didn't meet Dr. Pediatric Cardio-thoracic surgeon until the night before the A/V Canal repair and I was happy with that. But Chris insists on meeting him, so I hand him my phone with Dr. Heart Surgeon's number already programmed in and he calls. Once we are done with pre ops, we can go over to the office, located in the same building as Dr. Pediatric Cardiologist.

The Dr. Happy Drugs comes in and we play the 20 Questions game. Only, this one was like, "Ummm, you've been through this enough times. Do you have any questions?" Nope.

The pre op nurse comes back in and starts telling us about what to expect post op. First off, WTH does a pre op nurse know about post op? Secondly, I already know. All she did was manage to bring back a ton of visuals that I really didn't need or want resurfacing. If all Aiden has is a vent tube and one freaking chest tube, I'll be extactic enough to piss my pants and jump for joy. Seriously. (For more information, click here)

Then the EKG tech comes in and Aiden begins to suspect something is going on. He is so not going to co-operate. I sent Chris down for more Pediasure (which is in Aiden's cooler in the Jeep, parked in front of main hospital), since EKG tech is taking his sweet a$$ed time and Aiden is getting pissed. Aiden lets out a few blood curdling screams informing the EKG tech that he is not happy and I inform EKG tech that EKG will have to be done at a later time.

In walks the vampire. Aiden doesn't like the vampire, but he is fascinated with the turniquet. I hand her his arm with the only good vein in his body, and put Aiden in a wrestling hold that would make Hulk Hogan jealous. She gets the desired amount of blood, but must leave the turniquet for payment. Aiden is happy playing with the piece of rubber, so I don't make him throw it away.

We then have to wait in the waiting room for the xray tech. Chest xrays are needed for OHS. We walk into radiology and they are lowering the wall board. WTH?! "Well, he'll stand there for xrays right?" Ummm, I carried him the 20 feet from waiting room to radiology; if he could stand, don't you think he would have walked?

So, he's got to go on the table. Why not try the pig-o-static space capsule? Apparently that is too much work for them to drag out. They are going to regret this. I get strapped into the lead cover-alls and the second xray tech and I tag team Aiden who, by know, definately knows that something is going on. And he doesn't like it.

I swear he remembers heart surgery.

We then left the children's hospital and went over to Dr. Heart Surgeon's office. We get to the office and Chris shoves one of his business cards at me; yes, the same card that Dr. Pediatric Cardiologist's appointment maker tried giving me a few weeks ago. No, I still don't want it.

Dr. Secondary Heart Surgeon Dr. SHS - for future reference) came out from the back somewhere to retrieve us out of the waiting room and she informs us that Dr. Heart Surgeon (Dr. HS for future reference) is on his way. Dr. SHS and the Physicians Assistant (PA - for future reference) walk us to the conference room. Immediately, Dr. SHS says that Aiden has been through a lot, heart wise. And PA is asking questions about the other heart surgery.

Dr. HS walks in.

He is NOT what I expected.

He is a very quiet, humble man. He is an older gentleman from Japan. He is one of the 3 pediatric cardio-thoracic surgeons that Dr. Pastuzsko admires and thinks highly of. Though he did say that Dr. P was too kind. He listened and he took in the volumes of information that I had to share regarding Aiden's heart surgery. He was impressed that I knew every single date of every single procedure that Aiden has endured. (Granted, I have to give a lot of heart history and surgical information every single time we walk into a new doctors office LOL!)

Then it was time for the surgical team to examine Aiden....

This is where the history and visuals come flooding back and everyone gets taken for a spin. The ECMO burn, the scarring, the "heart bump".

Aiden's battle ground.

And yes, it was a battle. Aiden fought hard and he won.

Because of the scarring, surgical plans had to be changed. Because of the ECMO burn, tubes placed elsewhere. Central lines will have to be detoured. PICC lines and arterial lines have to be moved.

Mitiral valve repair is the only option. They will try to repair the tricuspid valve; if not, bi-directional Glenn. Ask Dr. Pediatric cardiology if anti-tachycardia pacemaker may be the way to go. (Did you know that they make different kinds of pacemakers? I didn't. Interesting...) Instead of the pacemaker going off and shocking his heart back into rhythm if it gets too low or "pauses" on the sotalol, the ATP will do away with the sotalol and only shock him if the heart rate goes too high. Less drugs is a good thing, right?

I asked about updates during surgery. We will be updated every hour.

I gave them my rules. I don't want to know when Aiden goes on bypass. And bring him back to me the way I gave him to them. Alive.

Chris asked how long it should take and how long Aiden will be in the hospital. I don't ask those questions. I don't want to jinx it. So I closed my ears.

Aiden was getting bored of all the yapping about him and was getting aggitated. I took my iPod out of my purse and let him play with it. Dr. HS played with Aiden.

Dr. HS hands me another business card. So does Dr. SHS. Anyone want some business cards for two heart surgeons? I don't.

I kept dropping things. The PA asked if I was okay. I said "No, not really." And, honestly, no I'm not. I have been too stressed out to eat or to sleep. My chest feels like it is going to implode every second of the day. Anxiety attacks happen all times of the day. I try to keep myself occupied and not think about what is going to happen. In my mind, I know that there are complications, I know what those complications are. BTDT. I don't have the angels singing, harps playing memories that other moms have following heart surgery. Aiden wasn't fixed then. If he was, we wouldn't be going through this now. I remember that day like it was yesterday. And I sure as h-e-double hockey sticks didn't have the time to prepare this go around that I did with the first one. Wham-Bam-Thank-You-Ma'am. I informed them that they really needed to give moms more than 30 minutes to process and absorb the information from cardiology before calling with a surgical date.

When we got home, I realized today is an important date.

Today is the 3rd Anniversary of being told I was going to Holland instead of Italy.

The Week Just Keeps Getting Worse....

The phone rings today.

And it is Dr. Pediatric Cardiologist, herself. Not the nurse, the doctor.....

You know when the doctors call themselves, the news is never good......

Since Aiden has been off the sotalol, his tachycardia has came back. Aiden needs to go back on the medication. However, the medication makes his heart stop.

Aiden needs a pacemaker.

And since Aiden's heart is, you know, Aiden's heart, the surgical team is also going to do the valve repair surgery. On both valves.

Pre-op is Monday.

OHS is Thursday.

It's a Cruel Summer

Have you ever had one of those days? You know, the kind of day where if someone looks at you wrong, you will snap? Yes, one of those days. That was this week for me.

Monday, I took Aiden to school and had to take Chris's watch that I bought him for some holiday - I want to say birthday, but I could be wrong - to the watch repair place for an extra link. Only they don't carry extra links, so I had to buy a new band. Then I met Chris at one of the pet stores because he now owns a 55 gallon fish tank and needs things to go in it. We then went to another pet store because he was looking at stands and the first pet store didn't have any that he liked. We found one at the second pet store. Then we went to another pet store to look at more fish.

After the third pet store, I went to get something to eat and Chris had to be in Downtown Tulsa for a friend's custody hearing. But he ended up coming to the McDonalds where I was at to get my mom's phone number. When he got into my Jeep, he was griping that the air conditioner wasn't blowing cold. Really, I said. With my air conditioner setting at 55*, I was sweating and tried to inform him that something was wrong with my Jeep. I told him to trade me Jeeps for the day since Aiden's heart could not take that kind of heat. But he didn't want to be in my Jeep either.

When I made it to Aiden's school to pick up Aiden, all the fluid in the radiator or reserve tank was now boiling out of my Jeep and onto the parking lot. Chris received a phone call and he immediately exited the highway and came to Aiden's school.

4 hours later, he manages to get my Jeep back home and works on it. I inform him he needs to make sure that my Jeep is in proper working order otherwise I will be putting 3000 miles a month on his never-gets-driven Jeep.

Let's just say he knew I was mad enough that he went to the furniture store and bought me the matching chaise to our living room set. It was delivered yesterday.

Tuesday and Wednesday, Aiden's allergies are so bad that he had to miss school. Everytime he would gag on the mucus, he would throw up. Benadryl wasn't doing the trick, so Aiden has been getting Tylenol Cough and Runny Nose for the past few days. He finally made it through the night last night and went to school today.

The temperature here has been obnoxious. Seriously. Everyday this week, it has felt like 107/108*. Hell is in Oklahoma if anyone is wondering.

Peek-A-Boo! Where Are You?

July 8th 2009

 You have to go with me on this.....

Let's pretend that we time travelled into the future. Not a long time into the future, just a few weeks. And we are going to pretend that today was Aiden's appointment with Dr. Guts. And we are going to pretend that Aiden cooperated with being poked and prodded.

Dr. Guts walks into the room and asks, "Which one of you is Aiden?" Hey, he has a sense of humour! He is of Irish/Scottish ancestry so he has to comment on how much he likes Aiden's name.

We then sit down and talk about you know, the issues and why Aiden is there visiting with Dr. Guts. I told him about the Down syndrome conference and how Dr. What-ever-his-name-is discussed health issues in children with Down syndrome; specifically the symptoms of diabetes. Which that topic got my wheels to spinning because Aiden has a lot of the same symptoms, he just isn't sick like children with diabetes. So, what if Aiden's lack of weight was caused by something else.

And then I told him about Aiden's cath lab and how Dr. Secondary Pediatric Cardiologist did not see anything during the cath which would lead him to suspect that Aiden's heart was the culprit. And how I opened my mouth about my suspisions. Which prompted surgical controversy during the conference and led to Aiden visiting with Dr. Genes and Dr. Guts.

I told him about Dr. Genes doing all his testing and the results. And how Dr. Genes thought that Aiden has a gluten sensitivity (but not celiac) and wanted to put Aiden on a gluten restricted diet. Dr. Guts asked if we had made the switch and I told him no because 1) Dr. Pediatrician didn't want to make any changes to Aiden's diet until after we had seen Dr. Guts and 2) Aiden is already on Pediasure, which is gluten-free and 3) Aiden considers ice cream and Club crackers to be in the 4 basic food groups.

As Dr. Guts was leaving the room to get the results of Dr. Genes' tests, he pats me on the back and tells me he likes me.

Then he comes back in with the results. The number that Dr. Genes said was elevated and causing the gluten sensitivity, according to Dr. Guts is irrelevant. The main number - TTG - was in the perfectly normal range, so he does not want to make any changes to Aiden's diet. The liver enzyme that was checked is a little elevated, but that could be due to Aiden's heart.

Then he poked and prodded Aiden. And he asked if I knew Aiden had Down syndrome.  HAHAHAHAHAHAHAHAHA!!! He asked what I had been told about Aiden's nystagmus, since it is apparently rare. I told him that every single kid with Down syndrome that we knew has it.

He didn't feel that Aiden's liver or spleen were enlarged, which is good. He did hear a heart murmur.

He is going to get the normal result numbers for the 72 hour poop test from Dr. Pediatrician, because I don't have those numbers on hand. And he does want Aiden to under go another celiac panel in 6 - 9 months because apparently at the age of 3 is when the testing becomes reliable.

Dr. Guts did say that IF Aiden needed a feeding tube, that he or Dr. General Surgeon Who Likes to Play with Children's Hearts would do it. I flat out look at him and said that doctor was not even allowed to look at my child, much less stick him with a needle. But he doesn't feel that Aiden would benefit from either a NG tube or g-tube.

Translation = Dr. Pediatric Cardiologist has just been given the green flag in cracking open my child's chest.

The Things Aiden Does at School

Yesterday as I went to pick Aiden up at school, I spied on him. There is a one way window in each of the class rooms where the parents can watch the kids without the kids seeing them. I was somewhat shocked to see Aiden yesterday....

Alyx, Aiden's little girlfriend, was sitting in the child size recliner that Miss Kate brought in. Aiden was standing in front of the chair. They would both look around to make sure no one was watching. Then they would lean in for a kiss. This went on for about 3 minutes. Seriously, the boy is a little player!

And while we were still at school, I took the leads from the Holter monitor off. Aiden was awake and would be sleeping by the time we made it to Dr. Pediatric Cardiologist's office. Aiden was not happy with having the tape and leads removed. He acted as if I was waxing the non-existant chest hairs off of him.

Miss Kate asked if I would be willing to bring his gait trainer up to the school since PT has finally come to the decision that Aiden is NOT going to reciprocal crawl. So, last night I brought the gait trainer out of Aiden's room and started to take it outside. Aiden happened to see this and was not happy. He had to go outside with it and wanted to walk in it. But he didn't have his shoes on, so he had to settle for a ride in it.

This morning I unloaded the gait trainer before I unloaded Aiden. Then I promptly put Aiden in his gait trainer. He walked from the Jeep to his classroom without a lot of assistance and managed to turn the corners with minimal assistance. And then he had to show off by walking into the classroom backwards. We walked back out into the hallway to show Kate what Aiden could do. Aiden decided that he really didn't want to go to class, but instead wanted to walk around the school.

He's learning independence.

Return of the Holter Monitor

It's that time again. Aiden is being followed by his "shadow". We picked up the holter monitor yesterday and we will be returning it today after school. I informed Dr. Pediatric Cardiology's office that they shall not call with the results this week, since they will call on Friday and my birthday is Saturday. I don't need to be depressed any more than necessary. We'll hear from them on Monday.

Aiden also had his weigh in yesterday. He gained 9 oz last week. Dr. Pediatrician came in the room while I was getting Aiden dressed. She had some confusing news. According to the report from the nutritionist, Aiden is in the 20th percentile for weight on the Down syndrome chart. Aiden has never ever been in the 20th percentile. He weighed in at 19 lbs, 11 oz. That does not make for the 20th percentile; more like 3-5 percentile. Either the nutritionist confused Aiden with one of the three other kids seen at Dr. Genes' office or Aiden is harbouring fat that we don't know about. If Aiden was in the 20th percentile, we wouldn't be going through all this.

Aiden's enrollment packet for the Little Light House 2009-2010 school year is at Dr. Pediatrician's office needing her input on a few things.

Speaking of school years, I either need to locate Aiden's birth certificate ( somewhere in his bedroom ) or go buy a new one for the local school district. I still need to get him enrolled there and we're waiting on the IEP date.

Improvising

Since Aiden normally gets around by bear crawling, there are times he has to come up with other ways to be mobile, especially when carrying things he wants in the living room.

Links for Little Ones

Please reserve the date for our 22nd annual golf tournament - Links for Little Ones. On Monday, June 15, 2009 we will tee off at The Golf Club of Oklahoma. Two flights will be available at 8:00 AM and 1:15 PM.

Come and join us on the course AND help improve the quality of life for children with disabilities at the same time! All proceeds benefit the children of the Little Light House, a 501 © (3) non-profit that operates entirely through private contributions, without any financial assistance from the government or United Way. We are a Christian Developmental Center serving 64 infants and young children through the age of six whose conditions include cerebral palsy, spina bifida, Down syndrome and other genetic disorders, speech impairments, visual and hearing impairments, cognitive delays and autism giving them a critical "boost" during their early years of development.

Do you know how early 5am is? I mean really know? That is what time Aiden and I woke up so that we could be out at the Golf Club at 7am to meet and greet the golfers who came out to sponsor the Little Light House.

And Aiden was good for about 45 minutes. Then he got bored of being held and wanted to play with all his friends.

Prayers for Ashlyn

Ashlyn is a little girl with Down syndrome. And Ashlyn has Leukemia. Again.

Click on the button to let the family and Ashlyn know that you are praying for her to win this battle for the second time.

What's Going On in Aiden's Life

First, I have to apologize for not updating the blog on a daily basis. I have found a new addiction on Facebook, Farm Town. It is a gaming application in which you plant crops, hire people to harvest those crops, sell the crops. Oh, and it allows for instant social interaction (one which isn't doctor related).

Tuesday, I took Aiden in for his weight check at Dr. Pediatrician's. There wasn't any change in last week's weight. Then we made the trek 5 miles south - which took 30 minutes thanks to hospital traffic - to Dr. Eyes. And Aiden had to be dilated for this visit, so I put the drops in his eyes at Dr. Pediatrician's office. Aiden doesn't like anything going near his face unless it is food.

Dr. Eyes claims that the nystagmus is getting better, which at home we see only if he is sleepy. Also, Aiden does not need glasses at this time; his vision is only a little out of focus which doesn't justify correction. But we bring him back in 6 months for another exam. Due to Aiden's eyes being dilated, he was in an extremely foul mood the rest of the day, so we had to cancel speech.

We are still continuing the potty training and Aiden went potty on the toilet two days in a row.

Aiden is working hard on self feeding. He is getting to the point where he does not want assistance with food (or straws for that matter). So last night, I let him do his thing, much to Chris's distress over the carpet. But he has to learn self feeding regardless, right?

School starts back on Tuesday and I am sure Aiden is more than ready to go back. It has been too hot here with temperatures in the 90s to go outside much. The higher the temperatures, the more his heart has to work. Which after school on Tuesday, we get to make the trip to Dr. Pediatric Cardiologist's office for Aiden's "shadow" the Holter monitor. This will be the determining monitor as to whether or not Aiden goes back into the hospital for a pacemaker. Personally, I don't want to know this just days before my birthday.

Oh, and I got a new best friend.

I saw this purse at Christmas time and she went on my wish list. However, Chris was not about to pay the $300 the Coach store wanted. Well, a friend of mine told me about this website that sells designer purses cheap. And Debbie, you are going to love this bargain! She was only $40! So, Chris bought it for me. He is AWESOME!!!<--------- hijacked by Chris!

Aiden has two more months in our EI program before he *insert banned word here* out. And I want to get his EI team parting gifts. What are good ideas? Aiden's PT loves dragon flies, Aiden's ST is a teacher, and his service co-ordinator, well, we really don't know much about her personally. But I want to get them gifts that mean something.

Aiden's School Needs Your Help

Aiden's preschool, The Little Light House of Tulsa, desperately needs a new website. One of the local web designers is holding a contest for non-profit organizations and LLH is one of the 4 finalists.

Click here, to vote for the Little Light House.

CRACK!

Aiden cracked his head yesterday. After cleaning up the living room, I brought his tumble mats out for him to play with. He was climbing up the steps and fell backwards into the stereo receiver's corner.

After he calmed down, I gave him a bath to wash the blood out of his hair. And he went right back to playing on the mats.

 

  

  

This morning, he was right back to climbing on his tumble mats.

Hurricane Aiden Has Been Upgraded to a Category 3

Does FEMA cover the damages done by a child?

Seriously, I should qualify...

His room takes two hours to clean daily. The living room is a constant disaster area. And now that he has discovered the area behind Chris's recliner it is even worse. The end table is subject to Hurricane Aiden and his destruction.

We've decided to give Dogg away since I want to move Aiden's outdoor toys into the back yard. Summer is here and Aiden NEEDS the restriction of a fence. I told Chris that we should just buy a kennel run for Dogg when Aiden is outside playing. Aiden won't go anywhere near the dog unless there is a glass door barrier between them. Can't say I necessarily blame him, the dog's breath stinks and he is bigger than Aiden. So, he will be going to live with Aiden's girlfriend Alyx.

Speaking of animals, there is a new petshop in Bixby. The fishy expert (my mom) was telling us about it and Chris wanted to go check it out. So Tuesday after Aiden's weigh in and Pediasure pick up, we went there. First we checked out the fish. Not that we really need more fish; he still has the big tank with the larger fish and the nursery tank with 10 - 12 babies in it. But this did give Chris the idea that maybe he could do a salt water tank. Over my dead body!

We then went to the other side of the store where the other critters were. They have prairie dogs. Seriously. Aiden was fascinated with them as long as they stayed in their container, but as soon as one came out he just kind of looked at them, he didn't want to touch one. Chris thinks we now need a pair of prairie dogs. And yes, you have to buy them in pairs as they are social animals and will wither up and die without a friend.

After Aiden's weigh in, the nutritionist emailed. They really want to put Aiden on a gluten restriction diet. He's already gluten free for the most part. Really. He doesn't eat enough wheat products to make a difference. But we can't change anything until we see Dr. Guts in July anyhow. Besides, Dr. Pediatric Cardiologist is pretty sure Aiden's failure to gain weight is due to his heart and she is just compliling the information received from all the new "ists" to take in front of the surgical conference team. Oh, and we've had him on the new oil for one week. I'm thinking it isn't supposed to work miraculously overnight.

Yesterday, we did Aiden's 6 month review for EI services and discussion of "insert banned word here". Aiden decided not to co-operate with anything since the therapists were here also. Normally, he'll talk for PT and stand/walk for ST, but since they were both here, he wasn't going to do anything. I also got a copy of a blank IEP. I really don't want to go through "insert banned word here". But Aiden does need to start attending public school and get used to how things are supposed to be in the future. And I am going to have to leave my comfort zone eventually. Didn't say I had to like it though.

Aiden has figured out that when it is time for bed that he is supposed to have a blanket on him. Now when I put him in bed, he will grab his Cars blanket and cover up with it while he is finishing his bottle and going to sleep. Granted he doesn't keep it on after that, but it is a start.

He has also discovered underneath the dining room table. It has become his "fort" for ambushing and roaring. Oh, yeah... Aiden can roar now. It's so cute! He'll hold his hands up like claws and ROAR! I'll have to attempt to get that on video.

Happy Blogoversary To Me

Glitter Graphics Maker

Can you believe it has been two years?! I can't... In fact, it snuck up on me today. I didn't realize that today marks the 2 year anniversary of A is for Aiden. It totally slipped my mind!

So, I'm going to let you, the readers, tell me what you want me to do to celebrate this month (also my birthday month).....