An Infection

Aiden has been having home nursing come out, every other day since Saturday.

Today, the home health nurse took one look at his chest and I was on the phone with Dr. Pediatrician getting an appointment for antibiotics. And I also had a call in with Dr. Pediatric Cardiologist.

Now, I'm not going to go into detail about why Aiden got an infection or my thoughts on it. But here it what it looks like as of 10 minutes ago.

Let's just say that for the past month, it has not looked this bad. There was no pus, the redness was not there. This is what happens when non-qualified medical personnel makes a medical decision. It did not even look like this on Wednesday of this week.

Dr. Pediatric Cardiologist's nurse called and could get Aiden in before he could get into Dr. Pediatrician's office.

Aiden was sent for a CBC, diff, wound culture and gram stain. The CBC and diff came back with all normal numbers, so Dr. Pediatric Cardiologist said that the infection has not reached Aiden's blood stream. Which is good, we weren't going to be admitted tonight. We are still waiting on the gram stain and it will be Monday at the earliest before we get the results of the wound culture.

She also did an ECHO to rule out any effusion, which he does not have. This is good news.

Aiden is back on Keflex for the time being unless the wound culture shows something else is growing, then he will either change antibiotics or be admitted for iv antibiotics.

My Child

My child has some special needs,
but that is part of God's design.
I just need to remember
that God's will is best, not mine.
My child is not a burden,
he's a blessing from above.
Sometimes we face a struggle,
but our lives are filled with love.
Put Jesus at the center,
and forget your selfish ways.
The Lord will surely bless you,
and help you through your days.

Beth Lohse

Hot Dog, On a Stick........

 

 

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He's a Dancing Machine

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Nap Time

Yesterday, Aiden crawled up onto the loveseat to take his nap.

Today, this is how Aiden chose to take his nap.

2010 DSAT Calendar Shoot

This morning, Aiden had to be at Woodward Park for the annual Down syndrome Association of Tulsa calendar photo shoot. He was up at 6:30am and got dressed without any incidents. We left the house at 8am, because of traffic and sure enough all the radio stations were informative as to where the stupid people wrecks were. And there was A LOT of wrecks this morning.

The photo shoot was supposed to be at 9:00am, but the photographer and the DSAT representative had some scheduling issues. The photographer did not show up until after 10 am. Do you know how hard it is to keep kids clean at a park?

While we were waiting, I managed to snap a few pictures of Aiden

I can't wait to see what Jill Solomon, the photographer captured!

An Overdue Update

I know, I know. Bad Aiden's Mommy. LOL

Monday, we went car shopping. Instead of taking Aiden with us, I got the brilliant idea to take Aiden to Grandma Susan's house. Aiden did not agree and threw a big enough fit that he threw up and we had to take him car shopping with us.

And this is Aiden's new chariot.

A 2001 Mercury Mountaineer. Fully loaded, including dual air - so that I don't have to freeze while keeping Aiden cool (this was the selling point as I also looked at a Chevy Equinox that I really liked). It's not brand new, but might as well be since it has less than 60k miles on it. Meaning that the previous owner didn't drive it much. That is 6,000 miles a year for the past 9 years. I'll do that in 6 months.

See the spot to the left of the back tire? That is the 2 foot deep ditch that I fell into and broke my foot. Actually, more of a stress fracture, but that still counts as broken. I spent Tuesday finding that out.

Today, Aiden had a follow up appointment with Dr. Pediatric Cardiology. He weighed in at 20 lbs 5 oz. So, he has gained a pound since surgery. We go back in 2 weeks with chest xrays. Also, we will be getting a home health nurse twice a week while Aiden's chest is healing. It still hasn't closed all the way.

And today was Aiden's class end of year party.

Aiden's Day Out

So this morning, I took the trash out. Aiden was still in his jammies and attempted to go outside. I informed him that he was still in his jammies and that he could not go outside. This exchange was followed by a temper tantrum. I then told Aiden that we would go to the park later. Chris got the idea to take Aiden to the zoo.

So, I loaded up the wagon and canopy, Aiden's cooler of Pediasure, his backpack and camera. Aiden fell asleep with less than a mile to go before we made it to the Zoo, but woke up as soon as we parked. He was happy to ride in his wagon, but would have preferred the bike (however the bike does not contain sufficient storage space.

When we walked out of the Arctic building, I noticed a little blond boy with very distinctive eyes. Chris and I talked about him for a few moments and then we went through the rest of the zoo.

At the chimpanzee area, Aiden laughed at one of the baby chimps who was playing acrobatics with one of the ropes.

When we left the primate and aviary building, that little blond boy was outside with his parents. The mom was holding him and I asked how old he was. His name is Hayden and he had just turned two. He was born with a VSD. We got to talking about the boys. Hayden and his family are from Arkansas, but were here visiting our zoo.

Our last stop was the Elephant Encounter. Aiden was watching the elephants inside the cages. I made the sign for "elephant" and Aiden started signing it also and laughing as the elephant raised her trunk also signing "elephant".

On the way home, Aiden fell asleep. So, Chris and I took the opportunity to drive by a few car lots on the way home. It is time to replace my Jeep. At the first car lot, we looked at a GMC Envoy and another Jeep Grand Cherokee Laredo. At the next car lot, a Ford Explorer. And at the third car lot a Toyota 4Runner. I really want either the Envoy or the 4Runner. Tomorrow, we are going to look at another Explorer and I'll get to make my decision.

Hit the Road Jack, And Don't You Come Back No More

That's right! No more home O2. No more pulse ox. No more beeps and screams and alarms. We have a lot of unused canulas and Tender Grips if you know of anyone needing some. Just let me know.

The day all heart moms dream of.

Weigh In

Aiden had an appointment at 1:40pm today with Dr. Pediatrician. We left the house at 1:00pm, giving us plenty of time to be at the office. Well, it would have been plenty of time to be at the office had there not been a non-fatality accident on the BA Expressway (Highway 51 going from where we live to Tulsa). This is a four lane highway with exit/service roads every half mile. I was in the middle lane of hell. All 5 lanes were at a complete stop. The traffic was so bad that the tow truck had to have a police escort. (Yes, this is the SAME highway we travel daily to take Aiden to school.)

The 35 minute drive took an HOUR!! We were stopped in traffic for 40 minutes. Aiden pretty much got p@ssed after 10 minutes. Oh and if you have never sat in traffic with a 2 year old heart patient who just recently underwent open heart surgery in 100* temperatures, I highly recommend it if you want to hear screaming for the next hour. While we were waiting in traffic, I called Dr. Pediatrian's office to inform them that there was no way we were going to make our appointment at the scheduled time. The woman at the call center said that they had received a few calls like mine from various other moms who were in the same lane I was in. All this over a Suburban who rear ended a Silverado. Nice.... I will not go into my opinion of rubberneckers/gawkers.

We got to Aiden's appointment 30 minutes late. Fortunately, my message had made it to someone higher up. Because we only sat in the waiting area less than 5 minutes. Dr. Pediatrician's nurse came out and immediately retrieved Aiden. She then wanted to weigh Aiden on the stand up scales, but Aiden didn't want to cooperate and Dr. Pediatrician was standing in the hallway while she went to weigh Aiden in the bucket scale. Only Dr. Pediatrician wanted Aiden stripped down to only the necessities. She wanted Aiden to account for every single ounce produced on the scales.

20 LBS EVEN!!!

3 oz in two days.

I also took the xrays from Monday's cardiac appointment. Dr. Pediatrician looked at them though the room light. And I told her about being able to see the pleurodesis patch on the light box. She retained said xrays for training purposes and to have a base xray for future use. I so wanted to scan in that set of xrays since Aiden isn't "put back together" the same way as his first heart surgery. There are no wires holding him together this time; it's fishing line and not even visible on xrays. Honestly.

Dr. Pediatrician feels that Aiden can go back to school. So after the appointment (which, yes took an hour), we went to school to talk to Miss Kate. Tomorrow is "water day" at school, but Aiden can't get his chest wet and since he loves to play in water, he will not be attending tomorrow. Also, I needed some fears of mine to be put to rest. Kids are kids and not always, you know, paying attention to who/what is sitting on the floor.

So Miss Kate will talk to the nurse and the therapy staff to see what they think about Aiden maybe going a few hours on Monday, just to see how he does. It is the last week of school until the new year begins next month. And Aiden misses school and his friends. He is getting bored at home. Tomorrow, Aiden will have an "easy therapy day" (his first since surgery) with his EI therapist Karrie just to test the waters.

Since there were no kids in class when we got there, Aiden got Miss Kate, Miss Amy and Miss Lindsay all to himself. Aiden loves Miss Amy, they share a love of Jeff Gordon and NASCAR. And they got to observe Aiden playing by himself and the things he has been learning. He is doing really well at pretend play and solving problems.

This morning as I was tieing my shoe laces, Aiden came up and decided to "help". So now he is showing interest in learning how to tie. His "dress me shoes" from Beyond Play are going to come in handy now.

Back In His Own Bed

Last night, Aiden actually went to bed in his own bed. And he stayed there for most of the night. At 4:30 this morning, he woke up for a bottle and screamed until he got to go to the big bed.

However his chest was hurting this morning. Probably from having the dressing ripped off of him yesterday. So when we got up, he got his morning dose of Children's Motrin.

Follow Up Appointment with Cardiology

Today was Aiden's first surgical follow up with cardiology. I hate taking Aiden out of the house just to go to the doctor. It would give the child a complex if I only took him out for bad things. So, I called Miss Kate and asked if it would be okay for Aiden to go to school for closing circle and see his friends. Aiden loved it! He wasn't happy about leaving school only after 30 minutes, especially when he is used to being there for 5 hours.

But we had to go get chest xrays. Instead of the Pig-o-Stat, we sat Aiden on the big xray bed. There is one problem with this. Aiden wiggles. And since Aiden is so flexible, he can wiggle out of any restraint. Therefore, we spent longer than customary for 1 set of chest xrays; we had to do doubles.

Then off to cardiology. Dr. Pediatric Cardiologist is on vacay, so we were seeing Dr. Secondary Pediatric Cardiologist. Aiden wasn't too happy about getting an echo because it involved going near his chest. Honestly, I can't say that I blame him; I wouldn't want anyone going near my chest any time soon following open heart surgery. However he was occupied with the MP3 player and echo tech got a really good echo.

Oh, and Aiden weighed in at 19 lbs 13 oz today.


Then we went into the exam room for stats, medications list, and EKG; again another procedure that involves someone else's hands near Aiden's chest and two people holding Aiden down for a reading.

Since Aiden doesn't like anyone going near his chest, it has been d@mn near impossible to change his dressing. He hasn't been running a fever, but when I changed it the other night, the wound didn't quite look right. So I cleaned it up with peroxide and Neosporan before putting another dressing on it. Today, we went to take the dressing off at cardio, since Dr. Secondary Pediatric Cardiologist was going to want to look at it. the bottom part of the incision is red and inflammed, but there is no infection. However, he still wanted to get Dr. SHS to look at it.

Doctor office exam rooms are not that big. Aiden, apparently, is a superstar. I had to go to the bathroom, leaving Aiden with Chris. In the few moments I was gone, that exam room was filled with people. Dr. Secondary Pediatric Cardiologist, Dr. Heart Surgeon, Dr. Secondary Heart Surgeon, Student Dr. Whatever-His-Name-Is, and 3 nurses. Not to mention Chris, Aiden and myself. This was not the room to be in if you are claustrophobic. Dr. HS was holding Aiden's legs, Chris was holding Aiden's arms and head and Dr. SHS was cleaning Aiden's incision area.

Afterwards, everyone but Chris and Aiden step out into the hall to discuss Aiden. We were discussing how to do a "wet/dry" debriding and doing it everyday. To which Chris, loudly, responds "See, I told you so." Everyone in the hall started laughing before I stuck my head back into the room and said, "You're so full of sh$t." Chris faints at the sight of his own amputated toe nail.....

We will be starting Aiden on Keflex. Not because he has an infection, but because of the pacemaker, we don't want him to get one. If it weren't for the pacemaker, he wouldn't be on it.

And they tested Aiden's pacemaker today. His heart rate is running about 125 on it's own, with a few episodes of tachycardia. But nothing like it was before, so Dr. Secondary Cardiologist is happy. He also said that Aiden will probably be coming off of the Lasix in the next week or so. We have an appointment next week.

Nightmares

Aiden started having nightmares last night. He was asleep maybe two hours and then the crying and screaming began.

Chris was going to go back to work today. He has been off work since the day we found out about Aiden's surgery. Aiden slept in the big bed following his nightmares, sending Chris to sleep on the sofa.

There are pages of colouring books all over the living room floor. Aiden has decided it is much more fun to tear the pages out of the books than to keep the pages in the book and colour on them. At least he is tearing the full pages out and not corners or half pages. LOL

Last night was his first bath following surgery. He wasn't too happy about being in the bath chair. But his chest can't be submerged yet.

And now I need suggestions....

Aiden takes both a bottle and a sippy cup. At school, he only uses a sippy cup. However at home, Aiden HAS to have a bottle for his Pediasure. He will not accept a sippy cup with Pediasure. The sippy cups, according to Aiden, are for the sugary drinks ie Pepsi and sweet tea.

How do I get the Little Boy to drink his Pediasure in a sippy cup and get rid of the bottle?

6 Days Post Op

Aiden has been home two days now. He isn't crawling much, but he is starting to pull to stand up. His gunky cough sounds better. We can't give him anything because we WANT him to cough.

Pain management is Tylenol and Motrin alternated. And he seems to be tolerating those pretty well.

He is getting bored though, not being able to go around the house like he was before surgery. All of his favourite toys are in the living room now. But he does get bored with those. We are blowing a lot of bubbles and working on OT skills. I bought some colours and colouring books for him.

Nah, Nah, Nah, Nah. Nah, Nah, Nah, Nah. Hey, Hey, Hey. Good Bye.

PAROLLED!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Day 5 Post Op

Aiden was moved to the 3rd floor, Oncology - or the "clean floor" last night. The ride up the elevator hurt his chest, so he had some time getting settled in. Chris stayed the night with Aiden while I went home to get some sleep. This morning I brought Krispy Kremes up for breakfast, but Aiden didn't want any, because he is too sore to eat. Not to mention he really has to poop, but can't strain enough to actually do anything. The narcotics he was given following heart surgery has made the constipation worse and his poor stomach muscles are sore from the pacemaker. The nurse is going to get him some Miralax and a suppository to help him go potty.

He will not leave the pulse ox probe alone. He keeps taking it off. And he needs to cough because he is gunky, but it hurts to cough.

When we left the PICU, I gave the charge nurse a thank you card for the staff. Most parents don't think to do that. Usually, I don't either, but I haven't had to yell at any nurses this stay. LOL!!! And the care Aiden received this time around was really good.

I made Aiden's follow up appointment with Dr. Secondary Pediatric Cardiologist for next Monday. Dr, Pediatric Cardiologist is going on vacation.

Also, there is a little baby undergoing heart surgery this morning. I didn't see his mommy at all yesterday.

Down Graded

Aiden was moved out of the "heart room" and into a regualr PICU room. He was really clingy yesterday and there was nothing to do but lay there as there is no television in the heart room.

This morning, the chest tube came out and we are being down graded again to the oncology floor, or clean floor. We should be home sometime tomorrow.

Three Down, One to Go

All IVs are out, central line is coming out now. Tomorrow the chest tube.

Aiden is eating and had a sip of Pepsi earlier.

And we have snuggle cuddles.

FOOD!!!!

At 5:50 this morning, Aiden got his wish. He was given 3oz of Pedialyte. He drank all that and then threw the bottle down and then he said "Eeeee" = eat. Dr. SHS came by and said that the iv could be removed, stopped the fluids, removed the foley cath, and they are weaning him from the milrinone. She also said to feed as needed. Aiden was quite happy with this plan of action.

Due to the small amount of pleural effusion still left, the chest tube will stay in until tomorrow just to make sure that there is no more drainage.

He wants to be held and cuddled, but with the central line and chest tube, he can't be held yet. We did get to somewhat hug a little. He grabbed on to my neck and wasn't about to let go either. So now he is whining because he wants held.

He is on O2 currently. Right now the settings are at 4 liters at 45%. But his stats are good, so they will be weaning him off of it soon.

Extubated

Aiden got his wish today and the vent tube went away. He's so hungry that he is trying to suck on the suction tube now.

Overnight Update

Aiden did pretty well overnight. He didn't get too terribly pissed off until 5:30 this morning when respirtory came in to suction. He tried to extubate himself with his feet, so he is now strapped down to the bed.

Dr. Pediatric Cardiologist and Dr. SHS came in just a few minutes ago. They ran a test on the pacemaker. It is kicking in when it needs to. Dr. Cardiologist wants it set to kick in when his heart rate goes below 100 to avoid putting Aiden back on the Sotalol. Plans are right now for Aiden to go home on Lasix and Enalapril, with possibility of Digoxin.

The vent settings have been lowered from 14 to 12. At 10am, the settings will be lowered to 10 and gas will be given. If Aiden is good for 2 hours, then he will be extubated at noon.

Started the Lasix back this morning to help dry up some of the fluid on his lungs. Hopefully that helps.

If Aiden hears my voice, he gets upset. He wants to be held and reaches out to be held.

Update 6pm

Surgeon came in to check Aiden. They are pleased with the results. And Aiden removed the arterial line, so 2 more to go (besides being extubated - which may happen at 4am if the chest xrays are good!).

3pm Update

Aiden is in his PICU room. He is still intubated at 45% assistance, due to fluid on his right upper lung lobe. The medical team is hoping that the fluid will drain naturally or that he will absorb it without having to medically interfere.

Both valves were able to be repaired and a bi-chamber pacemaker was put in. Fortunately, Aiden did not require the bi-directional Glenn.

Right now, he is still heavily sedated with fentanyl, milrinone, a heparin reverser and versed. He keeps fighting the intubation tube and kicking off the blankets. He even tried to sit up a few times since coming into his room.

But I do have to say that he looks 100% better than he did following his first surgery. His chest is closed and Drs. HS and SHS did clean up some o fthe scarring from the first OHS.

And if you look close enough in this picture, you can see Aiden's pacemaker. (Hint, it is the little black circle just under the tegaderm and large guaze strip.

Today and tomorrow, Aiden has a PICU nurse who worked at the OU Children's Hospital. He has 4 rules for the parents: eat, sleep, if I have any questions, ask, and know what the weather is like outside because he wants a weather report.

Noon Update

Aiden is out of surgery and is currently in his PICU room. Both the mitrial and tricuspid valves were able to be repaired and the Glenn procedure was avoided. Haven't gotten to see him yet, but will within the hour.

10am Update

Repair has began.

9:00 Update

The IV's and various other lines are in. The team is working on getting Aiden's chest open. Instead of using a bone saw, they will be chiseling it open to avoid hitting his heart.

It's Began

Aiden went back to surgery at 7:15 this morning. We got to walk half way back before the nurses took him away.

Off to the Hospital

I'll update as often as I get updated from the surgical team.

A Heart Poem

This was brought to my attention today via another Heart Mom. And it was needed on the eve of Aiden's heart surgery. I hope you enjoy it and get as much inspiration as I did from it..

One day my world came crashing down,
I'll never be the same.
They told me that my child was sick.
I thought, "am I to blame"?

I don't think I can handle this.
I am really not that strong.
It seemed my heart was breaking.
I have loved him for so long.

I will not give up on this child.
I will listen to your advice.
I will give my child any chance.
No matter what the price.

I will learn all that I need to help my child thrive.
I'll even use that feeding tube.
My child must survive!

Will he need a lot of therapy?
Will he gain the needed weight?
Please God, help me do this.
I will accept our fate.

When the monitors beep at night, it serves as my reminder.
How many parents would love that sound.
Tomorrow I will be kinder,
As another Angel earns his wings.

I run to my child's bed.
I watch him sleep for quite a while.
I bend down and kiss his head.
I cry for the parents whose hearts have been broken.

I look to You wondering why?
Oh Lord, I just can't know your ways....no matter how I try.

And yet, I trust you hold his life, and guide us through each day.
My mind says savor each moment he's here,
but my heart begs, "PLEASE let him stay"!

From pacing the surgical waiting room, to sitting by his bed.
From wishing for a good nights sleep, to learning every med.
From wondering, "will he be alright?",

To watching him reach out his hands.
With every smile my heart just melts,
Despite life's harsh demands.

For all who see that faded line.
I look to them and smile.
You see my child is loved so much.
I would face ANY trial.

That scar I trace with my finger
(It's the door to his beautiful heart).
God must have known how much I'd love him
(Just as He loved him from the start).

A heart mom is always a heart mom.
Now wise beyond her years.
For those who have angels in heaven,
Our hearts share in all of your tears.

Every day I will try and remember,
I was chosen for him (and no other).
I will always embrace that beautiful day.......
When I became a "Heart Mother".

- Author Unknown