Wednesday, April 30, 2008

The Love of My Life

Last night, around 3 in the morning, Rob and I came to MUSC's emergency room because he was having some chest discomfort and shortness of breath. We both honestly thought it was his blood pressure, or maybe anxiety. Little did we know what was in store for us.

Rob was admitted with congestive heart failure and atrial fibrillation. I have never been so worried in all of my life. You worry about your kids all the time. You kiss their boo-boos and hate to see them go through anything. They always seem so small. But to see your spouse go through something so serious is just heartbreaking. Tonight he is in the hospital. We will be here for several days for testing and observation. Tonight is his first night on CPAP for what we believe will become a definitive diagnosis of obstructive sleep apnea. We think years of undiagnosed apnea is the cause of the heart failure along with high blood pressure.

He was very claustrophobic when the respiratory therapist put the CPAP mask on him, but with a lot of encouragement, he is finally falling asleep wearing the mask with no problems. I hope he has the best night sleep ever! Once he has been released from the hospital, he will have a sleep study done to officially diagnose the apnea and he will begin wearing the mask every night.

I'm having such a hard time putting into words exactly how I'm feeling. I am so used to being an advocate for him and the boys. I jump right in with encouragement and I'm not afraid to speak up for him when he can't. It's one thing to finish a sentence for him when he can't remember a particular phrase or word because of his ADHD. It's an entirely different beast to tell the nurses what symptoms he is having because he is too upset to put it into words.

Rob is the father of my children, my best friend. The love of my life. He's stubborn, and moody. He's loving, and full of affection for me and our children. He compliments me in every way. I'm not afraid to fight or argue with him because I know he isn't afraid to step up and work it out. He works so hard for our family. I cannot imagine what I would do without him.

He is the best father in the entire world. From doing the little things like laying on the floor with Tommy after work for a few minutes or playing video games with the boys, to the really important stuff like taking on the responsibility of another man's child or comforting me when we thought we'd lose Tommy. He doesn't back down. He does things in his own way and sometimes I disagree, but I have to remind myself that he is not me and our children need different things from each of us. He gives our kids that Big Kid to rough house with and burp with. He gives them that firm hand when they cross the line and remind them to respect their mother.

He is sunshine, he is air, he is the blood in my veins. My love. I wanted to dedicate a song to him to let him know just what he means to me. I chose LeAnn Rimes' song "I Need You". Tonight, I played the song for him while I held his hand and cried. He is so brave. He's kept his sense of humor. I know in a few weeks when he's back to work and back to wrestling with the boys that he's going to look at me with "that" smile and I will burst into tears of happiness and thank God above for rescuing me from living alone.

Sunday, April 27, 2008

Message from Tommy

We had a long night last night. Tommy had a hard time keeping his oxygen saturation levels at a level that his doctors want. We were up most of the night with alarms going off. Tommy looked and acted fine and wasn't in any danger, but we were concerned and he was checked out by ENT and cardiology this morning. He's doing much better after a nap. I am too. We both slept for quite a bit this morning.

Here's a little message from Tommy. The spot on his chest looks like it's horrible but actually it's just old blood on the steri strips and it's covered with a clear bandage. It's actually not bleeding at all, but we don't want to change it until the steri strips are ready to fall off on their own. As you can see in the video, he is not distressed at all.

Saturday, April 26, 2008

We've made it to the floor and he's feeling okay! I had to go find some toys because he was really, realllllly bored!

He's doing well and we're still probably going home Monday, possibly Tuesday. I'm glad we're having some peace and quiet. No more ICU beep, beep, beeps. I don't see how anyone gets well in an ICU. It's one of the noisiest places I've ever been in the hospital. Tommy could been in the cafeteria at lunchtime and had a better chance at resting!

Now that this big procedure is behind us, its time to start gearing up for HEART SURGERY! Gotta love Tommy and all his scars!

Friday, April 25, 2008

Successful day

Tommy was extubated right away after surgery. He's getting morphine as needed. Honestly, he looks like nothing happened. He has a small incision on his chest and he has a tiny drain on his neck that resembles a rolled up bandaid.

I'm home for the night because he is in great hands in the PICU. Tomorrow he will move back to the regular floor and then after his drain is removed on Monday, barring nothing else comes up, we will most likely be discharged.

I've been awake for about 38 hours at this point. I've been updating everyone under the sun and I still have a couple emails to write. I hope I make it!

Tommy is in surgery

Tommy went back about an hour ago. Here are some pictures from last night and this morning.

Last night, getting ready for bed. His big brother loaned him the bear!

Waking up this morning

A quick shot before they wheeled him into surgery.

We've Been Admitted!

We've been admitted! We got here around 8 p.m. and it's been a fight ever since. He came in with a slight fever that went down after he calmed down. Then came the dreaded IV. Once that was done and they drew blood it was time for a xray. I finally had him calm and his nurse came to tell me that one of his blood samples had clotted so they had to redraw. Thank goodness he had IV access, so no more sticks.

Then after that fiasco, I asked if he could have a little Pedialyte for his tummy to help him sleep. They brought the Pedialyte but no pump, so the short window we had to feed him passed. He was admitted for IV hydration (fluid by IV), but they couldn't get a pump for that either! He finally got that started about 10 minutes after 1. Now it is about 1:30 in the morning and we've finally finished getting him settled in for the night. Honestly! 5 hours to start an IV, take labs, and get vitals???

Now to get him to fall asleep. I'm pretty sure he's going to be up for a while.

Wednesday, April 23, 2008

Admitted Tomorrow!

We've had a fantastic week! Tommy is in great health and there is nothing standing in our way medically. Today we met the President of Palmetto Hearts, which is our local heart organization. Her name is Leslie Ballard. She brought a care package for Tommy and me to take to the hospital tomorrow. She also brought Tommy a really cool toy phone and Matthew and Brandon each got a blanket from Project Linus.

Tomorrow afternoon the older boys have doctors appointments and then we are headed home to wait for the call to bring Tommy in! I'm scared, nervous and excited about everything that is about to happen. My mother in law is coming down for a week to help us out. I hope she is able to leave on time so that she can be here for the actual surgery. I will update when I can.

Wednesday, April 16, 2008

The Long Road to Decannulation (Getting out his Trach tube)

With Tommy's surgery just a little more than a week away, I wanted to explain a little about how things might go. He will be admitted to MUSC on Thursday, April 24 sometime in the evening when a bed is available so that he can receive IV hydration. Then Friday morning, he will go to the OR where Dr. White will perform a procedure known as a double staged Laryngotracheoplasty. LTP for short.

Here are a couple of good websites that explain it well. These both explain the single stage, in which the trach tube is removed after surgery. Tommy is having the double stage, which just means keeping the trach and taking it out a later date.

Basically, Dr. White will take a section of Tommy's rib cartilage to use as stents in the airway. He will then remove the scar tissue in Tommy's trachea, essentially forming a new airway. He will then use the stents to hold open the new airway until his trachea heals. Tommy will be in the ICU for at least 7 days following the surgery. Tommy will NOT be getting his trach out as a result of this surgery.

Approximately two to three weeks after he is released from the hospital, we will return for another admission. Tommy will go back to the OR to have the stents removed (probably through the mouth, so no more incisions). He will stay for a couple of days observation. Here's where things become blurry. We will need to wait another two or three weeks to see what his airway is going to do. It could collapse, form more scar tissue, or simply stay open and patent.

At this time, Tommy will need another trip to the OR for a good look around at his new trachea. This will also be about the time we are ready for another heart cath, and eventually another heart surgery. Heart surgery, or rather intubation for the surgery, is what caused the scarring in his airway to begin with, so I'm very hesitant about moving forward with having his trach removed until we're out of the woods with his next heart surgery.

Back to the trach. Once we have the all clear and his trachea holds up on its own, he will have a cap placed over his trach. This will cause him to breathe through his nose and mouth instead of the trach. He will be able to taste and smell for the first time! The goal is to move up to wearing it during all waking hours for 30 days. Once this goal is reached, then we can move on to actually having the trach taken out. This is called decannulation.

It's a long, drawn out process, but it gives us the best case scenario to make it to our goal of getting out the trach. Especially if we are factoring in heart surgery somewhere along with this ordeal. Even with it taking so long to reach our goal, we will get a small reward. After the first surgery, Tommy will be able to find his voice! I'm looking forward to hearing those first sweet sounds in the next few weeks more than anything!

Tuesday, April 15, 2008

Weee! Look at my big boy!

Finally! Look at him go!


Sunday, April 13, 2008

Tick Tock!

Only 11 more days before Tommy is admitted to the hospital for his surgery! This surgery is a reconstruction of his trachea so that sometime in the future (but not right now) he will be able to have his trach taken out and he will be able to breathe without it.

Tommy will be in the pediatric ICU for a week after the surgery. He will need several follow ups after that. He still also needs heart surgery, so I am hoping we can do heart surgery before we take the trach out. That way he doesn't have to have a breathing tube put down his nice, new trachea.

His admission date to MUSC is going to be April 24th, followed by surgery the next morning.

Friday, April 4, 2008

Tommy's Latest Trick!

Check out my smart boy! He's getting so big!

Wednesday, April 2, 2008

New Lungs!

Tricia is getting lungs! She's being prepped for surgery. You can follow their story by clicking HERE:

Organ Donation Month!

April is Donate Life month. Please consider making the change in your life to become an organ donor. After meeting so many families that have had a child saved from organ donation, I decided to become an organ donor myself. Please visit the following website to find out more about organ donation in your state. It has the answers to many questions you may have about organ donation.

Diagram of Tommy's Heart Defects

Diagram of Tommy's Heart Defects
Double Inlet Left Ventricle with Transpostion of the Great Arteries