Home at Last

Wow, what a week! The start of the week was fine. Brett was getting various drugs and spent a lot of time sleeping. You could tell he was very happy to be home.

Brett is a champ. His stomach does seem to bother him quite a bit, but otherwise doesn't appear to be in any pain. Nothing that a little Ibuprofen won't fix. This amazes me since his chest was split apart only a few days ago.

We headed back to CMH Thursday morning for some blood work, X-rays and a checkup. They removed Brett's dressing and we were able to see his incision for the first time. Not as bad as I thought.

At this point I think someone switched my baby with a 13 year old girl. The kid is an emotional wreck! He is all smiles and giggles one minute and the next he is in tears. These aren't typical breakdowns. These are the end of the world, nothing will stop me from crying fits. And they can be caused by ANYTHING. Medicine, a wrong look, a point of the finger, the sight of his car seat, the list goes on and on.

I always knew that Cody and I were too lucky when it came to Brett's sleeping schedule. He has slept through the night since we stopped waking him to eat (4 weeks). Not the case these days. He never really wakes up, but the night is full of screams, tossing and some tears. He is moved to our bed before the night is over. I know it's not a good habit to start, but I need some sleep.

These are all very minor changes in our daily life and I know we are blessed if this is the worst of it. I'm sure he will be back to normal quickly. Each day we are from surgery, I see an improvement. I'm just glad to see the smiles and hear the giggles that I know and love.

Tetralogy of Fallot

As I was reading the comments friends have left over the last few days, I noticed that I never really explained what Brett's heart defect was.

So, I'll give it my best shot. Please keep in mind that I am not a doctor and I've pieced together information we have received from several doctor visits since his birth.

Brett was diagnosed with a Tetralogy of Fallot. This is a series of four structural defects including: a ventricular septal defect (VSD), an overriding aorta, a hypertrophic right ventricle and pulmonary stenosis. All of this fancy talk just means that there is a hole between the lower chambers of the heart and the aorta is incorrectly growing from both ventricles, rather than exclusively from the left. In addition, the pulmonary valve, which connects the heart to the lungs, is smaller and obstructs the blood flow to the lungs. Lastly, the right ventricle works extra hard and the muscle surrounding the lower right chamber becomes thickened.

We knew prior to Brett's surgery that he did not have the overriding aorta. However, he had an additional hole between the upper chambers of his heart (ASD). Entering the surgery we anticipated that both the ASD and VSD would be closed. In addition, we expected that the pulmonary valve would be enlarged and that a portion of the right ventricle would be cut away to allow blood to flow to the lungs more easily. After surgery we were told that only the ASD and VSD needed repair.

Again, I will reiterate that I am not a doctor and I may not have all the facts straight.

Headed Home

So the nurses came in this morning and pulled the drainage tube out of Brett's chest and removed both of his IV's in his hands and told us that he would be heading home as soon as all of his discharge paperwork is done... I can tell you that we are completely relieved. It is amazing that this little man could go under on Thursday and have open heart surgery and here we are on Monday of the next week getting our discharge paperwork filled out.... this little guy just keeps amazing me in his strength and ability to heal so quickly!!!

We appreciate all of the prayers and thoughts during this tough time!

Thanks,

Cody

Freeeeee... kind of!

We have finally been released from the PICU!!! The nurses removed the IV line from Brett's neck and he has been removed from all IV fluids. This afternoon he was moved out of the PICU and to his very own room here at Childrens Mercy. Visitors welcome... as long as you are healthy!!! Just ask for the coolest guy at CMH and they will bring you up!

Thanks,

Cody

Things are still going great. The breathing tube, feeding tube, restraints, cath and arterial line were all removed yesterday. All Brett has left is a few IVs and his drainage tube. Cody and I were both able to hold Brett yesterday afternoon.

Being able to hold Brett was amazing. He seemed to feel safe in our arms and fell asleep rather quickly.

He is trying to babble and cry, but his voice is still gone. They are pumping him full of steroids, so it should start to return back to normal rather quickly. His eyes are clear and he definitely knows we are there with him. However, his eyes do seem to say "get me out of this place." We are waiting on one last drug to be stopped before moving his to the regular floor. They said it would take awhile for the docs, surgeons and nurses to get the logistics figured out, but he should be moved late this afternoon.

Same Story Different Day

Nothing new to report. They are still working to get Brett off the vent. They suggested that Cody and I head home to take a warm shower and sleep in our own bed, so we did just that. Brett has a 24 hour nurse while in the PICU, but when moved to the floor will only have someone stop by every hour or so. Based on the discussions with the nurses and some other great friends that have been down this, or a similar, road, we thought this will be the best time to recoup. Grandma Cindy stayed at the hospital, so Brett would still have someone to hang out with.

They were hoping to remove his breathing tube last night, but I didn't receive a call from the hospital (I asked that they call if they make any changes), so I'm assuming it didn't happen. Here is to hoping that it gets done this morning and Brett is moved by late afternoon.

It is great reading everyone's comments, keep them coming. I'm off to the hospital!

The Progress Continues

Brett is still doing well. They took out the pace maker wires this morning, cut back on the number of medications he is receiving and are working to get him off the vent. He is trying to move around, but they currently have him tied to the bed. Hard to watch, but better than having him pull out one of his tubes.

A few minutes ago, he opened his eyes when I spoke to him. According to the nurse, this was the first time they've been open.

Once he is awake and breathing on his own, they will remove the vent. A few hours later we should be able to hold our little boy! They were hoping we would get to that point tonight, but we are thinking it will be tomorrow morning. Fingers crossed!

Time to Rest

Everything went great (as great as things can go when you're having heart surgery) yesterday. Cody and I were finally able to see Brett around 12:30. We knew he would be full of tubes, but I don't think you can ever really be prepared for what you are going to see. However, it was nice to see that Ernie is still a vital part in Brett's care.

The strangest part was that Brett did not repond to our touches or words. Where is the little boy who is constantly smiling and "talking" to you? I'm sure he will be quick to return and right now he needs his rest.

Cody and I were able to get a room at the Ronald McDonald Family Room. Not real comfy, but I'm sure it was better than sleeping in the waiting room. Cody may not agree with that statement as he volunteered to take the mat on the bedroom floor and let me have the bed all to myself. What a guy!

We greatly appreciate all of the prayers and goodies we've received from everyone over the last few days. It's great reading everyone's comments. Cody and I have enough snacks to feed an army and will have a freezer stocked with food when we return home! I think that we have the best friends and family in the world!

Ready, Set, Go!

Brett was such a big guy this morning. Once again, he was given a pretty sweet hospital gown to wear. We were fitted with matching hospital bracelets (Ernie even got one) and met Brett's nurses.
Brett and Ernie were taken from us at 8:15 this morning. I'm glad that Brett was able to take his best buddy with him. Handing him to the nurse was probably the hardest thing I've ever hard to do. I guess that's just part of being a parent.

The surgery went faster than expected. Once he was open, the surgeon decided that some of the problems originally identified weren't as major as anticipated. Therefore, they only ended up closing the two holes in Brett's heart. They assure us that they other issues will not affect Brett's blood flow going forward.

Cody and I are patiently waiting to see Brett. They are working on closing, which should take another hour, and will then move Brett to the PICU. Once in the PICU, we will have to wait another 45 minutes before we are actually able to see him.

Thank you for all of your prayers this morning!

It's Not a Dress, it's a Hospital Gown!

We headed to CMH this morning for Brett's preadmission testing. He had the normal height, weight and fever check. We expected that he would have an x-ray and blood draw, but we didn't expect the blood draw would be from his head! Brett did very well and only shed a few tears. Oddly enough, he only cried when the nurse actually looked at him.

The best part of the entire morning was the hospital gown that Brett got to wear. Who knew hospital gowns came in such small sizes?



We ask for everyone's continued prayers. We will head to CMH tomorrow morning and Brett is scheduled for surgery at 7:00. We hope to keep everyone informed by updating the blog on a regular basis.