Friday, August 30, 2013

Ready to bust out of here!

In Colin's own words.. "When my picture looks better, I get to BUST out of here"! 

Colin's chest x-ray has been looking better and better each day, the fluid in his chest is starting to come off with help of the IV diuretics, just not enough to be able to leave just yet. Today they decided to add a 3rd diuretic to see if that helps speed up the process. The doctors are trying to decide how much is okay to go home with and treat at home and trying to get a mix of the right combination and amount of diuretics to get the fluid off and to prevent it from building back up again. 

At this point, we are not having to put a tube in since it is draining on it's own. But there MIGHT be a chance that if it does continue to barely come off, then we might need a new game plan. 

Today they let Colin go off the floor since he is acting 120% normal and very active (maybe they let us leave for awhile since Colin is running around the floor, maybe they need some peace and quite). So Colin rode the escalator in the lobby about 20 times, went and got a haircut (on the 16th floor they have a stylist that cuts hair for free), made wishes in the fountain, and stood on the skybridge to watch the train pass by below. We have of course done our normal laps around the unit. 

The nurses and doctors keep noting this does NOT look like a kid who is in here for fluid issues!! We have come to find out that the amount of fluid Colin had on his chest was actually very large and was pushing all around his lung, Colin is just too strong of a SUPERHERO to let it slow him down. He did not and has not shown any signs of being in distress due the fluid. So glad we had a check up and they caught it before it got him in serious trouble. 

The thought of why the fluid built up.. Colin's x-ray the other week looked "AMAZING" so they cut down his diuretics. This decrease in medicine allowed for the fluid to build back up. This just means Colin will need to be on diuretics just a little bit longer and have to take it slower on decreasing the medicines.  

Colin's heart looks great, so as stressful and boring being back in the hospital, we are very thankful for being here JUST for fluid issues and NOT heart issues!
Morning x-ray
Watching the light rail go by.. some freedom from his room
Escalator fun, over and over again
Getting a much needed haircut, it has been 2 months
My wish is to get OUT of here!
My mom put me to work answering her emails

Wednesday, August 28, 2013

Admitted to Texas Children's Hospital.. Fluid build up... BOOOO!

Yesterday was Colin's 6 week post op check up with cardiology. We were expecting to be lifted on a lot of his restrictions and to get back to pretty much our normal lives and routine... but Colin's body had other plans (the complete opposite really).

But before I get into how we ended up with a room on the 15th floor (Cardiac step-down unit), the GREAT NEWS is Colin's heart function looked great and no leaking in his valve! Colin's Fontan surgery is serving his heart really well. And we are very very thankful for that!

OKAY.. So Colin's echo and chest x-ray showed a build up of fluid. Colin had a chest x-ray 10 days before that looked "amazing", so they went down on his diuretics. But with that decrease of medicine, the fluid has been accumulating without us knowing. When we got discharged from the hospital, they gave us warning signs to look for fluid accumulation: tiredness, labored breathing, changes in his color. Colin exhibited NONE of those warning signs, he has actually been bouncing off the walls, full of energy. Even his doctor was shocked after seeing the x-ray and watching him RUN around the room as pink as can be.

So the decision was to be admitted and put in an IV to give him IV diuretics which are much stronger than the oral ones he was taking and to increase the amount he is on. There is a chance that if it does not clear up with the meds, a chest tube will need to be put in to help it. Colin is food/water restricted this morning just in case the tube needed to go in. We are waiting on them to make a decision on that.

His O2 sats when we were in clinic yesterday were at 92, then we came to the floor it was 94.. but overnight he was hanging around 88, so this morning they have him on a low does of oxygen through a nasal cannula.. which he is pretty mad about having. But the good thing is they just have it resting under his nose at this point and NOT taped down and in his nose.

Fluid is a common problem for post Fontan kids, so this is not really a shock to us considering we spent 25 days here because of fluid, but it has been a blow back to reality that Colin's body is still trying to recover from surgery even though he looks and feels fine and is ready to get back to his normal life, it is just going to take us longer.

A Few prayer request:

1. PLEASE PRAY that the IV diuretics quickly solve his fluid problem and we can be home very soon.
2. That he does NOT have to get a chest tube again.
3. That this does not break his spirit having to be back in the hospital yet again, because it has broken mine just a bit. I have to admit, I cried when they admitted us back in.
4. His O2 sats are just low due to fluid and that once the fluid lowers his O2 goes back up

Sunday, August 18, 2013

Getting back to normal and surgery update

We have been home a little over a week now and it has been great (but not without some challenges). I am amazed that Colin just 4.5 weeks ago actually had his heart stopped (when they worked on his valves) by his team of doctors! You would never know looking at him know and the energy he has! We are truly blessed and are oh so grateful!

Friday Colin had a check up with the surgical team. Colin has two teams that look after him, surgery and cardiology (Cardiology appointment at the end of August). His scars are healing wonderfully, his chest x-ray looks "amazing" and his heart sounded good! He O2 sats were at 95, according to the Mayo clinic, it is a normal range for anyone. Great for a kid with half a heart. All great things to hear. We are awaiting on his blood to work to see if we can start weaning him off some of his diuretics. 

His original date for cardiology appointment was set for September 10, but they are trying to move that up to be 6 weeks post op (which would be August 27th ish). At that appointment we are supposed to 1) Get off the fluid restrictions (I hate telling a 4 year old in the summer, no, you can't have anymore water, he has become obsessed about drinks) 2) wean off more of his diuretics 3) Get echo to check his heart 4) Get lifted on his sternum precautions 5)And maybe just maybe be switched off the NO FAT diet to LOW fat diet. I am crossing my fingers on this as it would be SO MUCH EASIER! NO fat is getting pretty hard and is causing a lot of stress between Colin and me (somewhat of a power struggle). He of course wants things to eat that he can't eat.. CHICKEN.. he is growing tired of the same bland no fun foods. And as much as I try to make it interesting, he is counting down until "I can have regular food again and no more no fat food" (and I quote). 

Even though the diet and fluid restrictions are challenging and stressful, they are a nuisance, they are no reflection of Colin's heart and the success of his surgery. I am amazed at Colin's strength and how he has bounced back. He runs around and is not out of breathe anymore, he is no longer turning blue from lack of oxygen in his body. He is a little more mature, he kinda had to grow up in the school of hard knocks. I see great changes in him. He amazes me everyday.

Katherine went to Colin's appointment for the 1st time, usually she is in school. She was so good about keeping him entertained. She is the most amazing big sister ever. She even cried when they would not let her go into the chest x-ray room. She didn't want to leave his side. She is so protective over him. He is so lucky to have her and we are so lucky that she has a heart of gold!

So we are moving on with our lives, trying to get back to "normal", whatever that means. School is starting in one week, we have meet the teacher this week. I took Katherine shopping this weekend to get new shoes and school supplies. Sad to see summer end as we did have some fun times, but ready for the fall and ALL the adventures to come! I have a work trip to Scotland in a little under a month, not sure if I am ready for that!
Colin LOVED helping Matt mow

Katherine had to help to once she saw Colin doing it and in a dress

Sunday, August 11, 2013

And we are home!

We have actually been home all weekend!!! I am just now getting a chance to sit down and catch up on the blog. Friday morning Colin's x-ray showed a decrease in fluid, enough to let us go home!!!!! 25 days after Colin's Fontan, we got break out of the hospital. We got the news at 8:30am that we were going home and finally got our walking papers at 1:00pm. Colin was super excited and also bouncing off the walls wanting to leave. Each time a doctor came in to check him out, Colin would grab his shoes and say let's go, hard to explain to a 4 year why it takes a hospital almost 5 hours to let you go home. Colin was smiling ear to ear on the way to the car, and so was I! 
I did explain to him though we have a check up at the hospital on Tuesday, so we will be coming back in just a few days. When we go on Tuesday, he will have another chest x-ray to make sure the fluid is decreasing and not increasing and they will be looking to take the stitches out of his chest tube scars. Colin was sent home on 3 medications ( 2 diuretics which are temporary - he will just be on them just they get complete control of clearing out all the fluid in his chest, then he will weaned off of them) and then his normal daily dose of aspirin. Colin also came home on fluid restrictions to help dry him out more, he can only drink 28 ounces a day, so that is a challenge. At Tuesday's appointment, we will get a better idea when he will be allowed to drink more and when we can stop restricting his fluids.

After heart surgery, the breastbone is wired together and limits Colin's activities for 6 weeks. Tuesday will make 4 weeks since surgery, so we still have 2 more weeks of NO playgrounds, swings, trampolines, Wii (because of the arm movements), pushing or pulling, throwing, lifting up by the arms, and no public places. He was heartbroken coming home there is no Wii and no air hockey for right now. Colin will be able to swim once the breastbone restrictions have been lifted AND the chest tube scars heal over.

Of course Colin still has 5 weeks left of his mandatory no fat diet (we are counting down until Sept. 13 - when we are ordering pizza, cheeseburgers, cake, cookies.. we will all get fat that day). Yesterday Matt went to the store to load up on all fat free items for the house. Colin is now trained to ask before he eats something "is this fat free mom?". And Katherine is the fat free police, if she sees Colin eating something, she questions us to make sure we only gave him fat free food. It will be an interesting 5 weeks. My mom made him a black bean, rice, sweet potato, oatmeal cheeseburger and it was actually pretty good. Colin ate half the cheeseburger and some homemade fat free fries. It is doable, it just that some thought to really plan out meals and try to come up with kid friendly ideas.

Matt's parents helped us clear out of the hospital and my parents met us at the house with Katherine. Both the kids were thrilled to have everyone home again. The kids partied it up Friday night on Katherine's karaoke machine. Saturday we did a lot of chores around the house since no one has been living here for almost a month, lots of cleaning to do. Then we went to my brothers for dinner and have some wine, kick back, let the kids play, and just enjoy a "normal" Saturday night.
Welcome home hugs
We needed to add fun back into our lives
Break it down

 We are very blessed to have Colin home, to have our family back together in one house. I am ready for normal life to begin again. This was by far the hardest emotional month I have ever had. It drained all of us in a lot of ways, now it is time to rejoice in the gift of Colin's heart. Please pray that the fluid goes away without of having any more hospital time. Please pray this is Colin's last surgery ever needed! This weekend was amazing to have all of us together, in our home.. to be able to smile, laugh, play, cuddle, sing, dance, and be silly. These things made the 25 day struggle worth it. And soon it will all be faded memory. 

Thank you all who came to visit us in the hospital, for those who sent care packages, helped out watching Katherine. Thank you for all those who have been searching far and wide for fat free kid foods. Thank to my wonderful co-workers that sent us food and money to help pay for the ridiculous cost of parking. We are so blessed to have such wonderful friends and family in our lives.

Thursday, August 8, 2013

And it's out, no more chest tubes!

Colin got the last of his chest tubes removed this morning! YEAH! It has been a long time in the making! We found out yesterday that his drainage was pretty low and if remained low over the course of the day and night, it would be pulled in the morning. I didn't say anything except to family so we wouldn't get our hopes up. This morning at 8:30am they came and pulled the tube out at bedside. It was a rough morning since he woke up at 6am wanting something to drink and could not have anything until they pull the chest tube and he got chest x-ray (which was about 9:30am).

BUT YEAH!! We are chest tube and IV free now! Colin has nothing on him at all!!! He is only on 2 medications (diuretics) and one full baby aspirin. He is no longer on enalapril and they are thinking of not having him on it anymore.

The plan is if his chest x-ray looks good in the morning, then we could be out of here by early to mid afternoon tomorrow! That's right we might be on our way home! Tomorrow will make 25 days since the date of his surgery. Though our recovery was a little longer than expected, Colin is doing so good and his heart is doing excellent. It is well worth the 25 days in the hospital to have his heart not having to work as hard.

He still has 5 more weeks of the fat free diet, but we are trying to make do. We have a wonderful army of family and friends scouring the grocery stores for kid friendly fat free foods and researching fat free kid friendly recipes.

We have had a great amount of visitors and friends stop by in the last few days to help keep Colin entertained. This 4 year old is so over being here and has amazing amount of energy and just keeps going and going and going, so it's great to have friends his age come by and burn off some of that energy. Colin has been flirting with all the nurses.

Please pray that his x-ray looks good in the morning and we can head out of this place. As much as I love this hospital, they have given my son an amazing shot at life, it is time for us to go home and be a family together all under the same roof. Colin said when he gets home he wants to play with the dog then have the whole family play Wii together, I think we can make that happen.
A game on Jenga with daddy
Rocking out in the play room
We love visitors

Friday, August 2, 2013

One down, One to go! Step Down update # (I lost track)

Yeah big day.. Colin got 1 of his 2 chest tubes removed!!! One step closer to going home. Once the  other stops draining, it will be pulled, and we can go home about a day or two later! Though it was a successful day, it was a LONG day. Since they had to fit him into the surgery schedule, they did not let him eat or drink but a few ounces of apple juice for the WHOLE day!

Colin did really well considering the circumstances, he did have a few screaming fits about wanting to drink water. "Mommy, please just give me some water, I am so thirsty." I am very thankful for the grandparents being here, they were great distractions! So they took out the left chest tube and added a few stitches into the right just to make sure it stays secure. They also gave him a dose of antibiotics since the left one was a little irritated just to make sure.

Now that his fluid tested positive for chylous effusion, he is now on his FULLY FAT FREE diet. The dietitian came and spoke with us today. It is not impossible but will be somewhat of a challenge. We will just have to be creative. The hard thing to realize is no chicken or pork (which he loves). Colin eats and loves chicken but chicken has some fat to it, so it's a no go. He can have no fat lunch meat and hot dogs. There is a way to make no fat spaghetti and they do have fat free cheese, tortillas, and refried beans. After getting his tube out, he had his first completely fat free meal.. turkey, cheese, yogurt, grapes, and peaches.

The doctors said now that they know he has chylous and is on the fat free diet, the fluid should really start to clear up and stop draining and then we can GO HOME!!!
They put this sign on the door since Colin was so agitated about not getting to eat or  drink and it was supposed to stop his food from being delivered, but guess that lady could not read
Colin gave up on crying about food and drink and decided to take a nap
Colin right after getting his tube out, he did amazing!
Colin enjoying his fat free diet

Thursday, August 1, 2013

Slight set back

Colin's fluid draining came back positive for chylous effusion.

EXPLANATION: Sometimes the fluid draining from the chest contains fat, lymph. If the pressure within the chest area is high after surgery these vessels can leak fat into the chest, a chylothorax. 

WHAT IT MEANS: Starting tonight and for AT LEAST the next 6 weeks or more, Colin will be put on a STRICT low to no fat diet (they will discuss with us tomorrow) to help get rid of the fat that has leaked into the chest cavity. It does not slow down our process of going home, it is going to be a WHOLE new way of what he can and can't eat. He will be followed up through chest x-rays, once it is cleared up, we can introduce fat back into his diet. 

TIMELINE OF GOING HOME: No time soon, Colin is still having too much output, it is slowly decreasing but not enough. I joked with doctor about next Wednesday and she kinda laughed and not in a good way. They are not concerned that he is draining slowly, it just happens to some kids and we have to wait it out. 

He is getting one chest tube out tomorrow since it is barely putting out and it is a little red and irritated. The problem is they are going to squeeze us in sometime but he can not eat or drink after 4am in the morning and they might not get him in until the afternoon, so I am going to have one very pissed off 4 year old tomorrow who is going to be begging for food and water and I have to tell him no. Please pray that we get soon sooner than later! 

It was a little hard to take the news today as Colin has been eating the BEST HE HAS EVER EATEN and LOVES food now and is wanting to eat. BUT the things he loves, the things he is eating is all stuff he will not be able to eat on this new diet. We have a meeting with the dietitian tomorrow to get more explanation of what he can and can not have and how to introduce this diet to a 4 year old. But I know some other mom's who have gone through this, so looking for them on advice on what worked well. Colin will loose weight on this diet, then we will have to work to get the weight back on him after this. 

So a tough say but the good news is his heart is doing good and this just means a little harder recovery than expected.