Wednesday, July 31, 2013

Radio Star Katherine and Race Car Driver Colin - Step Down Update # 8

I have been updating my Facebook page but have slacked on the blog. Colin update: Still draining, that is ALL we are waiting on to go home. Once his chest tube drainage slows to about 30-50 cc's for a 24 hr period, then we can pull them and go home in about a day. We ARE slowing down but in a 12 hr period today he drained 60 cc's. So the last guess on when we are going home that I heard is Saturday, but I am not too confident on that. 

We are very very blessed that Colin is doing so well, that besides drainage (which is expected and Colin is just taking longer but is no concern) that his surgery has been a success, that he is eating BETTER than before the surgery, that he is getting up and playing everyday. There are many kids in this hospital that are not as fortunate. 

But it is hard to be living here, we were only expecting to spend about a week and half in the hospital and it might end up being 3 weeks. It is taxing on all of us and we ARE ALL ready to get back to our normal lives. Today Colin said in the sweetest voice "Mom, I can't wait to get out of here and go home, once the doctors take these things out of me". 

Matt and I spent last night with Katherine and took her to the neighborhood pool, out to dinner, played in the backyard, Skyped with a friend, and watched Teen Beach movie for the 10th time. It is important for us to spend time with Katherine too as this has been hard on her as well. 

BUT as long as we are living here, we are making the best of it. Today we racing around the unit with our remote control car and Katherine came up for Radio Lollipop. It is a program they have 3 nights a week, where you can talk on the hospital radio station and they open up the teen room for all kids to play. Katherine had a blast talking on the radio (Colin was not interested) and Colin had so much fun playing the arcade games (even some good old Pac-Man and Donkey Kong). They really do try to make the hospital experience as fun as possible. 

Katherine found her calling
Colin watching and listening to sissy on the radio, he did not want to talk
Her radio name was "Kit Kat"
Colin the race car driver
Daddy teaching Colin some old school games
Might need to grow a little for this one

Sunday, July 28, 2013

Still waiting ... Step Down Update # 7

Yes, we are still in the hospital waiting on the fluid to stop draining. They decided today to get more aggressive with the amount of diuretics Colin is taking to hopefully dry him up sooner. He is now taking 3 different ones, we are hoping to see fast results from this. Good news is that they are happy with his sodium levels so we stopped the sodium "saltwater" solution. Colin was really excited about that since he hated it and cried when he would see it!! 

We are very blessed that all of Colin's tests have come back with great news and that his surgery has been a success so far. Just wish we were feeling blessed at home as we are coming up on 2 weeks of living in a hospital. I think we are ALL getting a little stir crazy.

THANK GOD for our wonderful visitors that have helped keeping Colin entertained! Thanks to both set of Grandparents who have watched Colin while Matt and I went and spent sometime with Katherine away from the hospital. Thank you for all our family who have taken turns watching Katherine and busing her up to the hospital, she IS Colin's BEST medicine, he has his best days while she is here. Thank you to my brother & sister in law for bringing our nephew up here to play and distract Colin. Thank you to our friend Erika for bringing her son Zach (who is in Colin's class) up here to bring presents and play for awhile. Thank you to a fellow heart mom, Holly, who brought Colin a present yesterday, he loves it! Please keep her daughter in your prayers as she is having her Fontan in 2 weeks.

Last night Matt and I took Katherine out to dinner, to one of her favorite stores (Barnes & Noble), and rented a movie. When we left dinner, we got caught in a huge rainstorm and got drenched. The kind of drenched that you couldn't just help cracking up because you are getting so wet. We all were laughing on the way to the car. As corny as it sounds, it was like a message from God telling us it's okay to laugh and have fun now, we are hopefully now on the downside of all this stress and hard times.
Colin and his friend Zach having car races around the unit
Matt and Katherine sharing dessert last night
Katherine and Colin having a "picnic" in his bed
Having a lazy Sunday in the hospital, if Colin cant come home, home will come to Colin
Katherine and Colin playing "doctor", Colin is an expert at that!

Friday, July 26, 2013

A day in hospital life - Step Down Update #6

Not too much to report, still waiting for the fluid to drain out of one of Colin's chest tubes. The other one is ready to be pulled, once this other one is ready, we can go home. They are going to treat the fluid a little bit more aggressively to try to get it to finish draining. They have limited him on his liquid intake and have increased his diuretics to help draw off the fluid. There is still talk of maybe pulling the other tube or waiting to do them both at the same time. 

Today they went ahead and did the exit EKG and echo on his heart JUST IN CASE we are ready to be  discharged this weekend, that way the test will already be complete. Both test looked great along with his chest x-ray this morning. So from a cardiac standpoint, we are in good shape, just playing the waiting game on the fluid. They are still monitoring his sodium and he is still taking the saltwater solution to keep it up. Right now it is just below normal, but they have decided this will not keep us here. The rounding cardiologist thinks it is stress from having the tubes. Once they are removed, if it does not level out, we can investigate further from an out patient standpoint.
Being really good during my EKG
Making sure she does my ECHO right
Last night Matt and I spent the night at home with Katherine. It was great to spend time with her, we hung out and watched a movie, and cuddled in bed. I miss her so much. I am so ready to have all 4 of us home together again, where we belong. Katherine was very sad to be home with us without Colin. This has been really hard on her.

So right now it is really about keeping a 4 year occupied in a hospital, it has been one week since we moved out of ICU into our regular room. So here are the things that keep us occupied:
Car races, on your mark, get set, GO!
When I get tired, have sissy push me around
Hang out with Daddy on the couch playing my LeapPad
Eating breakfast in bed
Doing about 20 laps around the unit a day in the cool firetruck
Art and crafts time with mommy
Get a sponge bath

Wednesday, July 24, 2013

Colin is doing great.. mommy needed the doctors - Step Down Update # 5

Let's start with Colin first... Not too much to report, still playing the waiting game on the fluid draining. It has decreased day by day, we are almost to the point of getting the tubes out, estimate of getting them out maybe on Friday, then going home this weekend.. MAYBE. Hospital time lines can always move in either direction, so you just have to go with the flow. 

His sodium levels are almost back up to normal, so that is great news, so the sodium solution he is taking is working. All other labs are coming back normal, which is also great news. He is eating great actually and asking for food. Colin walked lots today, played in the playroom, even got to go outside the hospital and walk on the sidewalk and get to breathe the fresh air and see the sunshine. Our nephew came to play with Colin today, he loves to have visitors to play with. Both grandmas came and hung out today as well. 

So we are just waiting on fluid to drain and trying to keep a 4 year old entertained who is SO ready to go home! 

This morning, they were drawing a good amount of blood for all the labs. I can handle the finger pricks but this morning they had to use a needle. I have a long history with needles and fainting.. after they drew the blood, I passed out. Well the nurse told me I actually passed out 3 times and looked as if I was having a seizure. I was fine, my dad came up to the hospital to sit with me until Matt could get off of work. My dad took me home, I ate, had a long bath, and a nice nap in my own bed. I had not been home in 8 days,, guess it was a needed break for me. I got back up to the hospital after a couple of hours. So all the nurses know me now :) 

Cousin love
Riding in the elevator to go get some ice cream
Who doesn't love ice cream!!

Tuesday, July 23, 2013

WE HAD A GREAT DAY - Step Down Update # 4

Holding hands while take a ride around the unit

We are now one week POST FONTAN! We waited 4 years to say that! Colin had a really good day overall. This is by far his best day acting like himself and playing. Of course it is great medicine to have big sis around half the day, she really brightens him up. 

We are playing the "waiting game" with his fluid on one of his chest tubes. It has decreased a good amount over the last 3 days, but still needs to come down some more. One tube is ready to be pulled, but they are waiting to do they at one time. They have tested the fluid coming out of his tube to make sure he does not develop Pleural Effusions (this is a complication after the surgery that would put him on a special diet and more follow up post surgery). The initial test have come back negative, but they will keep testing to make sure. We have heard once they pull the tubes, you have a day or two until getting to go home, so come on fluid, let's drain!

Colin's sodium is low right now, so twice a day he is getting added sodium in liquid form. They are hoping it corrects itself with the help of this. If not we will look into other medicines, if that does not work, they will consult with a kidney doctor. Please pray this is just a side effect of surgery and his system will work itself out.

We started the day in a bad mood with lots of coughing but it is good for him to cough. They gave him some pain medicine to help and then he really came to life. He walked so much today, went and played in the playroom for the first time, even took an elevator ride to see the library upstairs. Katherine and Colin had wagon races through the unit, bubble wars (working on expanding our lungs) and even opened some presents form the prize box for eating so well and taking our medicine.

Today was Colin's best day of eating as well. He had a WHOLE piece of bacon for breakfast, 1/3 of a cheeseburger, apple slices, and some french fries for lunch, and 1/2 a cheeseburger and fries for dinner (worked so well at lunch, decided to do it again for dinner). He also ate 1.5 bags of chips today and some M&M's). Baby steps, but we are getting there.
Taking a walk around the unit, sorry Matt - Grandma cut your head off
We are surviving through this together, it's not easy
THey love and miss each other so much
Coloring in bed
Katherine has had way too much fun here in the hospital
A little elevator ride to get out of the room and off the unti
Colin rocking out in the playroom

Sunday, July 21, 2013

Step Down (15th Floor) Update # 3

Not too much to update today. Colin is still progressing well, slow and steady wins the race, right?? :) 

One of Colin's chest tube is still draining a good amount but not nearly as much as yesterday, which is a good sign. All the walking and sitting up is really helping. Colin was out of his bed over half the day today and we did our 4 walks around the unit. The other chest tube is barely draining. 
Colin got off of oxygen yesterday and his O2 stats have been hovering at 94 (which is great) and even got as high as 99 today! When he came in for surgery he was averaging at 83% - this measures how much oxygen the blood is carrying as a percentage of the maximum it could carry. Most people are at 96 - 100%.

We are still working on getting our appetite for food back, but from I understand from other moms who have gone through this, it takes weeks for the kids to resume normal eating habits. I think Matt and I might be putting too much pressure on ourselves trying to get Colin to eat more. 
The best news of all is all the visitors we had today. One of my co-workers stopped by with 3 large bags of grocery. I love the people I work with and they were so very nice to take up a collection for us while we are in the hospital. They bought all sorts of goodies for us to eat while in the hospital. We really appreciate it and now I can stop spending so much money eating out and getting snacks out of the vending machines!

Next my brother, sister-in-law, and nephew came up to visit. Colin had fun playing with his cousin Kannon and blowing bubbles at each other (a fun game BUT ALSO helping with opening up Colin's lungs). Uncle Russell and Aunt Lara brought up some fun toys for us to play with.

Then came both sets of grandparents and Katherine to come up and play again. Poor Colin was pretty tired from the first half of the day, that he slept through part of their visit, but was playing and smiling at the end of it. I LOVE that I am seeing more and more of Colin's personality coming back. His body has been though so much, so seeing him smile and laugh today was amazing! 

Bubble wars
WOW! Go Colin! Now how am I going to keep up with all his energy?? :)
Having fun with glow sticks tonight, trying to keep a 4 year old entertained in the hospital 

Saturday, July 20, 2013

Step Down (15th Floor) Update # 2

Today was full of good news and progress, just the things we like around here! Colin was taken off of oxygen.. yeah, so more tubes in his nose.. he really like that. Colin finally pooped last night and lots today, that is always something they need them to do after surgery. Colin's eating was better today.. he ate almost his normal breakfast and he requested Freebirds for lunch and ate a good amount of rice and beans. We have been supplementing with instant carnation as well to get calories back up. DInner was a challenge but we will take it since he had progress on the other two meals. 

Colin walked 4 times today and did a great job each time. Walking at a normal pace, still complaining while doing it but he is walking well. Colin has been sitting up in a chair half the day. He still has a good amount of fluid draining from one tube, very little from the other tube, so we will need to have them in about 2 more days. But the walking and sitting up are helping draining and getting that out.

BUT THE BEST NEWS>>> Colin had a great visit today with KATHERINE! They came up right as we were trying to get him to eat, so he wasn't in the best of moods. Katherine cried at first because Colin did not seem excited to see her But after about 20 minutes, he was playing and talking with her. She made him smile, which I haven't seen much of. I think it was great therapy to have them together. And it was great for Matt and I to get to see her and spend sometime with her. Katherine and I went to the playroom and made bracelets for her and Colin and Matt and I took Katherine around the hospital and to the gift shop :) 

When it was time for Katherine to go (she is coming back tomorrow), Colin was wanting her to stay or at least come back RIGHT when the sun got up. He loves his big sister so much! And she loves him even more!

Sticking his tongue out at sissy
He has missed bugging her
Katherine drawing with our window crayons, will need to get these for the house.
Katherine made these for Colin and her in the hospital playroom

Friday, July 19, 2013

Step Down (15th Floor) Update # 1

Great news.. Colin moved from ICU to what is called Step Down on the 15th floor. It is one step closer to going home! We have our own room where Matt and I can sleep with him. Colin said he likes our new room better! I agree! 

Colin's chest x-ray showed improvement this morning so they pulled one of the 3 chest tubes and his pacing wires. He is on a very minimal amount of oxygen still but has since stopped all his medicines expect his normal dose of aspirin and he can have chewable Motrin if needed for pain. Pretty stinking great for just 3 days of out major open heart surgery where they actually stopped his heart from beating!
The last time he had pain medicine was 11 hrs ago when they pulled his chest tubes. 

Colin got up and walked twice today and did an excellent job. He was walking with just a little support from us holding his hand. He didn't even cry or have to take any breaks. He sat up in a chair for 4 hrs today. The walking and sitting up will help with him draining the fluid off, which get us home faster. Goal for tomorrow is to keep walking more and more and getting out of the bed most of the day.

BIG DAY TOMORROW - Katherine is coming to visit! We all have missed her so so much! Colin said he wants her to come visit him!

Colin ate well today (for being 3 days post op) - he had a few bites of bacon, a few bites of watermelon, a few bites of jello, half a Chick fill A nugget, and 6 ozs of instant carnation breakfast. Not tons but yesterday he only had applesauce, so improvement here.

Colin was a little bit more himself today, we even had a few smiles. He did play a little with toys, Ipad, blew bubbles, and talked more today. It's great to start seeing more and more glimpses of my sweet boy.
Colin chilling in his new room
Colin is making himself at home - sleeping sideways
Look at all the toys Colin's BFF Liam sent him
Blowing bubbles to exercise his lungs

Thursday, July 18, 2013

ICU Update # 3

Once again, let's start with the positive of the day.. Colin got up and walked twice around ICU today! He was not happy with it at all and cried while doing it but the Physical Therapist was very happy with the strength he was showing even if he was very ticked off about having to do it. After walking he sat up in a chair for awhile, even took a nap sitting up. And we got to cuddle again while he sat in my lap tonight.

ICU is a slow moving process.. but Colin is progressing well, just a little slower than hoped, but he sets his own pace and we have to remember that. This morning at rounds they noticed on his morning chest x-ray that he had some extra fluid build up around his lungs. So we are staying in ICU at least one more day to work on that. To help get some of the fluid off, he needed to walk and sit up more, which he has been doing. The chest tube that they were going to pull, they have left in to help drain off some of the extra fluid. They have also started him on Lasix to help pull the fluid off his lungs. He still have the nasal O2 on (turned really low) until they see the fluid lower.

Colin's EKG looked good today, so we are happy about that. Colin has been drinking plenty of water, which is great. He even ate 10 bites of applesauce today! That is the first he has had to eat since surgery. The doctor on the floor was happy with that progress. We have tried to let him eat anything he wants, but he is not showing an interest in food. I think this will be a hard thing for Colin, since he is not a big eater anyways.

Colin's mood has been a little off today. I think he is still tired from surgery and the walking. He has slept a lot today, in some way I think he is trying to avoid all that is going on and thinks sleeping is a way out. He has not been too happy today. We tried with his prize box, presents from friends, games on the Ipad, his favorite movies, but he is NOT having any of it today. He has closed himself off today from us, I hope this changes tomorrow, I miss my little goofy, high spirited little man. I spoke with child life specialist today to see if she had any ideas on how to help him snap out of it, but she said we are doing the right things, it might just take time for him to come around.

But tomorrow is a new day and we are going to walk, get the fluid off our lungs, hopefully get a chest tube out and MAYBE just MAYBE move to our own room so mommy and daddy can sleep in the room with me instead of in a chair in the waiting room. Still have not got a room at the Ronald McDonald house here in the hospital.

Wednesday, July 17, 2013

ICU Update # 2

To start off with some exciting news.. Colin got to sit up in my lap and snuggle for 2 hrs tonight! Whoo-Hoo! I have missed snuggling up with him! 

We are making progress in getting Colin ready to move out of ICU and into a regular room. Progress is slow moving in ICU, so the key is to be understanding of that. Colin's echo (heart sonogram) looked great this afternoon. He got the arterial line out of his wrist and they will be taking the one of his neck and midnight tonight. That will just leave him with the IV (which stays in until discharge) and 3 chest tubes (2 of them stay for awhile, 1 should be removed tomorrow.) They are happy with the drainage output so far from his chest tubes, complications with this surgery is building up too much fluid in his chest. His catheter came out as well.  So we are moving in the direction, having less stuff on him is the way to get moved out of ICU and on the pathway to home.
Colin watching TV with his F.R.O.G (Fully Rely on God)
Colin's fluid restrictions were lifted, which made him very happy camper. He is able to eat food if he chooses, but has shown no interest as of yet, which the doctors are not pushing him to eat today, so that was okay. BUT he is in love with drinking water and apple juice! We have spent the day trying to manage some pain, this evening he has been in a good place with his pain management. I have to be honest though, it was so so hard to watch him struggle with his pain today. He is not a baby this time, the experience is much more real with a child that can vocalize pain and fear. He has begged to go home, which made me tear up, I know he wants to go home, I know this is all too scary for him, but we just try to ease him fears that we will go home soon.

Colin did get to call Katherine today and he was very excited to speak with her. He just told her Hi and that he missed her and he loves her. It was very sweet. Then I talked to Katherine and she asked what was wrong with Colin's voice, I told her about the tube in his throat but he is getting better and she will be able to see him this weekend. I know this is equally hard on her as the rest of us, so while praying for Colin, please also pray for Katherine to be able to cope with all this "adult stuff" a child should never have to worry about.
Hugs the night before survey, they love each other so much!
Good luck kisses