One step back

So, we did not go home today. Parkers INR (coumadin level) was good today but his x-ray was not. It showed a small pleural effusion (fluid collecting around the lungs). The cardiologist was just not comfortable sending him home yet and told us he would increase his diuretic and we would probably go home tomorrow.

This is what Parker looked like this morning....

He was feeling great!





Praise the Lord we did not go home this morning! Parker started looking pale, breathing really fast and shallow, and was really tired. His pulse ox also dropped drastically in only 2 or 3 hours this evening. He was placed on oxygen and had another chest xray. The xray showed a pretty large effusion. We have moved back to the step down unit and have started aggressive IV diuretics.



The cardiologist said normally with this size effusion he would go ahead and just do a chest tube to drain the fluid, but Parker has been on strong blood thinner. He would be at a very high risk for bleeding. He will be watched very closely tonight and if he gets worse or if in the morning it isn't better they will reverse the blood thinner and put in a chest tube.

He is doing good and still has a pretty good attitude, except for the oxygen in his nose! Hopefully he won't need that too much longer.

So, we will for sure be in the hospital for a little while longer...prayers for my sweet Parker ;)

I don't want to be too optimistic, but....

I think we will be going home tomorrow!! Woo hoo! I am definitely not going to get my hopes up too much because they still have to look at his lab work and he will have a chest x-ray tomorrow too.

Today I got many lectures on Parkers new diet that he will need to be on. It needs to be heart healthy (low fat, low salt), high in protein (his albumin is low, and low protein is side effect of this surgery), can't eat certain foods because he is on coumadin, and he still needs to gain the appropriate amount of weight. Whew! I have a lot of food lists to go through and some menu planning to do. This will be good for Dennis and I too, we always need to eat better. It will just take changing our routine and then hopefully we will get used to it.





Today Parker and I just played and were silly. We went on some walks, rode in the wagon, and Parker took a four hour nap this afternoon. He was feeling so good today. I can't wait for him to not be connected to the stupid IV pole (the IV pole and I do not have a good relationship!). I want to take him to the big playroom but I am afraid it would make just make him mad that he couldn't just run. So, we find other fun things to do that can accommodate a huge pole and heart monitor :)





So, hopefully I will be blogging tomorrow from my comfy couch or my queen sized bed! I think the chair bed I have been sleeping on is about 2 feet wide and my butt is not much smaller than that!



Our prescriptions have already been called in, we have all our appointments set for next week. They will consist of a lot of blood draws to get his INR level where they want it. The first blood draw is first thing Monday morning. We will also be watching his protein levels over the next few weeks to make sure he doesn't develop Protein Losing Enteropathy (PLE), it is a risk after this surgery and since his protein is low, we will be watching it. It is definitely too soon to know anything though.


Overall Parker is doing amazing! He is only requiring Tylenol a few times a day and the occasional oxycodone. We aren't allowed to lift him under his arms and it is so hard! It is just what you are used to. I am getting good at it, though, thanks to the million times he has to pee pee and he is too short to get on the big potty by himself. Last time he had heart surgery he was a little baby so it was easy.

I am just so thankful for how well Parker has done and that he is in good spirits for the most part. He is going to be so excited to get home and back to his normal OCD routine (that is a whole other post!!).

Goodnight!

- Posted using BlogPress from my iPhone

Another move!

The last two days have been pretty uneventful. Parker is doing well enough to go home, but we r waiting on his INR level to become therapeutic.
So, we have been hanging out in the playroom...

He is still pretty sore and has to be followed around with his huge iv pole and his heart monitor whenever he gets out of bed. Going potty is a chore! And he is on 3 diuretics!!






This morning we headed to get an echo. Parker got to ride in a fun wagon!




He did great during the echo. Mickey mouse was playing and he found a slinky dog to play with! I will tell u it was not fun having to leave that dog behind! But The good news is that the echo looked good.



Since parker is doing so great, This afternoon, due to staffing and patient acuity, we were moved yet again! To the over flow CV floor. We are in a semi-private room with no roommates yet. The only bad thing about this unit is that there is not a close playroom, but we will make it work.


Still not sure when we will be going home. I'm hoping for the weekend.

Today, I was also able to go home and get a real shower and take some time for myself, thanks to my wonderful husband. It felt so good to take a shower with actual water pressure :)

I will update tomorrow when I hear a tentative going home time.
- Posted using BlogPress from my iPhone

Moving across the hall!

This morning Parker got his pacing wires out! Now is belly is free of any tubes and no dressings! He was feeling much better this morning. Look at how greatness color is! Pink!!

And then, the big news of the day....Parker moved OUT of the ICU! We are across the hall in the step down unit in our own little private room. On our way over to our new room, Parker was screaming and crying. I think he thought we were going somewhere bad. He is not liking any hospital staff right now!


On this side of the hall we pretty much do everything for Parker and take care of him by ourselves. They have a playroom over here too! We went this afternoon and Parker lasted about 5 minutes before he got too tired and had to be carried back to the room.


After the playroom he was exhausted! He took a short nap and then ate a little dinner. After dinner, he started acting scared and would not let me go. I had to be touching him at all times. And this is how he fell asleep....


I definitely did NOT mind! But I felt so bad for him. Its like he hasn't gotten enough holding and touching over the last week and he just needed it. I am so glad I can do this for him :)
We are so excited to be in the step down unit because we are getting so close to going home! I can't believe my sweet little boy had open heart surgery 5 days ago! Crazy. It has been way easier than I could have ever imagined. God is so faithful.
He really doesn't have any issues, and I'm not sure how long we will be over here. Maybe we will get to go home by the weekend?

I have also gotten some questions about parker going home on the coumadin. This is a blood thinner and the cardiologists like for post-fontan patients to be on this drug for at least 6 months after surgery. Parkers new blood flow to his lungs is strictly a passive flow system, because now it bypasses the heart, goes straight to the lungs to be oxegenated, and then it flows to the right side of the heart to be pumped out (before some of the blood was pumped to the lungs by the heart). Since there is no pumping action taking the blood to the lungs, it increases the risk for clots. It is so amazing what surgeons can do, isn't it?
Because he is on coumadin, he will have to get his INR checked pretty frequently to make sure it is in a therapeutic range. If not, his coumadin dose will be adjusted. This will require frequently blood draws, not sure how that is going to go because Parker is already so scared anytime anyone walks into his hospital room....We will cross that bridge when we get to it. Until then, we are focusing on getting this sweet baby home!!

- Posted using BlogPress from my iPhone

Post op day #4

Today has been another good day! Parker got the rest of his chest tubes taken out today, and he did so good! They sedated him for the procedure and he slept for a long while after! See those two gauze dressings? That's where they were.

This is the face we saw for a good part of the day...


He was kind of pitiful with a really mad/serious face for a good portion of the day. He also kept saying his belly hurt. He complained about the pain from chest tubes coming out more than the heart surgery!


He walked today but relaxed most of the day. He was really tired after his procedure this morning.
He got s new Woody doll today and would not let it out of his sight! He even had to take it on his walk!


This evening during his bath we decided he needed his hair washed (really bad!). So, we found a shampoo cap. These things are awesome, you just put it on their hair and massage for a minute and then dry with a towel. And he looks pretty darn cute in it!


Today Parker got the last of his chest tubes out!! Woo hoo! His heart rate has also been in a good normal rhythm since yesterday, no more pacemaker. The only thing he has left are his pacing wires (the orange wires) and a heparin drip. These should both be gone tomorrow, and we should be moving out of the ICU and to the step down unit tomorrow!! He does still have his central line (iv in his neck) but that will probably stay until just before he leaves. He will probably start his coumadin tomorrow and he will be on that for the next 6 months. Once he starts that we should be on all the home meds and will just have to adjust the doses before we can go home.
So, tomorrow when he moves, it will be constant hospital for me :) I'm ok with that because it means we r closer to going home!!

Posted using BlogPress from my iPhone

Post op day #3

Today had been another good day. Parker was pretty grumpy and pitiful when we got here this morning. But he did sleep pretty good last night!
He didn't end up getting all of chest tubes taken out today. He got the mediastinal chest tube taken out but the two pleural tubes were still draining a little too much to remove. He also got his RA line taken out (an IV that goes directly into the right atrium of his heart). We should get the other two chest tubes out tomorrow (that is the plan at least).
Parker did play with a toy for the first time today! Aunt Diane gave him this toy and he played with it for a few minutes. Thanks di!

Today he was also being silly and we got a big smile and even some giggles!!





Parkers great grandma (mimi) made him some adorable hospital gowns! He got to wear one today for the first time. He chose the toy story gown.





He wore it while he was walking today. He only made it one lap today but he still did so great!
He also was able to sit in mommy's lap today!! Doesn't he look thrilled! Well, I was!!





We also had lots of visitors today! While Parker was taking a much needed nap this afternoon we went out to the courtyard with Danny and brittani to enjoy this gorgeous weather!!





This afternoon parker took about a 3 hour nap and Tonight He has eaten much better! I am so glad! He ate some heart healthy pizza, an apple and some baked tator tots. I didn't realize how bad Parker ate until we got the heart healthy menu he could chose from and nothing he wanted was on it!! Ha! Guess that will have to change...sorry Parker :)

- Posted using BlogPress from my iPhone

Post op day #2

Today has been a great day! Of course we have had some rough moments, but overall it has been so good. Parker is truly amazing and God is so good.

He has been resting a lot more today. This is how he has been falling asleep...can you imagine sleeping like this with all those chest tubes, lines and hurting chest? He is comfy though!
Parker hasn't eaten much but I did get him to eat an entire thing of applesauce.


This afternoon Parker has been completely off oxygen and his pulse ox is staying between 85-95!! before surgery he was at 75 on a good day. He is so pink :) love it!! His x-ray looks much better today and the little pneumo is pretty much gone! He also got his bandage removed from his incision and it looks so good! And he got up out of bed to a big boy potty that they brought to his bedside. I told him he can go in his diaper but He will not go in his diaper!
He can't eat anything after 4:00 am tomorrow so that he can get his chest tubes and RA line out in the morning. After that our only obstacle will be to get completely off the pacemaker.
We have also been so blessed with lots of visitors and gifts. We haven't even had to eat at the cafeteria yet (thank you friends!!).
Excited to see what tomorrow holds!!
- Posted using BlogPress from my iPhone

He is on the move!

Parker had a great night! His precedex drip (sedation drug) was stopped and he is more like his old self. He was sleeping so good when we got here this morning.

This morning he smiled for the first time! So good to see!
And then the big event of the day so far...he got up and walked!






We are so proud of him.
He walked around the unit 5 times! All of the nurses were very impressed. It took a team of a few people to hold all of his stuff and push his iv pole, but it was worth all the work!







Then he got to sit in daddy's lap for a while. He started falling asleep because he was totally worn out after the long walk.





Our first family picture
Once he fell asleep in daddys lap we transferred him back to the bed but daddy had to go with him.
He curled up with Dennis and fell right to sleep...I must say I was pretty jealous!





Now he is taking a nap.

Today he has done a 180 when it comes to his emotional state. I am so glad he is feeling better and that he is able to rest today. He also got to use the bathroom in a urinal...he told me that he got to pee pee on a tree! Tomorrow he will probably get all 3 of his chest tubes out and his RA line out! He is making huge progress and will probably only be in the ICU for a few more days.

A pretty long day!

This afternoon was pretty eventful! Our nurse definitely got her money's worth today! The first event was getting a CPT treatment. This is when the respiratory therapist places a vibrating instrument on Parker's chest and back. This breaks up the secretions in his lungs and hopefully prevents pneumonia. Imagine how that feels on his hurting chest...I can't!

You can also see the little bear he hugs whenever he needs to cough. Coughing is hard work and not fun at all, but he keeps pushing on!
Parker was also able to turn on his side today! This is how he sleeps at home and he seemed a lot more comfy.


The next event was the chest X-ray. That hard board under his chest did not feel to good! Parker had a small pneumothorax in both of his upper lungs this morning. The X-ray this evening showed no change (not getting any bigger) so that's good news and doesn't require any change in treatment.


He also got to sit up this evening! I think this was his favorite part of the day. Even though he doesnt have the happiest face, he was enjoying himself!



He actually fell asleep like that!

Today was a long day of being uncomfortable and trying to find Parkers perfect "cocktail" for pain control. He finally went to sleep around 7 and his night nurse made this sign for his door.


And this is how we left him tonight.


He had a long day but made a lot of progress! Today he got his catheter out, his arterial line out, the dopamine drip turned off, started on pain medication by mouth, and started eating!! He even got his long awaited chicken and French fries! He is still on the pacemaker, but I'm not stressing too much about that yet.
I am sure tomorrow will be filled with a lot more progress, can't wait to share!
- Posted using BlogPress from my iPhone

Post op day 1

Parker had a pretty good night. His heart rate dropped some so he was placed back on the external pacemaker but he hasn't used it in the last few hours!

His pain has been pretty well controlled but he still has some moments. He really starts hurting when he has to cough. He has been drinking as much apple juice as they will let him! He is on fluid restriction (this surgery causes lots of fluid accumulation so they limit his fluids for a while), so he can only have 30 cc of liquid per hour (that equals one ounce), just enough to tease him!


In between the tiny bits of apple juice, I have been dipping a sponge in the juice and he will suck and chew that thing till it is bone dry!


I asked him this morning if he needed a kiss and he quickly said no, but then turned his head and Said "I need a kiss"! Love my sweet baby!!


The doctors just came in and they are going to take his catheter out and let him eat something today!


He LOVED the pudding! He ate the whole thing and then fell right to sleep. He is a happy boy with a full belly! I am so glad he is getting to eat and that he is able to eat!
Today they are also going to get him up into a chair! It will be so good for him, but it isn't going to be very fun!!

I will update again tonight...I am so glad I have this journal for Parker to read when he gets older. I want him to know how strong and amazing he is!