Post op day 14

Wow! Can you believe it has been two weeks! This morning Parker went down for his morning xray and woody got to go!his xray looked good and Parker got his chest tube out today! woohoo!

After that, the day was pretty uneventful.


Parker spent the day charming the nurses (they love him because he always tells them thank you, no matter what they have done. Such a sweet boy), playing in the playroom, and eating Popsicles!


Parker was slightly dehydrated this morning so they decreased his diuretics. His INR was 1.5, so his coumadin dose will remain the same. All things are looking good and if everything stays how it is right now we should go home tomorrow or Saturday (maybe!).




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Blessed.

We are so blessed. Parker is out of the woods and we never had a really scary moment during this hospital stay. Everything really has gone "textbook", even the effusion was expected. I was reminded of how blessed Dennis and I are when I walked by our neighbors room and the nurse was in the bed with the one month old patient doing chest compressions. Parker and I were playing in the playroom as the bed rolled by with 15 people surrounding it and two people in the crib with her working hard to help her survive. Wow. It was very emotional. I can't say what the outcome was But I'm pretty sure it is grim. That family may have only had one month with their baby girl. I have been blessed with over 3 amazing years with mine, and thanks to ACH and Dr Imamura, I will get many more!

Today was another day of progress! Parker's chest tube has been clamped off since yesterday and his xray this morning showed no fluid! Woohoo! There is talk of taking it out tomorrow if the xray in the morning looks good. His INR was 2.2 this morning (in the range we want!) so we will also see how that is tomorrow. If all looks good and he continues to eat, we may get to go home as early as Friday!! I will keep you posted.

Freedom!

This morning Parkers central line dressing came off and the catheter came out of his neck a little bit. The consensus was to take it out because pushing it back in would put him at a very high risk for infection. So, I figured out a way to hook all of his other stuff to his body so he can walk around freely! He is loving it and I can hardly keep up with him.

His chest tube drain is hooked on his collar and tucked in his pants, but it works!






We spent the majority of the day in the playroom.













We also got a huge delivery of balloons from the ACH auxiliary! He played with those things for hours today!





Today was kind of a big day. Parker had some xrays done this morning and they showed only a tiny bit of fluid around the lungs (we all have some). So, his chest tube was clamped off this morning to see if any fluid accumulates. We get xrays every day and if all looks good they will remove it in 48 hours!! He has been tolerating it as far as i can tell. Parker also ate so good this evening, he hasn't had the best appetite and hasn't really liked his new diet :) the nutritionist came in this afternoon and had a fresh pair of eyes and really helped me get creative with his diet. Low fat, low sodium and high protein is not the easiest! his diuretics were also changed to a home regimen and dosing (something by mouth and manageable to give at home).

We are still getting the coumadin levels where they need to be, this morning they were 2.5, so he was restarted on a low dose tonight. Now that his central line is out he will have to be stuck for labs every morning :( but they are going to send the phlebotomist up to do it (specially trained). This is better than getting an infection with that line.

So, we will still have no idea when we are going home, but all of these things are getting us there!
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Still draining.

Well, spring break was over today for me and I had to go back to school! I hated to leave Parker but i knew he was in great hands with his daddy. Honestly, I think it was good for me to get out of the hospital.

Parker was feeling great today and was in the best mood! He is still draining into his chest tube, but it is decreasing. His chest xray looked better this morning! But his INR (coumadin levels) were extremely high this morning (3.9, if anyone cares....Lauren). So, we are holding his coumadin dose today and will recheck it in the morning. Parker has also been scratching his incision (I guess it is itching as it heals), and he scratched off a scab. Well, with an INR that high, he has been bleeding pretty bad from that area. His nurse just changed the dressing and I think the bleeding is finally under control.

When I got back this afternoon we headed to the playroom!!

We found this pouch to put his heart monitor in and Dennis figured out a way for his chest tube drain to hang on his IV pole, so we can just follow him around. It gives him a little more freedom.




His favorite things to do in the playroom is bowling with the Mickey mouse bowling pins!
He will get tired and go sit in a chair to throw the ball.




So proud of himself....




And his other favorite thing is sit in daddy's lap and play basketball.










When we got back from the playroom he was exhausted and fell asleep before we even knew it!


So, today was a good day. We are just waiting on the chest tube to stop draining and the coumadin levels to be corrected. I am anticipating at least another week. We are doing great and have such a great support system!

I still can't believe Parkers pulse ox is ranging from 93-97 on room air! Just AMAZING!


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A step in the right direction

This morning parker was not feeling good!

He got his chest tube and it made a world of difference! It drained 300 cc when they put it in! That is a lot for such a little guy.
He did so great and was back to his old self before knew it. Immediately he was taking deeper breaths and breathing slower.


This is him waking him...he was acting drunk and funny! And all he wanted was water .


After his procedure the nurse changed his central line dressing and he wanted to wear a hat like her....


Also, the fluid that drained from the tube was clear and was not a chylothorax!! So, it should be able to be cleared up with diuretics and we won't have to change his diet to no fat.
The chest x-ray this afternoon showed quite a bit of fluid on the left side (chest tube is in right side), so we will hopefully get all that fluid with the diuretics and not have to put a tube in the left side.
He is completely off oxygen!! As soon as the fluid was drained his pulse ox came right up! They did have to reverse his coumadin, so that will be our next step...get that back to a therapeutic range.
There are a few more issues but overall Parker is doing so much better. We definitely had a little scare last night, but God is so good! We will for sure keep an eye on the left lung tonight and tomorrow. We also will be walking Parker around the hospital ALOT over the next few days to get that fluid moving.

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Chest tube

This morning Parkers effusion was worse. He peed his brains out last night and it didn't seem to help. So, he will be getting a chest tube sometime this morning. First they are giving him some fresh frozen plasma to reverse the coumadin effects.

After Parkers first surgery he developed chylothorax. This is where he can't absorb fat and it collects around the lungs. This might be the case again since the diuretics didn't work. The only way to know which problem it is, is to see the color of the fluid (it will be white if it is a chylothorax). The fix for the chylothorax is to drain the fluid and then .change his diet to absolutely no fat until he heals (6 months)

Parker is doing pretty good but you can tell he just doesn't feel good. He slept pretty good last night in between the diuretic doses. I will update after the procedure.

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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!

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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.
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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!!

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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!!

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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 :)

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