A little catching up to do

Parker has been home for over a week and it has been heavenly!! He is a different kid and after this past weekend, we are different parents! Dennis and I were able to go to the lake for a night without Parker and just relax. And that is exactly what we did!! We fished off the dock, got some sun, rode around in the boat, got a little more sun and laid around. We havent really had a chance to sit and talk very much lately and if we have, it has only been about hospital stuff or heart related things. I love my sweet husband!

Today was a big day....Pareker got to go back to school for a few hours this morning. He was beyond excited!! I told him when he got up and he would NOT eat breakfast and could not get dressed fast enough.
He was a little shy when we got there and would not let go of my leg! This is sooo not him. I think he is still adjusting to everything.
When we got home, he took a very long nap. He was worn out after playing with all of his friends. His teacher said he did so good. She was surprised at how little he whined! He really is a different kid since his surgery. WAAAYYY less whiny. I think he just feels better and isnt as tired.
This afternoon we played golf for a very long time! I hope he can get into this sport...it is a sport I can actually see him being able to tolerate (endurance wise).
Daddy got in on the action too! The club was a little small!
He has lost quite a bit of weight (but he is gaining it back, slowly) since his surgery. I didnt really notice until we got home and all of his clothes are falling off of him!! I tried to capture his saggy pants in the above picture. He is so funny, walking around pulling his pants up all the time. I cant put a belt on him because then he wouldnt be able to go potty a million times a day (those diuretics are tiring!). Things are going great! He will go to school a couple of morning this week and then maybe go a little longer next week. I still cant believe how fast he is back to normal. He does still have some soreness but nothing too bad. He loves to lift his shirt up and say "my booboo looks better!!" in this high pitched voice. I guess thats what I sound like =) so funny!

Cardiology post op appointment

Today was Parker's post op visit. We have been home for 4 glorious days. Even though I have spent most of them studying for a huge test that I had this morning, It has been amazing to be home.

Parker did great today. I am so glad that he did not kick and scream when we went to the hospital today, he was so happy to go see the doctor!! His pulse ox was 95% WOW!! 95!! This is so amazing to me. What is even more amazing, is how pink he is. I just cant believe the difference. He is still skinny but has gained a little weight since discharge. 12.2 kg to 12.4 kg (thats like 27 1/2 lbs). He really has been eating everything in site (well, everything that is low fat of course!!).

His chest xray lookd perfect, no fluid. His INR was 2.4 so we decreased his coumadin a little and will start getting his blood drawn at our pediatricians office. We will get it checked again in 2 weeks. Two weeks isnt so bad, I was expecting every week for a while. All of his other medications will remain the same. He is on Diuril, Aldactone, Enalapril, Digoxin, Aspirin, and Coumadin. I dont think it is too bad of a list.

Dr Seib told us that if we felt comfortable with it, Parker could start going to a few half days of school next week!! NEXT WEEK?? didnt he just have major open heart surgery?? He truely is the stongest person I know. Everyday we have been home he has done more and more. He is back to his old self with a little fatigue here and there and still some soreness. We still need to watch what he does (no jumgle gym or climbing high), we dont want him to injure his chest, still cant lift him under his arms but other than that he can pretty much get back to normal. Since it is late in spring, he isnt worried about the flu or those kinds of sicknesses. Of course, we will need to make sure he isnt around anyone sick and have good hand hygiene, but we can get out and about!! woo hoo!!

All of this is blowing my mind. I guess I thought we would be in seclusion for 6 weeks. Praise the Lord that Parker is doing so great. He is the same Parker but different at the same time. I am so excited to start living without a planned surgery in our future...so weird!!

Smiles!

Sunday was our first whole day at home. The weather was absolutely gorgeous, so we decided to go out on the boat. We went out on little maumelle river. It Is a small river off of the Arkansas river that is really smooth and we could go really slow. Didn't want to bounce Parker too much. He loved it! I just love that sweet smile!

After a really long nap, we did Parkers most favorite thing...rode the ranger! We went and saw all the neighbors. They were all praying for him and were so excited to see him out and about.



Then Parker flew a kite for the first time, he was so proud of himself!



Parker is doing great at home. Having some nightmares and issues being alone, but we are working through those. He is eating and drinking better and is doing really good on the low fat diet (except he HATES skim milk...but who doesn't?)!!

We go back for our follow up appointment with cardiology this week. We will see how Parkers INR looks and get another xray. I'm sure everything looks great :)

Home

After battling another day of dehydration and doing everything I knew to bribe Parker to drink, drink, drink, we got to come home yesterday!!

It was the absolute best feeling! and Parker did not know what to do with himself!! On the car ride home he started remembering all the fun things there are to do at home!
And when we got there all he wanted to do was swing, pajamas and all.
Then he got to wear real clothes! It was so funny, when I put shorts on him, he was very confused. He kept telling me to fix them and was trying to put them down like pants.
He has done so good at home so far! We are all getting back into our normal routine and we all slept so good last night! I was worried that Parker would wake up a bunch (because thats what he was use to in the hospital), but he slept from 8:00 pm to 8:30 am.
This picture is of Parker putting on daddy's chapstick (a part of his night time routine at home). We are just thrilled to be home! We still have to watch his water intake, but everything is going pretty smoothly. Thank you for all the prayers, gifts, notes, and dinners! We could not have made it through these 2 1/2 weeks without them! I know that we were in the hospital for a short time compared to a lot of people and that we are so blessed, but my bed was so heavenly last night =)

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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