Tucker's Journey, 14 Days Post Surgery

Hello Tucker fans, I've just spoken with Karen and am some lovely medical jargon for you. I'll try to be specific and put things in order.

All of this trouble that Tucker is experiencing started two days ago. Dr. Del Nido did an ECHO and said things were looking great and that taking Tucker off of the vent was going to be soon. Things were looking good! *Tucker's heart is doing great and in awesome condition after surgery.

Later that day/evening, too much fluid was being taken on and not enough of it was coming off. Tucker's lungs were filling up with this extra fluid, causing him to loose his sats and blood pressure go up. Everyone was kind of in a hustle to figure out what was going on and get it under control. They did not paralyze Tucker completely at this point, but did a little bit to help calm his body. Tucker was still not getting better after this point.

During this time, the doctors placed a new central line in his clavical, adjusted his meds, continued the paralytic and switched pain meds. Blood draws were showing too much of one pain med in his system, so that had to concot a new regimen.

Tucker's blood gases were still climbing and his O2 dropping. Tucker stopped peeing and still, less fluids were coming out. This is known as a postive balance. The nurses continued to try different things to rid Tucker's body of the fluids.

Okay, so now I believe, if my timeline is correct, Karen was able to give Tucker a nice bath and get him cozy. They gave Tucker his meds and he went right down. They thought this was a good thing, sleeping so well.

Then Karen woke up to nurses whipsering. Rushing over, she discvered that Tucker's blood pressure had dropped, his sats were 84 and dropping, BUN was high and his liver was distended and shutting down. His lungs looked terrible (very wet) and he was becoming hypertensive. The nurses told Karen that they had to put more paralytics on board and this time really keep Tucker out and unable to move. It took (3) doses to get Tucker to a point where he stopped trying to breathe over the ventilator.

That brings us to today. Mommy and Daddy had a team metting with the doctors this morning and they honestly believe Tucker is stable enough that he is progressing forward again. Tucker was put on a new ventaltor that does all of the work for him and actually agitates the lungs to help rid them of fluid. It shakes the fluid loose. There have been more diuretics added to his regimen too. Tucker has been getting rid of more fluids than are going in, which is fabulous news. This is known as a negative balance. Tucker was also given a steroid to increase his blood pressure a little bit, which will help his heart beat a little higher and get rid of the extra fluid. Chest x-rays from this afternoon look good.

As for some additional info, the new vent that Tucker is on is a step above the one he was on. He will need to be weaned from this vent, moved down to the one he was on, weaned off of that one and then he can be extubated. Doctors believe that this has set Tucker back about 5-7 days, give or take. That is a guess as to how long it will take Tucker to get back to where he was 3 days ago. Once he recovers from this little set back, he will continue to progress forward toward recovery and HOME.

Doctors believe Tucker will be in hospital for several more weeks. No one can say for sure, Tucker works on his own schedule. Tucker has proven to be much stronger than anyone (who doesn't know him) gives him credit for.

Things are facing forward now and each small step is progression. Mommy and Daddy are exhausted but seem to be doing better this evening. Questions have been answered and that's always helpful. Keep this little man in your thoughts and prayers. Every kind thought and prayers of strength bring Tucker and his family closer to home.

With all this text, I think we are due for some photos. I'll bribe his mother. :)

Thursday Morning Updates

As of this morning, Thursday, I haven't had too many updates on Tucker. There is a meeting with the family and his team of doctors this morning that should shed some light of the course of action they are going to be taking.

If you have checked in earlier this week, then you know that Tucker was put back on paralytic meds and the ventilator assistance was increased. All of these steps backwards occurred, we think, because of extra fluid.

Last night was not a good night for Tucker and things actually got worse. X-Rays are still wet and looking worse as of early this morning. Tucker will not saturate and is holding at 86. Tucker has also stopped peeing.

The paralytic meds were brought on heavy this time and are not allowing Tucker to do anything on his own. His blood gases came back bad and his blood count is up to 14 from 10. A high blood count could indicate an infection somewhere, so cultures were taken and they are awaiting results.

Yesterday there was blood when doing suctioning and today they believe there is back up in the lungs. A lung scan is on board now, with hopes of finding more answers.

That is the bare minimum of what I know this morning. Karen and Todd are in a whirlwind of so many emotions. Not only are there so many things to worry about with Tucker, but back here at home they have a daughter who misses her family, a house that needs tending to and bills that need to be paid.

Please, please keep them in your prayers. Send them your love and strength, well wishes, good vibes and heartfelt thoughts.

Two Steps Back

This update came late last night...

came back from dinner and had doctors in the room. Tucker lost his saturation's and couldn't come above 86 percent oxygen, we had to go up on our ventilator settings to get him to 94 percent oxygen, his blood pressure is 80's over something and we are getting blood when we suction him.......waiting for an explanation. They were trying to figure it out as well...why and what. Chest x-ray ordered.....I don't know what the HELL happened..... (-Karen)

And then this one came this morning...

Paralytic meds back on board. I don't know what to say.....i will blog later. Hard morning for Todd and I. Prayers please. (-Karen)

Please, Please keep Tucker and his family in your thoughts and prayers. They need strength.

For those of you who like to know the in's and out's of the medical standpoint, here are some specifics.

A big step into Tucker's recovery was removing the paralytic meds from his regimen. They were able to do this a few days ago. Even though he was off the paralytic meds, they kept him sedated quite a bit so that they could wean him off of the ventilator (breathing machine).

Weaning from the vent is quite the process. Because the vent does most of the work, and compensates for several gases found in our normal room air, it takes a little bit. However, Tucker was taking good breathes over the vent and everyone was hopeful that they would remove the vent soon.

Once the vent is removed, they can start taking off more of the sedation meds. If they were to let him wake too much, he would fight the tubes and try to pull out the breathing tube.

I have not be updated in details this morning, but as you can see, the vent settings were moved up again (more assistance) and the paralytic meds have been administered again.

I'll update as soon as I hear something, and hopefully that is soon.

Tucker's Making Progress

Just some pictures to WOOO you with.....

Hello everyone...

Yet another quiet day with little bits of excitement in between. Tucker rests well once you get him down....and it is taking a lot to get him down. He fights the ventilator pretty hard when h

e is awake, tried to sit up almost. I still don't think he knows what he is doing, he still has wild eyes but I think he hears me and we definitely get a reaction. He loves cloralhydrate....it puts him out so darn quick but it contains alcohol and they don't want to use it much....it goes down the feeding tube in his nose. It is truly amazing how fast it puts him out. It is a sleeping medication, like on the level of NyQuil and since he has

never had it before...WOW. You would think it would have no effect since he is on the hard stuff ....but it does the trick. We have changed dressings, we can talk in normal voices, I can touch him....do whatever you want..he is out...and will be for a good 10 hours. On a very small dose.

We have had two small stools....which is another great thing. That means the bowels and gut are working and ready to start being used more than they are. Also, the heart pacer was turned off. His heart is finally in "sync" and can be doing its own pacing. His heart rate is about 100-120. Oxygen is 98-100 PERCENT!!!! His blood pressure runs 60's over 30's and can get as high as 70's when excited or agitated.

I have decorated the room with all the pictures from Tucker's school...they each made him a picture with a little note. I had time to laminate them before we left which is nice so the tape doesn't tear them up, then I can put them in his scrapbook of his "whole heart journey".

Everyone loves the I heart Tucker t-shirts. (we wear one every day) We have had so many ask "who is Tuckah"...ya know that good ol Boston accent. I think everyone in the CICU now knows who Tuckah is and how very special he is to a WHOLE lot of people.

More Progress on Day 10

A picture to tide you over.....

It is nice to see the tubes gone from the chest. Tomorrow they will attempt to lay off some of the sedation and work on weaning the ventilator. It usually takes, they say, 3 days to get off the vent and much longer to get off all the drugs he is on. He will go through withdrawal as most are narcotics. (and when I say a lot, I mean A LOT!!!) He has had two open hearts before and both with the same drugs so it took more of them each time.....A LOT of them.

We have an awesome nurse tonight who has been our nurse several nights ....so I will get good rest again tonight.

Keep the prayers coming....they are definitely being heard.

Progress...

The PA line and chest tubes are out. We had to put some paralytic back on board while doing those two things but it is wearing off once again. They will chill him out for the rest of the day and start backing off on the sedation tomorrow..ever so slowly. Also increase his feeds possibly to get the gut going. The also took out the pee pee cath....so we are in diapers now. (yeah)

The rash isn't any better and there was a few spots under the tape around the chest tubes that almost look like blisters. We haven't gotten any thing back from the cultures that were sent yesterday but should have preliminaries sometime today. We have a small fever once again as well.

Keep those prayers coming.

The 4-1-1

Hello my Peeps. (hee hee)

The night started out with a little fireworks of our own. Tucker kept his pressures even when very agitated before bedtime. They ended up giving him a TON (and I a mean a ton...morphine, versed, adavan, and some clorafil)of sedation to get him to calm down and sleep. Then his pressure dropped very quickly, as soon as it all hit his system. So it was up on volume and up on the dopamine, his blood pressure med. He finally leveled off and went to sleep. The doctor tonight said it was amazing how much sedation it takes T21 kiddos...and it doesn't last very long either.

He has been quiet all night since. We were put on antibiotics for the fever, just in case. (the fever is actually gone this morning) We have the start of a bumpy rash on our side, under our chin and in our diaper area. They are thinking yeast from laying in the bed..so some powder was ordered for those areas.

I believe the agenda today is to get all the lines out of his chest now that his is off paralytic. The longer they are in, the bigger the chance of infection. The urine cath will also be pulled today and diapers will be used. (thank goodness..that has got to be uncomfortable as well) As these things come off and there are fewer things to hurt the sedation will slowly be lifted. Then the ventilator will be chipped slowly away for extibation. All of these things are things to come....but we have made a huge step in staying off the paralytic!! HUGE.

Thank you everyone for the prayers....as Candi said. "god is probably saying OK OK, I hear you" with everyone praying for him.....and that is an awesome awesome thought.