Friday, July 31, 2009

Friday's News!

It seems Tucker had another fabulous day in the CICU! Next week is going to be a big week for Tucker and I can't wait!


OK. So I am sorry I have not updated myself lately. Again, when not much changes it gets old saying the same things. Today, yet another new ATTENDING, another new plan. I called our cardiologist, he came, told them what the plan is and it is to get him off this vent and take it out early next week! No more waiting, no more slow it goes. He is ready. He has done great progress this week. Oxygen is great, blood pressure is forward. I was planning on going home on Sunday for a while with Hunter, now I will wait until the following Friday to decide. IF we can get the vent out we could possibly be on the floor in a week......the floor is the final room before going home. They have said that since Tucker has taken a while here in the ICU that the floor will be very quick. We just need to get the eating by mouth thing going before we head home. ALL VERY GOOD NEWS!!!!

So, hopefully this weekend we will continue to make progress on the vent, then we will be free of it next week early. We went down on two different medicines today, which has given Tuck a little more "crazy" awake time. It is a fine line we walk with the sedation, breathing over the vent...and so on. I dont think they will ever find the right mix and neither does Dr M, so I think it will be wake him up and pull it all in the same day next week. We have to try...we have to get him off it before we hit another infection or something.

We got to take the bandages off his chest, it is amazing how much they have healed already. The bruises are slowing going away from the pokes for IV's. His rash is gone. His eye continues to be really red....still doing the regime for healing. He still only has the pic line for access to his veins. We had some thrush in his mouth but have fixed that as well. We have been able to wear pants and socks, so a little bit of normal. We have had several days of poop and pee....our fluid balance is negative once again....

I think that is us in a nut shell. We have recieved lots of pictures for Tuckers walls....and will post pictures of them tomorrow. Thank you EVERYONE who has taken the time to send us mail. It is nice to hear from everyone and feel the love from each and every one of you. Tucker is stealing the hearts of the nurses here as well, now that he can interact a little with his eyes and movements. He shakes his head no when he doesnt want something....which is everything right now. Just wait til they see him without tubes and iv's.....we have shown everyone we can the video of him they can see how much he moves, dances, that he walks, that he has a life outside of the bed he lays in here. Who could resist not loving this little guy!!!!!

♥ Mommy

Wednesday, July 29, 2009

Take It Down A Notch

So, Tucker finally got to put on some shorts today! Yay! Poor little guy has been sporting a diaper and iv's for a month, so a nice pair of plaid green shorts should have hit the spot. Not to mention some fabulous, LUCKY socks to match.

Nice shorts and lucky socks!

In addition to all of that fashion goodness, Tucker really did seem to have a good day. One of the major points of progress today was the vent. Tucker was sitting at about a 15/16. This evening, he's down to level 11! Yeah, totally awesome! When he reaches a level 8, things should start to wean quickly. I am hoping that by tmrw evening, Tucker will be down to around an 8. Think Eight my friends!

Second great thing about today, medications (including sedation drugs) are being weaned little by little. This is a fantastic point of progress too! If you saw my tweets earlier, you heard that Tucker was actually awake enough to watch Nick Jr all morning. Cartoons, a kids best friend!

Third fabulous piece of news today, Tucker's Ophthalmologist came in and said his eyes were looking better (re: the ulcers) and to keep the regimen of drops and ointment going.

Fourth, Tucker's heart doc, Dr. Del Nido, said Tucker's chest x-rays are looking the best they have in days. Everything is moving in a forward, progressive motion.

See, there you have a whole list of wonderful things that your prayers and thoughts are doing for Tucker. People from all over the world are sending in their love for this precious boy, and it's working to make him heal faster. Thank you!

I hope tmrw is just as productive as today. *hugs*

Tuesday, July 28, 2009

We ♥ Tucker

The love for Tucker continues to come from around the world.

Do you have a photo/banner/picture that you would like to share with Tucker and his family?

Send it to and I will make sure they receive it and it's posted in the I "Heart" Tucker photo gallery over in FLICKR.

Show Tucker some L♥VE. :)

33 Days Post Surgery

Tucker is still holding pretty much the same pattern as he has over the last couple of days. We are still hoping for progress off the vent.

While there hasn't been much to update, I do know that yesterday they started a new heart medication. The new med is suppose to help the heart relax but it also messes with Tucker's Blood Pressure. Tucker needs high BP right now to keep the fluid off of his heart and lungs. It also helps Tucker to pee out all of the extra fluid. If I understood correctly, there are still some wet x-rays and the vent settings were not moving down much.

It's hard to see Tucker right now. Mommy says that the past 33 days have taken a toll on Tuck's body. IV spots are black and blue with bruising, especially his groin where they have entered during two heart caths. Of course the chest his trying to heal as well. Tucker also has some kind of rash that may be a result of the antibiotic that they put him on when cultures came back with indication of an infection a few days ago. And lastly, his eyes are still in the process of healing.

As mentioned in earlier updates, Tucker has some small ulcers on his eyes. I believe this is a result of his eyes not being completely closed during this hospital stay while he's been mostly under and sedated. I know eye drops are being administered in hopes of clearing them up.

This is all I have for the moment. I can't thank you all enough for continuing to check in on Tucker and his family. I know the updates aren't as fun (and constant) but Tucker is stable and just needs time to come off of the vent. This is the most important step towards progress. Notches on the vent are coming down, but it doesn't take much for them to come back up with the slightest complication.

Tucker is a strong boy and will be up and out of that bed in no time. Mommy and Daddy are anxious to hold their son and his sister is more than ready to hand out piggy back rides again. All in good time; Tucker Time.

Today, I am leaving you with some photos that I took of Tucker just days before he left for Boston. Enjoy!

Tucker and his Sissy



Mommy and Tucker


Please keep sending your love, thoughts, prayers and good vibes! Thank you!

Sunday, July 26, 2009

Saturday and Sunday Updates

Sunday, Mommy and Daddy Keep Their Eyes On The Prize:
THIS is why we are here.....our Prize!!!! I went through a bunch of old photos and videos of Tucker, boy I cant wait to hold him and watch him dance again.....but we will see these things again and THAT is what I need to focus on and remember. He is the joy in our lives and everyone he touches..... he puts a smile on my face and lightens my heart.

(Video is Circa June 18th, 2009-3 days before he went to Boston)

Saturday, Nurses went A-Fishing:
Today didn't start off good for me, or Tucker today. I woke up around 5 to someone trying (yet again) to get an iv in Tuck.....another fishing expedition. When I say fishing expedition, I mean it. The needle is in the arm and they are pulling it out to stick it back in, moving it from side to side, pulling it out and pushing it more to the left or right,,,,FISHING!!!! I got up, asked why....he had a fever and they needed to get blood cultures. "He had coils in the cath lab done just a few hours ago and fevers are going to happen after that. " Please stop, use one of the 3 ports that have access already.!!!!!! I lay down, fall back to sleep to wake up to someone else "looking" for a spot to try again for an iv...... OK, enough!!! I found the doctors and had a word. I know the nurse was doing as she was told --by the dumb ass that told her to do it---but the --dumb ass-- that told her too should have known, or put two and two together, as I DID, that fevers occur after coiling. Shouldn't they have known that, or thought of that instead of jumping right to infection. Not to mention we are already on antibiotics.....HELLO!!

So I talk to the doctors and tell them to STOP!!!! Tucker had a rough day yesterday. He came back from cath with ivs in 3 of his 4 limbs, then they paralyze him again to poke and scrape his eyes, dilate them....and now you are trying to poke him again! He is done, I am done... this all before 8am.

So, then another NEW nurse that has never had Tucker. YUP, can you believe it. So, I am not even sure what time it was, not long after and Dr Del Nido comes in to say the chest x-ray looks better today that he thought the coils they did do would make a difference. Tucker is awake and starting to become MORE awake. He grabs the vent tube and starts pulling it out....luckily Del nido was close and grabbed it. Long story short....Tucker's dex drip (sedation drug) was not hooked up and was leaking on to the bed...I found it there. Tucker was awake and PISSED off! The nurse is trying to hold him down, a NO we had to try to recapture him once again. Got him plugged back in the drip, gave him 7 mils of versed and some choral hydrate and after 50 minutes he finally hit the wall and was out until 7pm tonight.

This was our day.....and I am not even going to talk about the respiratory therapist that did the suctioning today. UGH...I will say, she asked me to help her hold things as she did her job..she needed extra hands she said! ( can you just say, I was going to kill someone)

I hope, for Todd's sanity, that I have a different nurse tomorrow. He hates it when I am not comfortable with what is going on.....but today, even he was not sure of the care that was being given. Our boy is too precious and too sensitive to change for someone to come in and make careless mistakes.

♥ Mommy