Chest x-Ray at 2pm then hopefully, discharge

Echo looks better. Atrial battery turned up on pacemaker. Posting from iPod so keeping it short. We're looking at coming home tomorrow!!

Tubes Out

Connie got his chest tubes out a little after 8:30 this am. I don' think the versed really kicked in until afterward, but oh well. It was pretty quick. He also got his pacer wires out and is scheduled to be in the echo lab like five minutes ago. He's pretty wobbly after the sedation so we'll ride down together in a wheelchair. His prescriptions have been called down to the pharmacy so now it's just a matter of waiting to see how is x-ray looks tomorrow and getting his pacer interrogated before we can bust out of here.

Typical Toddler Stuff and then some

Connie didn't have any appetite this morning or at lunch. Greg and I started to worry, thinking that something might be going on with his heart. The appetite has been a tell tale sign all summer. After his nap, he ate two bags of lay's potato chips and most of a cereal bar. Now he's finishing up a hot dog with the bun and some chocolate milk. Guess he's just being picky!

We saw Dr. Bradley (EP) while we were in the playroom and he said Connie needs to be interrogated again tomorrow since they made some changes to his pacer. He said that his atrial lead "isn't as good" as it was when we came in. Sometimes surgery can do that. I asked if that meant we had to have another surgery to replace the lead and he said he isn't sure yet. He just wants to interrogate it first and then maybe we can just wait and see.

We ran into Dr. Bove in the hall on the way to the Med Inn and he asked if Connie has had his echo yet. I said no, that it was scheduled for tomorrow. I said, I'll be interested to see what's going on with that left ventricle. He said, "You and me both."

Please pray that Connie's atrial lead to his pacemaker is secure and working efficiently and does not need to be replaced. Replacing it would require opening the chest again. Also pray that the tubes have stopped draining enough to be pulled tomorrow and we can proceed with getting home.

Just Kidding

So, the nurse seemed surprised that they were planning on pulling tubes today so I asked that they double check his drainage numbers because I don't want to withhold food for him until 2pm for them to then decide they are going to leave them in another day. The cardiologist came in and said that he was close to borderline, but she would be conservative and leave them in. They don't like for his output to be more than his weight and his weight is 12.6kg and one tube had drainage of 22, 20, 16 and other numbers greater than his weight. The last thing we want is to pull the tubes today and then have to have more tubes placed tomorrow. So, today will be a play and wait day. Status quo, if you will. If the EP people are happy, he can come off the monitors and even go off the floor and maybe even outside. Too bad I didn't bring him any winter clothes! It's freezing up here. It even got into the 30's overnight! So, we will be patient. We are also increasing his enalpril up to 2ml and keeping him on synthroid (the thyroid med) until he gets home. They want Dr. Bromberg to take him off and then check his levels. Since he's been getting it here already, checking the levels now won't exactly give us a true number.

Even Earlier Departure?

Greg stayed with ConBon last night and called early this morning to tell me that they already decided that they are pulling both remaining chest tubes today. That means that it is probable that as long as his echo and x-ray on Wednesday look good, they will send us home!

More Lines Out

Finishing a lap

Showing off my walking to Dr. Bove

My new name sign in my room

Such a happy boy. His nurse wants to trade in her son and keep Connie!

Connie got rid of his last IV. It was his central line in his groin and it wasn't drawing back and he doesn't need it for the morphine anymore so they removed that. He has switched to oxycodone and tylenol and ibubropfen. Seems to be working fine. He wanted to get out of bed after dinner and walked all the way over to Pod A where he saw Dr. Bove. Then he played in the play room. After that we went back to his room to change his first "dirty" diaper since before surgery!!!! I'm sure he is quite relieved now.

Play Time

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Up and At 'Em

Making an important call

Coloring with the Child Life Specialist

Playing with Daddy

"rain" (train)

Connie walked from his room to the playroom on 5East. He played at the train table for quite awhile and then in the phone booth and telephone. After that, he walked a whole lap around the floor and impressed everyone during rounds. He's probably going to be sore after all that so we are going to start alternating ibuprofen and tylenol. His nurse, Carol, said he did drain quite a bit during that time out of bed. That's the goal!!! Still no word on getting off the morphine and his morning meds are almost two hours late. Gotta love nursing inservices!

Here Comes Our Boy

The Connie that we knew and love is definitely making a comeback! He woke up at 2:30 this morning (thanks to his neighbor) and was doing his tricks like fake sneezing and trying to be funny. He would poke himself in the head and then laugh. He almost got a little "wild".

I asked the nurse about turning off the morphine drip (since that was the plan anyway, and since he seems more ready to get up and about, it needs to get out of his system) and she said she won't. She doesn't have orders so she won't do it. But, she will give lasix at 6am when he just had a dose at 9pm and still hasn't stopped having soaker diapers! I told her I was going to hold that 6am dose for two reasons. One is I am not getting him up at 6am to give him meds everyday once we are home. I think it is about time they get these drugs on a schedule that makes sense. The other is that less than 12 hours ago he had it and has reacted quite strongly to it if he continues to pee and pee and pee. I want to ask the NP or the docs during rounds about either decreasing the dose or going to once a day. At home, when his heart wasnt' working as well as it is now, he only took it once a day and it was a smaller dose than what he's on here. We'll figure it out, it just seems insane to me that when you get this close to home that they don't start timing things better.

Two more lines down

A nurse practitioner took out the two iv's in Connie's feet earlier this evening. One was clogged and we did both in anticipation that he might go for a walk later. Still being on a morphine drip seems to make him not such a great candidate for walking himself and he didn't exactly jump out of bed when I mentioned it so we'll try it tomorrow after the morphine is turned off. He's sleeping now and thankfully after 25 solid minutes of screaming, the six month old next to us was wheeled out in a stroller to be watched at the nurses station. Hopefully they keep her out there all night ;) I know the mom has to go pick up her other kids and arrange care for them and they live three hours away, but she said the dad was laid off so not exactly sure why he can't stay to comfort her. They are the only ones who can get her back to sleep in her crib!

Maybe a walk later?

Connie had another whole carton of chocolate milk, a yogurt tube, a whole serving of peaches, 1/2 bag of chips and some cookie bites. We're getting healthier bit by bit. He got quite itchy and so got some more benadryl. We're hoping when that wears off he can get up and go for a stroller ride. The nurse said they want him to try to walk to the door. Not sure about that one, but I guess we'll try. He still has two IV's in his feet and one is not flushing anymore so they need to take that out first anyway. I have no idea how they expect him to walk with a line in his foot, but they've done this more than me, right? Tomorrow he'll probably switch over to oral pain meds of oxycodone and tylenol.

Chest Tube Out

That darn morphine makes me so itchy

All dressed, sitting up and eating like a big boy after tube removal

Resting in his new room

Connie got a PRN dose of morphine and 1/2 dose of versed for the chest tube removal. He had been sleeping but woke up. He actually seemed pretty okay with it and laid nice and still. His stitches didn't close the wound all the way, but got it close. That meant they had to use a special dressing that has to stay on 24-48 hours. The plan from here is to eat, walk, lose the other two tubes, make sure pain is under control, and get all the discharge testing. The way it usually works is they pull the other tubes (whenever they stop draining, who knows when that will be) and then the next day they echo, do a chest x-ray and do a pacemaker interrogation. As long as everything looks good after that and his pain is well controlled without IV meds, he'll be discharged. He's going home on Enalapril, Lasix and the thyroid med he was taking before. He'll come off the lasix probably in a few weeks and depending on how his echo looks and how the minimal the leaking is, he may be able to just outgrow his dose of enalapril. I'm still unsure if he'll go home on amiodarone. Dr. Bradley had said that he does send some kids hom on it for a few months, but they aren't giving it to him so far. The only reason for the thyroid med was because of what the amio was doing to his thyroid, so I'm not sure why he still needs that, but that's a question for closer to discharge or when we get home. After his tube was pulled, he ate a whole bowl of cinnamon toast crunch and drank 1/2 carton of chocolate milk. The nurse couldn't believe he wasn't passed out from the sedation they gave. Every single time he wakes up he asks to eat. I think it's because he's afraid that we're going to withhold at some point since he's been NPO so often lately. Now he's snoozing and we're doing some laundry.

All Moved

Connie's now in his new room and they are prepping to remove one chest tube. Greg was with him for the move while I grabbed a bite and when I met them in the new room, I was so disheartened to find that his new roommate is a little infant, the same infant that cried all night on Wednesday night when he was on the floor after his cath. We could hear the poor baby three doors down even with our door closed. As bummed as I am, I guess it is a small price to pay for the miraculous recovery we've had to this point. I just wish a parent would stay with the child to be able to comfort her.

Check. . .Check. . .Check. . .

Everything that was planned for today is now finished other than the chest tube removal and move (planned for 11am). He's been graduated to a big boy bed out of the crib and is fighting sleep with everything in his power. He's a little mad at us b/c he keeps asking to eat and we can't let him until after his chest tube removal, but other than that he's in pretty good spirits. He required no PRN's of pain meds overnight, not even tylenol! He's getting his increased dose of benadryl now so hopefully the itching will subside. If he stays on this pace, he'll get off the morphine completely by tomorrow and then just be on tylenol. After that, the only thing keeping him here will be the drainage from the chest tubes. It could be a few days or a week, every kid is different. I told the nurses it will be so weird having to actually have instructions on how to care for his incisions at home since last time we were here, his scars were completely healed long before we saw St. Louis again. Dr. Bove came in and seemed impressed with our progress. He said he'll stop by tomorrow so we can get a pic of him and ConBon.

Ready for the Floor

Connie is really flying now! They just rounded and the plan is to get rid of one mediastinal chest tube, lose the arterial line, lose the foley catheter in his bladder and stop the milrinone. They are going down on the morphine to 10 and doubling his benadryl. He's now NPO until noon for his chest tube removal.
He had a great night and is now going to move to the floor later today as long as he tolerates all of these changes.

Itchy and Getting Sore, But Moving Forward

Connie is still itching and scratching, despite the benadryl. Good news is he's not needed anything other than tylenol and his morphine drip is down to 20. Tomorrow it will go to 10. Hopefully getting less of it will improve the itching. He got a bath and even got his hair washed!!!! and after that I got to hold him. He fell sound asleep and we went to move him back to bed. That woke him up and all the jostling around got him pretty sore around his chest tubes. He laid back down and avoided needing any PRN IV morphine. He's since gotten up once to eat a few more bites and drink a few sips. He's getting sleepy again and we're hoping for a restful night since it will probably be our last night in the ICU.

Video of Progress!

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Still Doing Great

Connie has had a whole carton of chocolate milk, over 150cc's of orange juice and several saltines. He fell asleep waiting on his food from "room service". His biggest issue today has been an itchy face. He's been sitting up to eat and drink and been very responsive to our requests like asking if we can give his monkey a kiss. He's enjoying watching Max and Ruby and Wall-E in between napping. We'll start weaning the morphine drip this afternoon after that dex wears off completely so we can see what his baseline is for pain. He just got his benadryl and is snoozing again. It's so nice to have him back!

Great Night

Connie had a great night. He settled down with one dose of Ativan and had nothing after that. He's now on room air as he d/c'd the nasal cannula himself! The plan for today is to go down on his morphine drip, get off the dex, decrease lasix to Q12 from Q6 b/c he's putting out more than what his going in, and watch his crit. He's a little borderline, so if he needs volume, it will probably be blood. They want to get him eating today and they are splitting the mediastinal chest tubes so that they can tell if either one has slowed down enough to come out. That decision will probably be made tomorrow. They're keeping the arterial line in for today, but I will still be able to hold him. He's been such a good boy. Greg stayed with him through the night and when he came back to the room he said that Connie did some cute things but I was so tired I can't remember what they were. I'll ask him later after he naps.
One thing they are watching are some arrhythmias. I'm not sure what exactly, b/c it was during the night, but he's having extra atrial beats, and quite frequently. The night nurse felt it might be due to the way his pacer was programmed in the OR, but on rounds they discounted that and said it was fine and the ventricle was sensing the beat and responding appropriately or something to that effect.

Still holding his own

No More ET tube!

Still intubated and a little puffier

With Grandma Marybelle

With Uncle Geoff

I love Daddy

Connie's had more blood gases and they still look great, despite a few incidents and being pretty uncomfortable. He got suctioned and was not happy with that and dropped his sats and pressure and RR and HR went up. This lasted a few minutes before slowly creeping back up. The nurse says we're no where near reintubating yet so not to get too alarmed. He's needed a second dose of the breathing treatment for stridor and some ativan b/c he doesn't seem in pain, but is definitely quite anxious and more aware of his unusual surroundings. He is asking for his "pod" (iPod), to eat, for help (which means he wants help down off the bed) and saying and signing "all done". He also asked for more when the first episode of Max and Ruby ended. He was definitely paying attention, even though his eyes were closed.

Good Gases

Connie's blood gas an hour after extubation looks great, showing that he's tolerating breathing on his own. He's still working a little hard, but hopefully that treatment for the stridor will be effective. Keep praying for a smooth night. We had to give some versed to calm him down but we walk a fine line here. We want him calm and not working too hard to breathe, but we don't want him so calm he is too tired to breathe. It's kind of a balancing act.

Extubated

Connie just got extubated. The chest tube placement was great as it relieved over 200 cc's of fluid from around the left side of his heart. He started getting a little too sleepy and not breathing over the vent so they went down on the morphine drip so that he could wake up enough to breathe in anticipation for extubation. He sprinted for an hour and was completely restless the whole time, taking two of us holding him. Wouldn't you know he's been clear sounding all day until it's time to extubate and then you can feel the junk in his chest and hear it when he was sprinting. They extubated and he's really working hard so they are calling it stridor and treating him for it. He's had it before and two treatments did the trick in the past. Once he proves he can breathe on his own, we can give him some more sedation to calm him down, but he has to prove it first. So right now is hard watching him be upset and then that makes it that much harder to breathe. Pray that he gets rid of this stridor (upper airway blockage) and settles down. Probably no holding any time soon, at least not yet. They want him off the dopamine and maybe with less lines. Of course, if he is really unhappy, they may let me as a last resort to calm him down. He's such a momma's boy.

Chest Tube In

Connie just received his new left chest tube and the procedure went very well and we should be allowed to see him in about 15 more minutes. Pray that this is the final hurdle and he now moves in the right direction. He's getting a little harder to settle, needing the morphine and ativan together rather than one or the other. They haven't yet gone up on his dex because we're hoping to extubate later afternoon or night and it wouldn't really kick in until then anyway so they're trying to hold off on upping his drips any. He's arching his back some and crying when he wakes up. Poor baby. It will be so much better when he gets that ET tube out and loses his LA line. Then he can have some more freedom.

Plan for the Day

Connie's bleeding slowed down, but his crit continued to drop some, indicating that the bleeding was still going on, just that the chest tube had clotted. He has been given a total of 4 units since coming up to the ICU and has orders for more today. His numbers all look great except for his crit, but the x-ray was very telling this morning. His left side looks terrible so they ordered a left chest tube to be put in and he will be having a fogerty (sp?) procedure done to try to unclot the mediastinal chest tube. The surgical resident feels like this will be the help he needs to get moving in the right direction. Once he relieves some of his pressure on the left side, his bp should come back down (it's been slowly creeping up all night). They are keeping his minimal pressure support (dopa at 6) until he's proven himself after the procedure. Sedation-wise, he's stayed relatively stable overnight. He's had PRN's of morphine and ativan and had to have a little versed during x-ray and weighing and rounds due to being messed with so much. He started arching his back and looked like he was crying. Of course you can't hear anything when he's intubated. It only lasted 10 or 15 seconds and then he was restful again after the versed. He seems to like the dex. I'm so glad we found something he does well with instead of a constant battle to keep him settled. At least with him settled, we can focus on the bleeding and drainage. He's been given so much fluid that his feet especially are starting to balloon so they will start Lasix today Q6.

So, if he can get his pressure down a bit after they insert that left chest tube and unclog the middle one, they may try some sprints off the vent and eventually extubate later today. It really depends on what happens with this bleeding.

One new bit of information I learned during rounds was that during his TEE yesterday (the echo they do in the OR after the operation) they noted that he has LV function is "severely depressed". What?! Why did I not know that before. The resident on this morning explained that they think it is just an issue due to all the "monkeying around in there" yesterday and thinks that if they were to do one even now they would see that improved. He said Connie is not acting like a kid with a severely depressed LV and he's showing them he's fine through his numbers and the minimal amount of support he's on. That's somewhat reassuring, but I don't think I'll really feel better until I hear words like we did on Monday telling me that his LV function had been preserved and looked great.

Prayer focus for today needs to continue to ask God to help with this fluid issue, mainly blood loss, and that his LV will kick back in and recover fully from this operation. Also, please ask God to give me patience as I'm in such a rush to extubate him so that he can start waking up and show us that he's okay.

We've had great nurses and are so thankful for all their help. They really do a great job taking care of the sickest kids in the world. There are 21 PCTU patients right now and only 15 beds. They have kids in PICU and NICU and all over the place b/c they just don't have room for all the cardiac kids in one place. Tawnya, it was Kelli V. and yesterday was her last day. She's moving to Cali to go to NP school and be with her boyfriend, the CT surgeon. There's been some turnover here, but most everyone remembers us and that has been comforting.

Needing more blood

Conway is being given another unit of blood. This makes the third unit since getting up into ICU. They don't have in their notes how much he got in the OR, but they said it was a lot because as soon as they opened him, he lost a lot. He's being given cryo and had platelets and plasma too. His gases look excellent from a respiratory standpoint, and his numbers on the monitors are fabulous. The bleeding is even starting to slow down again from the chest tubes (it has been kind of yo-yoing all night). The only thing troubling the staff is that his crit has dropped, indicating that he is still bleeding. If he's clotting in the tubes and still bleeding around the heart that is a bad thing. It sounds like they are not in a hurry to rush back to the OR to do "chest exploration", but that is a possibility. They say that they are hoping after this blood and a few more hours he will settle out and his crit will come back up. On a good note, he is quite sleepy. We've been talking and he is doing what the nurse calls, "waking up appropriately". Not too soon, and not too long. He moves a limb, opens his eyes and goes back to sleep. I was planning on going to sleep tonight so as to give him no stimulation or reason to want to get up and fight the sedation, but now I think I'll stay unless I absolutely can't manage anymore. I just don't feel good not knowing for sure that he's going to stop this rollercoaster with the bleeding. Please pray for his bleeding to once and for all subside or get to an acceptable level. The nurse's fingers are about ready to fall off after "milking" the chest tubes so much. It's almost constant. She can stop for five mintues to get a little charting done or give a med and then it's back to working those tubes.