Things are Getting Better

Some of you may know that since the first hospitalization of the year in May, Connie has, in a lot of respects, gone from an independent toddler to a whiny, needy, clingy baby. Of course, the trauma of heart failure and being in and out of the hospital played a large part in that, I'm sure. But now that we have been told that his heart is looking better than ever we'd like him to get back to himself so he can grow and develop. This week he has made huge strides in the eating department. He hardly ever asks for "help" anymore when eating and is feeding himself like a champ. He has kind of figured out that if he wants it in his mouth, he's got to be the one to put it there! He's also eating more at one meal instead of snacking on little portions all day long. Again, a lot of that was probably due to his heart and the lack of blood flow to his digestive tract, but it was getting crazy there right before surgery. Then, yesterday we had probably the best new development. He fell asleep on his own for both his nap and for bedtime! I was so excited for me and so proud of him at the same time! At naptime, he was overly silly and wouldn't settle down so I told him I was not going to lay with him if he was just going to play. I got up and left and surprisingly, he did not cry! He didn't go right to sleep, but after he did fall asleep, I noticed he had found some books to look at from the night stand so I guess that's what kept him busy for a bit. Then at bedtime, I told him how proud I was of him for taking his nap like a big boy and after reading stories and praying, I told him I'd leave the bathroom light on for him and I was going to be right out in the family room doing laundry, etc. He said, "Tay" (okay) and let me kiss him and tuck him in. It didn't take him long at all to fall asleep! I hope this continues because it's so nice to have some time in the evenings again! I got so much done and didn't have to wake up to a mess and a handful of unfinished chores. Please pray that this trend toward some healthy independece continues and our "big boy" keeps on feeling better and better.

Post Op Visit

Connie saw Dr. Bromberg this morning and we are grinning from ear to ear. Dr. Bromberg was practically giddy with the improvement he sees and hears. His overall clinical presentation, his echo and parent report are all greatly improved. He can watch the echos from his office and he came in before it was even over saying, "This looks a LOT better!" He is a bit stunned at how insignificant the aortic insufficiency is now given the fact that the aortic valve wasn't touched. I told him that we believed it was God and he nodded his head as if to say that he certainly didn't have a better explanation himself! We had noticed a bit of improvement in Connie's symptoms before we left for Michigan and they confirmed in the cath lab that first Monday that his AI and LV looked "better than expected." We had been so fearful that he would be in such bad shape before the surgery that it would be nearly impossible for him to withstand such a big operation. We know in our hearts that God gave his heart a little boost right before surgery so that he would be strong enough to tolerate all they did and to recover with lightning speed! We are keeping his meds the same for now, and in a month will decrease the lasix in half. He said that he sees a day (but I'm not allowed to hold him to it) when Connie will no longer be on Enalapril (blood pressure med). The whole office seemed genuinely thrilled with our outcome. We go back in a month. He said that generally what you see six weeks post-op is pretty much what you can expect long-term, but he is very hopeful that since he's already seen so much improvement so soon (only two weeks out), that we have a great chance of Connie pretty much being a lot healthier from here on out. He thinks his growth will start to take off now and thinks that every day we'll see him getting stronger and more active. We aren't "out of the woods" yet on the atrial flutter. Time will tell on that one. He said that if he goes six months without any episodes of atrial flutter after being off the amiodarone, he'll be more inclined to relax a little about that complication. We have been thinking Connie was doing great, and now we have the tests to prove it! Thank you all for your prayers and thank you God for the blessings you have given us! We have come to always expect complications and trials and it's been so wonderful to have the outcome we hoped for, to have had a smooth experience. Dr. Bromberg said that Connie has had a pretty traumatic five months and is so excited for him to have the opportunity to finally feel good and be a "normal boy."

Update on Infection

We held out on going to the ER for fear of what we might sit next to in the waiting room. His other two chest tube sites also got red and sore looking, but we kept up with applying betadine and triple antibiotic ointment. He was due to get the stitches out at 9am this morning anyway at the pediatrician's office, so that's what we did. Dr. Davis was sure glad to see Connie home after such a short hospitalization. He said that he thought they looked inflammed, but said that is a normal reaction to those stitches. He removed them and gave us a script for Bactriban, which he said is better than neosporin. We filled it and will apply it three times a day to each site until they are healed. Next up. . .Dr. Bromberg on Thursday at 12:30. Thanks for praying. We are kind of holding our breath for Thursday to "make sure" that he's doing as well as we think he's doing.

Infection

Connie's left chest tube site is red and swollen and yucky looking. We called the cardiologist's exchange and Dr. Bruns (on call) said to try to treat it first with betadine and neosporin and cover it with a large bandage. If it doesn't improve, we will have to take him into the ER. Ugh. That's the last place we want to be with him right now where who knows what all he will come down with after being there plus the fact we'll have to wait five hours just to have one stitch taken out. What we're saying is we could use some prayers that his site gets to looking better so we can avoid the ER.

HOME!

What a day! We are all home safe and sound and made the trip in a little over 8 hours. The nurse practitioner asked me before lunch what our travel plans were and I told her we had a long drive. She asked if we'd like to get an early start driving tomorrow am, meaning getting discharged this afternoon (Weds.). I said that'd be great. Of course, he still had to get interrogated and get a chest x-ray, do all the paperwork, etc. We thought about getting a good night's sleep and heading out in the morning but we both got the itch to get home as soon as possible so we took off about 4:50pm eastern time. Greg drove the whole way.

Some exciting news: Brandon Inge, the third baseman for the Detroit Tigers, was at the hospital today for a special dedication ceremony naming today "Inge Day" there because of all the time and money he's given to the hospital and patients. The Tiger's mascot, Paws, was also on hand. We didn't wait in line for autographs, but we did get Connie's pic with the tiger upstairs as he visited kids in their rooms and delivered a ball park style lunch of hot dogs, nachos, frozen lemonade and caramel corn. I'll post it when I unpack the camera!!

Discharge Status: The results of the discharge testing show that Connie's LV heart function has improved since immediately post-op and the cardiologist today felt that the one wall that is not squeezing as hard as it should should continue to improve now that the mitral regurgitation is mild. The little issue we had with his atrial lead means that his heart is now requiring more battery power from his pacemaker to generate an atrial beat, meaning the pacer is now calculated to last 4.5 more years instead of the 6 years it was on track to last (will have to be replaced sooner). There is a chance that as his heart heals from the trauma of surgery, the power can be turned down some and save some of the battery life. Time and Dr. Bromberg will tell. His post-op meds include Enalapril for blood pressure, lasix for fluid build up (we expect he'll be taken off this in a bit), synthroid for thyroid (we expect he'll also be taken off this since it was to treat a problem caused by another heart med he is no longer on). He's been given a prescription of oxycodone for pain and is taking tylenol and ibuprofen. He's doing great and is so excited to be home finally!

Lord,
We are so blessed to have hundreds of people lifting Connie up to you in prayer and we are incredibly grateful for their love and support. Please continue to bless his recovery at home. Thank you for such a smooth surgery and recovery. This is such new territory for us to finally be on this side of the fence, the ones who go home quickly. Please watch over all the little children Connie left behind who are still recovering or about to have surgery. Guide their medical teams and parents and give the children peace and comfort. In Jesus' precious name, Amen.

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.