2nd Followup with Cardiologist Malpass

Our second followup with Malpass today went well. He said John still looks great. He did the echocardiogram himself, because all his regular technicians were at other offices and on vacation... He is definitely the hardest working pediatric cardiologist ever!

There is still no fluid building up, but he still hears the "friction rub" at the apex of the heart. It may be because surgeon Bradley removed some of the pericardium to create the baffle for the blood flow, so he hears rubbing that is normally cushioned by muscle around the heart.
He explained more detail about the repair itself. It's just so hard for us to follow the details and take it in, and this was sort of the first time Tony and I could listen without being in an emotionally charged state... Tony can give you more details if you are interested...
Anyway, we have a followup scheduled for two months from now. We talked about John going back to school. The fears are more about injury from falling or getting bumped rather than infection. I said our timeline was about two more weeks at home, and Malpass said that was fine. The total forecast healing time for the sternum is about six weeks total.

So. We actually have two weeks without any doctor appointments. The next one is with Hearn for me and Twohy.

Tony and I are in discussions about shelf options for Twohy's room, but we ordered some wallpaper border.

Of course, we ordered it at Lowe's and then I found it $10 cheaper per roll online...

Tony is putting John to bed now, he had a brief shower outside in the rain (great idea, Naomi), and I am working-working-working.

Doctor Follow-ups and New Blood

Monday was a big day. We had a grandparent shift change, with Mimi and Pa heading back to Texas by way of Bryson City, NC, and Grandma Indiana making the trek down for this next week. We are very thankful for such loving, willing, and helpful "grands!"

Monday was also the follow up with Feiste. He said John looks great and spent some time with me talking about my fears for infections for John. I overreacted by forcing Tony onto Tamiflu and antibiotics. Feiste helped me gain some perspective on how to balance what will make me comfortable in my efforts to protect John and what is irrational and over-the-line. He also removed the big piece of tape covering the stitch on John's chest tube incision. We go back for a pre-weekend check on Friday morning. Mostly to reassure me...

Tuesday was the first followup visit with Cardiologist Malpass. He heard a small friction sound at the apex of John's heart that was not in the discharge report. He decided to go ahead and do an echocardiogram to check for fluid that would indicate a possible infection. No fluid found, so we will go back for another listen and ECG next Tuesday. Malpass will also remove the chest tube stitch that day.

John gets better and "more himself" each day. He is loving having Grandma around, as are Tony and I.

We had a rough night last night (Tuesday night), and I am starting to think about a link between tylenol and a difficulty in John managing his discomfort. Last night before bedtime was the first time he had some tylenol in about a day and a half. He didn't really want it or ask for it, but I talked him into it. He woke up unhappy about 4 hours later. I'm wondering if the tylenol rids him of the pain but makes it more present for him when the medicine wears off.

We also had an early morning this morning. He fell asleep on the futon in his room, and fell off about 5:30am. Only about a foot off the ground and no damage seems to have occurred, but it scared the bejesus out of me and I couldn't let John go back to sleep, because I kept grilling him to make sure he was ok. Worst parent ever, right here.

Tony and Grandma were the strong team this morning, while I slept in. I'm exhausted again now and glad it's bedtime again.

Twohy still seems fine and occasionally kicks up a storm. I'm glad he's with us.

Home again! Can you believe it?

We can't believe that we are home already! We got home around 4pm (Saturday). Kerri's Mom brought over a delicious BBQ dinner, which has been mostly consumed already.

John is watching "Cars." Tony is resting in his room, having taken his first doses of amoxicillin and Tamiflu. He started developing flu-like symptoms yesterday midday, and his doctor agreed that we should be better safe than sorry and over-treat so as not to endanger John. Tony drove home in the CRV, and John and Mimi and Pa rode in the van. I rode half in the van and half in the CRV. I'm the liaison between the sick and the well.

We are all tired. John fell asleep around 6pm. I tried to move him, but he woke up and asked for something else to eat. Hopefully he will sleep well tonight since he hasn't taken a real nap today. It was also a good chance to dose him with tylenol.
John is doing really great, walking around, playing with his cars, and peeing on the potty. He tried to climb up the back of the futon like he always does, and it hurt a little bit. I think it surprised him. He's just testing his limits. He can only raise his arms halfway right now.

Followup with Pediatrician Feiste on Monday and Cardiologist Malpass on Tuesday. Now we guard against infection and bumping his chest, keep the incision dry for a week, and no crowds or school for two weeks. He is recovering very nicely so far!
All things considered, this whole experience has been so much better than we expected!

Discharged!

We're out! We're back at the hotel in Charleston. We got here about 2:30pm. We'll head home tomorrow morning. Mimi and Pa will go back Clemson with us to get us settled and then Grandma Henn will come to help us start the recovery process at home!

It happened very fast. John is happy to be out, but right now is his hard time of day. He's watching "Cars," Tony is resting and I'm about to start work.

Woohooo!!!

More details when I have the emotional energy to fill them in. I was actually asleep at the hotel for most of the morning. I got stuck at the hospital last night because there was a small storm-induced flood blocking the parking garage... So silly.

Here are some pictures from Grandpaparazzi's Neighborhood that show the last little bit in the hospital!

Thursday, 7:51pm

John is sleeping (since about 7:00). Tony and I are with him, I'm planning on working and posting, and Tony is watching "The Incredibles." We went out to dinner at an Italian restaurant in the Best Western motel, about 2 miles from the hospital. It was nice (and yummy). Getting away from the hospital for the first time at the same time as Tony allowed me to lower my defenses a little. I was weepy and then I yelled at a panhandler who tried to ask Tony for money. As he started up his spiel, I yelled "Our kid had open heart surgery three days ago. GO AWAY!" Evidently I had been needing to whip that one out for awhile, because it felt really good...

They took out his pacer wires today in the procedure room on the ward. Tony and I went, Jennifer, Bradley's assistant did it, and nurse Laura assisted. They also removed the big piece of tape covering the chest incision, re-dressed the opening for the chest tube, and removed some tape left over from other stuff. He was anxious, but it didn't take long and he recovered quickly, ceasing to cry by the time we got back to the room. He finally settled for a nap around 3pm, Tony was sleeping, and I went out to the parents room to rest also. He went down for a brief echocardiogram about 3:30pm. After that, his fever started to go up. He had some tylenol, it still went up a little more. Nurse Laura also gave him some oxycodone to help with any discomfort. Tony and I went ahead and went to dinner, and about 7pm, Pa called to say John was sleeping and his fever had come down a little. He still is resisting fluids and food, but he had juice/water earlier today, so he's not completely dehydrated.

I think that's it for today so far. I wish I had a signoff phrase... I'll start working on one for tomorrow.

Quick update, Thursday 11:39am

Tony and John are in bed resting and watching "Cars." John just got a dose of oxycodone in preparation for the removal of his "pacer" wires. He will go to the procedure room, but they assure us it is just two little tugs and over. The anxiety and dread will be the worst for John, so we are planning on going with him.

He had a good morning. Tony stayed with him last night and I got there about 7am. Tony left for shower and breakfast, John and I had fun playing with cars, playing Nintendo DS (Smart Boys Toy Club has a great balloon popping game), and reading Berenstein Bears. When Tony got back, I went to breakfast, Mimi and Pa came and they went to the Atrium, a play area where no medical procedures at all take place. They were back in the room by the time I got back, but he (and his chest tube collection chamber) got to the ride in the wagon. I have been assured there were pictures taken.

Here is the link to Granpaparazzi's blog, where there are lots of pictures from the past few days. There is one that is hard to look at, so be warned.

Thanks.

Wed, 10:02pm

I'm back at the hotel. Tony and John are in the ward on 7C (telemetry, where all the pediatric cardiology surgery recoverees go).

Today was a big day. John is still with his chest tube, pacers, and left-hand IV. He has to wear a little box attached to electrodes on his chest that the nurse hooks up every four hours to get his vitals. He has to wear the blood-ox sensor. He is coming off the narcotics, and this afternoon was rough.

After telling us that we would be in PCICU one more night, they came back and said they had a bed for us in 7C. So they moved him at about 6pm. Not a good time of day for a toddler, particularly one who is cranky, tired, confused, overwhelmed, and recovering from two surgeries.

He did a really good job as usual. He is really starting to experience some discomfort since he is coming onto regular pain medicine, as opposed to the really good stuff. He just needs rest, rest, fluids, fluids, and he has been fighting both. My dad reminded me that on Monday when he needed to eat and drink he did, so I'm trying to remember to trust that. He did eat 2.5 chocolate chip cookies today, as well as some apple juice, a little pudding, and a little jello. So far he has kept it all down.

He had a hard time letting go to go to sleep this evening. Tony and I finally just started making up Tony's sofa bed and talking about this and that, and John was able to relax enough to go to sleep. He's just having trouble getting his mind off his own discomfort and confusion, it was a reminder that sometimes the best distraction is everyday stuff...

Tony's holding his own, hoping he will get some sleep tonight. Even though the move is rough, it is a vital step, and will hopefully help make it easier to care for John so that the burden doesn't fall completely on Tony's shoulders. We can eat in the room, there's a phone, and we don't have to leave for shift changes and rounds, etc.

They were set to give John some IV medicine (lasix and torrodol? for pain) at 10pm. Hopefully it will not rile him too much. He will then have to have his vitals taken at 3am. He has been strongly resisting the blood pressure cuff, but we were able to have some limited success with it at 9pm. We counted up to and back down from 20 while it was going to give him something to focus on. Like everything else, it worked this time, and we'll try it next time...

I feel slightly discouraged on the surface, just because I got caught out by my expectations. Overall, today was a really great day because we made very large steps forward in recovery: removing lines, eating and drinking food and keeping it down, peeing in the portable urinal, moving to the 7C ward, and even playing with a balloon and his cars a little bit. We actually had some smiles today.

I just hope, hope, hope, and pray that the two boys can get some good sleep tonight.

BTW, John has his baby (stuffed golden retriever) and backup baby (mom likes to have two, just in case) and they are named Twohy and Keats today.

Wed, 1:56pm

Thanks everyone for your great comments! We are still really feeling your support.

The strip on John's forehead in the previous picture was a blood oxygen sensor for his brain. At that point, it wasn't actually hooked up to anything (I think) but John wasn't ready to take it off, so we didn't. It's gone now.

Tony is in the PCICU, John is sleeping, and Mimi and Pa are getting lunch and recharging.

It's still going really well. Today, Mimi and I helped the nurse remove his aterial IV and the IJ (intra-jugular, rather than intravenuous). He is down to a blood oxygen monitor (tape with a light) on his toe, a blood pressure cuff on his right arm, his left-hand IV for medicine and drawing blood, a chest tube, and his "pacers" (the lines used to pace his heartbeat... not used much, but they come out at the same time as his chest tube). The chest tube and his pacers will come out next, but he can go up to 7C, the telemetry ward, with those still in place. He is all packed up and ready to go, they just have to find a bed for him. He is evidently competing with 2 kids in the catheterization lab who also need space. The bed management department is on it.

John seems free of the anaesthesia from yesterday, is not being sedated, and is just receiving pain management meds, a low continuous dose and other boost doses as needed. (If I have that info correct). He's getting Lasik to help with fluid reduction, and antibiotics, not sure what else... Everyone is very happy and impressed with his progress and his spirit. His night nurse last night and his day nurse today have commented on how cooperative he is. He has been able to ask for what he needs, express his opinions, hear the explanations, and choose to cooperate. Even when he doesn't want it to happen, he has been working really hard to do what he needs to do.

Barring anything unforseen, the chest tube and pacers coming out will be the last difficult, possibly pain-causing part. Now he just needs to rest and eat and drink. I'm sure he is very sore all over.
He has had apple juice and a whole chocolate chip cookie, both of which he has been able to keep down so far.
He's been so great. He really wants to be done with the whole process, but he hasn't been whining or asking for things he can't have. We have all been challenged to rise to his level of bravery.

Thankfully the harder parts have come first, with smaller steps down each time. That is the way I like it, and it seems to work for John and Tony as well, so I think we are really doing a great job functioning as Team Penna.

Thanks for sticking with us, I can't say enough how much difference your support has made!

Wed morning, 8:28am

John seems to be doing great.
Tony asleep at hotel, I'm waiting to get back into PCICU.
Last night he woke up about once and hour and the nurse and Tony calmed him back down. They took him off the ventilator, he had an oxygen cannula briefly, it's gone, I believe the catheter is gone. Off the blood pressure medicine. Vital signs good. Has been sitting up occasionally, coughing (which is good), and watched a little bit of "Cars." When I left to take Tony back to the hotel, John was sleeping with his head on his puppy, under his Bee.
I got about 5 hours of sleep last night, Tony and I both had breakfast. Tony turned off his phone, I have my phone, but I can't answer it in the PCICU. My parents will probably head over in a couple hours and then I can leave to update again.
Dr. Bradley has checked on him once this morning. He had an X-ray last night. Still has line into heart, left-hand IV, chest tube, and pacers.
Thanks again everyone. It's going very well. Hopefully he will move to 7C sometime today.

PCICU pic

Here's a pic Tony took around 7pm, after the second surgery.
I'll put in some extra carriage returns so that you only scroll down if you want to.

7:27pm, John back in PCICU

Ok, Tony and I are back at the hotel, kicked out of PCICU until 8:30pm while the nurses do the shift change. This will probably be the last update for today, unless something unexpected happens.

Basically the slow bleeding after the open heart surgery was enough to "worry" Dr. Bradley, so they took him back into surgery to make sure they hadn't nicked a vein or anything. He came out after about an hour, Dr. Bradley said he didn't find anything specific, just some bleeding near the sites of the sternal staples, so they put a few more stitches in. We got to go back in to see John around 6:15, he looked paler and thinner, but he was sleeping fine. Sarah (PCICU nurse) and Bradley said he looked good and was doing well, the bleeding had slowed, and I got the thumbs up from Bradley. Sarah said Bradley wanted to keep him mostly sedated for the night. Hopefully that means the timing of his breathing trial (to see if he can breathe on his own) will time out well with waking up and the removal of the breathing tube.

He got a transfusion during the first surgery, none during the second, and will probably get some overnight. He has still been getting plasma.

We're glad he's doing better, reaching another good spot in recovery. I think through this whole thing, neither Tony nor I has had any doubts about the competence and confidence of his entire care staff. It just hasn't even been an issue.

Tony is taking a shower and plans to head back for a couple more hours before coming back to the hotel to try to get a few hours rest before John wakes up. I am going to try to get some work-work done so that I can maybe go back with Tony for a little while.

Thanks yet again for your continued support. It really has made the difference.

2:42pm, We saw him in the PCICU (posted late)

John is still asleep. Dr. Bradley was in the PCICU when we got there and said John was bleeding a little more than they want, so they are giving him a plasma drip. Everything else looks good. His heart is beating well on its own, he is on the ventilator but taking a few breaths on his own.

Tony is with him now. I stepped out to update ya'll and get a drink of water. Our nurse right now is Sarah.

He looks ok on the bed, just lots of wires everywhere, of course. His IV hand is a little swollen, but other than that he looks like he's sleeping, which he is.... they'll wake him up once the bleeding looks like it's going to stop.

They are now testing the fire alarms... so funny.

Mimi and Pa are heading over here with food.

He's out of surgery! 1:12pm

We just finished talking with Dr. Bradley, Jennifer, and an unidentified blonde, whom we may or may not have met yesterday...

Bradley said the surgery went great. They found what they expected to find. They left the anamolous vein connected to where it was and made a hole between the right and left artria, and built up a wall of tissue so that the blood could flow into the correct atrium.

He is in PCICU and they should be ready for us to see him at 2pm and they will probably wake him later, we think sometime this afternoon, if everything is going well.

Thanks for sticking by us today!!!

12pm Update

From Jennifer:
"They're more than halfway done. They'll be trying to come off the heart-lung bypass within the hour. John remains very stable and continues to do well. Another update in an hour."

Yay!
Tony and I split a personal pan pizza. We are back in the PCICU waiting room. Just waiting. Doing fine. Waiting is not as difficult as yesterday was, so I'm enjoying the emotional respite.

11:15am

From Jennifer:
"Things continue to go well in the OR, they are working away, John remains very stable and continues to do well. Next update at 12pm."

Tony and I are heading down to the "white tent," which is the hospital cafeteria while they are refurbishing the real hospital cafeteria.

10:13am, next update

Quote from the text page from Jennifer, the surgeon's assistant: "Things are going well, they are on the heart-lung bypass, John is very stable."
Next update at 11am.

9:17am, first update from Physician's Assistant

Jennifer is Dr. Bradley's physician's assistant. She just sent our first update. She said they are just about to get underway and John is doing well.
She will update again at 10am.

8:05am Tuesday, Surgery is on

Tony and I are in the PCICU (pediatric cardiology intensive care unit) waiting room. They just took John back. It went really well this morning.
He had an ok night. His fever went up once and he didn't sleep great, but he was in fine spirits this morning. We sat with him for about an hour and a half in the pediatric surgery holding room. We had to force the Versed, but he recovered very quickly. He was loopy and relaxed when he left, and watching "Cars" on the child life specialist's portable DVD player. He was allowed to take his Bee, his dog Keats, and his new Dinoco helicopter with him.
(8:07: the child life specialist just came back and said he did great, just watching the movie.) We'll get a pager and they will update us hourly.
Everyone here has been really great. We are very thankful.
We are heading up to clear out the room where he and Tony stayed last night.
We'll post again as soon as something changes.

Quick Update

It's 11:15pm on Monday. We made it through the day.
Tony and John are in a room on 7C, the telemetry ward.
We got to admitting at 9, had an echocardiogram, which went great.
Then John had blood drawn and IV, and it was downhill from there. It was a little tough and they had to draw blood twice, so John was scared and unhappy.
He then went for a CT, he cried, but was still.

Then evidently he had a reaction to the contrast dye they inject into the IV for the CT. His fever started going up about the time we finished talking to the cardiology fellows, the surgeon, the physician's assistant, and the anaesthesiologist. Once we got home, he slept for about 45 minutes and then woke up very unhappy and burning up with a fever of 103.5. We put in a call to the pediatric cardiologist fellow on call and Feiste and the physician's assistant. She rallied the team and they said, give him some tylenol and bring him back in. Evidently, the doctor from diagnostic radiology called it right, which was a delayed reaction to the contrast. John was unhappy and feverish and lethargic and sleepy until about 8pm. During that time we talked again with Bradley and the ped card fellows and they all decided to admit John for observation and see how he is tomorrow morning.

At 8pm, John woke up and started asking for food and drink. He was perky, watching TV, and interested and happy again. It was an amazing transformation! He then began telling us he was all better and wanted to go back to the hotel. He said, "Mommy, my tummy doesn't hurt, my arm doesn't hurt (the arm where his IV was), my other arm doesn't hurt, and my head doesn't hurt."

By the time we got into the room on 7C, he was his usual perky, charming self. He and the night nurse on 7C did a little standup comedy show for us all!
Tasha, the night nurse, was fantastic, she was exactly what we all needed. Very confident and creative. She had the best pieces of advice so far: "Take your cue from him" and "Coming in here happy and healthy is the best case scenario." That was custom-tailored for what I needed to hear and remember.

I'm back at the hotel. I'll go over to the hospital (just 5 minutes away) tomorrow morning (tuesday) at 6am, when they will check him again and decide whether to go ahead with the surgery...

It was a rough day, but we came through it pretty well, all things considering. And John feels fine now, which is the most wonderful thing...

Thank you all so much for your prayers and thoughts. They definitely buoyed us up, even when we weren't aware of it. It was the only way we got through, I think. That and the fabulous staff at MUSC and the super-duper catering, chauffering, and assisting by Mimi and Pa!!!

Botanical Garden with James and Christine

Our good friend Christine came to visit this weekend, and we went to the Botanical Garden on Saturday morning. Our other good friends James and Mark joined us for a grand ol' time!!!

July 10th ultrasound images

Here's an ultrasound image...




...and a 3D model image...