MLK Happenings

Patrick’s surgery has been rescheduled for Tuesday, Jan. 18th at 7:30am. It was only a year ago, as a MLK weekend gift to us, that we found out that I was pregnant with a ‘Pedro.’ Essentially, that’s when our relationship with Patrick began.

This year our MLK gift will be a better-working heart for Patrick. Based on his test results, the cardiologists are pretty sure they’ll need to do the Glenn procedure in addition to the valve repair.

Patrick’s cold is still lingering a bit, but seems to be on the way out the door. Good riddance! He’ll see his regular pediatrician on Friday for a well-baby visit, we’re hoping by then he is back to full health. Pre-testing will be on Monday, the 17th, and then we’ll check him in at 5am on the 18th for the real deal. Maybe our dress-rehearsal last week will make it a little less stressful this go-around.

Every post deserves a picture, so here’s a shot from early December that shows how P feels about pre-testing and surgery:

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Postponed

We were nervous about Patrick having surgery with the congestion and cough he has had this week, but his lungs have been clear so on Tuesday they cleared him for surgery. This morning, however, once the anesthesiologist checked him out and discussed it with the surgeon, Dr. Nigro, they recommended that we postpone. We want it to be as safe as possible, so it makes sense to wait until his cold clears up. Coughing and increased pressure on the lungs are definitely not what we want for Patrick while he recovers from having his pulmonary artery (which takes blood to the lungs) messed with, among other things.

We have an appointment to meet with Beth on Tuesday, the 11th and we’ll go from there to reschedule. It’s a bit of a roller coaster but this will be best for Patrick. It has been awesome to have such an outpouring of support–thanks everyone!

Here are some photos from Braden’s ipod–taken in ped’s pre-op and the O.R. waiting area this morning.

Happy Baby

At 7pm last night they took Patrick’s tight dressing off and stopped sedating him. He greedily downed some cherry flavored pedialyte and went back to sleep. At 11:30pm he was hungry again and I was allowed to feed him some expressed milk. He was over the moon about it! He just kept eating and eating, and despite some effective burping, he ended up vomiting shortly after getting back in the crib. Poor little guy. He was quite thorough, though, and ALL of his bedding had to be changed. Casualties included the two blankets we brought from home.

After puking, Patrick was pretty worn out–I could tell because he went to sleep with his hands at his sides. Unheard of. His arms are always up by his head. Always. I settled in, thinking I was going to get more sleep than expected. Ha. Funny me for thinking that. Patrick napped for 30-45 minute increments throughout the night, eating every 2 hours, briefly napping, then playing for quite some time before “asking” for another snack. I think he met every single night nurse because each of them took a turn to come shut of the alarms when our wiggle worm got too active for the leads to capture his stats accurately. Of course he was quite entertaining for all–they don’t get to see happy babies as often around here. He only fussed a bit when they did a chest x-ray around 5am.

This morning Patrick has had a little bit of tylenol to help with the soreness where they inserted the catheter. The doctors came by for rounds at 8:30am and we’ve got discharge orders! So we should be heading home soon.

Not Too Surprising

The procedure is done! Dr. Pophal reported that there weren’t really any surprises. The plumbing looks good, although there is quite a bit of swishing around in Patrick’s heart. The only thing that looked different was that the ASD (hole between the right and left side of his heart) is bigger than it appears on the echos. Not too big a deal since they can close it up when they go in to fix the valve.

Dr. Rhee was able to get Patrick into SVT (super, super high heart rate) so that he could see where it comes from and map the pathways. So, we know that the SVT is still there, but the meds are working well because he hasn’t had any incidences when he is on it regularly (they skipped his dose today on purpose). They were also able to bring him right back out of SVT, so that is good too.

Patrick will join us here in Room 10 in the PCTICU shortly. He has been on blood thinners during the surgery, and it may take an hour or two for them to run their course. The insertion site for the catheter will be bandaged pretty tight to ensure that there is no extra bleeding before his blood is able to clot again. His leg may be discolored for a day or so because of the tight wrap, but he’ll be fine. We are excited to see him again.

Ped’s Pre-op

About an hour ago we kissed Patrick goodbye as he relaxed contently in the nurse’s arms at the cath lab. She took him into the lab where Dr. Pophal will spend a couple of hours or so on the catheter, after which Dr. Rhee will study the electrical pathways. If any of the pathways have become complex, the whole procedure could take as long as 5 hours. Otherwise, it will only be about 3 hours.

This morning, Patrick fussed a little when we got him in his carseat and on the drive to the hospital, but fell asleep shortly before we arrived. He slept soundly while we got him registered and didn’t wake up until we settled into Ped’s pre-op. Even then he woke up happy and was happy to lie in the crib watching, and sometimes smiling at, the nurses. He smiled and smiled while Dr. Phophal went over the procedure–because Dr. Pophal uses his hands a lot while he speaks.

Patrick was mildly annoyed when we had to remove his pajamas, and then became a bit distraught when we put a children’s hospital gown on him. After that he was intermittently calm, but mostly upset for the next little while. Being hungry doesn’t lend itself well to being complacent, especially for a 3-month-old. But eventually they abandoned their efforts to draw blood and decided to wait until after anesthetization. Once they left him alone, he calmed down and rested, although he didn’t really go back to sleep.

Q&A

I just played 20-Questions with Juanita at St. Joe’s to get a better idea of what we should expect tomorrow. Patrick will probably be in the cath. lab for about 4 hours. He will stay in the PCTICU that night–which is where he stayed for over a week in September. Maybe we will get to see/have a familiar nurse or two.

Upcoming Cardiac Catheterization

Patrick has been scheduled for cardiac catheterization on December 8th at 9:30am. We will check him in at 7:30am that morning and he’ll be kept overnight after the procedure (probably discharged by lunchtime on the 9th). Before the procedure they will give him a full check-up to clear him for the catheter. Patrick will go under general anesthesia for this event–which sounds better to me than trying to keep him calm and still. Here is a little description of the procedure:


I was relieved to learn that Patrick won’t be required to fast for an inordinate amount of time or anything. However, he is not to have any breastmilk/formula after 3am on the 8th, but can continue drinking Pedialyte, water, or diluted apple juice between 3am-5:30am. Past 5:30 he is not to eat or drink until he wakes up following catheterization.
After this they will talk to us about when surgery will happen and what they plan to do based on what they see in his messed-up little heart. If there are things that you think we should ask beforehand about the heart catheter, or about the surgery in general, let us know.

A Fixed Valve for Christmas

The cardiologists and surgeon reviewed Patrick’s case this morning and have determined that he needs to have surgery sometime between now and Christmas. They will work on his tricuspid valve to help it be more effective (less leaky) and also direct some of the bloodflow straight to the lungs, so that it will skip the right side of his heart entirely. We don’t have a date yet, but obviously we should have details soon.

Next week, or maybe the week after, Patrick will stay in the hospital overnight to have a cardiac catheter done. As I understand it, the catheter will allow them to look around in his heart, take measurements, check out the guilty valve, and also see what electrical pathways will need to be corrected to avoid arrhythmias in the future. After the surgeon has reviewed the findings, we’ll sit down with him to get a better idea of the procedure(s) that will be done.

So far, Patrick has still been free of any outward signs of crisis. He is eating well and is usually a happy little guy. Such a fun kid!

Leaky

I’ve never seen Patrick SO happy to be back home, but after all of his tests at the Heart Center yesterday afternoon Patrick looked like he could’ve kissed the living room floor upon returning to familiar surroundings. One of his favorite things to watch is the ceiling fan, and he was full of smiles for Mr. Fan. Next he was thrilled to sit in his swing again, and he sat and talked to the little lambs on the swing mobile and smiled at his own reflection in the mirror above the swing. He sure seems to like the handsome dude that looks back at him!

Although he was pretty unhappy about being held down for a chest x-ray, echo, and EKG–not to mention having blood drawn from his little arm–for the most part Patrick was smiley and friendly to the doctors and nurses. Even while the cardiologists were giving us some serious news, Patrick grinned and grinned at Doctor Rhee. Braden and I were not quite so cheerful about the doctors’ report that Patrick’s valve has gotten very, very leaky. Right now the x-ray shows that his heart has not become much more enlarged, but the echo showed that his tricuspid valve is allowing much more blood to leak back into the atrium. His heart is working SUPER hard, and it is only a matter of time before his atrium becomes so enlarged that his heart fails.

Fortunately, Patrick has been eating well and gaining weight, because it looks like the doctors will need to intervene earlier than we had planned. The bloodwork they ordered will tell us how far into heart failure he is, and in the next couple of weeks they will probably do a heart catheter to get a better look at his valve. On Tuesdays the doctors all meet to discuss certain cases and Patrick is on the docket for next Tuesday. Hopefully they’ll have a plan for us after that. Beth indicated that once they decide that he needs surgery, it will probably be about a month before the procedure happens.

For now we are watching for signs of heart failure like vomiting, appetite issues, or labored breathing. Our travel plans are on hold and we are to continue our germaphobic precautions. Airplane rides are definitely out of the question, and even road tripping may be kiboshed so that we stay close to Patrick’s medical team.