Piya's Perspective

Yesterday morning we checked out of the hospital!  Didn’t get much sleep the night before.  Simeon was constantly hungry and didn’t fall into a good sleep until 3:30am.  I waited an hour before falling asleep myself — he woke himself up a couple times and I was getting tired of falling asleep and waking up 15 minutes later.  When I was satisfied he was sound asleep, I went to bed and got a good 3 – 3.5 hours of sleep.  Well…not necessarily good, the bed didn’t do much for my back and shoulders.

We finally escaped the hospital around 11am.  And after stopping by Saturn to pick up my car, we got home and Simeon was hungry.  In fact, he was pretty much hungry for the rest of the night.  Yet another 2-hour feeding…tho this time all me – no bottle.  He also seems to have a knack for knowing when I sit at the computer.  This is the first time I’ve had more than 5 minutes in front of a monitor and I think I hear him starting to call me again.

Tegan was so cute last night.  Simeon was up until 1:30am (starting feeding him to sleep around 9:30) and at one point, Tegan was standing guard outside his door waiting for me to finish.  I called her in once, but after a quick peek in and getting a slight petting, she took her place in front of the door again.

I can’t tell you how nice it is to see Simeon’s face light up.  He’s his old self.  Now that I look back at the last couple of weeks, I see more and more signs that this surgery couldn’t have been put off much longer.  He was smiling less and less, he was starting to show a bit of blue around the mouth, he was having trouble eating without falling asleep – only to wake up 30 minutes later still hungry.  Now when he’s gotten enough food he’s all smiles and giggles.  Biiiig smile and cute laugh.  I’m so glad that everything has worked out and that he’s home and healthy.

Seems the quick road to recovery means keeping busy.  I woke up with time this morning and grabbed some breakfast before rounds.  When the doctor’s came by, they had their discussion and offered a glimmer of hope that we could go home in the evening.  I then thought I would be waiting for the chest tube to come out and then we’d be done.  I should have realized there would be more. 

They mentioned they wanted his stomach to be empty when they removed the chest tube, so I was told not to feed him.  Unfortunately, he wound up having to wait another 2-3 hours, and he was already getting hungry.  Let’s just say he was a bit upset by this.  Heart rate managed to reach 196.  I did at least have the foresight to ask for some sugar water that I could dip a binky into and that helped a bit.

I managed to calm him a bit (HR down to mid-170s) when some techs came in to do an Echo Cardio Gram.  1.5 hours later he was finally done with the echo and a much calmer boy.  The ‘echo dude’ (as the tech signed his heart pillow) wasn’t even out of the room when a lady came in for an EKG.  After the EKG was they did a heel prick for some lab work and finally he got his chest tube out.  He wasn’t quite done yet tho.  At least they let me feed him before his chest x-ray.

He managed to get a nap after eating, not surprising considering he’d been awake all morning and ate for 40 minutes.  I shouldn’t have been too surprised that he ate the rest of the day — literally.  Yesterday, when I’d rushed to see him in the morning, I was told he’d guzzled 4 ounces of breastmilk.  After the chest x-ray, he ate for an hour.  Then rested a bit before eating for 2 hours.

Not too long after his afternoon meal, Deb and a few coworkers stopped by to say hello.  It was a crowded little room, I must say.  It was nice to visit though and my coworkers had brought some goodies.  Snacks and logic puzzles for me, toys for simeon.

In between everything, the nurse practitioner stopped by and explained that he needed to stay overnight.  After looking at the echo and his blood pressure, they noticed that his left ventricle needs some help.  It is so used to slacking off and getting the right ventricle to work extra, it needs a little motivation to do it’s fair share.  So, they’re monitoring his blood pressure over night and we’ll go home with a drug that relaxes the blood vessels.  The nurse practitioner also explained a bit about taking care of the incision and chest tube area, about the next few dr appointments, and a way to increase his calorie intake.  Knowing how tired I was, I asked her to stop by again later and explain it to Ari as well…I was just afraid I’d miss something.

So, now I’m awake because Simeon keeps catnapping…he’s finally getting a little longer sleep so I think it’s safe to try again myself.  He’s woken up a couple times, but is falling back asleep on his own.  Here’s hoping I’m not totally over the sleepiness from earlier.  I was so tired I napped while he was sitting with me on the bed.  Now I feel wide awake :s.  At least I can rest assured I will be in my own bed tomorrow night.  Well – unless I’m in the chair in the nursery feeding Simeon all night. 

Yesterday went by pretty quickly.  I woke up around 8:15 and rushed to get some breakfast before running to Simeon’s room so I could be there before rounds.  Turned out I didn’t need to rush – they finally came by around 9:30 or 10.  Results:  he’s looking good – let’s start getting everything out of him and transfer him out of ICU.  They spent the next hour or two removing everything but the chest tube.  He did wonderfully (so did daddy, who was actually helping).

After all that was complete and I had done what I could to feed him, Ari took me out for lunch.  It was good to get out of the hospital, though I kept feeling like I was out for too long. 

We got back around 2:30 or so and spent the next few hours waiting for a bed in recovery.  I eventually tried, unsuccessfully, to feed him again and they were finally ready for him around 4:30 or 5.  We started packing things up and were moved by 6:30 or 7.

Last night’s bed was much more comfortable.  They have a slide-out sofa in his room.  Not as good as my bed at home but 100 times better than upstairs.

I also had a couple of sobering conversations.  Met a lady in the cafeteria who has been here a month.  Her baby is 2 months old and has had 4 operations so far in an attempt to get the intestines on the inside.  And our roommate is a 1-month old preemie who was diagnosed with cystic fibrosis.  Grandma is staying with her – grandma and grandpa just finalized the custody papers.

Talking to these people make me realize just how lucky I am and how easy we have it.  Simeon’s condition was simple compared to these – especially since it was discovered when he was 3 days old and he was otherwise extremely healthy.  He had his problem fixed just as he started showing signs of danger.  These other families have been for a weeks…Simeon got here yesterday and should be gone by tomorrow.  I am so thankful that things have gone so well for us and pray that things go as well for these other families.

Extremely long day.  We brought Simeon to the hospital around 7am.  That was the toughest part for me.  Waiting for the anastesiologists to take him.  Both anastesiologists and at least one nurse stopped by to introduce themselves and say hello, and around 8:15 Simeon was carried off.

Then there was the waiting.  We were alerted by page when each milestone came and went and the first alert (that surgery had begun) was about an hour to an hour-and-a-half later.  The next alert had me a bit nervous initially – why would be getting a second page so soon after the first? what went wrong?  Turned out the bypass machine was on and all was going well.  We were then paged when he was safely off the bypass machine again and one last time when they were closing up.  Around noon, the surgeon came out to let us know how everything went.  Apparently the hole was a larger than he expected from the previous ultrasounds, but it was in an easy to get to place and they didn’t see any leaks.  Overall, things went smoothly and they’d let us know when we could see him in ICU.

After grabbing a bite to eat, we received a page that we could visit him.  It wasn’t nearly as bad as I expected.  Whether I held up because my motherly instinct kicked in or because I had prepared myself for worse – I don’t know.  He had (and has) quite a few tubes sticking out, but he was covered with blankets so we didn’t see everything all at once and the nurse was doing everything she could to keep him comfortable. 

Around 2:30 or 3, he passed the first hurdle – removing the breathing tube. They had to stop the anastesia and wake him first, and when he woke up he was pissed. I think they wanted to wait for his heart rate and blood pressure to go down, but it didn’t happen – it stayed around 160 for the most part, though he hit 180 or 190 at one point.

I stayed by his side for a little bit and then went downstairs to contact a few people.  When I got back to his bed about an hour or so later, they had removed the catheter and he was back in a diaper.  Still quite pissed off and in a bit of pain, but looking more and more like his old self.

After dinner, Ari came in to say good night to Simeon and then went home to get some sleep.  I had managed to secure a room for the night, so I stayed in Simeon’s room for awhile.  Simeon still wasn’t happy, but his heart rate and blood pressure were lower.  Eventually, the nurse was getting nervous about giving him even more morphine and tried some Benadryl.  That seemed to do the trick.  With the help of Benadryl, sucking on my finger and some soothing music, Simeon eventually fell asleep (around his normal bedtime).  I’m sure I dozed off for a bit, but finally headed up to my little room for the evening around 11:30 or midnight after meeting the night nurse.

The room was definitely designed for somebody who just really needs a bed.  Small room and hard bed.  Enough to get me through the night, which is all I needed, but I’ll be so happy to sleep somewhere else tonight.

I woke around 3:45 or so and went to see how he was doing.  They had just given him an x-ray and the nurse was feeding him some Pedialite – and boy was he guzzling this stuff down.  We gave him a tiny bit more, but he wasn’t happy when he discovered we wouldn’t refill it again.  I gave him a finger to suck on, and we turned on a little music to help soothe him.  I was really happy to see that event upset, his heart rate was no higher than 130s – and generally stayed under 120.

He finally fell asleep a little bit ago and now I’m getting ready to do the same.  They’ll page when it’s time for rounds and he should be out of ICU by this afternoon.  Here’s hoping eveything continues to do well.  Thank you again to everybody who’s thinking of us – he’s doing extremely well and he’s on the fast track to full recovery – I couldn’t ask for more.

Today was long.  We met the surgeon, nurse practitioner, social worker and anasthesiologist.  The surgeon gave us a much more detailed description of the actual surgery and answered many of our questions and concerns.  The nurse practitioner basically gave him a full physical and answered our questions about recovery.  The social worker is there to help families with emotional support and wanted to meet us.  Then, after getting some blood drawn, we met the anastesiologist who gave a detailed description of everything they will need to do to get him ready for surgery.  All-in-all a sobering day.  The reality is there, I’m sufficiently nervous about tomorrow and the days after, but comfortable with the doctors I met and feel he will be in good care.

Today, Simeon did wonderfully – flirting with every female he came in contact with.  It wasn’t as bad for him as I thought it would be and hopefully he will have a good night and I will see him all safe and sound in ICU tomorrow afternoon (even if it doesn’t necessarily look that way on the surface).

Well, he sounds to be calling me now, so I’ll have to finish this post later.  Thank you to everybody who is thinking of us and I’ll be sure to let everybody know how it goes.