A Heart of Gold

Note: Sorry for the delayed message; we apparently had a hacker in our site and we’ve had less time to do this taking care of two little ones this time. Apologies in advance for the length of this:

Friday, Surgery Day: Sophia woke up around 1AM and I brought her into our bed thinking maybe the extra snuggles would help her sleep (and help us with our anxiety). She did pretty well until she heard the little gentle noises that precede the alarm (haven’t had to use an alarm in ages). Then she started tickling Papa to get him up, too. She got really excited when she realized she got to come with us; I think she thought because she was still in her pajamas, Grandma was there (thanks for getting up at 3:30AM!) and we were clearly getting ready to go somewhere that we were leaving her. She was grinning ear to ear and just giddy on the drive in her little coat and feeted pjs. I’m glad she had no idea, but it felt like sort of a cruel trick. She did great for all of her pre-op exams and got to play in the playroom with a little John Deere tractor and read Clifford stories. The anesthesiologist gave her Versat to get her calm before he took her into the operating room and checked her vitals. He said to watch her really carefully because it was like she was drunk. She was really floppy and was petting the nurse’s face as she left for her surgery.

Everything went smoothly during surgery. They didn’t have to cut any muscle and avoided the nerves. The only stitches she has are in her aorta; apparently they go through the aorta to look back at the membrane and remove it. He tried to address her pectus (the raised chest), but he said there wasn’t much cartilage to shave off and he didn’t want to compromise her bone. So, we will likely end up using the brace after all, but it’s only cosmetic, so we aren’t worried about it in the big scheme. The surgeon said she was the star of the OR (not sure how he determined that since she was heavily sedated the whole time).

We got to see Sophia first as she was being wheeled into ICU and watched while they got her settled. She was really trying to wake up, so they had to give her a bunch of pain meds to settle her down until they could extubate her. Because pain meds lower her blood pressure, they used syringes to give her the rest of the blood that was left in the bypass machine. It was a little freaky to see several nurses running around with syringes of blood. They were able to extubate her in less than an hour, which they thought was really great and apparently not very common.

The head surgeon came by that very first afternoon to meet us in person (although we’d emailed earlier), and after Sophia saw us shaking his hand, she reached up to shake it too! She’s normally scared of men in lab coats, but I guess she overlooked that, perhaps she knew he was responsible for her successful operation. (I’m glad I’ve overcome my urge to hug them when I meet them; it would be a little embarrassing I think).

Sophia had a pretty rough first night, though, trying to get some sleep (maybe two hours total?). They tried so many different medications for her, but finally chloral hydrate seemed to work. It was pretty short lived initially, until they increased the dose. We had a fabulous nurse who was advocating very aggressively for Sophia to get something that would work (she apparently even had to swear at one of the residents and she told another: “They both need some sleep!” (Sophia & I)). It seems that the residents (students) have a lot to learn from the nurses and have a difficult time trusting them when they say they are in the room and know what the patient needs. They apparently don’t like to give chloral hydrate because it is like having a beer, but it was the only thing that allowed Sophia to get some sleep, including Adavan, Morphine, Fentanyl, Tylenol, etc. (When I looked up the spelling, it said that it was the ingredient added to alcohol to make a “Mickey Finn,” so I guess they are wise to use it sparingly. Seems like there have been too many times where we’ve had to see our toddler drunk this visit; let’s hope she has a permanent memory that keeps her from ever wanting to be in that state again!).

At one point, I looked up on our blog the medicine that finally worked for her her after her last surgery when we had this same problem. That time it was Versat, but the doctor wouldn’t prescribe it this time because she didn’t think it would work well enough being short acting (I guess). Once we finally got the doctor to prescribe chloral hydrate, after waiting and waiting for these other meds to work, we had to wait for pharmacy to approve, and then for it to take effect somewhere around 4AM. It was really hard to watch her in so much discomfort, but I think it was primarily overtiredness and anxiety being in a strange place, rather than true pain (which seemed to be pretty well managed with all those drugs). She cried whenever any of the nurses tried to come near her. I think it made them feel bad, because the docs reported in rounds that she only likes Mama and Papa. She did progressively better on each dose of chloral hydrate, sleeping longer, etc. She could only get it every 6 hours, so there were some long periods in between the first few doses.

On Saturday night, she had 3 of her Fentanyl bumps in three successive hours, which in the end seemed to get her too sedated. Her respirations were really heavy; she was retracting (her stomach and neck really sinking in), and when they tried to suction her to make her cough, she didn’t even gag. Given her overactive gag reflex, she was clearly out of it. They didn’t think it was bad enough to have to reverse it, but it was pretty scary. I was already getting nervous from the retractions since that was what she was doing when she had the aspiration pneumonia that led to the definite plan for a G-tube and caused everyone to run around crazily. After realizing she was too out of it, they then tried to go down on her chloral hydrate, which didn’t really work, but did go down on the Fentanyl. This seemed to help, and she went into a much longer period of comfortable sleep without needing any chloral since Sunday morning. She essentially slept all day long, Sunday and all Sunday night and really most of Monday, too. She really needed to make up some sleep, so it was good to see her so content. Periodically, she’ll give us glimpses of her personality. At one point, we were singing “Sophia’s here today” and she patted her legs really fast, letting me know that I was supposed to do it fast like her teachers do. She also signed “Big Bird” and “Papa” and got excited to see Cookie Monster on the TV. She was showing off her feet to one of her nurses and giving them back to him to nibble on.

We are gradually getting rid of the various tubes that drive her crazy, and she’s been able to eat since the middle of the day on Saturday. We are still doing it slowly since she’s laying down, but she has been tolerating it well unless she cries hard. She had an IJ (IV line) in her neck, because of its close access to her heart. It also had a little monitoring wire to monitor the oxygenation in her heart. She can’t have one of those on the floor, so we arranged it so they could take that out while she was getting a dose of the chloral hydrate, which really helped reduce the pain. The stitches were really close, so it was a good thing she was somewhat sedated while the nurse used a tiny little pin to get them out, and 3 of us held her down. That neck one was really the scariest since it was hard to protect and so easy for her to get at or to accidentally get pulled when she squirmed trying to change position or get snuggled.

Before they could take the IJ line out, they needed to add another peripheral line so they can have access if necessary (even though she didn’t need it anymore except for the antibiotic related to her chest tubes). She had one in her foot coming out of surgery, but she damaged it somehow with all of her squirming. I felt a little bossy, but after having been through this way too many times w/ her veins so small, I asked that they come right when she was getting comfort meds and use the ultrasound so they knew where the vein was. It also seems like I have to tell every one that the tourniquet hurts her so we put it over a towel or clothes or something. They asked whether Lidocaine bothered her, and I said it worked really well the day before to ease the pain. Well, this time they gave it to her by shot, so it seems to me it defeated the purpose of trying to ease the pain because she cried getting the Lidocaine! Guess I need to specify next them that shots of things don’t help ease the pain of another prick. They also gave her a little “no no” which is like a brace over the IV line so she can’t get at it to pull it out; wish we would have had those before!

She got rid of the Foley catheter, the Arterial-line in her groin that also measured her temperature (which required 5 minutes of pressure on a “calm” toddler), the wires in her chest to act as a pacemaker in the event of heart failure, and a monitor on her forehead for her cerebral oxygenation. She didn’t tolerate her nasal cannula (for oxyegen) unless she was in a deep sleep, so we’ve been using a “blow by” set up. It works pretty well, but we always had to figure out a way to hold it close to her when we are snuggling or a way to prop it when she’s sleeping (usually on a stuffed animal). For awhile, she needed the nasal cannula when she was in a deep sleep because she wasn’t getting enough oxygen, but after she cleared out some of the junk in her chest, she’s been doing much better while she sleeps. The trickiest part is when she is coughing, she doesn’t quite have enough reserves to keep her oxygen levels up.

This was much improved after getting her chest tubes out on Monday. She had this new kind of chest tube from the last time she was in. Now they do two separate ones (so two more scars) on each side of her rib cage, and they each have little reservoirs for drainage. First they removed the dressings, which of course is painful in and of itself (even with Oxycodone and Morphine “on board” as they say). Then then had to clip a stitch, remove the tubing, and retie the stitch (which really pinched her). I was expecting a short little anchor line when they came out, but he kept pulling and pulling probably 12 inches from each side; yikes! I guess they wrap in and around the lung and heart areas to collect any drainage, but no wonder they are so uncomfortable and make it hurt so much to cough. My stomach flipped a little seeing that and remembered John’s warning: “Just don’t look!” Of course my main focus was trying to keep Sophia calm and held down, but I was trying to figure out when it would be over for her… Truthfully, I think I was also trying to figure out when I could actually get away to change my clothes that she wet and spit up on and use the bathroom. I’d had to go since she woke up at 5, but she needed to be held, so we snuggled, thinking it wouldn’t be that long. I also didn’t bother to change her because she really wanted to snuggle, and I figured that was most important. Well, the nurse came by with her 6AM Lasix (diuretic) and then I knew it was a mistake. We decided it was best to keep her comfortable and they’d have to fudge her “ins and outs” a little since her diaper wouldn’t reflect all of the “outs.” I finally got her settled a little after 7 and was on my way out the door, but cardiology rounds were right there, so I didn’t think I’d better leave, since the number one item for discussion was moving to the floor. I was a little embarrassed to be standing there in my soiled clothes, but as the echo tech said later, they probably would have been more concerned if I actually looked nice after sleeping in ICU for 3 nights :). As they left, our day nurse came on, but she had to work with another patient since his nurse was stuck in the snow, so again I didn’t dare leave. Then it was time for the tube removal, so again, I needed to stay. After that, she of course needed more snuggling and I kept thinking Grandma would be there any time to relieve me. Well, turns out she was also stuck in snow traffic and arrived 2 hours and 45 minutes after she left home for a drive that’s typically 50 minutes. By the time Grandma did arrive, the echocardiogram tech had found Sophia looking comfortable and wanted to catch her. By the time that was over, I was sort of used to my state and figured it was best to keep her comfortable. Soon her nurse decided Sophia needed a bath to go to the floor, so I quick ducked out while they were combing the knots out of her pigtails, since she was so relaxed. A couple of minutes later I returned to a wailing baby. She saw them put their gloves on for the bath and was not happy at all. There just is no good time to leave it seems. That’s one benefit of the floor; we have our own restroom, so the ducking out is much quicker.

All in all, Sophia’s “numbers” have been great for all of the heart related stuff; the main issue has been keeping her comfortable. She’s had a 1AM chest x-ray every morning (great timing), has to get weighed before 6AM (I finally convinced them that laying her on the scale that’s half her size isn’t really that effective, so now I also get weighed every morning, too, with and without her), and of course has the regular stethoscope listening, pulse taking, temperature taking, diaper changing, dressing changes, hourly blood pressure squeezes, etc.

They kept her a 3rd day in ICU just to make sure she was comfortable and getting her lungs cleared out. We were happy to stay as long as they would keep us because we get so much more attention there. Although, given her age this time, we still didn’t feel like we could ever leave her alone because although she’d be safe, she’d be scared. They’ve changed the rules so the hospital allows you to get “shut eye” next to your child in the ICU (now if only your child would allow it, too). I can’t believe all those nights before that we had to leave her and just call in to check on her.

We moved to the floor Monday around noon after she got a wonderful spa bath from a couple of nurses, complete with her first French braids (a wonder what you can do with a toddler’s hair when they are drugged up on Oxycodone and Morphine post-chest tube removal). It’s been fun to see more friendly faces over here. We can’t decide whether it is good or bad that so many people remember us from 2 1/2 years ago…and say that they’d never recognize our big girl without us. She’s so long in her crib, there is hardly room for all the stuff they usually keep in there. We’ve had very attentive care all around, and it’s nice to see more parent focus here on the floor, since the last time we were here.

Zoe misses her sister terribly, asking for Swea to be in her crib. She’s been having fun though with Namma (Grandma), Vonne (Siobhàn) and Ish (Aisling) giving her lots of one-on-one attention. She’s also loving having Papa putting her to bed and waking up with her. We figured out it worked better for her to go to bed knowing I wasn’t there; the night I put her to bed she woke up in the middle of the night checking to see if I was still there and kept her Papa up for quite awhile. I have been able to spend two or three hours with her each day, too, so I’m really glad for that. We decided it was best that she not come up into Sophia’s room; she’s pretty sensitive to other kids crying and we think she’d be pretty worried about her sister.

We got discharged early Tuesday afternoon after Sophia proved overnight that she didn’t need oxygen. Her saturation levels did dip a few times when she was upset, but if she was spitting up with just me, she was able to get them back up quickly. If a nurse or doctor was around bothering her, she was much more upset. I think the team realized she just needed to get home to be more comfortable and start healing more quickly. We do have a lot of work to do to get her eating levels back up to where they were pre-surgery; she’s been spitting up a lot, but they apparently trust us to be able to do that at home. I guess there is no magical reversal of reflux for a short time like last surgery. Sophia also got a special visit from Margie her OT today; she had the cutest little smile for her.

John and I went to quick cardiology discharge and CPR refresher course while Grandma more than willingly snuggled Sophia. Then we were on our way! Sophia was just giddy on the way home; so relieved to be out of there. She has been very, very snuggly ever since she was able to move on her own more and get rid of a lot of the wires. It’s so good to have her free again! She went home with a couple of doses of Oxycodone if she needs and then just Ibuprofen and regular Tylenol; amazing for post-op Day #4! She’s basically slept since she’s been home, after having a chance to greet Mukwa, Zoe and Kelly; John and I each rocked her for about an hour and a half and then we gave her a little sponge bath (no baths with Zoe for 6 weeks) and put her down for the night. We did give her Oxycodone before she woke up upset, since the cardiologist thought it was a good idea, as kids often overdo it getting home on the first day. Zoe was very gentle with her, so I hope that is a good sign. We decided to have them sleep separately, hoping they’d each get more sleep, and I reinstalled the breathing sensor attached to Sophia’s monitor. I may sleep on her floor, too, just to be sure. It such a huge change from all these monitors to just home.

Sophia’s main recovery period is 6 weeks. We can’t pick her up underneath her arms, so we are cradling a 32 pound toddler to get her in and out of places. She also has to be careful not to get going too fast or fall forward or anything. It’s a much different story now that she’s mobile and has a sister! We have follow up doctor visits and lists of things to monitor, but so far so good. If you got this far into the message, thanks for your well wishes and kind thoughts. We are very blessed.