Wednesday, October 2, 2013

Josephine's Surgery

I've been feeling lately that I need to record the experience of Josephine's surgery, so I'm finally getting it started. That being said, I've been dreading it like crazy, because I don't want to have to go through all of those emotions again, but it seems like it's an important thing to document. I've realized also that when I blog or put things on Facebook (or honestly when I talk to anyone but Royce) I tend to try to keep things pretty upbeat a positive, since it does no good (and honestly can do some serious harm) to dwell on the negative side of things (and it makes me feel much too vulnerable to do otherwise), but again I feel the need to be pretty open and honest with the emotions that I was feeling, because it's necessary to show those feelings so that I can help explain the significance and meaning of the blessings that have come before/during/after this experience.

It begins. Needless to say ever since we found out that she had needed open heart surgery I've been stressed and worried beyond anything that I could imagine. Even though there were lots of encouraging things, and she was responding well to the treatment needed before surgery, I still was completely freaked out, and almost to the point of not being able to hold it together. There were lots of crying sessions, started by the most random things. (Granted, I'm sure it didn't help the situation with all of my postpartom hormones, my levels being extremely high for my mixed connective tissue disease, getting ready to move across the country, and Royce starting a pretty high stress level "big boy job.") My mom was out to help when Josephine was born, and stayed with us for 4weeks to help me recover from the c-section and help us get packed up for the move. Royce's family helped us get packed up and moved, then my Dad was here waiting to help us take care of things in Idaho. (All part of the original plan.) Due to my emotional state, though, after my Dad had to go back to Oregon, my Mom drove back out a few days later, and stayed with us for the few weeks before her surgery to help me with the girls, but mainly to keep my mental sanity. (Which meant she had to skip out on being the head cook for girls' camp-something I felt bad about, but not bad enough to have her not come. It made me really grateful for the awesome lady who took over my mom's job, as well as all of the others who helped out with such short notice.) Royce's family was also super awesome and drove our car out from Texas when they brought Gina out to BYU, and then Ross and his Dad drove it up from Salt Lake, helped us unload all of the pods that they had just packed up for us, and turned around the next morning and drove back down to Salt Lake. (About 10hrs each way I think.) So the focus once we got to Idaho was trying to keep her gaining weight with a special mixture of calorie enhanced formula (because of the hole in here heart, blood that should have been pumped around to the body was just going back to the lungs, which meant that her body was burning tons of calories just to breathe, and have her heart beat so they have to get her more calories to just gain wait so she's not malnourished for the surgery), twice daily doses of digoxin (to strengthen her heart) and lasiks (to try and get the massive amount of fluid that was being pumped to her lungs because of the hole, out of her lungs) and three doses a day of captopril (to slightly lower her blood pressure so her heart didn't have to work so hard). She was still having weekly weight checks, and frequent echocardiograms, and ekg's. (I think she had 9 EKG's and 3 echocardiograms before the surgery.) When we first met with the cardiologist in Spokane, she seemed a little hesitant with all of the preventative things that the cardiologist in Austin was doing, and they couldn't get the copy of the echocardiogram to work, but she kept moving forward like our other doctor had and the next week they were finally able to see a copy and she called me back that day and said that she had already met with the surgeon after seeing the echo and how big her defect was,  and their office was going to call me the next day to set up her surgery for July. So at least it was good that both cardiologists were seeing eye to eye on things. So we set up the surgery date, and set up an appointment to meet with the surgeon, which went well and gave us some really good odds and statistics, which helped put my mind at ease quite a bit. (I had contemplated looking up the survival rate for infants with open heart surgery, but was too scared to do it, and Royce encouraged me not to, which meant that he wasn't too excited about that either, but the surgeon said there was a 98% survival rate for kids that have this VSD repaired through open heart surgery, which I thought was awesome and incredible and really put my mind at ease; until a few days later when that little voice in my head said that someone had to be that 2%. Stupid little voice. And those might just be his percentages of success for open heart surgery, which is pretty incredible. We were super blessed to have this really big/extremely skilled cardiology office in Spokane, and to have this office of surgeons that mainly just do open heart surgery, that are also incredibly skilled and sought after.) Alright, now that I've set the stage, the actual week of surgery begins. (Have I mentioned yet that this is going to be a long post?)

Sunday- Sunday morning Royce and I went to sacrament meeting and Grandma stayed home with the girls. (We also had to keep all of us quarantined as much as possible, because if Josephine was sick at all [diaper rash included] they would have to reschedule her surgery, and the further along we get the greater chance of her being malnourished and making surgery more risky.) That afternoon the Bishop came over and he and Royce gave her a blessing, and then Royce suggested they give me a blessing too, which I gratefully accepted. It was really nice, and helped me feel a lot better.

Monday- We got a letter Friday night saying that the surgery had been pre-approved by our insurance. The problem was that as of July 1st, we had new insurance, and didn't even think about needing to get a pre-approval before the surgery, so bright and early Monday morning we got up and I called them, only to find out that we weren't even in their system, and they aren't able to do a pre-approval without us having an id number. The rest of the day was spent calling the insurance company multiple times, Royce's HR department at work multiple times, the nurse from the surgeon's office multiple times, and finally by 3:00 in the afternoon and still no headway, I was completely overwhelmed and end up breaking down and crying on the phone, which really embarrasses me,  but it apparently got the job done, and the really nice lady at the insurance company called the HR lady, and they were able to get us an id number (which should have taken much longer) and so then we were able to get the paperwork sent from the doctor's office, so the insurance could get it processed for a pre-approval. It was so annoying, and frustrating, and not what we wanted to deal with the day before her surgery, but everyone that we talked to was really nice, especially for an insurance company, and the lady who finally got us a number pulled a lot of strings, and was really great to be able to get everything done. The nurse at the surgeon's office was also super incredible. It's not like this is the only thing she had to do that day, but she kept checking on their internet system to see if we had a number yet, and calling the insurance company for us too, and finally right before I was able to get a number she was able to get them to hold a window open, so that as long as we had the number within 48hours after the surgery, we could still get it pre-approved, and she called me and told me just not to worry about insurance any more, and they would get it taken care of for us, which was so nice. But we were able to get a number, so she got the paperwork sent off, and even called us back a few hours later to tell us that it had been approved, and everything was worked out. She was great.

During all of this, we were doing pre-op stuff at the hospital. We checked into Spokane at 9am, and she had some blood work done (from a not very good phlebotomest...even our nurse was getting frustrated with her. They tried her arm, then did a heel stick on her foot three time and still couldn't get enough, and finally were able to get what they needed from her hand, but gave her a huge hematoma on her hand) she had chest x-rays, another echocardiogram, ekg...I think that's it? She also had one more appointment with the cardiologist. She showed us her chest-xray, and her heart was huge. It was super enlarged (which was to be expected, but it still looked big), and her lungs were pretty full of fluid, but again that's what they were expecting.We also listened to her murmur, which we hadn't ever done, and boy was it loud. One of the nurses who was trying to listen to her lungs had a hard time because the murmur was so loud she couldn't hear anything else, and that finally made sense to me. Finally after a long day at the hospital, the three of us went out to dinner, then headed to our motel for the night. We were pretty wiped out, but needed to get up early so we still didn't end up getting much sleep that first night. It took a lot of energy to keep positive thoughts maintained that night.

 At least she got a good night's sleep the night before.

Tuesday- We got up bright and early and went and checked into the hospital. This time we were the only ones in the waiting area, and pretty quickly they got us back and started working on pre-op stuff. There wasn't too much to do, since they had run most of the tests the day before, so we mostly just hung out, waiting for things to be ready. We met the anesthesiologist, and he looked about as young as we were, but I figured if Royce can be a pretty competent professor at his age, maybe this anesthesiologist could be competent as well. He was also super tall. Random fact, but he's probably the only person that I've met that's taller than Uncle Will. The surgeon came in, and we chatted with nurses, and then they said it was time to go, and they were going to take her now, and without an instant passing in my head I said, "like h*** you are." (Apparently my fight or flight instinct took in and I was about to run out the doors with her. I also found my self control for mental swearing pretty much gone that week.) Luckily I was able to keep it in my head, and not take off on a dash down the hallway with her in my arms, and I set her down in the little hospital crib. We walked out of the pre-op room, Josephine went down one hall and we went down the opposite, and I started to cry. We went to the family waiting room, and waited for the nurse to call with updates throughout the surgery.

Daddy got some pretty cute smiles Tuesday morning waiting for them to call us back and get her ready.


This was in our pre-surgery room. Royce gets really sarcastic and cracks jokes like crazy when he's stressed and sleep deprived. He was pretty funny and helped lighten the mood a little. I can't even remember what he was doing in this picture.

The surgery itself was pretty intense. They had to split open her breastbone, go in and stop her heart, (so she was on a bypass machine, which also required for her to have a blood transfusion because babies of that size just don't have enough blood to go through all of the parts of the machine and still actually have blood in her body so that's why she had to have a transfusion. We also found out she's type o.) then they did the repairs and put her back together. She was also on a ventilator, and I'm sure a butt load of other stuff. 

It took around 4hrs for the surgery to be finished, and we tried to distract ourselves with computers, reading and sleeping as much as we could. It seemed like forever, but wasn't as bad as I was expecting. The nurse called periodically through the surgery, and everything was going "beautifully" as she liked to put it. Finally we got the final call from the surgeon, and he said that everything went really well, and she was doing as to be expected. She was going to spend some more time in the recovery room, then they were going to take her to the Pediatric Intensive Care Unit, and it would be another couple of hours before we would be able to go up and see her. Royce and I went and grabbed some lunch, feeling a lot of relief that things had gone so well. Obviously there was so much that could happen with the rest of recovery, but it was such a relief to have that big hurdle over.

We grabbed lunch then headed up to the PICU to see her, but they still weren't ready for us, so we went to the vending machines to get some candy and pop with as much caffeine as possible. We waited a little longer and then we were able to go in and see her, and I was surprised at how good she looked. She had really good color to her face, and looked like she was sleeping pretty comfortably. But oh boy was she all wired up. They had most everything covered up when we first went in so we didn't freak out, and after we were there for a little while they uncovered her and showed us everything. She had a patch on her forehead (I can't remember what that measured), a breathing tube in her mouth(she was on a ventilator), IVs in her neck(that also measured temp, blood pressure, etc), groin and ankle, oxygen monitor on her foot,  two drainage tubes coming from her chest, the big incision, a catheter, and a bunch of metal wires coming out that were still attached to her heart. Yikes. But she looked really good, and we were happy that she was doing so well. And the waiting began. Since she was in the PICU and she was just out of recovery she had her own nurse that stayed in her room all the time so there really wasn't much for us to do, so we just sat and watched her sleep. The doctors told us to get plenty of rest that day because the next was probably going to be rougher since today she would pretty much just sleep, and I think the nurse was kind of annoyed with us because we were in her room the whole time but honestly where were we going to go, the movies? Normally it would bother me that she was frustrated with us but at the time I didn't care and she could just suck it up and deal with it. (I know, that's a pretty arrogant attitude to have; she deals with these situations every day, and has to deal with stressed out parents all the time, but at least I wasn't swearing at her in my head, right?) So we hung out in her room and Royce worked a little on the computer, and I read a little. We went and got dinner (which was kind of a nice break to get out and get some food and almost have a mini date...almost.) After dinner we went back to her room, and by 8:30 I was so tired I was about to pass out, so we decided to go get some sleep, and for the first night after surgery they have a sleep room just down the hall so you can be close that first night in case something happened, so we went to our room which we were expecting just a bed and a lamp, but what we weren't expecting was a twin size bed. So we weren't anticipating the greatest night's sleep, but we were so exhausted that we were out by nine and slept straight through the night until 8:30 the next morning and only woke up once when Royce went to the bathroom. (I also think they took her off the ventilator this day which was exciting because a lot of the time they need to stay on it longer.)

This was the day of her surgery.

Wednesday, Thursday, Friday-  (I've had to blend these three days together because it's October already and I'm still not finished with this post and can't remember exactly what happened these days.) We woke up and got cleaned up as best we could in a hospital bathroom and headed to see Josephine. She had had a really good night, but had a little bit of a fever. I asked if that was normal and they said it can be normal. I got that answer with a lot of questions I asked. She had a good night, and the rest of the day went well also. I can't remember if they took the ventilator out on Tuesday or Wednesday, but we also slowly started to feed her a bottle again, and she recovered pretty well in the PICU. (The nurses and doctors in the PICU were just incredible. If you have to be in the hospital, that's where you want to be because they were great.) The only "setback" in her recovery process was when she started to get some white drainage coming from her chest tubes, which meant that she probably had a kylothorax (just kylothorax? I still don't know the proper way to say that) which means that her lymphatic system was damaged during the surgery, and apparently when the body digests some types of fat it goes up through your lymphatic system in your chest and down to your liver, or some other organ further south, and so your body is leaking a fatty fluid into your chest cavity. Which normally would sound super scary, but at the time wasn't such a big deal. So they put her on a special formula which had a different kind of fat, and when they did that the drainage from the chest went back to a normal color, and after a couple of days on the special formula (or maybe just a day? It's been too long now and I can't remember) they were able to take the chest tubes out, and she just had to stay on the special formula for 6-8weeks after the surgery. ( "Special" also just might be another word for super expensive, but it's kind of cool because it's made especially for babies with this condition, so I was really glad that it was an option, even if it was an expensive option.) So we had another day (Wed) of waiting and watching her, and I was able to get a little more hands on, but the nurses still did most of it. We learned what all of the different monitors did, and learned when to freak out when an alarm went off, and when not too. Wednesday night they had arranged for us to stay in a small wing of the Ronald McDonald house that was in the hospital too, which was a little nicer because it at least had shower facilities that we could use, but again we slept on a twin bed, and by Thursday night we were ready for a little space so we got a motel room (which was good because the other options were all booked up for the night anyway) and slept much more comfortably on Thursday. I think it was also on Thursday that I got to hold her for the first time after her surgery.

 During our stay in the PICU we met a lot of different nurses and doctors, and there was even a cardiologist that was in the PICU all the time, not just when they were doing rounds, and for the first three days we had Dr.Anderson, who was really great, and super nice. Then on Thursday (or Friday?) we met one of the other cardiologists. And just for a little background, when we were calling around Spokane to get recommendations for cardiologists, they all recommended the same person, over and over again, so when we first went to Spokane and he wasn't able to see us I was a little disappointed, but then I met him and was glad that I met the other cardiologists because when he came in the room and opened his mouth, all I could see was this guy: (Ben Schwartz)

which is awesome if you're watching his comedy on the computer late at night, but not awesome when he's your baby daughter's cardiologist. I'm pretty sure that again I said, "oh h*** no" in my mind. He just was so goofy, and looked a lot like him, and was trying to make all of these jokes that weren't funny, and I was a little concerned. But, it turns out he's a really good cardiologist, and the more we got to know him the more comfortable I was around him. He's actually the doctor who made the call to move her on Friday to the normal pediatric floor, and he's the one that had us discharge her on Saturday, which was three days sooner than the surgeon was expecting with the kylothorax, which made me a little nervous, but he said at that point there was really nothing that they were doing for us there that we couldn't do at home on our own, and he said we could call him with any kind of question day or night if there was any kind of problem, or just something that we were concerned about. So that helped, and I'm glad he released us when he did because everything was pretty much smooth sailing after that and we didn't have any issues. So Friday night she was on the normal floor, and it was a much different experience. I was glad I knew what the alarms meant, because in the PICU when an alarm would go off, someone would come in and check on her and see what the problem was. Most of the time it was just a bad connection, or something wasn't picking up on things the right way, but they would be in within a few seconds. On the normal floor, there would be alarms going off, and the nurse would never come in. So finally after about ten minutes of the alarm going off I'd re-adjust whatever attachment was that was beeping, and get it registering again. Also after we got settled a little bit in our new room it was around dinner time, and it was getting close to the time that Josephine needed a bottle so I "buzzed" the nurse and said that she was ready for a bottle, so they said okay, and then we ordered a pizza. Fifteen minutes later the pizza arrived, but still no bottle. She was perfectly happy so I just let it go and we ate our pizza, started a movie, and finally an hour and fifteen minutes after we had asked for it the nurse came back in with a bottle. It's a good thing Josephine wasn't actually fussy at all or it would not have been as pretty a scene. And I understand that nurses are really busy and have a lot of patients to see and all sorts of crazy things can come up, but after the nurse brought her a bottle she told us that she liked to have fun at nights, and she likes to make all of the patients smoothies, so she went and made us a smoothie, which was really nice, but seriously if she was making smoothies when she was supposed to be making the baby a bottle I was going to be really mad. Especially when it is something that I could have done so easily, but I just wasn't allowed to, so I wasn't too terribly heart broken when we were discharged a little early. So Friday night Royce was really nice and offered to stay with Josephine in the hospital, and I went to the motel and slept there. Then Saturday morning/afternoon the cardiologist came in and said we could go home, and we just needed to stay on the Laytex a little longer until her lungs cleared out a little more, and she was just on Tylenol for pain meds, and the special formula. We did decide to stay in Spokane that night, to let all of us get a little more rest before we drove back, but it was so nice to be out of the hospital, and she did really well all things considered. The only issue we had was in the morning when we knew we were going to be discharged and that she would only be on Tylenol at home (she'd been alternating different types of pain meds up to that point)  the nurse decided that her last dose of pain meds in the hospital would be Tylenol so we could make sure that she was okay with just that, and she said to have her take her meds about 30minutes before they were going to take out the IV's so it would help with any discomfort from that (the iv in her neck was sutured in to hold it in place) so I was supposed to page the nurse when it was time for her next dose and she would come in and give her her Tylenol. No problem. So when it was time I paged the nurse's station and said she was ready for her pain meds. After a while a different nurse came in, and before I could even think about it she gave her some of the other pain meds, not Tylenol, which I didn't worry about too much, but after we were discharged and got to our motel and it was time for more Tylenol if she'd given her Tylenol, but I had no idea what the pain med she gave her was, and I know that some prescription pain meds have Tylenol in them, so I didn't know if she could actually have the tylenol at the pre-arranaged time, and Josephine was getting really fussy and you could tell she was hurting, and I didn't know what to do and was really frustrated at the nurse then. So we ended up calling the hospital to figure out when she could have a dose of Tylenol (and to get the right dosage amount. As we were going through the check-out instructions the nurse again said to just give her Tylenol, and I asked how much to give her, and the nurse said to just follow the instructions on the box. It had been a while since I've bought Tylenol, but I'm pretty sure the box says that under two to ask a doctor, but I trusted the nurse and assumed that Tylenol had changed their dosage information. Nope, they sure hadn't.) So while that was pretty frustrating, especially after working with the PICU nurses, if that's all that went wrong after we were discharged then I'll take it. So we were finally out of the hospital, and super excited to be done.

Chillin in our motel. Luckily we "splurged" and paid like 5 extra dollars to get a king bed, which was good because we weren't planning on having Josephine actually stay in the motel with us, so it was nice to be able to spread out without worrying about squishing her. (Although Royce and I were both permanently glued to the very edge of the bed, one of us on each side because we were a little worried about bumping her. So I guess Josephine had a king size bed that night.) 

Sunday- Sunday morning we grabbed some breakfast from a drive-thru and sat in the parking lot in the car eating breakfast and watched the congregation come out of this Russian orthodoxed Church, which was actually pretty fun since Royce went on his mission to Ukraine. I was officially able to see a babushka, and it was cool to see so many of the Russian styles and traditions. I'm sure they were thoroughly creeped out by the weirdo couple watching them from their car. 

After our breakfast, we headed back home to Moscow to two very excited little girls and a relieved Grandma. (And then the real terror began...trying to keep a very enthusiastic two year old from "loving" her  baby too much. The big girls actually did a really good job, and we made and kept very specific ground rules. Marta still doesn't ever touch her chest, but I'm okay with that.)
Big smiles to be home, and Grandma checking out her scar.

This was a super cool walkway they had between the parking garage and the Peds hospital. By the end of the week we knew our way around the hospital so well. 

Updates: Her kylothorax healed really well, and she's back on the normal formula, but still just a little bit of higher calorie than normal. She's also a little behind on her physical development, which is pretty common after this type of surgery, so she's been going to physical therapy to strengthen her torso area a little. But other than that she's doing really well and we go back to the cardiologist in six months to make sure that her tissue has grown over the patch the way it's supposed to. 

Lessons Learned: As horrible as the experience was, I am really grateful for the things we've learned. It was incredible how supportive everyone was; family, friends, complete srangers. There were so many people praying for us and supporting us, and more I'm sure that we didn't even know about. (Just one example- my Mom's Principal at the school she teaches at talked to the leader of her Church and they had a special prayer meeting for Josephine. It was so kind and very touching.) 
She also received a beautiful little quilt in the hospital from Project Linus that was in her crib there and we got to take it home, and it surprised me how much it meant to me to have that. I've worked on projects similar to that at Church and have been skeptical about that doing any good, but it really did mean a lot to have that little quilt. (And it was really well made and beautiful...the ones that I made did not turn out that well.)  

But probably the thing that I learned the most is empathy and compassion. Because as scary and serious and horrible and emotionally all consuming as this was, I couldn't help but be humbled, and recognize that other people have it way worse. Someone is that 2%. Her surgery was straightforward, with no complications, and had a wonderful outcome. Others aren't so lucky, or don't even have those incredible odds to begin with. This was just a small little hurdle we had to go over, and then the rest of her life would be a normal, healthy experience but some people start out with their babies knowing that they aren't going to live very long, or will be challenged and tested and tried with physical problems throughout their entire life.  It also helps me to feel more of a connection and offer better support to others who are facing similar trials.  So while I'm not quite at the point where I can say that I'd go through it all over again to learn what I've learned, I am very grateful for what we have learned. (That being said, Royce and I talk all the time about how nice it is to have that done. There's a big check mark on the "to do" list. I was up in Spokane just last week at my Rheumatologist's appointment, and his office is in the same hospital, and it was awesome to drive around saying, "Josephine's not having surgery today." (Yeah, I totally talk to myself in the car when I'm alone. I realized that over and over again on that trip. Also I talk to myself at Costco. Akward.) ) Also, modern medicine in incredible. I'm so grateful for super skilled doctors/surgeons who have put in a lot of time and effort to become the physicians they are. It was also really incredible, and I don't think a coincidence at all, that we moved to an area that had this great congenital heart disease clinic, and a hospital that specializes in pediatric open heart surgery. (For those of you who don't know, last year while Royce was in the job search he got an offer at a University of Texas San Antonio, and we were all ready to accept it, and while we were in the negotiation process for salary they withdrew the offer completely. It was a huge shock, and Royce especially was really disappointed, but it made him go back and apply to this job at University of Idaho which he had seen before he applied to UTSA, but he hadn't applied because he didn't think he was qualified enough. I really believe that this was Heavenly Father guiding us, and we really needed to be here, and not just for Josephine's surgery, but again and again things just keep coming up that really help us to see that this is where we need to be, at least for now. We really like it here, so hopefully for a long time.)

Anyway, yay, this freaking blog post is finally done! And you deserve lots of Klondike bars for making it through to the end of this hairy beast. So good job. Frink out. (I'm not even going to proofread this, because I'm so sick of looking at it.)


Lea said...

Thanks for sharing the details. You guys truly handled a super tough situation well and I'm so glad you're looking on the other side of this now!

Sarah said...

Thanks for posting! Jeremy and I had been fasting for her and then Jeremy kept asking me how the surgery went. I kept telling him that you hadn't posted anything yet... I'm glad I'll finally be able to tell him that little Josephine is doing great. ;)

Amanda said...

It's good to hear all these details. I'm so glad things worked out so well for little Josephine and that things are going well for your family in general!

meg baker said...

We are so grateful that Josephine is doing well. She has been in our prayers.