Surgery Week: Day 5 - Going Home

It's sad and a little frustrating that it has taken me 6 weeks to finally finish this, but here it is at last!

I called the cab again Thursday night and made arrangements to be picked up at 6:30 again. This time there were no issues with the location and I made it to the hospital before 6:40.

As if it watching the changes Thursday wasn't enough, it was so amazing to walk in the room and see my beautiful baby boy, his head perfectly round, and his eyes OPEN! He looked so good! 

I can only imagine how wonderful it must have been to him to spend several days in darkness and then finally be able to see. What a miracle! He is in that stage where his hands and fingers and the most amazing discovery ever, but I have a feeling their incredible abilities were even more stunning once he was able to see them again. :)

He was so cute grabbing on to anything he could and either studying it or shoving it in his mouth. They removed the last IV during the night so he finally had full range of motion.

Playing puppeteer with his foot. Love it!

Pierscen's sodium level did come up during the night but it still wasn't quite as high as they wanted it to be. The Plastic Surgeon Fellow, the guy that removed the turban, came in to let us know that we should be good to go, but that I would need to give P 1/32 tsp of salt in his bottle twice a day for 5 days. That's a pretty tiny amount. But that was a simple thing to ask if they would let us go that day. :)

I loved this Tech! She was so cute and so sweet. I was so glad she was there for discharge day!

The Dr told us all we needed was the okay from the Neurosurgeon to go home. Unfortunately he couldn't give us a time line for when he would come down to see Pierscen. I talked to Ellen about getting a ride home and she said that my brother-in-law Cameron would come pick me up. They live in South Jordan and it made a lot more sense for him to come pick me up since he was heading to Orem anyway than making Ellen drive up from Orem and then back again. So we told the nurse that I needed to let my family know when they could pick me up to see if that would get the doctor down any faster.

That seemed to work. The plastic surgeon doc called neurosurgery again and one of the other doctors that had come to check on P said we didn't need to wait for his actual neurosurgeon and that the discharge plan he had given me sounded good. If he made it down in time, great. If not, oh well. 

So I called Cameron and let him know I was good to go. Then to expedite things, I went down to the pharmacy to fill his pain meds. While I was gone, his neurosurgeon made it down, did his 2 second check, and cleared him to go.

We left the hospital around 1 pm. Beautiful bald baby. :) He head was still pretty swollen, but look at those eyes! So much better!

It was so strange to be leaving the hospital. It felt like we had been there forever. And yet it felt like we just got there. I wish Ryan was there to go home with/to, but at least we were finally done!

After eating lunch at my in-law's, I drove Cameron's car back to my house so they were all taking one car down south for a family trip. 

Walking in the door I had very mixed emotions. I was so grateful to be home, to be through with this ordeal, and yet, I felt bogged down by anxiety. I felt so alone walking through the door knowing that there was no husband waiting there, a half-packed disaster of a house, now the responsibility of taking care of a baby that I simply wasn't positive how to take care of. I felt nervous and overwhelmed and incredibly emotional. You know how often after spiritual experiences you tend to feel exhausted afterwards? I think that was a big part of it. I had been buoyed up for so long, this was the crash. 

I did my best to set up Pierscen's crib like it was in the hospital and put him down for a nap. I was so thoroughly exhausted I decided I would crash for a while too. I went and climbed in bed, but I was still so anxious about the insurance issue, I couldn't sleep. I decided to call Blue Cross back and ask some more questions.

I asked the woman what would happen if they decided not to cover it. Would the money I paid even go towards the deductible or would it just "disappear?" She said it would not go towards the deductible, but then asked, "But why wouldn't they cover it?"

"Well I don't know. It's just that I didn't know that you guys were primary until we had been in the hospital for several days and so I didn't get it authorized and I just don't know what to do." My voice was quavering and before I could stop it, I was crying.


"Oh honey, you are just frightened, aren't you?" she asked. Her voice was so kind, so sincere. Nothing I expected from an insurance rep. She asked me if I had contacted the preadmission team, which I said I had but hadn't heard anything. She assured me that everything would be okay and proceeded to get some information from me and then put me on hold so she could talk directly with the preadmission team. After a minute or so, she told me she was going to transfer me to them so that they could get details on doctors and hospitals. Before she switched the call she said, "I know you have been through a lot. It's going to be okay. If you need anything, you call me back, okay?"


I was so touched by her kindness. She didn't have to be like that. She could have treated me like some idiot that really botched things up, but she didn't. 


The lady in preadmissions was just as wonderful. She was so kind and understanding. We spoke for a few minutes and then told me she would call me right back as soon as she had contacted Primary's. It was only another 10 minutes or so before my phone rang. She told me she was able to get the information she needed and that she was going to go ahead and give the preauthorization. She told me that I would receive a letter in the mail stating that it had been authorized, but only for one day. She said not to worry though because that authorization would then allow the hospital to send all the doctors and nurses clinical notes and dictations showing the need for x amount of days and that once they had that, she would authorize the rest.


The crushing weight on my chest suddenly lifted. I am so grateful for these two wonderful women and their kindness towards me. It completely changed my view on insurance people. I guess after a while you judge everyone that works for insurance companies as the bad guys. I don't feel that way any more. They could have told me no. They could have pulled out the red tape and said "good luck with that," but they didn't. I have no doubt that things will still be sticky and that I will probably still owe a good chunk of change, but I am so thankful to our merciful Father in Heaven for helping me through this.


I hung up the phone and put my head back on the pillow. Exhausted, but at peace, I fell fast asleep.

Surgery Week: Day 4 - Day of Transformation

 I woke up bright and early Thursday morning so I could call a cab and get to the hospital as close to 7 am as possible. I asked the nurse the night before if she knew when the doctor would be by to take off the turban. She said there is no guarantee of time, but that they come by most often between 7-9. So, as to not risk missing it, I wanted to be there no later than 7.  

 I had never taken a cab before and I was unreasonably nervous about it. Ryan has seen too many scary movies involving old houses, and I guess I have seen too many murder mystery shows where people go missing from cab cars. Haha. (Actually, I can only think of one where that happened, but still.)

 I called the cab the night before and arranged to have them pick me up at 6:30 am. I made sure to clarify multiple times that I was not at the main Ronald McDonald house, but at House 3 and gave them the address. I made the operator repeat back to me at the end my location before hanging up.

 Well, around 6:10 I received a call from the cab driver asking if he could come pick me up at 6:25 instead. I said that would be fine and finished getting ready. 6:25 came and went. Then 6:30. Then 6:35. I called the man back and asked him politely where I was. He said that they had actually given my pick up to a different cabbie (sp?) and he said they should be there any minute. I asked him if he knew if they were going to the right location, House 3, not the main house. He seemed surprised by this and said he didn't know anything about that and for me to call the main number and make sure they knew.

 When I reached the main number and explained again where I was, the operator said she had never heard of House 3. I wanted to say, "Who cares if you have heard of it or not? You have the address! The operator last night repeated it back to me so I know you have it!" Sigh... I heard her give the information to the cab driver over the radio and she said they were only a few minutes away. So I went outside to wait. It was now about 6:45. Shortly thereafter, the cab arrived... and drove right past the house. So I picked up the phone, called the back, told the operator they missed the house, and waited until the car circled the block. 

 At long last I made it to Primary's! I paid the cab driver and dashed upstairs just in time to see the doctor finish talking to the nurse at the desk and turn into P's room. I checked in with the nurse briefly. She told me she did her best to time his pain medications so that the turban removing wouldn't be too horrible... but you never know!

 The doctor, who was working with our plastic surgeon, wasted no time. He went right in, grabbed his scissors and went to work. He was good enough to pause to let me get some pictures along the way. I was struggling with the lighting, so the pictures kept blurring, but I was finally able to get some good ones. 

He didn't respond much at first, but then the pain really registered and he began to scream and scream.

Even though seeing him in pain was heartbreaking, it was amazing to see him like that. Bald... but beautiful. Look how round his head is! Look how incredible it is!

After I took my pictures, I grabbed a 6 oz bottle and plugged it into his mouth. He chugged and chugged and passed out happily.

Doesn't he look so angelic? I mean, yes - the new bald look was a shock, and still is every time I look at these pictures, but even with the bug eyes, swollen face and lack of hair, he looks so good. So peaceful. So perfect! 

Here is before and after. His right forehead was very recessed. And now look how perfect and round it is!

 

Ryan was a little concerned about the ridges you can see in these pictures, but when I mentioned it to the Neurosurgeon later, he said that as the swelling goes down we will notice lots of ridges and things we didn't before. In fact, he said that we would be able to see quite a bit of the actual reconstruction. He said that right now, his head is artificially perfectly round, but as the swelling goes down, it won't be so completely round, but it will be normal.

The Neurosurgeon came by a couple hours after the turban and drain had been removed. He said everything looked great, but that I should expect to continue to see some swelling and that in all likelihood it would peak that day or the next and then would improve. However, from the small amount of time that had passed from the turban coming off to the neuro stopping by, the swelling was already TONS better! And it wasn't just my motherly love that thought so. The tech, who I loved - she was totally awesome, and the nurse both vouched for the amazing improvement. 

The only outstanding concern was the sodium. That pesky sodium! Again, he hadn't been eating super well through the night (though that's normal) but if he continued to eat like he did that morning, things should regulate. They checked his sodium shortly before the turban came off and it was 131. That's not dangerously low, but still lower than they would like it. They were set to check it again at 12 and if it dropped at all, they would order a sodium supplement. Other than that, everything looked great.

Well in my opinion, more than great! This picture was taken around 8:00 am. Only 1 hour after the turban came off. The swelling in his eyes was already so much better! Scroll back up to the pictures of the turban coming off and the minutes following and then look at this one. It's not just because he isn't screaming in this picture that it looks so much better. The difference was remarkable!

By 10:40 his right eye started to open. I have a hard time finding words to express how thrilling that was. And I can only imagine what it was like for Pierscen! To have spent the last 3 days in total darkness and at times, sickening pain and to have no understanding of it all... and then suddenly be able to see. What a miracle!

He looks so fat in these pictures. :) I say that out of love of course. But that very fact is just further evidence of how well the fluid was draining off!

The 12:00 lab draw came back as 130 for his sodium. It only dropped one point, but it dropped, and that was what they were looking for the most. So they ordered a sodium supplement. I was pretty disappointed with this considering the biggest factor in whether we would get to go home or not was his sodium. But I had hope and faith that the supplement would help pull things in the right direction.

One thing the Neurosurgeon did want us to do was make sure to keep a bump underneath his chest area so that his chin would be elevated and allow the fluid to drain off. The above picture was taken at 12:58 and you can see what a difference it made. I don't think I have ever seen his diaper so wet in my life! All that fluid had to go somewhere! :)

Around this time I decided to go down to the Parent Resource Center and warm up my lunch from the day before. As I sat there eating, I pondered what to do about our insurance. Ryan's new insurance started in the middle of May, but we had decided we likely weren't going to claim it as secondary because ironically it would cost us more to be dual insured than to just claim mine. However, the more I thought about it, the more it sounded like a good idea to claim both. I let Ryan know and called up his insurance to see what we needed to do. My biggest concern was that they might refuse to pay since we hadn't gone through them to get a preauthorization. However, being a secondary insurance, I didn't know how much that really mattered. 

As I chatted with the insurance lady and we were trying to sort out effective dates and all that jazz, she said, "Wait a minute. This insurance should be primary. Not the other one."

I felt my stomach flip a bit. "No," I began, "I have had my insurance for 5 years. Ryan's just started."

"That doesn't matter. It's the birthday rule. His is primary. This could cause a lot of problems."

The birthday rule. How could I forget!?! That's what I do for a job! Well, not insurance specifically, but we reference that rule all the time to help parents understand the order of billing. When it comes to children, whichever parent's birthday comes first in the year, their insurance is primary. (There are other factors if there is a divorce or step parent situation, but for ours it was pretty straight forward.) Ryan's birthday is 4 months before mine. There is no argument. 

I felt sick. And terrified. Here we were, on day FOUR of our hospital stay, and suddenly I didn't know if we would have any insurance coverage. The insurance lady transferred me to the preadmission department where I left a message explaining my situation - that we were in the hospital and that I hadn't obtained preauth because I thought their insurance was secondary. All I could do then was wait.

I called the billing dept at the hospital to ask some questions. I didn't give them our name or account number. I just wanted to ask some "hypothetical" questions. My main question was whether or not I HAD to claim Ryan's insurance. The lady I talked to was super helpful. Basically, I don't HAVE to claim them, however, by just billing my insurance, it's a game of Russian Roulette. If my insurance ever finds out that I had other insurance that should have been primary, they can pull all of their payments. The biggest problem with this is that the hospital only has 1 year to file a claim. However, the insurance has unlimited time to review their accounts and look for discrepancies. So let's say 2 years down the road, my insurance somehow figures out that they should have been primary. They pull all of their payments. But now it's too late for the hospital to file a claim with Ryan's insurance. Guess who foots in the entire bill? That's right. Me. Is it worth the risk? In my opinion, absolutely not.

I called Ryan in tears and explained the situation. Assuming his insurance took pity on me and did a retro authorization, we would, in my estimation, owe double what we would with just a single insurance. However, what is that compared with a 5 day hospital stay, plastic surgeon, neurosurgeon, anesthesiologist, etc. Easily, easily looking at $100,000+. 

All that was left to do was pray hard, have faith, and wait it out.

Ellen came back up that afternoon and thankfully the wait was made much easier by her company and the amazing progress Pierscen was making. I wish I would have had a time lapse camera for those first 12-18 hours after the turban came off. I was literally watching a miracle unfold before my eyes. Around 4:00 pm a tiny sliver of P's left eye began to open. This picture was snapped at 4:11. It was so exciting! As we watched him try to open his eye further, we determined that the biggest reason he couldn't open his left eye much was because the goop that had oozed off his eye had essential glued it shut.

Our awesome tech decided to get a warm wash cloth and gently wipe away some of the gunk to see if it would help. 

It made a huge difference! He was able to get his eye open quite a bit after that! The social worker, Karla, came back around during all of this and it was great to be able to share our success with her. She then had the idea to go grab a mobile from one of the other beds not in use to give him something to look at. It didn't turn or make music, but it was bright and fun and I am sure was really wonderful for him to look at after all that time in the darkness.

5:34. Even more improvement. His face was almost back to normal. His cheeks were softening up and the fluid in his neck looked a lot better as well.

6:51. His left eye is hardly swollen at all!

7:44. Loving looking at those hands... with both eyes! 

Shortly after 8:00 pm, they came in to give him a sponge bath and get his weight. I don't think he enjoyed it quite as much as the real bath, but I am sure he still appreciated getting scrubbed down.

My brother James came up that evening. After Pierscen had his bath, James took me out to eat while Ellen stayed with Pierscen. She thought that maybe she would stay the night again so that she wouldn't have to drive back up the next day to bring us home, but she was undecided.

James and I grabbed dinner at Red Robin and then headed back to the hospital. Ellen decided she would go home and get some rest since we didn't know when we would be released the next day. James volunteered to take me back the Ronald McDonald house on his way home.

It was an incredible day. Truly a day of miracles. I remember the doctors saying that these kids are often basically back to normally within a week, but when you see them so swollen and bruised it is hard to imagine. However, watching the swelling recede and the incredible transformation in front of my eyes made me a believer. I know that there were angels there watching over my little boy. We are so blessed to live in this day and age! It's been a hard, but amazing experience. Each day has brought its challenges and triumphs, but I would definitely sum day 4 up as humbling, inspiring, and thrilling.