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.

Surgery Week: Day 3

 Wednesday morning, I woke feeling refreshed and ready to tackle the day. I was even able to take a shower. Ahh! When I arrived at the hospital, I found one tired grandma! Try as she might, P just wouldn't eat during the night. Only a few sips here and there. So the restarted an IV in his hand. They did ask Ellen if Pierscen has been sleeping through the night, which before the surgery, he was doing pretty good. If he wakes up, it is typically just once. Because of that, they told Ellen not to feel bad about him not eating. That's what he normally does! I just felt bad for her! I know how exhausting it is to be up all night with him. 

I offered to let her go back to the house and crash in my room, but she was too tired to even do that. (Technically I don't think that's allowed but I thought it was a better option than driving home dead exhausted.) She just decided to take a nap on the fold out chair. She must have been super exhausted because she didn't even budge when the housekeeper came in and cleaned the bathroom only a couple feet away from her. The lady was doing her best to be quite, but she made quite the ruckus! (Or at least that's how it seems when you are trying to be quiet.)

  
 Pierscen's pain management was much better by this point. He was off the Morphine and was just taking Oxycodone and Tylenol every few hours. I continued to stretch the time between doses so that he wouldn't become reliant on them and he did really well with it. The most heart breaking thing was when he would cry. His cheeks were SO swollen! He would barely even open his mouth to cry. This picture is so sad, but so sweet. He had a hard time squeezing out tears with his eyes swollen. You can even see the red from the Oxycodone dripping out the side of his mouth. Poor baby!

Wednesday afternoon also provided a bit of a luxury. A real bath! He loves his baths at home. Takes them very seriously. I don't know why. It always cracks me up. I wish he would have been able to see for it, but I am very grateful they were willing to let him have a true bath and not just a sponge one. :)

The tech did an awesome job holding his IV hand out of the water and him down with her other hand. I had to take a few pictures, naturally, and then jumped in to help. He seemed pretty relaxed and happy about it.

After the bath, Ellen helped feed him before heading back home. It was great to have her as company and I am very thankful for her willingness to help out. She was able to get enough of a nap that she made it back safely. Hopefully she slept well that night!

During the afternoon, P started stretching, kicking, waving, and dancing around. I am not 100% sure what spurred the action, but I bet it felt really good to move! I took a million pictures of it. It is really cute to watch in succession. I could have provided an entire blog post of just these pictures - kind of like a flip book - but I am already so far behind! :) Here are at least a few to show you...

Shortly after Ellen left, I learned we were getting a roommate. My heart sunk. Instantly I began to worry... will he/she be a screamer? Will they be super sick? With the parents be loud? Etc. 

You do your best not to be nosy and respect privacy, but it is really hard with just a curtain between you and the next person! From the first few minutes of them being in the room, I gathered that it was a "he" and that he was at least old enough to say a few words. From the mother's narrative, they have no idea what's wrong with him, and that they were there for some exploratory tests. Well doesn't that just sound peachy? Nothing like not knowing whether you are bunked up with someone who is sick with the black plague! I did my best not to worry about it and figured we would learn right along with them.

A little while later, my dear friend Jackie came up to visit. She is the mother of my amazing dance friend, Allie, who lives in California right now. She brought me some delicious food from Whole Foods including salad, soup, bread, and some desserts. She spent an hour or so with me. It was wonderful to see her and to spend time with her. She is amazing and has been such a great friend and support through the years!

I saved the food she brought me in the fridge out at the nurses station because I knew that Matt and Jen, Ryan's sister and brother-in-law, were bringing me dinner. They arrived around 7:30. I forgot the name of the place where they got dinner, but it was yummy! 

While I was eating, I saw our little neighbor on the other side of the curtain. He was small, but I guessed probably between a year to a year and a half. I smiled at him and said hello. He grinned back, walked across the room and climbed up on my lap. He was the cutest little thing ever! His mom apologized, but I reassured her there was nothing to apologize for. He was a total angel. He then caught sight of my cookie and really wanted it. I would have loved to have given it to him, but he was on a liquid diet only. Poor little bug! I can't imagine how frustrated he must have been. And hungry! And tired! His mom said that they were taking him for a test soon and this was normally his bedtime. I wish I could have done something for him. It's tough when they are old enough to express themselves and their wants and needs, but that no matter how much you explain, there just isn't a way to help them understand why you are intentionally doing things that upset them. :(

Matt and Jen brought a present for Pierscen. It was a cute stuffed animal bear and the book Brown Bear, Brown Bear, What Do You See? I almost started crying when I pulled it out. Ellen reads that book to him pretty much every time she watches him. It was such a sweet and thoughtful gift. It will be so wonderful to continue to read him that book through the next few years as he holds his own brown bear. 

After a few hours, Matt and Jen drove me back to the Ronald McDonald house so I wouldn't have to call a cab. As I walked inside and got ready for bed, again I was struck by the love and support of family and friends. I am so grateful that we made the choice to have me stay and work so that the surgery could be done here with loving family by our sides. We truly are blessed.

Surgery Week Day 2: IMSU

I asked our nurse in the PICU what determines whether we would get a shared or a single room in the IMSU (Infant Medical Surgical Unit). She said there were a variety of factors, but a lot of it comes down to what the patient is being seen for, and whether there was enough room to not have to share. I was really hoping to avoid a shared room for a couple reasons. 1. If it's a single room, they at least have one of those sleeper couches like in labor and delivery. They still get a 3-4 on the comfort scale, but that beats out the fold out chairs offered in the shared rooms. 2. I was concerned about Pierscen keeping the roomie awake all night crying - and visa versa. 
When we were transferred to the IMSU, I was disappointed to see that it was a shared room, but also grateful that we didn't have a roommate. At least not yet. The charge nurse came in to introduced herself and told us that with cases like Baby P's, she tries to keep them alone seeing as they have really bad headaches. :( I was grateful for her consideration and just crossed my fingers that it would stay that way.

After getting Pierscen settled, Ryan and I went down to the cafeteria to get some food. Ryan only had about an hour left before he needed to drive back to Casper. We talked at length about what I should do that night. I had no desire to try and sleep on that pull out chair. It isn't even comfortable as a regular chair! But I also didn't want to leave Baby P. I knew there was nothing I could do for him except talk to him if he was crying. And as I have mentioned before, though I know how important that is, I also know how much harder it makes things too. It made me feel very helpless. As his mom, I felt like (and feel like) it is my responsiblity to make things better, to make the hurting stop. I felt like by leaving him at night to go back to the Ronald McDonald House, I was abandoning him. I felt like I was "dumping" my maternal responsibilities on the nurses and techs. And yet - I know that does not make sense! The feelings, yes. But the reality, no. The nurses are there to keep him healthy, calm, and relatively pain free. They are far more capable of helping him than I am. But still, the thought of leaving him just tore at me. However, I also had a very strong feeling that I would be so much better able to cope and help him if I was rested too. Ryan and I had planned to turn in the key to our room that morning, but as we were leaving, we talked to the resident manager and she told me that there is a shuttle that runs from the hospital to the house and back, so the fact that I wouldn't have a car any more wouldn't really matter. She urged me to think about it, and that if I decided to turn in the key, just to call her and let her know and I could drop it off with the shuttle.

Undecided, we went back up to the room to spend a little more time with Pierscen before Ryan had to leave. Sometimes time drags when you are dreading what's coming when the deadline approaches... and other times it flies by and you are left with a panicky pit of frantic butterflies crashing through your chest. Ryan's departure was definitely the latter for me. Having him there for the surgery was a miracle - a direct blessing from a loving Heavenly Father. I know I would have been upheld by the faith and fasting of friends and family if he wasn't there, but oh - having him there...

I had almost forgotten the anxiety and worry I had felt thinking about facing the surgery alone. With the worst behind us, I knew everything would be just fine, but I still melted into a pool of tears as he stood by Pierscen's beside, softly crying as he said goodbye to his little boy.   

I did my best to plead with the internal butterfly turmoil to calm down, but I had difficulty swallowing the urge to scream, "Please don't go!" I succeeded, but only just. Asking, pleading, or even demanding that he stay wouldn't have helped. Just watching Ryan cry said more than anything. He would have given anything to stay. Yes, I was scared to be there "alone" again - but what was that compared with leaving your wife and child behind to drive 400 miles away to be completely on his own? No, his lot was far greater than my own.

Ryan mentioned on the way out that his mom has sent him a text letting him know that she was more than happy to come up at any time. She was totally "on-call" but didn't want us to feel like she was pushing her way in. (On the contrary! I was more than happy to have any one come up and spend time with us!) She told him that she would even be willing to stay over night with Pierscen so that I could go get rest. I personally didn't see how this would help a ton - seeing as there isn't anything she can really do for him either, and then I would feel guilty that she was there sleeping on that awful chair instead of me. But we decided to discuss it later when she came up.

After Ryan left, but before Ellen arrived, the social worker, Karla, came in to talk to me. I think social workers are amazing. They have a really tough job. I am sure they see a lot of crazy things up there, and their job is to listen and offer support, comfort, and guidance. Because I know that it is there job to do so, and I felt a little silly unloading my anxieties about leaving Pierscen on her, but it was really good to talk to someone else about it. And it was also helpful because she was able to tell me that there are lots of parents that don't stay with their kids at night. (I couldn't help feeling that I was the only parent that didn't stay with their child. More self inflicted guilt.) She reiterated that if I felt comfortable at all with leaving for the night, that it would actually do more for not just me, but Pierscen as well if I could get the rest that I needed. It helped to have a staff member tell me that - even though I already knew it. The only debate then was whether to take the shuttle back, or call a cab. The shuttle's last run of the day was at 6 pm. I didn't want to go back that early! What was I going to do all night? (Yes, I could have blogged. It would have helped me stay caught up, but I didn't want to go that soon.)

During this time, the staff came in and helped me hold Pierscen. It was a difficult task with him being attached to so many things - and it definitely was NOT a 1-person job, but it was SO wonderful to hold him. We supported him with 3-4 pillows and I just sat in the rocking chair and rocked back and forth, sometimes talking to him, and other times just watching him.

Ellen showed up around 5 pm. With the help the nursing staff, we were able to switch places so that she could hold him for a while.



We talked a lot about what I should do that night. She then offered to stay the night in my place if it would make me feel better knowing that family was here. I explained that it wasn't so much having family there or not as it was my own guilt in leaving him. And then the added guilt knowing that she would be there on that horrible chair not getting any sleep. I just didn't see the need for either of us to lose sleep. I knew that the staff there would take super good care of him and that it wouldn't make a difference if we were there overnight or not. But she insisted. She said she really wanted to stay. It was something that would make her feel like she was helping. I wasn't going to say no if she honestly wanted to do it. And in a situation where I felt so helpless, who was I to deny someone for wanting to help? "Besides," she said, "If I stay through the night, maybe I can help him eat enough so they won't have to poke him again."

Overnight in the PICU, one of IVs in his ankle infilrated and they had to take it out. That meant they were just down to one IV (since they had pulled the right art line as well). When we arrived in the IMSU, they checked his IV because it appeared to be leaking. They flused it with saline, and it flushed fine, so they decided to keep using it for a while. However, later that day that one also infilrated, so they pulled it. They said as long as he was eating enough (enough meaning just shy of an ounce an hour average) they wouldn't need to poke him again. If anyone is capable of getting that boy to eat, it's Ellen! I credit her more than anything else for getting him to the 15 lbs mark. Whenever he went to grandma's, that boy would eat! So yes, if it meant that we kept his fluids steady and he didn't need to get poked again, that would be great.

Bit by bit we were working on getting Pierscen off the heavy pain meds and spacing his doses farther apart. He did pretty well with it. Of course we didn't want him to be in pain, but we also didn't want his system to be used to getting the medicine on the dot every couple of hours. More specifically, he had to be off all IV pain meds, which was the Morphine. That was the constipation culprit anyway, so we were more than willing to get him off that as soon as we could. Besides pain management, he was doing really well. Even the amount coming out of the drain wasn't too bad.

Ryan made it back to Casper around 9:30. Ellen and I spent the evening together until around 10-10:30 pm. Then, since she decided to spend the night, she let me take her car back to the Ronald McDonald House. It was a real blessing. It was wonderful to be able to walk into my room and feel the pressure of the day sliding away. I know sleep is required for all man kind, but I have always felt that I depend on it more than some. It makes tasks that seem unsurpassable a little less daunting.