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.



Surgery Week Day 2: ICU

Life lately, in one word, could be summed up simply as this: INSANE. I have wanted to post, especially since I got the Surgery Day posts up so quickly, but these last two weeks have been a whirlwind. But - things are finally settling down (for reasons a whole separate post will require) so with any luck, I will be able to get the rest of our surgery adventures up soon! Day 2 here we go...

 Staying at the Ronald McDonald House was definitely the right decision. We needed sleep so bad! And even though we wanted to rush straight over in the morning, the 7-8am unit closure thankfully forced us to stay "home" a bit longer to get the rest that we needed.

 Overnight the swelling and bruising had intensified. We expected this, but it was no less difficult to see it. They split his turban, which they told us they would likely have to do, in order to allow for swelling. It definitely helped the swelling above the nose.

 Thankfully we had the same nurse as we did the first day. With Ryan and I both working in the hospital, we know that the chances of having the same staff the following day isn't very likely, so it was definitely comforting to see Deeana there again. 

 Deeana told us that our night nurse, Sarah, didn't feel that his pain was controlled very well overnight, so she had continued to give him the morphine every hour. However, when Deeana came on shift, she said Pierscen's stomach looked huge, and suspecting that his pain was more constipation discomfort than surgical pain, decided to give him a suppository. She was rewarded with a Mount St. Helens eruption. After that his stomach shrunk quite nicely and he seemed much more at peace.

 Even though he still looked scary, they said everything was progressing well and especially since they were able to determine that it was his stomach, and not is head causing the issues, they felt just fine writing the orders to have him transferred to a step-down unit.

 Since it was now just a waiting game, Ryan sent me back to our sleep room to take a nap. I am SO glad we decided to go to the Ronald McDonald house. The bed in the sleep room was okay, but it was super cold and the PICU waiting room was just outside the door, so it was anything but quite. However, it was dark, and it was somewhere to rest. I don't think I really slept. If anything, it was that light sleep where technically you might be under, but you are still aware of things going on around you. That's alright. Like I said, at least it was a place to go and rest.

 While I was gone, they gave him another suppository and he had another crazy diaper. Lucky for Ryan, he was there when it happened, so he got to help clean it up. :) Shortly after I came back, the doctors came by and did their "rounding" where they sit in a big group and go over all his information and discuss what, if anything, needs to be done differently, if anything is pending, or if he is ready to go.

 Around 12:30 pm, all the orders had been written, and we were moved to the Infant Medical Surgical Unit. It was wonderful to know that he was well enough to be released from the ICU, but I was nervous about moving to a different unit too. It's always difficult to have to start over with new nurses, in a new area, especially one that might require sharing a room with another patient. Sadly, I think that's what I was most nervous about!

Surgery Day: ICU

What a ride! Depending on the moment, I may be able to laugh and joke around, and the next I may be unable to control the tears. Man, this has been hard!

About 30 mintues after the doctor came to talk to us, we were shown back to the ICU. He was crying as we came into the room. My heart instantly broke and the tears started flowing. I thought I was prepared, but... I am struggling to even find the words. 

 I think the thing that surprised me the most was how swollen he was already. They told us that day 2 would be when most of the eye swelling would begin, but his eyes were already swollen to the point that he was only able to get them open just a teenie tiny slit. (Unfortunately I was out of the room when he did it, so I didn't get to see it.) Most noteable was the swelling of his forehead above the nose.

 Our nurse told us that when he first came in he was screaming mad. She gave him some Morphine and he calmed down fairly quickly.

 He has a drain in his head to allow extra blood and fluid to come out. He had 2 IVs, one in each foot, as well as an arterial line. Ryan was surprised they didn't have to do a central line, as was the nurse, but that's a good thing. He is on oxygen, has a catheter, and is attached to blood pressure, heart, and resperation monitors.

We stayed with him for several hours. I was not squeamish with the amount of blood coming from the drain, but I still turned away and cried for a while. It's just so hard to see him like that! And I can only imagine what it would be like to be 5 months old, go to sleep being able to see, but waking up in lots of pain and unable to see anything. How terrifying must that be!

One of the Neurosurgeon team members (not our doc) and our nurse Deeana.

Around 3 pm Ryan and I decided to leave for a bit. We were able to get a room at the Ronald McDonald house and we needed to go check in and pick up the key before 5. We headed over to the main house where we did the basic check in. Then they sent us to the other house where our room was. I have to admit, I have heard of Ronald McDonald housing, but I really didn't know much about it. I am so impressed! And so humbled! The lady at the second house gave us a tour. When I say house, I mean that quite literally. It is located in one of the big, beautiful, historic houses on South Temple in Salt Lake City. She took us into the kitchen and explained that we could bring food in, or eat whatever was in the fridge or cupboards that didn't have a room number on it. There is more food there than in my own kitchen! Next we went into the living room area which is for entertaining guests. There is also a tv/game room more for children. Then she took us into the dining room "where we would take our meals." It has a long formal dining table, with big beautiful chairs. It looked like one where Ryan and I would sit at opposite ends and have the severants bring everything in. Haha. It was amazing. She then took us up the staircase which is large and grand. It reminds me of Titanic. Upstairs she showed us to our room which wasn't ready quite yet. If it had been I think we both would have taken a nap! She gave us the code to the door, some numbers to call incase we needed anything, and showed us where to sign in and out.

It was so amazing! I felt so overwhelmed by the generous nature of it all. I know it is only possible through the donations of others. I have never been on the receiving end of charity like that. It was humbling and inspiring. You better believe I will be donating to the cause in the future! 

After we had our tour of the house, we went to find food. We stopped at a burger joint on 1300 E. I have no idea what it was called. We just needed food. We sat down at one of the tables and we both began to cry. We were both emotionally and physically drained. "There's nothing I can do for him, Ryan!" I sobbed. "He must be so scared!" I know he is in amazing hands here. I know they are doing everything to keep him comfortable. I am not worried about him or his recovery. But I hate feeling so helpless. I am his mom! I feel like it is my job to make things better! It's my job to console, to explain, to comfort. And though I know being there for him, taking to him, and holding his hand is extremely important and helpful, it is still so discouraging to wish I could do more and know that I can't.

We sat across the table from each other holding hands and crying. There weren't too many people there and I don't think any one really noticed, but if they did, I don't care. We still had our stickers on from the morning that had Pierscen's name on it so they would know we were his parents.

I am so grateful Ryan was there. It was so wonderful to have his parents there as well, but there is nothing - and no one that can replace the strength and power of having Ryan by my side. Even when we are both crying and struggling to breath, have the other one to hold is more comforting than anything.

We eventually made our way back to the hospital. A break for air and food was really needed and we felt like we would better be able to cope. Clair and Ellen stayed with Pierscen while we were gone, so I am sure they were pretty hungry. They stayed around for a little while and then went home.

For the next couple of hours we took turns sitting by him and talking to him. Ryan watched some more Netflix shows and I read a little bit. While I was sitting there, I looked down at my feet and thought, "Huh. One of those is whiter than the other." Then I looked a little closer...

Hahahaha! They aren't even the same shoe! This is what happens when you get dressed at 4:30 am. Asics and Sauconys. Good shoes. Thankfully they are similar enough that I highly doubt anyone has noticed. Even since posting the top picture to Facebook it has taken a few people a while to notice that they are different. I can't stop laughing about it.

He finally woke up enough that we thought we would try to feed him. He hadn't had anything since 9:30pm the night before, so he had to be starving! He ate very slowly... just a swallow or two here and there, but he managed to eat 5 oz! We were so impressed! Go Pierscen!

We were able to stay with him until 7 pm when they have shift change and we have to leave the unit for an hour. We plopped down on the couch in the waiting room. I think we both would have passed out if we had closed our eyes for too long.

When we came back, our new nurse Sarah decided to give him a nice warm sponge bath. She had Ryan pick him up so she could arrange some more pillows and get him all situated. Even though it wasn't a "real" bath, I think it probably still felt pretty nice.

It was amazing to watch the swelling and the brusing grow right before our eyes. Within a matter of just a few hours he was already swelling quite a bit and the eyes were discoloring rapidly. It was hard to imagine what it would be like by the morning. They did tell us that most likely during the night they would make a cut in the turban to allow for extra swelling.

Around 9 pm our nurse let us know that they did have a sleep room for us. We had requested one earlier, even though we knew we had a room at the Ronald McDonald house because we couldn't decide whether to go or stay. Going into this I don't think that I ever would have considered leaving him. But standing in that room, bone-deep exhausted, listening to him cry and knowing that there was nothing we could do... it began to feel like a good idea to go. Besides, if we could both actually get some sleep, we would have more strength and stamina for the next day. I was especially concerned for Ryan since he would have to drive back to Wyoming. There is a recliner that turns into a bed in the room, but it certainly isn't very comfortable. The sleep room just has a single twin bed. We thought that if we stayed we could just take turns. But I just felt like that wouldn't do much good either because then neither of us would get a good night's rest and we would both still be exhausted. We decided we would head to the Ronald McDonald house and if we found we couldn't sleep from worry or stress, we could always come back. Ryan wanted to keep the sleep room as well because we could have it until 12 the next day and that way we would be able to take a nap if needed, but i felt horrible holding it if someone else needed it more. We asked our nurse and she double checked with the social worker and everyone had been placed in a room so we were okay to keep it. That made me feel much better.

We kissed P goodnight and walked out. That was incredibly hard to do. The whole way to the car I kept asking Ryan if he was okay with it. I knew it was for the best if we could get a decent night's sleep, but it was still agonizing walking away.

Ryan was hilarious once we got to the house. He has seen a few too many scary movies and was just sure that the place was either haunted or used as a mortuary, or both.

"See how wide that door is? They would only need one that wide if they were bringing in caskets."

"That's nice, honey." 

"What if our fireplace just bursts into flame? Swoosh!!!"

"We will be fine, babe."

"What was that?!"

"I don't know."

"See! I'm telling you..."

I just rolled my eyes and laughed. A few too many movies indeed. Ryan was in the middle of saying our evening prayer when the toilet made a loud sound - a partial flushing noise toilets sometimes make when there is a leak somewhere. Ryan shot up and almost off the bed, his sentence cut short in a loud gasp. I instantly starting laughing! I waited for him to calm down and finish the prayer before truly busting up.

"Didn't that scare you?!" he demanded.

"Not really," I replied. Yes, it startled me, but I wasn't actually scared. It took a while for his heart to stop pounding, but we were both eventually able to fall into a deep sleep.

It was such a long, exhausting day with more emotions than I can find words to describe. We are so blessed to live in this day and age where this is possible. We are incredibly lucky to have such amazing family and friends who love and support us and have been fasting and praying for us. I know they are the reason we are doing so well. The big scary part is over, and now we are just in for a long road of recovery. We couldn't be in a better place though. The staff is wonderful, and I know they will take wonderful care of my baby boy. I know angels are watching over him, both on this earth and on the other side of the veil.