Chance Gets Pneumonia (Empyema)

(This post is ridiculously long. I've been writing this nightly since coming to the hospital with Chance. It's proven to be great therapy for me each night and I'm hopeful we'll look back at this as a hard time and rough memory soon. For now it's our reality and we're dealing with so much emotion, this is a great way to help me channel my thoughts and energy and get through this.) 

About a month ago, Chance spike a fever of 104 degrees. This went on for 8 days as we tried to figure out what was wrong with him. After lots of tests a chest x-ray revealed he had pneumonia. Antibiotics were ordered and everything seemed to clear up quickly and nicely. I was shocked it was so quick! He was back at preschool and soccer after a week and seemed healthy and fine.

About 3 weeks later, I started noticing he had an increased heart rate. It was around 134 in the daytime which I knew was high. The only reason we knew this was because I'm crazy and monitor his oxygen all the time given his history of asthma and with his recent pneumonia I was paranoid about his breathing. I called the doctor and had a telehealth visit. He thought it might just be a cold and told me to wait a week or two.

After about a week I could tell his breathing was getting a little bit labored and he would be tired after running around with friends or going up the stairs. His heart rate still hadn't gone down and I felt like he had lost quite a bit of weight. Even though the scale didn't show it, his body just changed so much, so fast. 

ADD PICS

DAY ONE (Wednesday): 

I decided to have a second doctor take a look at him just to get another opinion. He also did a telehealth visit but at the last minute Dr. Foster agreed he wanted to take a look at his chest and listen to him so we brought him into the clinic. Thank goodness. Dr. Foster listened to him and instantly wanted to have him go to the hospital for a chest x-ray. 

As we were driving home from the x-ray I got a call from the doctor saying we needed to go straight to the ER, and that Chance had a really significant infection in his lungs. I got home, we quickly packed, had Frank Taylor (our sweet neighbor) come over and give him a blessing, and headed up to my mom's to drop of Ellie. We then went straight to Primary Children's where I knew he would receive the best possible care. The craziest thing in all of this was that Chance had no fever, no cough, and no indication other than the high heart rate that anything was off or wrong. While we were packing for the hospital he was running around the front yard and climbing and playing in and out of the truck with his neighbor Finley. It was so weird.

Once we dropped of Ellie we headed up to the hospital. We checked into the ER and things got ugly real fast. Chance had to take a few tests that scared him so much. A blood test, COVID test, placement of IV and an ultrasound all happened at once. He was in pain, exhausted, and so scared of the nurses and doctors. I knew it was going to be a rough stay at the hospital but I honestly had no idea what was coming. 

Late that night we were transferred to the CMU (Children's Medical Unit). I was relieved about this because I learned in our first stay back when he had RSV that the 3rd floor is much better than the second floor. The 3rd floor has crying, which you think is a bad thing, but at the hospital noise is a good thing. The second floor holds the intensive care areas, and the silence is eerie. I was relieved to be on this floor and am hoping we don't have to go up a floor at any time during the rest of our stay here. 

We got checked into our room and tried to get some rest, but we got very little. Andrew and I shared a tiny bed in Chance's room for the first couple of days and it has been COZY. We have to rotate at the same time if we want to move, and it takes us fully spooning to fit. 

Day TWO (Thursday): 

We started learning Chance's empyema was pretty significant. The doctors explained to us that he would have to have a chest tube to drain what they call a pleural effusion, or extra fluid from the pleural space around his infected lung. They warned us that the procedure would be very painful but that it should remove a lot of that liquid and help him to recover with the help of antibiotics. His CPR score, which is an indication score of inflammation in the body, was at 6.8. After a long day of waiting (Chance was surprisingly happy on this day but STARVING because he couldn't eat) we were finally able to have Andrew give him a blessing and then I walked him down to the operating room for surgery.

Andrew SUNRUN - INTERVIEW IN BATHROOM BEFORE SURGERY. UNDER COVID LOCKDOWN AND COULDN'T LEAVE THE ROOM. 

Andrew had to wait, talk about leaving him, how hard it was on both of us, etc. We were on COVID lockdown. 

After surgery we were so sad he was in so much pain, getting him awake from anesthesia, helping him move, go to the bathroom, etc. It was so rough the first day. 

Day 3 (FRIDAY): Resting, waiting, anything else? CRP was down at 4.3, we were happy to see him make progress! He had a lot of anxiety, started moving, went to the bathroom, by the end of the day he was fine and playing and moving. We both went home, I went to see Ellie at my mom's house and Andrew took care of Chance. It was a big deal because he walked and had lots of confidence. After I got home Andrew left and went to his parent's house to take a break. 

Day 4 (SATURDAY): Chance's birthday! Was a great day. We thought we were making progress and that we were going to be out of here in just a couple of days. Talk about gifts, decorating his room, etc. We were very optimistic this would be a breeze and would be leaving soon. Chance felt so much love and we were overwhelmed with how many people brought cards and gifts, etc. 

Day FIVE (SUNDAY): CRP was up .1 and 2.7. He was resting and doing well and then I noticed in the afternoon his heart rate went up to the high 130s and I knew something was weird again. We watched him and played with him and felt that he was making progress. He was happy. I went to Karen's for a yummy dinner and to see Ellie. Andrew went earlier in the afternoon to see Ellie and play with her before putting her down for a nap. 

Day SIX (MONDAY): CRP jumped to an alarming 10.6. Today was a rough day. We were very scared to wake up and hear that this number was so high. It was so high they actually didn't believe that was right and wanted to get a test again to be sure it was accurate. It came back that the number was in fact correct, so we knew things were going to start to get ugly. I cried a lot today. We had to take Chance down to get a CT scan and he was so nervous. We tried to make it fun and were happy to find the scanning equipment was actually shaped like a Pirate Ship! He was so brave as he laid down on the table and held our hands and held still during the test. On the way back from our test I asked the nurse if they could wheel Chance outside for some fresh air. The nurse was sweet and agreed to take him through a little garden area where he and Andrew threw some coins into the fountain and made wishes that he would get better. He looked so sick in that wheelchair and as we were walking down the main hall in the hospital I caught lots of empathetic looks from people who passed by us. All I could think was how I have been on the other side of it and felt so bad for families going through something so hard with a sick kiddo, and how I couldn't believe this was happening to US. We were that family! I still can't believe this is happening to us and got pretty overwhelmed with all the tests he had to do today. 

The scan revealed that he needs a second chest tube placed in his chest. I haven't ever felt my heart break like it did today. Andrew and I both cried (I've never seen Andrew cry like he has this week), and of course immediately following this news we learned he needed to have a new IV placed, which is the saddest thing ever. Every time he's poked he loses his mind and screams in pain. Andrew and I have to lie on the bed with him and hold him down because he tries to kick and pull his arm back. These screams will give me nightmares for the rest of my life, I'm sure of it. I hate everything about this place and the situation we're in. I hate the way Chance smells like IVs and blood and sweat, I hate the sounds of the monitors, I hate the sounds of the screaming sick kids on either sides of our walls. I hate the numerous tests he has to continue doing. I hate walking the halls and seeing all the other parents with yellow badges looking as sad and helpless as I feel. It is so heartbreaking and I wish I could fix everything so no person ever has to spend any time here in this place. As much as my heart breaks for Chance, I can't help but feel like we're the lucky ones here. Chance at least has hair. There are so many sick kids here. It's so sad and heart breaking.

I miss Ellie so much. My mom and Andrew's mom have been taking care of her this whole week. They have been such a great help but I fantasize about holding her in her green chair at home and rocking her to sleep while Chance breathes peacefully in his bed next door. I hope so much we can go home soon. This stay is taking a toll on all of us and I just want this nightmare to end.

I know I will never be the same after this. I have pleaded with God to have this end for us soon. I know after this I will never look at trial or hardship or sickness or pain the same way. I can't stop thinking about families in third world countries who go through this kind of illness with their kids and have no way to help them because they don't get to enjoy the medical advancements we have. 

DAY 7 (TUESDAY) Yesterday was such a rough day. I came into today with really low hopes but am surprised the day wasn't quite as bad as I expected. We awoke to another alarming CRP reading of 18.2. We were happy to hear the surgery had been scheduled for 11:00 today, meaning Chance didn't have to go hungry for too long. Poor kid has been starving half the time we have been here. Because we were out of our COVID lockdown, this time both Andrew and I were able to take Chance down to the operating room. While he was on the table being sedated we were able to have a good conversation with the surgeon and felt a lot of peace that he was in good hands. Everyone loves Chance. I think it's because . Before I left the OR I asked the surgeon if he had kids and he said he had five. Through tears, I asked him to take care of Chance like he would his own kids and he assured me he would.

While Chance was in surgery Andrew and I grabbed some snacks from the Ronald McDonald room (we were starving also because any time Chance can't eat, we also don't eat since we don't want to eat in front of him. 

We took the food out onto the roof and sat in the sun. I closed my eyes and pretended like I was at Lake Powell and Andrew and I had an amazing chat about hardship and trials and how much this experience is changing us as people. I seriously don't think I'll ever be the same. While Chance was in surgery, I sat in the sun and closed my eyes and felt the warmth on my face and I'll never forget how at peace I felt today. It was like magic because I am generally so anxious. I am confident it was the power of prayers and the support of my dad and other angels helping us get through this crazy time. The fact that I've been able to sleep, be alert, be an advocate for Chance, all while keeping my composure while living through one of my biggest nightmares is shocking to me and the only explanation I can come to for this is that I am being lifted and strengthened and pulled through this by something that is bigger than myself. I hope I never forget that peaceful feeling I felt in the sun on the roof today. A major win from today was that they placed a PICC line in Chance's arm. This means he won't have to have pokes every time they draw blood, give him an IV, etc. which is SO AMAZING. It takes a lot of anxiety off of him and I'm hoping this helps things go smoother from now on. I really wish we would have done this sooner. 

Tonight went better than I thought. He came out of sedation and was a little bit loopy, but has been moving around surprisingly better than he did last time and seems to be handling everything great. He did throw up (projectile vomited I should say!) right after surgery because he wanted to eat pizza right after and I think he had too much too soon. We were happy to hear him talking and acting a little bit silly not too long after he woke up. He has been on some oxygen tonight and of course I get anxious when that happens (RSV flashbacks...I still have PTSD of his oxygen dropping and that sound the monitor makes when it his 89% or lower sends chills down my spine every time). We just took him to the bathroom for the first time since his surgery and it reminds me of how I went to the bathroom the first time after having Chance! It is so rough. It takes at least two of us, sometimes 3. One has to hold onto Chance in case he falls, one has to hold the box and make sure his chest tube is safe, and one has to move the PICC line IV stand. It's quite the obstacle and takes at least 10 minutes, which is exhausting for all of us.

We are getting ready to go to bed. Chance seems happy and hasn't needed oxygen since going to the bathroom. I'm so grateful for this and am hoping I get some sleep tonight. Lucky for us Chance has been sleeping great here. Praying we have good news tomorrow and that this is behind us soon.

DAY 10 (Friday): The last two days have just been waiting. Waiting, waiting, waiting. The hospital room feels so small. The good news is his CRP number is going DOWN! It dropped from 18 to 9 after his surgery, then yesterday to 5.8 and today was at 4.1. The numbers are a good indicator that the inflammation is going on and his body along with the antibiotics are working hard to fight off the infection. It feels like a marathon right now. Poor kid is basically chained to his bed all.day.long. Not only that, but every time he has to go to the bathroom (which feels like every ten minutes) it's a huge ordeal. We have to call at least one nurse in, rearrange cords, etc. He was in good spirits for the most of the day today. I tried hard to keep him happy and entertained. A sweet lady from their "art therapy" team came in and they had lots of fun with some colorful clay. We also worked hard on thank-you cards for all his friends, he was so excited to put stickers on them and color them. I think it's really good for him to have tasks to accomplish right now, so we made a list of all his family, doctors, and friends he needed to make them for and we have been slowly working on them for a couple days. 

I felt like mom of the year today because I convinced the nurses to let me take him in the wheelchair down to the wishing well/garden area again. To my horror they had me take him by MYSELF. I was pushing a wheelchair, holding a box full of Chance's bodily fluid which CANNOT be dropped, making sure we didn't kink his tube, all while pushing an IV stand with the pump on a generator for his tube. I was so stressed out. I also got so many sympathetic looks in the hallway walking around the hospital. I still can't believe we're on this end of it and I'm that tired mom and Chance is that sick kid.

I'm stressed about his heart rate. I need it to go down. Different doctors on different teams are giving me conflicting information and I'm confused and it makes me nervous. The attending physician on the Infectious Disease team mentioned she wanted to do a blood test today when I brought up his heart rate, making me think this is unusual. The other doctor on the other team told me about 30 minutes later that it's not very high and they aren't worried about it. I feel like this type of confusion has been coming up a lot lately, but maybe it's just because I'm more stressed than ever right now. 

I just found out my next door neighbor, her husband and their EIGHT kids all have COVID-19. I was taking a bath tonight and had this thought that maybe God put us into the hospital right now to protect us. I know COVID hasn't affected "most kids" but Chance continues to show us he does not fall into the "most kid" category. I felt strongly tonight that God was protecting us, so we're just going to cling to that thought because it was a good thought. 

Day 11 (Saturday)

I wish I could see into the future. So much. I continue to worry. Worry. Worry.Worry. About Chance and his stinking heart rate. About this damn infection, about how much his chest tube is draining, about whether or not he really has a fever because he's had so much Tylenol and Motrin it's probably impossible to tell right? I worry about his hydration and if he's drinking enough. The list goes on and on.  I wish I could just take the monitor and turn the heart rate down to 90 or 100. And that would magically bump his heart rate down and he could finally rest and everything would be fine. I can't stop fighting this nagging feeling that there is something else going on besides just this pneumonia. I don't know if that's "mother's intuition" or anxiety. I am having a hard time understanding which is which these days. I am also having the hardest time controlling my worry and wish so much I could just turn it off. I just love Chance so much it overwhelms me, and I want more than I've ever wanted anything in the world, for him to just get better. I dream of the doctors walking in the room saying, "get dressed, it's time to go home!" I have his outfit in his bag all ready to go and even got him the cutest new beanie to wear when we leave. 

Last night Andrew stayed at the hospital while I took Ellie home. After she went to sleep I cried in the bathtub because I thought for sure when I took that bath it would mean that this ordeal was behind us. But coming home to a house without Chance and Andrew was so rough it overwhelmed me. I went in Chance's room, looked around, smelled his clothes and lost it. I just need him to get better.

It was so good to be with Ellie. I have mounting guilt about the lack of attention, time and energy I've given her lately. I am so grateful to both of our amazing moms for taking over with Ellie. She's such a fiesty little thing. I can tell she misses me a lot. It was good for my soul to play with her. This morning we woke up and snuggled in my bed for a while. Then we watched cartoons and I got her breakfast and went for a run. I pushed her in her jogging stroller and we listened to music and I tried my best to have a good day and clear my head. It was normal, but it wasn't. I'm going through the motions and trying to be the best mom I can, but my heart is with Chance and I can't fully be present in anything until he is better. There is a hole in my heart right now that is with me wherever I go.

I got myself ready today, and even wore a cute fall hat for a couple of hours because I'm so sad we're missing out on Fall. It's one of my favorite times of the year and I am so sad we have now missed his birthday, lots of fun Fall activities, and now missed out on Andrew's family Halloween party tonight. Chance LOVES Halloween and is going to be so bummed to miss going to Cornbellies this year. He really has waited all year for it and there's no way we're going. COVID-19 cases are at an all time high, which only adds to my stress levels. With his freaky lungs I have no way of knowing how this new virus would affect him. 

At the same time, as I sit here crying and feeling overwhelmed by this whole process, I have to reset and find gratitude. Gratitude that Chance is still with me in this room, driving me crazy with his crazy energy and cracking me up with his imagination. He really is in good spirits considering everything he's been through and the fact that he's been basically chained to a bed for 11 days. I am so impressed with his energy, sense of humor, and imagination. I really do have so much gratitude that he is otherwise a healthy, happy, normal kid. There are so many kids here in this hospital that have never had the luxury of "normal" and have never been healthy. As much as this hospital stay has absolutely sucked, I will always be grateful for the amount of uninterrupted, quality time I've been able to share with Chance. I'm so grateful that tonight I was able to play "store" with him. We cut up paper to use as money and he set up his animals and toys on his bed and I pretended to buy things from him. He loved it so much, I'm sure we'll play again tomorrow and I'm going to go on Amazon after I'm done writing this and look for a cash register for him. We also built a fort. I put blankets around the top of his bed and he hid underneath it and was so excited about it. He kept hiding and saying "can you see me mommy!" Before bed we played basketball! He has a hoop the nurse brought in on the back of his door and he had so much fun shooting hoops. 

I know he's in good hands here and I need to trust the doctors more. For some reason I think that if I ask enough questions or care enough I'll magically be able to fix him. Tonight Erica (my favorite resident doctor who has been with us from the beginning) came in and talked to me because I was worried about his heart rate. She told me they think he's getting better and we have made a lot of progress. She said they are going to do some additional blood work tomorrow morning to check his blood levels and electrolyte levels to be sure there is nothing wrong with his kidneys. She said they don't have any reason to think they aren't fine she just wants to be sure we're being careful and monitoring everything. I felt so good to know that they are really watching him and constantly monitoring his levels and checking his blood. But of course right after she leaves, I get online and start researching kidneys and pneumonias, and now I'm freaking out and can't sleep. I need to NOT get ONLINE and check things. It is never helpful and only causes me more worry and grief. It's the weirdest impulsive thing I do and I need to get myself to stop. But now I'm nervous about his kidneys and hoping everything comes back tomorrow and it's a better day. Andrew is coming up tomorrow after he drops off Ellie at his mom's so we will both be here to spend the day with Chance.

I am wondering if all of this is happening to drive me to my knees. I have prayed harder and more earnestly in the last week than I have in years. I am doing my best to trust God and His plan for us and Chance, but it's so hard sometimes. Aside from Andrew, I have never known a love like I have for Chance, and so I've never felt heartbreak like this either. Being a mom is the most wonderful, heartbreaking rollercoaster ride I have ever been on.

Once again, I'm nervous for what tomorrow will bring. Praying all the bloodwork comes back normal and we have another slow, uneventful day tomorrow. Even though slow is boring, slow here is good.

Saw this quote in a pamphlet they had at the hospital and loved it so I'm sharing it here: