Tuesday, February 17, 2015

Charlotte's Story

This past week has the been the hardest we've ever faced as a couple. Our six year old daughter, Charlotte was sick for a week with what we thought was the flu, but ended up being primary peritonitis, caused by strep that entered her blood, and then her abdomen. We want to share her story and all the miracles that made it possible for her to still be here with us today, healthy and full of giggles, as usual.

It started on Saturday, January 31st. She spiked a fever and felt like she had a bug. She threw up that night, and we assumed it was a flu. On Sunday, she still had a fever and threw up again that night. She also complained of a sore neck, but we chalked it up to the fact that she had been in bed for two days, looking down at an iPad or the computer. On Monday night, she still had a fever, but it would break once we gave her Tylenol. In the middle of the night however, she woke up complaining that her stomach hurt again and her neck was so sore that she wouldn't let us touch it. At that point, we decided to take her into the ER, with concern that meningitis might be a possibility. David took her in right away, around 2:30 am. They took a urine sample that came out normal and the doctor there told David that he felt strongly that it was not meningitis and he did not recommend the invasive spinal tap to test for it. He thought it was the flu and recommended Motrin. Looking back, this is where I wish we asked more questions and did more tests--especially a flu test so we could have known earlier that it wasn't the flu.

David brought her home around 4 am and five minutes after they came home, she got a nose bleed in both nostrils that wouldn't stop. They both fell asleep together on the couch with a towel up to her nose, until the Instacare opened at 8 am. At the instacare, they cauterized her nose to stop the bleeding. The poor girl came home exhausted. After a bath and some fluids and a little bit of food, she returned to her bed for the rest of the day. We gave her Motrin every four hours which helped keep the fever at bay and by that evening she seemed to be feeling much better. She came downstairs and joined us for a family movie night.

Here she is sucking on a vitamin C sucker. I really thought this was the end and that by Wednesday, maybe Thursday, her "flu" would be over. David had influenza just after Christmas and he had a fever for about six days straight, so we figured she had the same flu that he did.

Wednesday morning the fever was still present, but after Motrin, it broke and she seemed to feel better again by that evening. The same happened on Thursday. I was surprised to feel her fever again Thursday morning, but by that evening she was downstairs asking me for a bowl of ice cream and her appetite had seemed to be improving and returning a little bit back to normal. She was still weak and a lot like David was at the end of his flu. She hadn't thrown up since Sunday night, so I felt like Friday was going to be the day she would finally be back on her feet.

Friday morning she was significantly worse. She complained that her stomach hurt again, but it seemed to be pain rather than nausea. It was a lot like how she was acting about her neck on Monday night; she wouldn't even let us touch it and cried out in pain when we came close. I took her temperature and it showed 105, which I didn't believe. I tested it on David and it tested 96 degrees, although I took it from his ear that was facing up and our room was cold. I thought it was broken but gave her Motrin and called her regular doctor to see where the best place to go for answers would be, since we'd been to the ER and the Instacare already. He wasn't in the office that day so they sent us to an extension of his office in Layton for blood work. By time we left, her fever had broke. They were now thinking it was an infection and took a variety of tests to figure out exactly what was going on. 

They sent her home while they waited for the results of the blood tests. She seemed to be doing a little better, but her stomach was still sensitive to the touch and she could only eat a bite of soup and a few sips of Gatorade. After maybe 1 1/2 hours after her appointment, the doctor called and said that her white blood cell count was high and that we needed to take her back to the ER for a CT scan. We packed her up immediately, around 3:00 pm, and she was scheduled for a CT scan at 4:45. David took her in and they started her on her contrast drink they mixed with Rootbeer. David's mom came and took over for me so I could join them around 4 pm. Charlotte was in a lot of pain by this point and was having a very difficult time drinking. They put in a peripheral line in her arm, which she hated after already having blood drawn that morning, in order to inject the iodine shot. We closed the curtain around us and David gave her a priesthood blessing. At 4:45 she got a CT scan.
We waited for about 25 minutes for the results of the scan with Charlotte resting in David's lap. Her stomach was worse and she could hardly move on her own and was freezing cold, with a fever still. Both of our phones died at this point and we were so desperate to know what was going on. 
Time ticked by so slowly.

Finally we were called back to the ER, signed some more paperwork quickly and were brought into a room where they did a weight check, blood pressure, and checked her temperature and then finally led us into another room where we waited for the doctor. When he came in he told us that the CT scan wasn't as clear as they'd like, but they thought it was appendicitis. Her white blood count was very high, an infection was present, and they thought that there were some fluids around her appendix in the picture. They assumed it had burst and told us she would be taken to the OR for an appendectomy. They gave her morphine for the pain which seemed to put her to sleep immediately, but she'd still respond to us when we talked to her. It was a relief to see her relaxed and not in as much pain. We had been so focused on getting answers that we didn't realize how much emotion we were holding back until our friend from our ward, who works in the ER, walked into our room. We both became emotional immediately and asked if he'd assist David in giving Charlotte another blessing. I'm so grateful for the comfort and security that comes from having a worthy husband and friends who were able to continually bless and protect our little girl throughout this process.
They took her to the OR prep room where they removed her clothes, gave her a hospital gown, and prepped her for surgery. We met Dr. Moesinger who we soon found out was the same surgeon who removed our dear friend Emily Ballard's colon just weeks prior. The nurses told us that he was the best when it came to abdominal operations and we were lucky to have him doing the surgery. He looked at Charlotte's stomach and told us that he'd be cutting her open rather than doing the surgery laproscopically. I was texting Emily at this point and she was asking why on earth he wasn't going in laproscopically, which he had told us was because he felt one larger incision would be better than three smaller ones (and it is my assumption that he felt more comfortable doing the surgery that way on such tiny person because the surgeon at Primary's definitely felt that a laproscopic surgery was best.) Before the surgeon left, David mentioned one last time that Charlotte's abdominal pain had just started this morning and hit so fast that it didn't seem like appendicitis, at least what we understand about it. He told us he'd take another look at the CT scan. We spoke to the anesthesiologist and then were literally pacing around her bed, anxious to get this surgery started and get our daughter back to health. 

More time passed and finally one of the nurses came in and told us that Dr. Moesinger was on the phone with one of the doctors at Primary Children's and was thinking now that it wasn't her appendix. This is where things became very scary for both of us and it was difficult to hold back the tears. She apologized for the stress the waiting was causing us and reassured us that they were trying to figure out the best thing to do for Charlotte. And this is where miracles started to happen. 

While we were waiting for Dr. Moesinger's decision, the nurse checked her fever and it was up to 41.3, which is somewhere around 106. She was so proactive and decided to ice pack her entire body and run cold fluids through her IV. She alone brought her temperature down until they could give Charlotte a Tylenol enema. Her temperature was down to 38 or 39 C (101/102 F) about ten minutes later. Dr. Moesinger returned and told us that he had been consulting with the CT scan specialist and the doctor down at Primary Children's and he was 95% sure this was not appendicitis and he said he could cut into her here but that he really felt they were not equipped to care for her if he went in and found out that it was something unexpected. He told us they were going to life flight her to Primary Children's and the helicopter was on the way.

His inspiration to send Charlotte to Primary's was an answer to specific prayers from friends and family that her doctor's would be guided to know exactly what to do for her. Charlotte was so sick by this point, and became so much worse after her operation, that we now know that if Dr. Moesinger had cut her open at that hospital, they might not have been able to save her. Prayer is real.

Neither David nor I could hold back the tears and it was at this point that we both seemed to shift from a very logical and focused and determined mindset to one of faith and a recognition that this was beyond our understanding and we had to trust in the Lord. As they wheeled her bed back downstairs to the ER where they'd set her up for the flight, we both reach for each other's hands.

My whole body was tense as I followed Dr. Moesinger and watched him sign the paperwork to release her to Primary's. I wanted everything to move much faster. I thanked him and asked the paramedics that came in to prep her for the flight how many parents could ride with her, since no one else seemed to know. Thye said just one and David and I had already decided, mostly due to my own prodding, that it would be him so that the priesthood would never leave her.

I kissed her on the forehead, told her I loved her, and headed out to the car so I wouldn't be too far behind. This part is hard to think back on, but also something I never want to forget. In the parking lot, I called my mother-in-law and broke down. David had already texted her that Charlotte would be life-flighted, so we cried a little together and I asked her (again) if she was praying and she confirmed that she had never stopped. She asked again and again if I needed someone to drive me but I felt confident that my adrenaline would get me there safely. It took me a while to find David's car, but I finally was on my way.

That 55 minute drive was, surprisingly, just what I needed at that point. It gave me a chance to pray out loud to my Heavenly Father for my little girl. A few things became very clear to me during that time:
1. Prayer is not something we do to make ourselves feel better. It is not just routine or habit or mental comfort food. It is literal and real. Prayer is this phenomenal gift we've been given to align our wills with God's will and secure for ourselves blessings He's already willing to give, but that are made conditional upon our asking for them (Bible Dictionary; I've always loved that). I prayed for everything I could think of having to do with Charlotte's recovery. I was sobbing and pleading and expressing my faith to my Father in heaven. I remembered the week prior when I was in the temple with my husband, attending a session, when all of a sudden I literally felt on fire with a knowledge that the prayer roll is a sacred and powerful thing. I had often placed names in the prayer roll especially recently with Emily's surgery and my neighbor Norman who had lost his wife and found out he had cancer. I knew it was available to us, but never had I felt its power and truthfulness like that. At the time, I was surprised by this experience, but now I knew exactly why I had felt that. David's dad had put her name in the prayer roll earlier that week and I felt completely surrounded and cushioned by the prayers that had been offered on Charlotte's behalf.

2. The power of family. Our parents, all of David's brothers, their wives and their children were praying for Charlotte and would soon be fasting for her recovery. I felt the power of their faith. My heaviest concern at that time was that she arrived safely at Primary's and that the doctors would have time to assess her condition and figure out what to do, before things got too bad. When I thought of my girl above me in the air in that helicopter, I felt the impression that it wasn't just our family here on earth that were concerned about Charlotte. She is our namesake child, named after my paternal great-grandmother Lottie and David's maternal grandmother, Patricia. I knew those grandmothers were with her on the flight, as well as my grandma Carmen who was always so comforting, gentle, and kind. We also felt that Grandpa Phipps who just recently left this life was close by, perhaps with a tune to comfort Charlotte. I later found out from my brother-in-law Chris that this impression was the result of a very specific prayer of his. 

3. Perhaps the most important answer I felt to my prayer in that car was this: while I get to be Charlotte's mother here in mortality and love her more than I can express, she is also the daughter of a loving Heavenly Father who has a perfect plan for her life. That comforted me so much to know that He was even more invested in her welfare than David and I, and loved her so perfectly. I relied heavily on that knowledge; that her life was in His hands.

I arrived safely and literally RAN inside to the ER and asked to be taken to Charlotte. The poor officer that was helping me got turned around, but I was just so relieved to hear that her helicopter had arrived and she was in a room. When I finally found her, I saw David's face first, and he was smiling. Thinking back now, that was such a comfort to me. There was a team of doctors standing around her bed, discussing what to do. I felt so grateful for each of them!

They put her on a number of antibiotics immediately (and I honestly can't remember if they started some at Mckay Dee with the morphine or not), did another urine sample and put in a catheter, which took a few tries and was so painful and miserable for poor Charlotte. Shortly after that, we met Dr. Fenton, the surgeon on call that night who told us that he felt certain it was in fact a ruptured appendix. This again confirms our belief that Dr. Moesinger was inspired to change his mind and to feel so certain that this was beyond what we originally thought, because he seemed to be the only who felt that way.

Dr. Fenton had another surgery ahead of Charlotte so we had to wait another two hours before they were ready for Charlotte in the OR. She was watching Barbie and the Diamond Castle, drifting in and out of sleep when they finally wheeled her down the hall to the OR. We gave her more kisses and they went into the room down the hall to wait. Debra, our Relief Society president had arrived just after we first spoke to Dr. Fenton and was still with us. The three of us prayed for Charlotte again, and then I crashed, sitting up in my chair.

About 45 minutes later, the surgeon came in and sat down. The first thing he said was, “She is really sick.” He went on to tell us that he removed her appendix, laproscopically, and it was normal. When he was in there he saw that her entire abdomen was filled with a stringy mucus. Shortly after the surgery they received word from Dr. Delgato’s office that while the strep test of her blood was negative, the culture had grown and was positive. They said she had “Primary Peritonitis,” meaning the strep had entered her blood and then her peritoneum, the lining around her abdomen. Her abdominal organs were inflamed, but he was able to check all of them, including her intestines, and there was no damage or tears that he could see. 


We later found out that this type of peritonitis is very rare; less than 1% of all cases of peritonitis are caused by an infection spreading into the blood. It is almost always caused by a tear in the peritoneum which was not found in Charlotte, thankfully (although they continued to watch her carefully for several days for any signs that there was a tear.) He said we could return to her room in the PICU where they would be bringing her now. We walked in just as they were bringing her back. 

  
She was intubated with a nurse pumping air into her lungs through the manual resuscitator, and it was nothing short of terrifying to see her like that. Her entire body was swollen (sepsis) but it was particularly noticeable in her face. We stayed outside of her room while a team of doctors worked on stabilizing her. David counted 13 at one point. There was one nurse standing at the door whose job it was to just watch her blood pressure which had dropped as low at 32 over 10. They put her on three different blood pressure meds, connected her to the ventilator, and spent about an hour and a half putting a PICC line in her arm and a central line in her neck. 

At this point, I felt assured that she would be okay, but it was so difficult to see how severely sick she really was. Once they were finished, and only Aubrey, our amazing nurse, was left in the room, we came back in and saw Charlotte up close and talked to her. I hated seeing her chest rise unnaturally with the ventilator and her face was so swollen she looked like a baby again. We sat with Debra who had brought us some "dinner" and she left shortly thereafter. I'm so grateful for Debra and her insistence on being there with us through the night.

Saturday was a long and emotional day. I went to a nearby Instacare and tested positive for strep, which I had assumed when my throat was aching and we had found out about Charlotte's strep. I don't think I had been tested for strep since I was a kid, but to play it safe, my in-laws bravely took in all of our other kids to be tested that same day. My dear friend Saren and her daughter went along to help, so each child had an adult to help them with that super invasive test! All of them tested negative.

I stopped somewhere for lunch in Sugar House where David and I used to live and all of a sudden I felt very out of place being out in the world while my little girl was hooked up to a breathing machine in the hospital. I felt so emotional and wanted to tell people around me in line what was going on and for heavens sake, get your child tested for strep, just in case.

Charlotte had woken up a few times that morning, choking on her intubation tube and tried to raise her arms to pull it out. We eventually tied her arms to the bed so that she couldn't rip it out, and that was sad too. We talked to her and told her we loved her. They said that as soon as they could get her off of the blood pressure meds, they could extubate her. That was our goal. 


That afternoon, our dear friends the DeGraff's, whose daughter had been in that same PICU several times, visited and brought gifts for Charlotte and snacks for us. It was so comforting to see friends. Our neighbor Katy VanderDoes brought us a change of clothes and much needed toiletries, cookies, and flowers. She even joined another neighbor and sanitized my entire home that evening. Debra washed all of our bedding for us, in every room. Later that night, the DeGraff's returned and Adam and David gave Charlotte another beautiful priesthood blessing. We were flooded with loving texts, Facebook messages, and were especially grateful for the prayers of our family and friends, and even people we didn't know. I am so grateful that we could both be there with Charlotte, thanks to David's parents who had the kids for the four and a half days I stayed.

Sunday was a big day! She woke up a few more times and signed "I love you" and mouthed "water" around her tube. We untied her hands and let her explore the tube and try to wrap her mind around where she was and what was going on. We couldn't really hug her or touch her much because her belly was swollen and she had IV lines everywhere, so the hair on her head was oily from us caressing her and kissing her forehead. Later that morning, she was down to just one blood pressure medication and they decided to extubate her. I was so afraid of that moment, but it went very quickly. She soundlessly whispered, "I love you too" and then later "Barbie and the Diamond Castle." The girl just wanted to finish her movie. We were on cloud nine.
 
  Her first smile was when her big sister showed her a doll on whose belly she drew a scar for Charlotte.
Here she is trying not to smile while her Dad pretends (gently) to give her a little tickle.

 The DeGraff's brought her a box of origami papers which she wanted placed on her bed so she could look at them. That made me want to cry. 
That afternoon she was ready to go on her first walk. They removed her catheter (more pain) and we helped her to sit up. I asked her to put her arms around my neck as I helped her onto her feet and it felt like heaven on earth to hug my little girl. Once she started walking, hunched over like an old man, there was no stopping her! She shuffled out into the middle of the PICU and down the hall toward a window. This was a rare sight for the PICU staff, I'm assuming, so they were all cheering her on. She made it to the window and gave us a thumbs up. 


Throughout this entire ordeal, whenever she was conscious, David would lean in and say, "Phipps are..." and she would whisper, "Brave." What a fitting family theme we chose this year.
The care we received from our nurses Audrey, Gayle, Jamie, and Kelly and teams of doctors, fellows, and residents here in the PICU was nothing short of incredible.

Shortly after her walk, she was moved to the regular floor where she stayed until she was released Wednesday night, on David and my 9th anniversary. She had ups and down with pain and it was a chore to get to the bathroom and go on her four "required" walks each day, but her biggest challenge was how much she missed her big sister Hazel and her own bed. 
 On Monday morning, she was allowed her first drink. It was a nasty strawberry slushy. Sounded good to her until she took a sip. We stuck with water after that.
 I don't know how David captured this face, but this poor girl would feel a lot of pain right every time her bladder would fill up. Usually a trip to the bathroom helped a lot. We stopped giving her morphine Sunday night and were able to rely on two other lighter pain meds.
Luckily, I fit into the "big kid" pajama pants they had there at the hospital, since I didn't have any of my own with me. Glad I was still wearing these babies when we ran into a girl David used to date at BYU. 

On late Tuesday night, she was so upset and homesick that we couldn't get her to calm down. We decided to call her Papa Kevin who always sings funny songs to the kids and naturally makes them smile. On FaceTime, he sang "Great big globs of greasy grimy gopher guts, mutilated monkey meat, roasted toasted birdy feet..." to Charlotte who couldn't help but smile. That was a tender moment. He finished with his classic "You are so beautiful..."
Every time she told me she wanted to eat so bad, I'd ask her what sounded good and wrote it down on her white board. This was her list.
Once she was allowed to try some food, she started with jello and pudding. She only took one bite of each. I wanted to badly to only offer green smoothies or broth, but we had to go with what she was willing to put in her mouth.


 She did not enjoy her walks much...
 Here we are trying to cheer her up in the play room. She was very depressed this night, poor girl.

 But all is well when you have Superman around.

 This straw was the best gift from the Garrison's. David is reading the instructions.


 Her appetite was growing by Tuesday morning. She threw up everything she ate on Monday and Tuesday night when she started coughing, but in the mornings and afternoons, she did well. As you can see, we let her choose her meal:)
 Her best friend, Evelyn, from her Kindergarten class delivered a big package of fun activities and balloons!
When Charlotte had to have more blood drawn and was so DONE, her nurse Lori brought in this amazing horse! I couldn't believe it.

On Tuesday morning Charlotte was asked by Bonnie Midget, the head of PR for the hospital to be filmed with Rick Schwartz of the San Diego Zoo channel that they played there at the hospital. They filmed us watching the channel and talking about Charlotte's favorite animals. Bonnie said some of the nurses told her that Charlotte was cute and friendly, so she was a must-have for their film that they were making for a ceremony the next day, celebrating a collaboration between Hogle Zoo and the hospital. Charlotte was giggling and cheerful at first, but soon grew more and more shy. We took a break for lunch and a short rest and then they filmed her one more time, taking a walk down the hall to get a movie. 

We told them how just days before, one of the doctors had asked her what she wanted to be when she grew up and she told them "a zoo keeper." He asked if she wanted to take care of the animals and she said "No, I want to be the person that collects the tickets and gets the money." Ha.

I left that evening, which was difficult, but we were hopeful that she wouldn't be there much longer. On Wednesday morning, she and David attended the ceremony with the zoo people and realized that this was a much bigger deal than we anticipated. There were several adults, but only a few patients present and they had saved two seats up front for David and Charlotte next to the CEO of Hogle Zoo and the CEO of the hospital! That's when I wished I had been there to do her hair.

They had brought some animals up from the zoo for the patients to see and touch. They had a turtle, an armadillo, a bunny, and an owl. Charlotte said the turtle was her favorite.




Later that day Charlotte attended a ribbon cutting that she had been invited to the day before. She was quickly becoming the poster child for this hospital! At the ribbon cutting she got to play a new video game that was donated for siblings of patients at the hospital. Afterwards, they were so grateful for her participation in these events that they literally showered her with gifts. It was like a second Christmas. She had a bag full of goodies from the zoo, gifts from her nurses for being brave at blood draws, and they even gave her an American doll. (The real kind, not the $25 knock-off that we got her for Christmas.) In addition to that, she received so many kind gifts from friends and family as well. She picked out some presents for each of her siblings and put them into a bag. She was ready to go home.
Wednesday night, the kids and I pulled up in front of the hospital and saw her Dad pulling a radio flyer wagon they use to take some of the patients on walks around the hospital. When I looked closer, I realized that the wagon was full of her gifts and she was being pushed in a wheelchair behind the wagon! 
We were so happy to have her home and she was so anxious to be in her bed with the radio on as usual and I shut the door to her and her sister chatting away to one another, catching up.

We are filled to the brim with gratitude for prayer and the miracles that came because of it. We saw so much kindness and concern and faith from family, friends, and doctors. We know our daughter was watched over and blessed because of the faith of many. Thank you for all your support and love.

We know that we have a loving Heavenly Father who has a plan for our lives and a perfect Savior who gave His life for that plan and for us. We know prayer is literal and real and powerful. We know that the strength of a family can move mountains and change minds, and influence endings.
We love you all.

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3 comments :

  1. I cannot hold back the tears as I read this. Oh my goodness, what a crazy, terrifying few days. But I couldn't help but chuckle that it took you a few minutes to find David's car. :) I'm sorry you all went through this but SO grateful that she is recovering well. And you rock the Primary Children's pj's! Love and blessings to you all.

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  2. Such a beautiful testimony that has touched so many lives! I look up to you so my dear friends!💖

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  3. I am so thankful for answered prayers. And I am amazed by Charlotte's quick recovery. Phipps are brave...and strong! My favorite is number 3. That's a truth that we've been reminded of repeatedly over the past several years due to our situation with Kaleigh.

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