Tuesday, June 6, 2017

On A Personal Note ~ Marlee's Miracle

Marlee finally getting to head home from St Louis Children's Hospital June 2016

Sometimes I like to get a little personal here on LDS Parenting. As we are now into the month of June ~ my mind has been full of memories of where we were last year at this time. We were terrified ~ our daughter Marlee was so incredibly sick, we weren't sure if she would live. There was a time where we went to her doctor and he rushed her to St Louis Childrens Hospital and as she was being wheeled out the nurses were crying because they thought she wasn't ever coming back. :( 

Even though the entire month of June 2016 was incredibly emotional, scary, and exhausting ~ there were miracles. I would like to share this store with you as a celebration of Marlee's life ~ she is alive, she is doing good with her lung function, and she is happy. We are so blessed that Heavenly Father spared her life. 

About 2 weeks before Young Women Girls Camp past year, Marlee got a cold. No big deal, it didn't even require any meds, it was just annoying to her. Soon tho, it turned into much more and we started what would be, a month full of doctor appointments, ER visits, and an admission to STL Children's Hospital for specialized care. 

At the ER that night, she was happy to see that it was her Best Friend's dad who was taking care of her. She felt much more comfy. Unfortunately, X-RAY showed pneumonia. But they were able to get her started on antibiotics that normally treat pneumonia no problem. We thought we had caught it and that she would take her antibiotics and be better in a few days and ready to head to Girls Camp. 

      Marlee resting in the recliner ~ her spot for the month of June ~ in this picture, she was already on oxygen and struggling to breathe. 

After a couple of days on the antibiotics, we were shocked because Marlee was not getting better ~ She was getting worse. Much worse. She couldn't move from the recliner except to be practically carried to the bathroom. She was so incredibly weak she could hardly hold her head up. The fevers started ~ some reaching as high as 106 degrees. A quick call to her Best Friends dad and he told us that we needed to watch how she acted, not necessarily go by the numbers. We were able to get her through the horrid high fevers by covering her in cool wet wash clothes because she was to weak to get into the shower or tub. We had her doped up on Motrin and we used Peppermint Essential Oil from doTERRA to try sooo hard to make her more comfy. 

After a couple days of this, with the coughing that made her throw up, the high fevers, and the terrifying weakness ~ we knew it was time to head back to the ER. One of the reasons we knew it was time, was we hooked her up to her Pulse/OX machine ~ A machine that measures your pulse and your oxygen level. Of course we want our oxygen level to be 100%. Marlee has a disease that causes her O2 level to drop when she sleeps so we have oxygen for her to sleep with. She does great that way. But we do have the equipment to hook her up to , in order to make sure that she is safe. We hooked her up to her O2 machine and this is what we saw :

The top number is her pulse. The bottom number, in green, is her oxygen level. It wasn't safe. :( Marlee has an alarm on her pulse/ox that goes off if she goes below 95 % oxygen. That is just what the doctor set as her safe levels. Obviously, the alarm was going nuts. We headed back to the ER. The doctor at the ER was very busy I guess, because he just kind of looked her over real quick and said she had a cough. yup~ she did have a cough ! That was about it. He sent her home. We were incredibly frustrated at that point and we went ahead and put Marlee's oxygen on her full time. We had to keep her safe. That is what parents have to do sometimes. 

I begged Marlee to please let me call the Missionaries and have them give her a blessing. Even though she was scary sick, and was in pain and felt awful ~ she told me that she didn't want to bother the missionaries, because there was surely someone who needed them more. She loves them and didn't want to bug them because she was worried they would come to be with her for a bit, and miss being with someone who needed them. I was proud of her for thinking of others, but I was so upset and scared. I went into the bedroom and just fell to my knees begging Heavenly Father to please please take care of her, to please heal her, and keep her alive. 

A few minutes later I realized that I had left something I needed in our Jeep, so I stepped outside to grab it and who did I see walking down our street ???? Yep. The Missionaries. I waved real big lol, a huge smile and just wanting to cry with happiness and grateful ! They came over and I basically attacked them blubbering and crying ! I prayed you would come !!! I kept saying ! I prayed so hard ! Marlee is deathly ill and wont let me call you to come give her a blessing because she is afraid someone else needs you more !!!! They told me that they were out walking and  just felt very strongly to turn down my street !!!! They came in and gave Marlee the most beautiful blessing. It was a miracle to me, that they had listened to the Spirit and that they came to us when we couldn't call them to come. I will forever pray that those boys will be blessed !!! 

A couple of days later, we were at the point where she could barely even sit up on the potty without me holding her on there, she couldn't eat, wasn't drinking enough, couldn't stay awake, and it was terrifying. Time to call her doctor again. We headed up to see him. I had to get a wheelchair and hook her oxygen onto it just to get her out of the car and into the waiting room, They took one look at her and took her straight back ~ they have been taking care of my kiddos since they were little. Marlee was almost 14 at the time and due to her many health issues that she was born with, they all know her very well at the doctor office and love her just like we love them. Her doctor came rushing in , took one look at her and said, i'm going to listen to her lungs, and then we are going to get her admitted down to st louis childrens. He listened to just her left lung first, and yelled out " marlee you sound horrible! You sound like theres a bunch of horse meat that has been ground up and thrown into your lung !" He had succeeded in getting the first tiny smile out of Marlee that we had seen in over a week. We got her wheeled back towards the waiting room and he called St Louis and got things set up, while the nurses and receptionists came and gave Marlee hugs and there were tears shed, I found out later, that they had all been crying because they thought it would be the last time they would ever see Marlee :( 

We were lucky to be able to drive Marlee straight to St Louis ~ we just couldn't mess around we had to get straight there, no stops. As we pulled in to the hospital, this Medi~Vac Helicopter was landing at the same time. We started realizing, just how incredibly serious this was

Once we were settled in the hospital, they began testing ...... and more testing and more etc etc. We knew she had pneumonia and that she was terribly ill, but what we soon found out was that she had a scary atypical pneumonia and they would have to try a couple of different medicines to see if it would respond. We also found out that her left lung was completely not functioning. They called in her kidney specialists - her Nephrologist and her Urologist, and it was lucky because they were right there in the hospital. Soon we added in things for her kidneys, to make sure that they would stay functioning, because that was a worry of theirs that with her being so incredibly ill, her kidneys would shut down. We were thankful, because even tho they lost some function, they still worked and it was safe. After the testing, she was able to sleep and then followed a few days of multiple treatments and trying so hard to get her better and safe. 

One of the things that was mentioned in her blessing from the missionaries was that she needed to be faithful in reading the Scriptures. She took this to heart as she takes any commandment given from God. She is such an amazing Spiritual young woman. So even when she was basically unconscious ~ she made me promise that even if she was to sick to open her eyes or talk, please make sure that I read the Scriptures to her each night. So that first night at the hospital, and the second night, when she was pretty much unconscious ~ I would sit beside her bed and read from the Scriptures. I almost wonder if Heavenly Father had her do that, so that it would keep her mommy calm ! It's hard to be panicky and terrified that your daughter is going to die ~ when you are quietly reading the Scriptures out loud, knowing that somehow, she is listening. It brought such a sweet spirit to the room and to my heart. It was one of the only times that I was completely calm in my heart. As a mother, her sweet and obedient faith really hit me hard and made me so incredibly proud of her and so grateful for her. We were blessed because on the second full day she started to feel the teeniest bit better. Then on the third full day, she was able to sit up for awhile !

The next day after she woke up..... we were able to take this picture and send it to family and friends : 

Do you notice anything missing ????? NO OXYGEN ON HER FACE!!!
WOOHOO! She could now breathe without supplemental oxygen. She was responding to the medication. 

We finally felt like we were possibly going to be ok. She was much more perkier and was breathing so much better and felt better. We settled in for a day of watching movies and doing some crafts, she was finally able to sit up and do some activities ! 

She looks so much better !!!! 

We were blessed to be released from the hospital a couple of days later. Our sweet Marlee~girl, was safe and would be okay. We went back to her regular doctor and there were more tears, as she walked in to see everyone. No more wheelchairs !!!!! 

We weren't really prepared for how intense the recovery period would be. She still ran out of breathe super easy, she tired out very very quickly, she couldn't be in humid air or cold air and she wasn't able to take a shower until almost 6 months later, because the humid wet water and steam made it so she couldn't breathe. It took a good two months, just to be able to feel a bit normal. She was put on medicine for Reactive Airway Disease, a side effect from the Atypical Pneumonia and her lung losing function. 

Now here we are, a full year from when she was first diagnosed with pneumonia. At the very beginning. I can't help but see the miracles, the beautiful faith that she had , and the amazing miracles that a mother's desperate prayer brought. It will still be awhile before she is completely one hundred percent back to the way she was before the pneumonia. She is still on medication for Reactive Airway Disease and she still has days where she needs to rest. But I'm totally ok with that !!!! 

Miracles are not dead. There are miracles every single day and I rejoice in them. Heavenly Father truly loves us so incredibly much and He is so involved in our lives !!! I'm so thankful for missionaries, who live in a way that they can listen to the Spirit and follow the directions that they are given. I'm so thankful for the Priesthood. What an incredible blessing it is. I'm thankful for the Scriptures, for their instruction, and for the beautiful peace I feel when reading them. I'm thankful for my daughter. Do not ever , ever take your children for granted. Please ! Go hug them right now and tell them how much they mean to you !!! It will make them smile ;) 

A few months ago , Marlee completed her Personal Progress. She is 14. She finished the entire program in two years and is now almost finished with her first Honor Bee. She is incredible. She's happy and living the Gospel. What an incredible example she is to me. I love her so much, my sweet Marlee Sarah Beth. Here is a pic of her with the necklace she received for completing her Personal Progress. 
With Love, JL~

Marlee Sarah Beth Kaylor ( my hero ) with her Personal Progress pendant

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