Well I say "unexpected" because it wasn't planned but the reality is, we always know a hospital stay is a realistic possibility at any point.
It started Wednesday, we were at church and when Ella came out of class I immediately knew something was off. She looked like she felt sick, her eyes were heavy, her skin was pale, she had a slight bluish tint. I asked her if she was okay and she said she didn't feel well at all. I assumed she had been too active in class because I wasn't there to remind her to take breaks and when she overdoes it she gets these same symptoms (It's not uncommon for her to get bluish/pale and vomit after playing too much), but she assured me that she hadn't been running more than usual. We got her in the car and when we got home we took her temperature and she had a low grade fever. This low grade fever continued each day but still no other symptoms besides a mild scratchy throat until Saturday. On Saturday we heard her cough once or twice and it sounded a bit congested. Jon went to work and Ella and I were home resting. We had been monitoring her sats at home to make sure everything looked okay but by late afternoon I noticed her looking much more blue than she had been so I hooked her up to the pulse ox monitor and her heart rate was a bit elevated and her oxygen was about 15 points lower than her base line (and her base line is already lower than a healthy person's). I called Jon home from work and contacted her Cardiologist and then the Cardiac on call doctor and they told us to bring her to the hospital ER just to be safe. We drove up there and they were ready for us (because cardiology had called ahead to let them know we were coming in) They got her hooked up to the monitors and then started her on some oxygen to bring it up to her baseline. They had to bump her up to 1 1/2 liters of oxygen before she started sitting where she needed to be oxygen wise. They started an IV (poor baby was SO brave even though it was terrible). Then they admitted us to the cardiac floor for overnight observation. Over the night and through the next day Ella continued to desat (drop her oxygen level) even while wearing her oxygen but only when she would get up out of bed. They ran some blood, and some nose swabs and a chest x-ray, the results showed that she was positive for two viruses. Then they did and Echocardiogram just to make sure her heart function hasn't decreased. Praise the Lord her heart function looked good!!! While doing her echo her cardiologist ordered them to get some pictures of her heart while she was standing (Echos are typically done while a patient is laying down) to try to find out why she was desatting with position change. When Ella had her most recent open heart surgery (the Fontan) she had a fenestration put in (which basically means her surgeon created a hole in her heart to help take some of the pressure off of her lungs. This helps the body last longer with the Fontan circulation but it is somewhat controversial. Thankfully for us, her cardiologists agree that it is best for her) Turns out that this virus or viruses have created some extra strain on her lungs and her body is using that fenestration a lot right now, which means it is doing it's job but this also means her oxygen will most likely be lower for the remainder of this illness. Ella's lungs are extra weak due to the damage done from poor blood flow before her surgeries so viruses based in the lungs hit her especially hard. Which is why we are so vigilant about trying to keep her well!! Side note, if you see us out and about and you or someone in your family (or someone you have been around) is sick (even a little), please love us by keeping a safe space between us! I can't begin to express how much anxiety it causes knowing how something so "small" to someone else's immune system can be so BIG to my sweet girl or anyone who is immune compromised for that matter. Ella was sick all summer and has already been sick a few times this fall. We are trying so hard not to isolate her and become little hermits who never leave home, but I have to admit hazmat suits sound pretty dang enticing after watching my baby suffer so much due to germs lately. Please just stay home if you are sick, wash your hands well and often, cover your cough with your arm, and always do your best to protect the most vulnerable among you! Please! I tend to get a bit passionate about germs because they hurt us so much, but back to Ella's hospital stay. Once we got the all clear for her heart function, we got the tests that show what viruses she is dealing with, and found out why she was desatting, they let us discharge her and bring her home! The virus is also causing her eyes to hurt so they had us see the ophthalmologist before we were officially discharged and they checked her eyes thoroughly (poor babe had to have them dilated). He said her eyes look okay and that this isn't uncommon with viral illnesses, he did however update her glasses prescription (due to a stigmatism it had changed). We just got home a bit ago and it will be a little tough waiting this thing out. We will have to bring her back to the hospital if it starts to decline rapidly, so please pray that she heals quickly! The doctor said best case scenario it would probably be at least another week of desatting significantly when she walks. Right now she has a pretty nasty sounding cough that's making us nervous and this virus can lead to pneumonia and some other things like that so please pray specifically against additional infection!
Also for those who have followed Ella's Journey for several years may remember that we have been trying for years to figure out some of her low oxygen issues. We've seen multiple doctors and her case has been seen by multiple hospitals but ultimately we've had no answers. After visiting with another doctor we had some possible confirmations for what Jon and I had been thinking might be the root cause. Well, during this hospital stay the attending cardiologist on the floor was a specialist in this type of problem and he confirmed that while we can't officially diagnose her while she's sick (because her desatting/elevated heart rate are definitely more prominent right now) he thinks we are finally on the right track to figuring some of this out. We are going to explore this more next month with her cardiologist to hopefully get more answers. We would be so grateful for your prayers over this process as well! Testing is complicated and there aren't a lot of clear answers.
Thanks for always praying for and loving our little family! It means so much to us!
Monday, October 14, 2019
Friday, August 9, 2019
A Golden Birthday
Our sweet Sunshine girl is turning 9 on the 9th. And just like that another year has FLOWN by! I feel like the years keep getting shorter and shorter. What a crazy ride it has been the last 9 years. The blessing of Ella's life has reached places in my soul that I didn't even know existed. So many miracles have taken place, so many challenges and painful paths we've had to walk, but our sweet Ella is worth it all. SO SO SO worth it all. You all have been here too, reading along her journey, praying faithfully, celebrating the milestones, and grieving the setbacks. I can't ever thank you all enough for always being a place where I could bring my thoughts and fears and share the prayer requests and know that there were hundreds even thousands of people praying all over the world for our miracle girl. Those early days leading up to her birth and the months and years that followed were filled with so much fear. So many unknowns. 9 surgeries. a few ER visits. Tons of doctor appointments, medications, and tests. We had set backs and feeding hurdles, mystery symptoms and close calls. But through it all our Sunshine was so brave, always smiling, always a fighter. I tell her all the time, "Ella you have Brains, Beauty, and Bravery"! She has faced a lot and has so much still to face. We continue to hold out hope that the scientific advancements will give us more time with our girl, and until then we continue to treasure every day we have with her!
On to some of the memories we made this year with our girl.
Ella Girl, you conquered 3rd grade even though you don't really like school (besides science), it seems to come pretty easy to you because you are super smart. You got to visit the Aquarium and have a new found love of sea creatures (specifically great white sharks). You got to go sailing and whale watching. You had mommy dates and daddy dates (one on one time is your favorite). You were diagnosed with Autism Spectrum Disorder (but you already knew you had a "special brain" and you asked us to find out what it was called). You started therapy and you love it. You went to a pumpkin patch and road your first carnival rides (you were so brave and so was Mommy!). You've had 2 more good cardio check ups (we never take those for granted). You got to participate in children's choir at church and join the Sunday school kids.You made your first gingerbread house (it's harder than it looks). You got your new stuffed penguin friend and named him "T-Bone" (you REALLY love him). You visited your cousins (and Aunts, Uncles, Nana and Grandaddy) and one of your best friends in Oklahoma. Mommy and Daddy cut your hair short and you said it "suits you" (we agree). You lost your 10th tooth. Your best friend moved to Florida and came back for a surprise visit. You officially graduated out of any type of booster seat (you said you've been waiting for this moment your whole life). You met a new heart friend who shares your special brain. You have your first official "chore chart" and you are taking on so many new responsibilities. Your cousins came to visit you (and Aunts, Uncles, Nana and Grandaddy). You auditioned for a TV show. We explored Crystal cove together. You were referred to a pulmonologist for some lung testing and we think you have some form of autonomic dysfunction (like your momma). You got super sick with Strep throat that turned into scarlet fever and then before you fully recovered from that you came down with fifths disease (you were sick for 12 weeks and it was scary for a while). You watched the 4th of July parade (our town has a huge one) and you watched the fireworks over the ocean. We went on our first family camping trip and we all had so much fun. You were able to reach a new level of elevation (7,112 ft) and you held your oxygen above 85 as long as you were at rest. You also got to visit Coronado island in San Diego. You are sick again with a cold right now and it's so sad to see you sick on your birthday, but girl we are still going to celebrate YOU! You have been sick more the last few years than all your other years combined but we know it's because you are out having fun and living your life! It's hard on us all when you get sick because it is a reminder to our hearts just how fragile your life is and it takes your little body longer to fight than most but you are always a trooper. We are constantly amazed at how sweet you are when you are in pain. So brave. This time of year, around your birthday, is always filled with reflection. There are thankful sighs, painful tears, and desperate prayers. There are memories and parts of our story that fill my mind that I don't think about as much during the other parts of the year. This time of year is a beautiful reminder of what a miracle your life is. We are completely in awe that we get to be your parents and are so thankful for our unbelievable and un-promised 9 years together. It hasn't been easy baby girl, but God has and will continue to be our strength when we feel scared or weak. He has held you since before you were born and He is holding you still. He and He alone is the keeper of your days, I pray we fill your time on earth with huge amounts of love and memories you can hold close to your heart!
Happy 9th Birthday Sunshine We Love You SOOO Much!
On to some of the memories we made this year with our girl.
Ella Girl, you conquered 3rd grade even though you don't really like school (besides science), it seems to come pretty easy to you because you are super smart. You got to visit the Aquarium and have a new found love of sea creatures (specifically great white sharks). You got to go sailing and whale watching. You had mommy dates and daddy dates (one on one time is your favorite). You were diagnosed with Autism Spectrum Disorder (but you already knew you had a "special brain" and you asked us to find out what it was called). You started therapy and you love it. You went to a pumpkin patch and road your first carnival rides (you were so brave and so was Mommy!). You've had 2 more good cardio check ups (we never take those for granted). You got to participate in children's choir at church and join the Sunday school kids.You made your first gingerbread house (it's harder than it looks). You got your new stuffed penguin friend and named him "T-Bone" (you REALLY love him). You visited your cousins (and Aunts, Uncles, Nana and Grandaddy) and one of your best friends in Oklahoma. Mommy and Daddy cut your hair short and you said it "suits you" (we agree). You lost your 10th tooth. Your best friend moved to Florida and came back for a surprise visit. You officially graduated out of any type of booster seat (you said you've been waiting for this moment your whole life). You met a new heart friend who shares your special brain. You have your first official "chore chart" and you are taking on so many new responsibilities. Your cousins came to visit you (and Aunts, Uncles, Nana and Grandaddy). You auditioned for a TV show. We explored Crystal cove together. You were referred to a pulmonologist for some lung testing and we think you have some form of autonomic dysfunction (like your momma). You got super sick with Strep throat that turned into scarlet fever and then before you fully recovered from that you came down with fifths disease (you were sick for 12 weeks and it was scary for a while). You watched the 4th of July parade (our town has a huge one) and you watched the fireworks over the ocean. We went on our first family camping trip and we all had so much fun. You were able to reach a new level of elevation (7,112 ft) and you held your oxygen above 85 as long as you were at rest. You also got to visit Coronado island in San Diego. You are sick again with a cold right now and it's so sad to see you sick on your birthday, but girl we are still going to celebrate YOU! You have been sick more the last few years than all your other years combined but we know it's because you are out having fun and living your life! It's hard on us all when you get sick because it is a reminder to our hearts just how fragile your life is and it takes your little body longer to fight than most but you are always a trooper. We are constantly amazed at how sweet you are when you are in pain. So brave. This time of year, around your birthday, is always filled with reflection. There are thankful sighs, painful tears, and desperate prayers. There are memories and parts of our story that fill my mind that I don't think about as much during the other parts of the year. This time of year is a beautiful reminder of what a miracle your life is. We are completely in awe that we get to be your parents and are so thankful for our unbelievable and un-promised 9 years together. It hasn't been easy baby girl, but God has and will continue to be our strength when we feel scared or weak. He has held you since before you were born and He is holding you still. He and He alone is the keeper of your days, I pray we fill your time on earth with huge amounts of love and memories you can hold close to your heart!
Happy 9th Birthday Sunshine We Love You SOOO Much!
Thursday, August 9, 2018
Eight.
Wow! Our sweet sunshine is 8 years old! What a wonderful life to celebrate! For so long I struggled to see Ella's future. I was so focused on the present and so afraid of the future. But what I've been learning these last several months is that I can fully appreciate and cherish the present and still hope for the future. I guess I thought somehow that if I didn't plan on getting to keep her forever than it would somehow hurt less when we lost her. This is false. Planning or expecting something bad to happen doesn't lessen the blow, it only puts a bigger shadow over the present. So yes, Ella's terminally ill, yes, that is terrifying and I think about it all the time, but I'm not so focused on it that I'm preparing for it anymore. I'm done preparing my heart for the pains of the future. Instead I'm going to live this life along side of her as fully as I possibly can. I'm not going to feel guilty for having fun and living as if we will have a long, full life together. I want to always carry the amazing lessons this journey has taught us, things like, not taking the little things for granted, things like, knowing what's really important in life, things like living now and not waiting to live until later, things like, empathy for the hurting, things like, deep trust and faith in God that only deep difficulty can bring. But I also want to dump the baggage that this journey brings, things like, living in fear, things like, feeling sorry for myself and for my daughter that our lives are different, things like, thinking that my life should be put on hold, things like, trying to be perfect to save her... There is so much beauty and so much pain that walk parallel in the journey of parenting a child with severe health complications. Jon and I are just SO honored we have had the privilege of already having 8 years with our beautiful sweet sunshine girl! My goal this year is to love her and love God so fully that no mater what the future holds I can look back on this time filled with happy moments of LIFE with our sweet miracle girl!
Happy 8th Birthday to our Ella Dawn, your creativity and deep thinking are such special touches from the Father. You spread joy and laughter to everyone you meet, you are strong and brave and full of imagination! You are empathetic and understanding when others are in pain, you are outgoing and talkative! You dream big and want to be so many wonderful things! You love toys and mysteries! You like science experiments and you are becoming a book writing expert! Your drawing skills are amazing to me, and your eye for detail is impressive! You love your special heart, and you seek to know, love, and understand Jesus better everyday! Your communications skills will serve you well in your life! You ask lots of questions and you love silly stories! You love lemonade and individual, undivided, attention, you have conquered many fears these last several months and mommy and daddy are so proud of you! We love you with all of our hearts and hope this year is your best year yet!
Happy 8th Birthday to our Ella Dawn, your creativity and deep thinking are such special touches from the Father. You spread joy and laughter to everyone you meet, you are strong and brave and full of imagination! You are empathetic and understanding when others are in pain, you are outgoing and talkative! You dream big and want to be so many wonderful things! You love toys and mysteries! You like science experiments and you are becoming a book writing expert! Your drawing skills are amazing to me, and your eye for detail is impressive! You love your special heart, and you seek to know, love, and understand Jesus better everyday! Your communications skills will serve you well in your life! You ask lots of questions and you love silly stories! You love lemonade and individual, undivided, attention, you have conquered many fears these last several months and mommy and daddy are so proud of you! We love you with all of our hearts and hope this year is your best year yet!
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