Easton Murdock's Journal
Written Mar 1, 2014 11:16pmWell unfortunately Easton had a really bad night Thursday night & he couldn't keep his oxygen up. When I talked with his Drs in St. Louis they wanted him to be admitted. So we made the trip up Friday. Thank goodness Gus was able to come up with us. I had to hook Easton up to the ventilator in the car & add oxygen. It was a crazy car ride to say the least.
Once Easton was admitted they did a chest x ray, nasal swab, trach culture & lab work. The results came back as MSSA staph infection & RSV. Both are very serious & have caused issues with his airway & requiring additional oxygen & suctioning. He's been miserable. I was a bit surprised that his culture showed staph. Although his Drs explained that this is one of the many reasons having an open airway, meaning his trach. Makes him very susceptible to virus & infections. That's why we have to take extra precautions. Even being at school & public places during cold & flu season puts him at risk.
So in the meantime he's on oxygen, iv antibiotics & fluids. He's also getting treatments every 4 hours with a vest that shakes the secretions in his chest to prevent pneumonia. Through it all he's been very positive, always so brave! He didn't even cry getting his iv! He's basically grown up in a Hospital & always amazes me with his humor & knowledge of health care!! Told the nurse all his medications! Bittersweet at times that he should even have to know why he takes so many medications.
I find myself questioning at times why we were given this life, why my innocent child has had to suffer so much & why our families have experienced so much heart ache, stress, financial strain, and other issues that I won't get into! I've had to have talks & answer questions that no parent should have to have. But I will say that my faith has been tested daily for the last 4 years & has grown so much. I have a whole new respect for life! Yes, I'm sleep deprived, I can't honestly tell you the last time I've slept through the night. I've spent birthdays, holidays in the Hospital. I've missed first days of school, weddings, births, and vacations. But I can honestly say I would much rather life be like this than to not have Easton here with us. I will continue to sacrifice everything & fight for my son. A mother just knows what her child needs, weather it's a drink of water or a Hospital visit! It's an instinct that starts from the moment that child is inside you!
My life is far from normal & probably never will be, but it's who makes me who I am today... A bit cranky at times from sleep deprivation, but an appreciation for life & life with a child with cancer. Easton has been the best blessing in disguise... He's shown us all how to really live. No matter how bad of a day he's had or how difficult life can be. He's always smiling! He always finds the positive in every situation & although things get him frustrated that he can't do, he quickly smiles or finds the things he can do & does them with so much pride. He's had so Hospital admissions that I've lost count, yet tells me this is the best cafeteria food he's ever had!! Who just does that?! Most children would throw fits about being in the Hospital & rightfully so! Not my E, he amazes me daily & is truly a gift from God! Even though I will never understand why we were given this life, I'm so blessed to have an amazingly strong child of God & an army of love & support! God has blessed us in so many ways, it's hard to see sometimes but I feel His presence in times that only God can do.
Please continue to pray for Eastons healing. I need him asmuch as he needs me!
Written Feb 27, 2014 1:08am
Easton has come down with another virus. He's had trouble with his breathing & is requiring additional oxygen with his ventilator, needing suctioned more frequently & running a low grade fever. I took him to the Hospital here in town to get a trach culture so the results of that will tell us what type of virus it is. His Drs started him on some antibiotics & some pain meds. When he's fighting an infection it tends to bring on nerve pain. Even though he's completely miserable right now, he still doesn't complain! He's been so sweet & we've snuggled in bed & watched cartoons & he's had the royal treatment! ( Like fudge pops for breakfast!)
As long as he can maintain his oxygen levels, he can stay out of the Hospital. I hate seeing him so weak & this mama is a little sleep deprived, but its totally worth it, if it means getting him better.
We appreciate all the love & prayers that are said for Easton, and especially during times of illness. The common cold or virus just effects him different & can be life threatening if we don't stay on top of things. Every prayer means so much for his healing. I find myself so down at times especially when he's sick, I know it could be worse but it's so hard seeing him come so far, then being so weak. His little body has been through so much & I just wish I could make all the pain & suffering go away... This amazing child has taught me so much about life & what's really important. Yes, we all can get a little caught up with the daily stresses in life, but taking time to enjoy your family & the simple things & faith are what matter most!
Thank you in advance for prayers for Easton to get over this & for his overall health. I need him, as much as he needs me.
Written Dec 23, 2013 1:59amWe had to make an unexpected trip to St. Louis last week. Easton's nerve pain has really been bothering him lately. He's also had some increased tremors & headaches, along with facial pain & some balance issues. His neurologist & Neuro surgeon both wanted to see him. Once they examined him they decided that an emergency scan was needed. Obviously I was caught a little off guard because he just had a scan in October, but I was glad that they were taking precautions. My heart tends to sink just thinking about the day that I hear that news that this tumor is growing... I would be in denial if I thought that would never happen, but I also believe in the power of prayer & see how God has continued to guide us through this journey. With that being said I'm so relieved & happy that we got good news that his tumor has not grown!! Although his nerves surrounding his tumor are inflamed causing him this pain & the increased symptoms. I was also told that when he's sick or has a virus it can bring on these symptoms again. His body just doesn't signal appropriately and can cause additional symptoms when fighting an infection. He's still had some respiratory issues, fighting off this cold so he's back on some antibiotics, and they also increased his other meds for his nerve pain. Only time will tell what this tumor is going to do. So for now we watch & wait & manage the best way we know how.
Dr. Leonard, our Neuro surgeon who many of you have heard me talk about has decided to take a position at Nationwide Children's Hospital in Columbus, Ohio. This came as a huge shock to us when he told me. This man has saved my baby's life! I told him he can't leave! He got a nice little laugh from that!! He is so determined to find a cure that he's been doing research for awhile now, and this Hospital will bring new opportunities for him & for clinical trials. I can't imagine someone else taking over at this point with Easton's care. Yes, I have sent his records to other Hospitals & research like crazy but this man has been inside his brain & knows every detail. So the decision to follow him to Ohio just seems natural! Besides that's where my family lives! I think God is playing a role in all this!! I just feel like its all meant to be! We will still travel to St. Louis for other services, but for his Neuro/ Onc we will now travel to Ohio.
This journey can get so overwhelming at times, it is so very complicated & it changes daily.... But I know deep down as much as I might feel like things aren't fair or how we have to make adjustments on a daily basis depending on how Easton is feeling, I will take that every single day if it means having him with us. As bad as things can be, it could be so much worse. I am so grateful for this amazing child & his team of Doctors! We are also so very thankful for each & every prayer that is said... it makes such a huge impact on our life! Thank you for all the continued support.
We wish everyone a very Merry Christmas & and a healthy New Year!