Monday, April 8, 2013

for chase, part ix + being lost and found

it was a good day for chase today, i am loving that. it looks like he will get to head back home to minnesota soon which is so great. i can only imagine how excited all of our family and their friends are going to be to have him back and close to them. in the meantime, they did the mri today and the results will be known tomorrow. keep all of the good thoughts and prayers coming everyone for a great day tomorrow and good mri results. go chase go, we are all rooting for you. carry on, captain, carry on - fight, fight, fight!

+++ let it shine - "As we await the sunrise to share its rays of warmth here in Orlando, Mom and I anticipate a ray of hope to shine on us today as well. We have a good pep-talk with each other and are ready to focus on the positive energy. Chaser had an uneventful evening. Although restless all night, he did get some rest. His breathing continues to take a lot of effort, with the nurses suctioning out the flem and mucus that continue to collect in the back of his throat a couple times an hour. He has been relentlessly continuing to lift his arms with his his fingers clenched which may be a sign of his frustration and struggle, or may be a sign of the brain damage that he has suffered. The previous thought was these were due to Neuro-storms, but it sounds like the staff has all but ruled that out. His temperature remains fairly constant at 98-99. His heart remained a little high all night, showing that he is not relaxed and definitely experiencing discomfort. He is holding down his feed well and we are up to 30 mil/hr with a goal to reach of 50. So far he is keeping it down, and not coughing any of it. This is important, because he this down so he can get some much needed energy! We have had a few brief conversations about bringing Chase back to MN soon. I am meeting with the social worker today to work on the logistics and try and get a game plan. We are definitely looking forward to bringing Chase and his fight home to the state of hockey! Mom and I can't stress enough how incredible the staff has been here. With 3 children, all born via C-Section, we have spent plenty of time in the hospital, but never have we experienced a compassionate, personable, profession, and put simply....human staff as here at The Arnold Palmer Children's. Thank you all again for you love and support. We look forward to what this day is going to bring, and to watch more of Gods miraculous work in progress. To all you, Have a GREAT DAY!"

+++ :) - "Man, when i asked for a ray of light to come thru, I should have put sunscreen on! Chase has had a good day. He is sitting in moms lap as I type resting soundly, with his heart beat, oxygen level and breathing excellent. Mom is so relaxed, she is taking a rester. Chase was experiencing more of the Neuro Storms earlier this morning -Which are basically massive amounts of undirect brain waves all at once. They trigger his muscles to tighten up, fists to clench, blood rate and pressure to rise. These are clear indicators of damage to the brain, or at very least, it is missfiring. He has been put on some medicine to control the area of the brain that triggers this, and it has been very effective. This medicine does not sedate him, or have any effect on his breathing, it relaxes his muscles, allowing him to rest peacefully. His feed intake is up to 35 ml an hour, getting us closer to that goal of 50ml. He is holding it down and getting the nurishment he needs. This is great! It has been since Friday evening since he has had his last bowel movement - which is not a major concern, because he has only been on feed since early yesterday afternoon. We are putting him on medicine to help that process along. The meeting went well with the social worker today, and we are now going to let the hospital and insurance company discuss the logistics in getting Chaser home- closer to Sioux Country! Once we get him home, we can re-energize and takle this fight head on! We met with the doctor this morning to discuss his current condition and his future care possibilities. They feel he is stable and would be able to make a flight home. The MRI is set for tomorrow morning, and the neurolgy department figured we would meet late afternoon to discuss the results. We continue to feel strong, and know that God is with us. Whatever his plan is, we are here, and we are on board!"

+++ a picture is worth a thousand words - "As the bright sun that lit up our day makes its way to the other side of the world, the warmth and glow that it gave still remains. Chaser's day has continued the way it started....good! He managed to snuggle up in Gramma Judy's lap for almost 3hrs, and he got to hang with dad for 45 mins as well. Chase managed to open his eyes for some time today. It was exciting to see his big browns again, if even for a short time. They have been shut for almost 2 days. We have removed his plastic tongue guard, so we are getting to see his little face again as it should be. We have reached our 50ml/hr goal for the IV feed. So the nourishment is getting to him ready for action. Chase managed to squeeze out a yawn for us this evening!! I am not sure what that means neurologically speaking, but it is the first time we have seen him do it since the accident, so we are pumped. I took a little break while typing this due to a bunch of calls, paperwork, and other distractions....I have just found out we are doing the MRI right now. Please pray for postive results- this test will show the physical damage to the brain, and I have to be honest, I am very anxious- still believing....but anxious. It will take an hour to an hour thirty minutes and our Warrior will be back in the room. Fire up those Neurons Chaser- lets show everyone how tuff you are, and have a picture that proves it!"

i really identified with the "on being lost and found" post by ali edwards today. not for all of the same reasons that she is personally feeling. but the last couple of months have obviously been a big transition for me, and i think that i have been feeling a little bit lost and a little bit found at the same time.

a little lost because my routines have all been changed somehow. a little lost because i feel like time is moving at the speed of light and all i want it to do is slow down. a little lost because i can't seem to get myself as organized as i used to be and that drives me nuts. a little lost because i just can't get caught up on life and i hate that. a little lost because i can't eat the foods that i really love. a little lost because i feel like i am constantly having to explore new foods to eat. a little lost because i can't quite get settled. a little lost because i seem to cry on a daily basis. a little lost because i have scanxiety (three weeks from today, ugh).

a little found because i am eating healthier than ever. a little found because i am giving my immune system the best chance it has to fight cancer. a little found because i am spending more time with family and friends. a little found because i am loving my new routines. a little found because i have found my way back to documenting our lives through pictures. a little found because i know that at the end of the day, not being as organized or caught up is ok - it really is ok (that is the little voice in my head that keeps telling myself that - over and over - over and over). a little found because i am enjoying every second of every day, even the tough moments, because at least they are moments i am living through. a little found because i am so thankful for every moment i am given. a little found because i know that i am constantly surrounded by the love of family and friends.

a little lost, a little found.

the perfect balance.

i was getting a ton of spam on the blog and it was super frustrating. the only way that i knew how to stop it was to require a code word to be entered when you leave a comment on the blog (it will prompt you with the code word when you leave a comment, you just have to type the code word in that you see). so when you want to leave a comment, it will require one more step for you before the comment is posted. sorry about that - but it will save me about 30 spam comments a day. which translates to 30 less daily emails with spam for me. a little less spam makes me feel a little less lost;) xo

1 comment:

  1. Just to let you know that little extra step is totally worth it for you Alli. :)
    Our prayers for you won't stop and we are now praying for Chase as well. I just know the boss is working it.....
    I'm in awe of how many people you inspire to pray through opening up your generous heart and sharing what you feel with such honesty . What a gift you have. xoxo