I love this picture... Cadence wanted to be a butterfly for Halloween and Finn had to follow suit but his poor wings have lost all their strength. Silly but it reminds me of what mitochondrial disease has done to his body.
PURE JOY
Join us on our journey on our daily fight for Finn. This blog is going to be dedicated to keep people updated on what is going on with Finn medically, the ups and downs, ins and outs of his precious life and our life surrounding it.
Wednesday, October 26, 2011
Fall is upon us! This is my favorite season, cool days, drier air and beauty all around. Fall also brings with it the imminent cold and flu season. Sweetness has already had bronchitis but after two antibiotics and a week of nebulizer treatments he barely has a cough. We have had nursing here everyday and today was the first day since she started that Finn has actually been Sweetness and not Angry Finn. It breaks my heart to realize how bad he must feel most days after we have days like today. We hit up the Endocrinologist this past week. It was a bittersweet appointment. Finn's pancreas is failing him. Being on continuous feeds is wearing it out and by the end of the day it is barely working. BUT without the continuous feeds his blood sugar plummets. His "diabetes levels" A1c's are still right below normal so that is fantastic but we are looking forward to a time where he can no longer control his sugars on his own. So, we wait, thankful it isn't as bad as we thought (blood sugars have been in the high 300s) and sad that something else is being affected by this damn disease.
Thursday, October 13, 2011
Things could not have gone better on Tuesday. Anesthesia was very prepared for my sweet boy and things went as planned and better!! His adenoids already had 2 more large abscesses on them so the doctor cultured them just to make sure we were covering them with the Omnicef that we are giving him. Cultures come back tomorrow. We were able to come home the same day and other than pain and grumpiness Finn is rebounding nicely! I came home to find that Cadence and Liam were sick with fevers and Liam has a nasty cough. Finnster hasn't caught it yet so we are praying that he doesn't because that would land us back in the hospital.
This Saturday is the 2nd Energy for Life Walkathon!! This is something that I am fully invested in, I like to call my involvement my new life passion. The UMDF is an amazing organization that is dedicated to finding a cure for Mitochondrial disease. I invite you to join us Saturday morning at 9am at Freedom park as we walk for Finn!! http://www.energyforlifewalk.org/c.aiILIZNMKkK0F/b.6700253/k.8E5D/Join_a_Team/siteapps/teampage/ShowPage.aspx?c=aiILIZNMKkK0F&b=6700253&sid=ktJ1IcOPIeLUIbOKKoH
This Saturday is the 2nd Energy for Life Walkathon!! This is something that I am fully invested in, I like to call my involvement my new life passion. The UMDF is an amazing organization that is dedicated to finding a cure for Mitochondrial disease. I invite you to join us Saturday morning at 9am at Freedom park as we walk for Finn!! http://www.energyforlifewalk.org/c.aiILIZNMKkK0F/b.6700253/k.8E5D/Join_a_Team/siteapps/teampage/ShowPage.aspx?c=aiILIZNMKkK0F&b=6700253&sid=ktJ1IcOPIeLUIbOKKoH
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| and the Ipad saves the day again!! |
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| Amazed with the gloves after some good medication! |
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| Post surgery daze |
Monday, October 10, 2011
Tomorrow's the day...
Tomorrow's the day. Surgery is a big deal for any child/parent and we are no exception. I want to share a little of why surgery is a big deal for our sweetness.
Finn is the first case of the day tomorrow morning which means for us a 5 am arrival time. There are a lot of reasons why it is so important that Finn go first tomorrow.
Fasting is something that Finn cannot do, he is fed through his gtube 24/7 because even a few hours without feeding cause his body to start to go into acidosis and that causes ALOT of trouble (think marathon runner at the end of a race) and for surgery they want him to have nothing in his belly so we get IV fluids of sugar before hand to head that off.
Finn has a reaction to anesthesia called Malignant Hyperthermia (MH). This is a condition where his body temperature rapidly rises after recieving general anesthesia and severe muscle cramping. Finn gets monitored very closely after any procedure and has to have all of the "gas lines" completely cleared before he gets any sedation. (in anesthesiologist language PAIN IN THE ASS if you aren't the first kid of the day)
Stress in general is not good for our sweet boy that means pain, heat, cold and on and on and on. His sweet body cannot handle it, so of course surgery and removal of things makes for a sticky situation. We do our best to avoid all of this but reality is stress is apart of life, it happens. All we can do is prepare his body and be vigilant to react when he starts getting into trouble.
The hardest part of all of this is that while most of the anesthesiologists know about mitochondrial disease the don't KNOW mitochondrial disease. I am Finn's mommy not his doctor but there are a lot of times that I feel like I am educating the people who have my son's life in there hands and that scares the shit out of me. This is why we walk, why I raise money for the UMDF, why spreading awareness is SO important to me. I want a doctor here in Charlotte that KNOWS this disease, I don't want to have to have a doctor hundreds of miles away caring for my baby.
So tomorrow please pray for us, for our sweet boy, for the doctors AND for a cure.
Finn is the first case of the day tomorrow morning which means for us a 5 am arrival time. There are a lot of reasons why it is so important that Finn go first tomorrow.
Fasting is something that Finn cannot do, he is fed through his gtube 24/7 because even a few hours without feeding cause his body to start to go into acidosis and that causes ALOT of trouble (think marathon runner at the end of a race) and for surgery they want him to have nothing in his belly so we get IV fluids of sugar before hand to head that off.
Finn has a reaction to anesthesia called Malignant Hyperthermia (MH). This is a condition where his body temperature rapidly rises after recieving general anesthesia and severe muscle cramping. Finn gets monitored very closely after any procedure and has to have all of the "gas lines" completely cleared before he gets any sedation. (in anesthesiologist language PAIN IN THE ASS if you aren't the first kid of the day)
Stress in general is not good for our sweet boy that means pain, heat, cold and on and on and on. His sweet body cannot handle it, so of course surgery and removal of things makes for a sticky situation. We do our best to avoid all of this but reality is stress is apart of life, it happens. All we can do is prepare his body and be vigilant to react when he starts getting into trouble.
The hardest part of all of this is that while most of the anesthesiologists know about mitochondrial disease the don't KNOW mitochondrial disease. I am Finn's mommy not his doctor but there are a lot of times that I feel like I am educating the people who have my son's life in there hands and that scares the shit out of me. This is why we walk, why I raise money for the UMDF, why spreading awareness is SO important to me. I want a doctor here in Charlotte that KNOWS this disease, I don't want to have to have a doctor hundreds of miles away caring for my baby.
So tomorrow please pray for us, for our sweet boy, for the doctors AND for a cure.
Monday, October 3, 2011
I know it has been awhile...
It has been so long since I have posted and so much has gone on I have no idea where to start!! I want to start blogging and sharing the good along with the hard times and right now the good is overflowing! This winter we were able to stay out of the hospital due to some realizations about Finn's non existant immune system and his need for antibiotic coverage, so he stayed on Omnicef all winter and was started on pulmacort and we kept him completely away from any potential infects. We have found an amazing CAP worker (a NURSE!) who has been such a blessing. We have needed help with Finn for a while now and Essence is Gods answer to our prayers! She fits right in and the kids love her!!
Finn has become a big brother since I last posted Liam Matthew joined our family and has become what I have deemed the beginning of a redemptive period in our lives, he has brought some beautiful times into our family. God has really blessed us! One of the sweetest things is bathing all three of them at once and watching Cadence and Finn wash Liam and love on him.
We made some of our yearly check up appointments for Finn these past two weeks to prepare for surgery. We headed to the ENT because Finn has lost all of the hearing in his left ear, after examing Finn and retesting him the doctor stated that he thinks Finn needs his adenoids and tonsils out as well as permanent ear tubes because he has absecess on his adenoids he needs those out because they are 3 times normal size (great thing to tell an anxious mom by the way!)
Cardiology was a breeze! Finn's dyautonomia is changing from the point of he isn't always symptomatic when his blood pressure is to high or to low, his blood sugars have started to be ALL over the place but without symptoms. And his heart looked AMAZING!! (Can I put a plug in her for the great Dr Greene!!)
Neurology was not so encouraging. Finn has been having some vision changes but his eye exam was okay. Also he has been complaining of his head hurting, Dayal (or a-hole as Finn calls her) thinks that they are migraines and now we are faced with what to do with all of the options.
There are some days where aside from Finn having nursing that we forget that there is anything wrong with him and then WHAM, reality smacks us in the face!
Finn with be having surgery on the 11th of October and we really really covet your prayers for him. Every time he has to be sedated or under go stress the risk of something happening to my sweetness increases. I am so anxious about surgery about sedation but I have full confidence in these doctors.
This week Andrew got a new job!!! His company sent he and I up to Chicago for training and it has been the best week that we have had alone in a long time!
The Energy for life walkathon is in 2 weeks and if you haven't joined our team we would LOVE to have you join us! I will post a link! http://www.energyforlifewalk.org/c.aiILIZNMKkK0F/b.6700253/k.8E5D/Join_a_Team/siteapps/teampage/ShowPage.aspx?c=aiILIZNMKkK0F&b=6700253&sid=ktJ1IcOPIeLUIbOKKoH
Will continue to update as we continue on this amazing journey!!
Finn has become a big brother since I last posted Liam Matthew joined our family and has become what I have deemed the beginning of a redemptive period in our lives, he has brought some beautiful times into our family. God has really blessed us! One of the sweetest things is bathing all three of them at once and watching Cadence and Finn wash Liam and love on him.
We made some of our yearly check up appointments for Finn these past two weeks to prepare for surgery. We headed to the ENT because Finn has lost all of the hearing in his left ear, after examing Finn and retesting him the doctor stated that he thinks Finn needs his adenoids and tonsils out as well as permanent ear tubes because he has absecess on his adenoids he needs those out because they are 3 times normal size (great thing to tell an anxious mom by the way!)
Cardiology was a breeze! Finn's dyautonomia is changing from the point of he isn't always symptomatic when his blood pressure is to high or to low, his blood sugars have started to be ALL over the place but without symptoms. And his heart looked AMAZING!! (Can I put a plug in her for the great Dr Greene!!)
Neurology was not so encouraging. Finn has been having some vision changes but his eye exam was okay. Also he has been complaining of his head hurting, Dayal (or a-hole as Finn calls her) thinks that they are migraines and now we are faced with what to do with all of the options.
There are some days where aside from Finn having nursing that we forget that there is anything wrong with him and then WHAM, reality smacks us in the face!
Finn with be having surgery on the 11th of October and we really really covet your prayers for him. Every time he has to be sedated or under go stress the risk of something happening to my sweetness increases. I am so anxious about surgery about sedation but I have full confidence in these doctors.
This week Andrew got a new job!!! His company sent he and I up to Chicago for training and it has been the best week that we have had alone in a long time!
The Energy for life walkathon is in 2 weeks and if you haven't joined our team we would LOVE to have you join us! I will post a link! http://www.energyforlifewalk.org/c.aiILIZNMKkK0F/b.6700253/k.8E5D/Join_a_Team/siteapps/teampage/ShowPage.aspx?c=aiILIZNMKkK0F&b=6700253&sid=ktJ1IcOPIeLUIbOKKoH
Will continue to update as we continue on this amazing journey!!
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