I have had many reach out to me wondering if Laynee has made any progress since returning home from our week long clinic to Nationwide Children's Hospital last month. I cannot tell you how much it means to me that so many of you have thought about her & prayed for her.
However, unfortunately, we were only traveling backwards in our trial of the medicine regimen. My little bear was getting frustrated & mom was a stressed mess as there seemed to be not one single step forward no matter how hard we tried. We worked daily with our Nurse Practitioner from the clinic making daily adjustments, however, we knew when the time came to call it quits as this was not going to work for Laynee's body.
So, after another team meeting there of the clinic staff, I received a phone call with the next step. I knew already in my heart for weeks that the Malone procedure was probably in her future. But, I was shocked over the phone of the additional step they wanted to make. As much as I really did not want to send my baby back in for another surgery, I knew we were just at dead ends & there really was not a choice.
Laynee's colon is extra long & extra curvy; especially in that tiny body of hers. Some people can live with a colon like hers with no issues; others cannot. The medicine regimen told her doctors just how much of an issue her colon was possibly causing. So, even though it felt like we just went backwards over the past few weeks, it did give us some needed information in which I have to be thankful for.
The last week of July, we will head back to Nationwide Children's Hospital for surgery. They will be removing part of her colon & putting in a Malone. For the Malone, they will connect her appendix to her abdominal wall & then create a valve mechanism through her belly button. This tube is how we will be able to give her daily medicine & in time, Laynee will eventually be able to do this all on her own in her own privacy! She will be in the hospital for at least 6 days after her surgery & we will need to stay a few more days in Ohio for daily checks before they will allow us to return back home.
This is the next step for Laynee. This does not "fix" her. There is still thought that her sacral nerves do not send messages to her brain either. This is basically a step that will make her lifestyle somewhat easier, definitely less private for her. Her medicine regimen will take about an hour out of her day but this will allow her a life with a lot less fear as she travels through her days & will help her confidence which at times has been a bit of a struggle.
I still have just under 30 days left before this occurs & I cannot deny that when I stop & think about it, I cry. I cry because surgery is scary & they are doing some pretty crazy & invasive stuff in that tiny stomach of hers. I cry because I hate that she is going through another surgery. I cry because it has been such a long journey for the past almost 4 years of so many trial & error stages with non-stop dead ends with no answers & no progress. We have tried every road, taken every turn we were given or could find; I've spent hours researching & tracking every part of her day. So I pray now this is going to help her live a better lifestyle. I prayed for years for her to "be fixed" and although that is not a true option, I feel we have been led in the right timing to the right doctors with a chance for an easier lifestyle for her. So, I cry because maybe, just maybe, her road will get a little easier & her daily frustrations & struggles will diminish.
Either way, she comments about this being the way God made her body & although she doesn't understand or like it she has to accept it, but I will tell you that maybe her body struggles functioning correctly, but He certainly blessed her with an amazing athletic talent.
Until Next Time~
*krisha*
However, unfortunately, we were only traveling backwards in our trial of the medicine regimen. My little bear was getting frustrated & mom was a stressed mess as there seemed to be not one single step forward no matter how hard we tried. We worked daily with our Nurse Practitioner from the clinic making daily adjustments, however, we knew when the time came to call it quits as this was not going to work for Laynee's body.
So, after another team meeting there of the clinic staff, I received a phone call with the next step. I knew already in my heart for weeks that the Malone procedure was probably in her future. But, I was shocked over the phone of the additional step they wanted to make. As much as I really did not want to send my baby back in for another surgery, I knew we were just at dead ends & there really was not a choice.
Laynee's colon is extra long & extra curvy; especially in that tiny body of hers. Some people can live with a colon like hers with no issues; others cannot. The medicine regimen told her doctors just how much of an issue her colon was possibly causing. So, even though it felt like we just went backwards over the past few weeks, it did give us some needed information in which I have to be thankful for.
The last week of July, we will head back to Nationwide Children's Hospital for surgery. They will be removing part of her colon & putting in a Malone. For the Malone, they will connect her appendix to her abdominal wall & then create a valve mechanism through her belly button. This tube is how we will be able to give her daily medicine & in time, Laynee will eventually be able to do this all on her own in her own privacy! She will be in the hospital for at least 6 days after her surgery & we will need to stay a few more days in Ohio for daily checks before they will allow us to return back home.
This is the next step for Laynee. This does not "fix" her. There is still thought that her sacral nerves do not send messages to her brain either. This is basically a step that will make her lifestyle somewhat easier, definitely less private for her. Her medicine regimen will take about an hour out of her day but this will allow her a life with a lot less fear as she travels through her days & will help her confidence which at times has been a bit of a struggle.
I still have just under 30 days left before this occurs & I cannot deny that when I stop & think about it, I cry. I cry because surgery is scary & they are doing some pretty crazy & invasive stuff in that tiny stomach of hers. I cry because I hate that she is going through another surgery. I cry because it has been such a long journey for the past almost 4 years of so many trial & error stages with non-stop dead ends with no answers & no progress. We have tried every road, taken every turn we were given or could find; I've spent hours researching & tracking every part of her day. So I pray now this is going to help her live a better lifestyle. I prayed for years for her to "be fixed" and although that is not a true option, I feel we have been led in the right timing to the right doctors with a chance for an easier lifestyle for her. So, I cry because maybe, just maybe, her road will get a little easier & her daily frustrations & struggles will diminish.
Either way, she comments about this being the way God made her body & although she doesn't understand or like it she has to accept it, but I will tell you that maybe her body struggles functioning correctly, but He certainly blessed her with an amazing athletic talent.
Until Next Time~
*krisha*
No comments:
Post a Comment