Bodie has had a great couple of days, so tonight's update doesn't have as much to do with him as it does with everyone else in our lives. A few prayer requests tonight:
My Mom Nancy: I posted a while back that she had a breast cancer reocurrence, but that the surgeon was able to do a lumpectomy rather than a mastectomy. They thought the surgery was successful, but they found out a week or so later that they had not gotten clean margins on the tumors, so would have to go back in. Because she has now had breast cancer in both breasts and there is such a high risk of getting it again, my mom is going in tomorrow for a bilateral mastectomy. Please pray for wisdom for the surgeons while performing the surgery (a 5 hour procedure) and both emotional and physical strength for my mom following the procedure.
Dusk: Dusk has had reocurring ear pain and related dizziness for the past 6 months or so. He finally got his doctor to pay attention enough to refer him to specialist, who he saw today. The specialist ordered an MRI for tomorrow morning. Please pray that the MRI will provide conclusive results and that the outcome is something simple that can be corrected (like an electrolyte imbalance) and not something much more grave (like a tumor).
Wyatt: I've been asking for prayer for Wyatt for some time. He's one of Bodie's heart buddies and had his Glenn in early July. He had numerous complications post surgery, but looked to be doing much better. Then, last week, he started desatting in the middle of the night for no apparent reason. Since they couldn't figure it out, they sent him to the cath lab yesterday morning. He had complications and once again, his parents were asked to decide whether to put him on ecmo or to let him go. His parents are continuing to fight on for sweet Wyatt and he is now back on ecmo. Please pray for his little body to fight strong and hard and for him to come off ecmo soon and be on the road to recovery. Please also pray for strength for his parents.
Jacob: Jacob is another of Bodie's heart buddies and he is going in for his Glenn next week. His cath is scheduled for next Tuesday and the surgery is scheduled for Wednesday. He is already at the hospital (his surgeries are in Philadelphia at CHOP) and has a number of consultations and tests to be done between now and then. Please pray that all goes well (especially his pulmonology consult) and his surgery is a success. Pray that he has no complications and comes home quickly!
My Mom Nancy: I posted a while back that she had a breast cancer reocurrence, but that the surgeon was able to do a lumpectomy rather than a mastectomy. They thought the surgery was successful, but they found out a week or so later that they had not gotten clean margins on the tumors, so would have to go back in. Because she has now had breast cancer in both breasts and there is such a high risk of getting it again, my mom is going in tomorrow for a bilateral mastectomy. Please pray for wisdom for the surgeons while performing the surgery (a 5 hour procedure) and both emotional and physical strength for my mom following the procedure.
Dusk: Dusk has had reocurring ear pain and related dizziness for the past 6 months or so. He finally got his doctor to pay attention enough to refer him to specialist, who he saw today. The specialist ordered an MRI for tomorrow morning. Please pray that the MRI will provide conclusive results and that the outcome is something simple that can be corrected (like an electrolyte imbalance) and not something much more grave (like a tumor).
Wyatt: I've been asking for prayer for Wyatt for some time. He's one of Bodie's heart buddies and had his Glenn in early July. He had numerous complications post surgery, but looked to be doing much better. Then, last week, he started desatting in the middle of the night for no apparent reason. Since they couldn't figure it out, they sent him to the cath lab yesterday morning. He had complications and once again, his parents were asked to decide whether to put him on ecmo or to let him go. His parents are continuing to fight on for sweet Wyatt and he is now back on ecmo. Please pray for his little body to fight strong and hard and for him to come off ecmo soon and be on the road to recovery. Please also pray for strength for his parents.
Jacob: Jacob is another of Bodie's heart buddies and he is going in for his Glenn next week. His cath is scheduled for next Tuesday and the surgery is scheduled for Wednesday. He is already at the hospital (his surgeries are in Philadelphia at CHOP) and has a number of consultations and tests to be done between now and then. Please pray that all goes well (especially his pulmonology consult) and his surgery is a success. Pray that he has no complications and comes home quickly!
And, prayer for Bodie, Dusk, Sierra and I as we adjust to life at home. Life is so unbelievably sweet at home with Bodie. He is such a good, happy baby - and Sierra is loving being a big sister and getting to help out with everything baby related. But it's so hard with the next surgery looming so freaking close on the horizon (and yet, not knowing just how close it may be). The doctors have said their goal is for Bodie to make it 1-2 months at home before the Glenn. And just since coming home, he's really thriving. He's grown almost a pound (and 2 teeth, along with another 1 or 2 about to burst through, but who's counting? Oh that's right, all of us in our household, especially poor Bodie...) But the second something happens (he throws up his meds, or he desats), I totally freak out and it's almost like I shut down and can't function. I totally obsess over whatever it is that I think is wrong. I think it's honestly probably a type of PTSD and probably pretty expected given what we've been through. (Other heart moms who read my blog, have any of you gone through this? Just curious.) At any rate, I could use prayer to just keep a grip on things and remember that God is STILL in control of everything and I don't have to be. And please pray that Bodie stays stable so that he can stay home for a bit. He's satting lower tonight and I know that as he starts to sat lower, the Glenn will be closer and closer in his future. We expected it to come quickly, but not quite this quickly. Pray that he stays stable and can stay home a bit longer.
Oh, and so that I'm not accused of being a total Debbie Downer, here's a few sweet pics of Bodie enjoying "life on the outside":
His very first time in a swing at the park (and clearly loving it) - and yes, that is drool in the second pic!
Mr. Serious
Enjoying Farmer's Market with sissy
Loving the library with mommy
After his baby dedication at church on Sunday
Oh Amy, praying in everything you have requested! Love you!
ReplyDeleteCindy
Amy - As a fellow heart mom I've definitely felt the same way! PTSD and all. I'm not sure how we could be expected to feel any differently. You are definitely NOT alone!!
ReplyDeleteJackie
Of course, your mom, Dusk, Wyatt, and Jacob are being lifted in prayer. Thank you for keeping me updated on them all.
ReplyDeleteSecond, ALL THE TIME! LJ didn't have near the complications as Bodie and still freak. Fevers, unexplained screaming, vomitting, is he sleeping too much?, is he breathing normall? ... I don't know any other way to live. I think we are warrented since we do know how fragile life really is and how something that is so simple for other kids can be life threatening for ours. Hang in there, you are a fantastic mom :)
Dearest Amy,
ReplyDeletePlease know that you are not alone in your feelings. I've recently found, just within the past three weeks, that there are still many emotions related to this experience that I will carry for the rest of my life. I think after the new-ness of having our babies home, comes the reality that life for them is and always will be a little different. And with that comes fear, anger, sadness, and a different type of respect for health and life than other parents have. For our children, wellness is not a given, it is something we have to work for.
This, and everything else that goes along with almost losing your child, certainly causes PTSD. For me, I knew I wasn't coping as well as I thought I was when things started falling apart at work. I've begun seeing a therapist and she is really helping me work through my feelings and is giving me coping strategies for when those "dark thoughts of fear" take over my life. While I know that you probably don't have the time to talk to someone now, know that it is worthwhile to make time to do it in the future. Zac and I are reaching the "pull ourselves back together" phase and are picking up the pieces of our lives now that things with Everett are somewhat settled. Don't forget to take time for and care of yourself, because you can't be there for Bodie if you aren't well too.
As always, I'm here if you need to talk. I am an open book about everything I've felt. I know it is in our nature to want to portray everything as positive and to give thanks for the blessings we've received, but there is a time and a place for other emotions too...because it has been a hard road and eventhough the outcome for both of us has been better than we could have hoped, the road to get there was paved with heartbreak and sadness.
I hope this doesn't bum you out more...but I was always afraid I was the only one feeling the things I did...and once I started talking about it, I realized I was never alone. I continue to hold you in prayer.
Miracles Happen,
Sara Bollinger
Lifting everyone up in prayer! Thank you for sharing the sunshine with the rain - truly, the pics are utter sunshine! :-)
ReplyDeleteSo happy to know your family is home under one roof. Sending much love and prayers your way,
~Jeannette, Mike, Nick & Sabrina
My Bodie, my Love: Thank you for the influence you have on my life. I LOVE you more than you know baby and I miss you all the way from overseas... praying for you daily...
ReplyDeleteMy sweet Amy, we will pray for all your requests... your mom is always in our prayers and we hope for some good news.
Sending you all our love. We miss you.
Loads of Love,
Nairi, Michael, Sawyer, Hunter and Faith
i love you my bodie and miss you. sending you loads of love from far away... kisses: nairi
ReplyDelete