The Power of Our Prayers

 Friends, in my shock over the turn of events in Brandon's surgery yesterday, I left out a few significant details...and I couldn't keep this to myself!

      As you know, Brandon's surgeon came out after the surgery to tell us how it went, and she had a look on her face that scared me to death. I thought she had really bad news, and I felt my heart stop. She came and sat down, and proceeded to tell us that she had begun the surgery on the upper part of Brandon's arm, she was going to do the graft. She said, "I'm sure you knew how upset I was about this, I was not happy. I didn't want him to have a graft, it would blow out the whole arm for any future use." Well, we did NOT know she was upset, she hid it very well. She said she made the first incision, and then...SHE STOPPED. She decided, AFTER already cutting into Bran's arm to begin the graft surgery, to stop and look ONE MORE TIME for a vein. That's right. She stopped after already beginning, to look again. Now remember, the ultrasound had shown that he had no vein big enough to use for a fistula/stint. When she delivered that news in our last appointment, she spent a few moments looking at his arms in the doctors office under the over-head lights there. She couldn't find anything either. But despite all that, in the operating room she decided to look one more time under the very bright lights. That's when she found a vein that was big enough. The vein is so deep in his arm that it will take a second surgery to move it up to the surface so it can be used for dialysis. How she saw it with nothing but her eyes and the bright lights...we do not know. When I asked her how in the world she spotted what the ultrasound had missed...she simply said, "I don't know." She was very apologetic about having made a small, shallow incision in Bran's arm that she didn't end up using. I assured her that IT WAS TOTALLY FINE.
      What really hit me last night while laying in bed was that this uber competent surgeon stopped herself AFTER she'd started a surgery for one last ditch effort to find an un-findable vein. And she found it.
      I always pray over Brandon before he goes to sleep with anesthesia. I suit up and go into the operating room with him until he's out. I put the sign of the cross on his forehead and bless him. I ask our Lord to pour out His wisdom and grace upon all the people caring for Brandon. I say, "Jesus, please be the hands and mind of the surgeon. You do this surgery, Lord."
I ask the Blessed Mother and Padre Pio to stay in the room praying over Brandon. I smooch him more than he'd normally let me... and then he usually falls asleep.
      And I know many, many of you were praying with us too. Matt and I looked at one another last night and we knew, we just knew that what had happened in that operating room was a miracle. And I just wanted to share the details with you all so that you know that we move mountains, we move surgeons, and WE MOVE VEINS...when we pray together. Thank you, a million times over, THANK YOU.
Please keep praying, because we KNOW that Brandon's healing is on it's way, in God's perfect time.

Vein of Gold

Moments after the surgeon came out of surgery I posted this:

Bran is out of surgery, snoring away. We have just received really good news. The surgeon just told us with a huge smile on her face that she did NOT do the graft, because she FOUND A VEIN!!!!!!!!!!! She did a stint, the ideal, much longer lasting and better working original option. Under the bright operating room lights she found a vein deep in the midsection of his arm...even the ultrasound had missed it! She was so joyful when she told us...I wanted to lay down on the floor and cry. If she'd done the graft, that would have shot that whole arm for life, in terms of ever having any vein use on it for anything. Matt and I are just...grateful, awed, happy...Hope filled. look what prayer can do!!!!!!!!!!!!!!!

Together, We Pray

💟Hi, family and friends. I wanted to give you an update and ask for prayers.💟
The external port that's used for dialysis and plasma pharesis treatments, on Brandon's chest, needs to come out. Because it outside the body and leaves a large opening into his jugular, it's very vulnerable to blood infection. The transplant surgeon said that it's been in almost a year, and that's the max she's ever seen it be in someone without major, life-threatening infection. It's been determined that Brandon is now a "permanent dialysis patient", and he needs safer access for it in the long term. Hearing that new description of him was very emotional, as you can imagine.
Brandon is very excited to get rid of his chest port. He needs to ask me to tape him up with plastic wrap and medical tape for showers, and he has to be super careful in there to not un-tape any of it. Having new access for dialysis will be under the skin, requiring a needle several times a week...but it will allow this kid to hop in the shower without help from his Mom...the ability to swim (Alleluia!), the possibility of actually going on his Make-A-Wish trip in the (not-too-distant) future...and most importantly...not having a huge tube hanging on the front of his chest that requires he live with incredible caution so not to bump it, have anyone else hurt it, etc. He sleeps mostly sitting up, on his back...and really, really wants to sleep comfortably on his side again. He also wants to not be self-conscious in shirts, fearing that the big lump on his chest shows. He was super embarrassed by it this summer, and was wearing this hot fleece vest over his t-shirts whenever going out or riding his bike on our street with his friends...he finally told me he was trying to hide the port...and it broke my heart.
Bran's arms were ultra sound-ed a couple of weeks ago to get a good look at his veins to prep for this surgery. The next and most ideal step would have been to create a stint in his lower arm/inside wrist area. That's the creation of a large juicy vein used for easy access, by grafting together multiple veins. A stint can last for many, many yrs. The ultrasound showed that none of the veins in his arms are usable for that, they are too small. This was a very big blow for Matt and I. The stint could have lasted well into adulthood for him. Based on the results of the ultrasound, they are going to put a graft in his upper arm, like on the front of his bicep area (sort of). It's not ideal because it's large, will be a pretty big disfigurement for Brandon's arm, and there will be a large tube visible under his skin, as well as the graft itself...which was described to us as a piece of plastic that's shaped like a brick (only smaller). The reason this is not what Matt and I were hoping for is because it lasts for a much shorter period of time than a stint. I've assured Bran that we can have long sleeved shirts altered to a short sleeved length that can cover his graft comfortably. The surgeon told me last week that she's seen this kind of graft last for months, or 5 years. His surgery will be in a few moments, and God willing, we'll be home tonight. It's a 2 hr. surgery. It takes 6 wks of healing and scar-tissue build-up before the new access can be tried. We won't know if the surgery was really successful until then. And the current, external port can't be removed until we have a good working new access...so 6 more weeks with the chest port. The graft will be going into his right arm, since he's a leftie, so he'll have the healing graft on the same side of his body as the chest port...it's a lot for him to endure.
Brandon is very upbeat about all of this. He told me last night at bedtime that he was excited. He doesn't know there's a plus or minus to either the stint or the graft, he didn't take in the details when the surgeon explained everything...he was totally fixated on being thrilled to get rid of the chest port. Matt and I do NOT share speculative info with him. If something about his illness is a "maybe", or just a possibility (and that describes all future prognosis), we do not feed any of that to him. Living in fear about a "might", "maybe", "could"...that's not where God resides, we know this. I was very internally emotional when we got the news that the stint wasn't do-able. But I spent that day just praying, "Lord, thanks for the reminder that you are in charge of all of this....you were in charge before, now, and in the future. Nothing has changed in that regard, nothing." We are asking that everyone offer up major prayers for the success of this surgery, on today and beyond, as it heals. I had an incredible time of Spiritual Direction when I was on the OLPH women's retreat this past Sept. I was talking with one of the friars, who happens to be a friend, and he told me, "We don't have Grace for the future or the past...we only have it NOW." So Matt and I try to stay in the now in regards to all of this. Thanks so much for the love and prayers that we know will flow out of all of you for Brandon, and for the 4 of us.
Peace to ALL our hearts~
Brig

3/16 Update about Brandon

Time for an update about Brandon!

We have been on a roller coaster since our last update. I don't really even know where to begin, so here goes.

About a month ago Brandon had a biopsy on the new kidney. We got a call a few days later that there were boarder line indications of rejection. That was a heart plummeting, terrifying call. We were told to head right to the hospital for a 3 day IV Prednisone treatment, the standard anti-rejection protocol. Bran and I had a very peaceful and wonderful weekend in the hospital together! I know that may sound strange. When I surrender to a situation as being beyond my control, and decide it's going to be a blessing...IT IS. It's really that simple. I told myself that he and I were going to have a weekend to play board games, Uno, chess, watch movies, laugh a lot, connect with all our nurse friends, do crafts, play video games. And that is exactly what we did, and it was great. We were happy to head home on Sunday afternoon, but it was a really pleasant weekend nonetheless.

When I got the call about the rejection, part of what made it such a shock was that we'd had some rather unexpected and seemingly miraculous recovery. When Bran had the transplant, his creatinine (kidney function) was at 9. After many weeks it went down to 5, moving in the right direction. The lower the number, the better. We were at 5 and 5.2 for quite some time, and then inexplicably the number went to 3.1. By the reaction of the doctors and nurses at the Transplant Center, we realized the drop from 4.5 to 3.1 in one week was a VERY big deal. Everyone was ecstatic about this lab result. We had two weeks of the creatinine being 3.1.

After 2 wks of incredible recovery, we had a major set-back. Now, we don't know what really transpired on the other side of this story, we only know what was happening on our end. We showed up for Brandon's Plasmapharesis treatment (they separate the plasma from his blood and discard it, replacing it with clean plasma), and the nurses said they'd been trying to reach someone at the transplant center to get a renewal on the order to continue the treatments. The previous order had run out with our last treatment apparently, without a new one arriving. We had been told by our transplant surgeon and nurse that these treatments were obviously working and would continue until Brandon no longer needed them. We knew this was not that time and that no decision had been made to discontinue such critical treatment for lessening the impact of his disease on the new kidney, etc. Our Pharesis nurses had been calling our coordinator and leaving messages, we called several times...no one picked up, no one returned the voice mails that had been left. They couldn't legally give Bran his treatment, so we went home trusting that all would be rectified before we showed up for another treatment, 2 days later. Once again, Bran had his early morning dialysis treatment, then off to hospital for the Plasmapharesis. The nurses were very upset to tell us when we walked in that they'd been calling the transplant folks over and over and over, for 3 days...and not one call back or acknowledgement of the request for an updated order. We started calling on our cell phone again too, from the Pharesis room, leaving messages that were clearly urgent...no one was picking up the phone, no call backs. It is Friday, so we headed home very concerned. By Saturday, after much conversation, Matt and I decide to try and reach someone through the weekend emergency number at the transplant center. We were really worried that we'd show up on Monday morning and discover that there was STILL no order for treatment and that Brandon would miss it for a 3rd time. I reached the nurse on call (not someone we know) and told her all that had transpired. She was aghast, to say the least, and reached out immediately to the actual transplant surgeon! Long story short, the surgeon met me at the transplant center on the following Thursday morning when we arrived for our clinic appointment, to tell me that she'd come in that Monday morning and called the whole team together...and that THIS WOULD NEVER HAPPEN AGAIN. I could tell that something major had gone down. Our coordinator came in with a very humble apology, saying there was nothing she could say but that she was very sorry and it wouldn't happen again. Shortly thereafter we received the news that Brandon's kidney function had gone from 3.1 all the way back to 5. We lost a lot of recovery, and we knew it was because Brandon hadn't received the treatments 2 times in a row. No one was saying that of course, but we knew. Matt and I were devastated, quite honestly. It was a huge blow. Brandon then had the kidney biopsy...and the results were boarder line rejection. As you can see...this was a terrible error that had some pretty big ramifications. This experience did a number on me for a little while. I was so angry, I'm talking ANGRY...it made me feel sick to my stomach. I could have punched someone in the face when we got the creatinine results. And when that boarder line biopsy came back...no words. I am not a person who experiences a lot of anger. But for about a week I really couldn't see straight, and was praying all day long to surrender and let go of my anger. I was walking around acting normal, but inside I was just sick at heart. I could barely look at our nurse coordinator when we went in for clinical next, I was still so devastated. You have to understand...these people are the most critical medical support we have to keep our boy alive. Literally, we can't do this without them. To have the people we were trusting with everything, every aspect of Brandon's transplant and recovery, to fail us in such a huge way...it rocked me to the core. As he always does, God worked on me and helped me recover my emotional balance...but it took a minute.

That all happened 3 wks ago, and last Thursday Brandon went in for another biopsy. His creatinine was down to 4.2 with the last result we had. Thank God it's improved from 5.0.

I just received a call a little while ago that the newest kidney biopsy shows signs of boarder line rejection. Because it's early in the week, we can go each afternoon to the out-patient department in Pediatrics and Bran will get an IV treatment of Prednisone again to try and stop the progression of rejection. We'll be in New Brunswick all day tomorrow, late afternoon Thursday, and all day Friday.

On a happier note, yesterday was Brandon's last day of "confinement", as we've been calling it. Three months of recovery in the house after transplant, and now he can be outside, have some cautious visits with friends (still vulnerable to sick germs), eventually get back to church, etc. He is beside himself with joy. He's been counting down the days for the last month! To celebrate, he and Briana and I went for a walk from our home to our downtown, our first since his transplant. It was amazing to have him out and in the sunshine, strolling and window shopping, and enjoying the gorgeous, fresh air. He and Bri are out front on their bikes, having a gentle little bike ride on our street. I can hear them laughing and talking as they glide by the front of the house. Praise be God!

We ask for continued prayers for this amazing boy, for our loving, brave daughter, Briana...for Matt and I. We have not lost one iota of trust that God is, indeed, healing Brandon. We do not know how or when the healing will be complete. We are grateful for all the HUGE blessings in this experience and journey that we are having as a family. We thank God every day for Brandon's healing, and we ask that you do the same. Prayer can move mountains, people!

Why My Support for Abortion was Based on Love and Lies

This is a great article about a woman's progression from life-long pro-choice beliefs...to another way of seeing the entire situation. I've never read anything that leads you so thoroughly through someone's change of heart about an issue that is so intensely held on to by both sides of the argument. I had to share this.

https://www.lifesitenews.com/opinion/why-my-support-for-abortion-was-based-on-loveand-lies

Be A Voice

Anyone who sees my posts on Facebook knows this is an issue that is near and dear to my heart. My cousin posted the below article, and it needs to be shared, over and over. I post these things on Facebook not because I think this is a great forum for converting hearts or changing peoples minds. I think that most people who are staunchly pro-abortion will simply skip over my posts. I post these things for all the well-meaning people in my life who, if pressed, would say they are pro-life, but in their lives they stay silent so as not to offend anyone. They don't want to be associated with a counter cultural issue that's so controversial, they want to be liked, they want to be seen in a certain way, they want to be comfortable. I have a lot of compassion for those feelings of wanting to be... cool enough. Even as a full blown adult of 47 yrs, I really don't want to be perceived as a stiff, as an old-fashioned, un-hip middle aged woman who's well past her cool years. I really don't! That is MY issue, it's so shallow, and I push on through it so I can be totally and completely authentic to who God has called me to be. I can't be cool, politically correct, culturally relevant, "tolerant"...in the worlds eyes. I let that desire to please go, over and over. I am just ME, this faith-filled, flawed, tiger-hearted woman with a conscience that just won't be quite, won't go to sleep, and won't let me wander far from home, aka Jesus. That's who I've always been. When I was young, I tried to be someone else for a little while. She didn't fit into this skin, this heart and this soul. She was too much work, she wasn't happy, and she wasn't real. So I post these things in an attempt to encourage my fellow pro-life-at-heart brothers and sisters to stay WIDE AWAKE about this issue. There is no greater issue in any circumstance than how we treat our fellow man, how we protect those with less power than us, those with no voice or rights. Being pro-life isn't just about abortion, it's about a world view that says that all human beings are infinite possibility, that we are made in the image and likeness of God, that we all have dignity and a soul...even those of us still attached to an umbilical cord, even those of us with incurable illness, even those of us so old that we can no longer care for ourselves, even those of us on life-support, even those of us unable to contribute to society. An unborn baby needs the care of it's mother's body for a period of time to survive. My son needs my care RIGHT NOW, 14 yrs after he was born, or he would not survive. Does that make him less of a person with rights? Is his value dependent on his ability to stay alive separate from my care? Is location and independence really the qualifier for who gets to live? It will not matter if we save our planet and balance the budget if we continue to kill babies in the name of convenience, freedom, and choice. And when we stay silent on this issue, WE are part of the problem. We are choosing to say nothing, do nothing, and help no one when we hide in the crowd so as not to piss anyone off or lose friends.

-This issue is always on my heart...but lately things have been crossing my path that make me gag in horror. I remember 30 yrs ago reading books and articles about abortion, going to conferences and hearing world class speakers...this term, "the slippery slope" was used back then to talk about the long-term ramifications of abortion on the moral compass of good people in our country. Meaning, how turning a blind eye to it's reality would anesthetize generations to the horror of its reality, to the horror of infanticide, euthanasia and physician assisted suicide...that legalized abortion was the slippery slope leading to all sorts of unimaginable human rights violations. Aren't we seeing that now?! It's just horrifying to me. We have to just keep speaking the truth, putting it out there for people to see in all it's horror, we have to be a voice for all those who don't have a voice...the unborn, the disabled, the elderly. If we don't do it, there is no hope.

http://todaychristian.net/ny-house-passes-shooting-full-term-babies-in-the-heart-with-poison-to-abort/

Homeschooling Turn-Around

I love the article below! As a Youth Minister years ago, my experience with 2 homeschoolers from very different families totally changed my opinion of homeschooling. I later met another family with 5 kids who had been homeschooling for years, and they blew me away too! All of these young people were leaders, some were out-going, some were shy, but all were articulate, incredibly balanced and bright. They were liked and admired very much by the other kids in our program, they had many friends from all different walks of life, had developed many interesting talents, were curious about the whole world, could converse in the most amazingly poised manner with adults and peers alike, possessed sharp humor and insight. I went from thinking homeschooling was pretty horrible, to thinking it was amazing, even fantastic. Little did I know that God was readying me for the son I was going to receive after 5 yrs in ministry, who would be ultimately be too ill to go to school...and the daughter who would blossom and benefit from having years to bond with me and grow into her own, beautiful person. What a revelation this schooling journey has been. I'm incredibly grateful to live in a country and state where we can live this life. It's such a privilege and blessing for our family.

http://www.deeprootsathome.com/one-college-profs-experience-with-a-homsechooled-student

1/19/16 Update about Brandon

Update time...Brandon and I got home last night around 7pm. Thank you, Lord. Every time we come home from a stay in the hospital it is like we are seeing, experiencing and loving our home and family time on a deeper more heightened level. We all slept beautifully, our beds were cozy and everything felt RIGHT being under the same roof with Briana and Matt again. While in the hospital, Brandon had three days of IV steroid therapy. This is the standard treatment for kidney rejection. I learned that his biopsy results were borderline rejection...but that there isn't really any distinction between that and advanced rejection because one will lead to the other if not arrested and reversed by treatment. The doctor said, "Thank God we caught it when we did." We wouldn't have had to go stay at the hospital if this hadn't happened in the middle of the weekend. They would have sent us for outpatient IV treatments for 3 days. We will continue our thrice-weekly dialysis sessions and plasmapharesis sessions. We meet every Thursday with the transplant doctors for check up/blood work/ data analysis. They will do another biopsy in a few weeks. We will see what the future holds...in the future. And this will be how it all plays out.

I have to remind myself constantly that this is normal, this is OUR normal. I can remember when the kids were young and we were new parents learning how to cope with this disease that it felt like real life was when Brandon was in remission. I'd sort of hold my breath during his relapses and wait for everything to be right, to feel safe, for remission to arrive in order for me to exhale. I've learned that our real life is what's happening ALL the time, not just when Brandon is well. I'm learning to exhale into all of this, it's how I stay present and combat crisis mode. Crisis mode for me is deadly, it is being in fear and in a constant state of waiting. Crisis mode is not a place I can live comfortably, or safely.

People tell me that I am strong all the time. I hear it from friends, nurses, surgeons, strangers...and it is so kind, so sweet to be told such a nice thing about ones self.  I think every parent caring for a child with serious illness hears this. But I always feel incredibly, deeply unworthy of the compliment. I mean, you guys...you just don't know. There have been times I've crawled into bed and I just could not function because I was so paralyzed by my fear about Brandon and the terrifying unknown future. When Brandon's been in the hospital for long lengths of time with no end in sight and it feels like he's never going to be okay and every terror of my heart is playing across the movie screen in my mind...I am NOT strong. But there is this Power that comes and finds me in those times  and reminds me of who I am. If someone could die of fear, I'd be long dead by now. But the Grace I receive in the Eucharist at every Mass, and from the hands of a tender-eyed African priest at the hospital...that is the Power that sustains me and drags me out of bed with the echo in my heart of what I KNOW to be true. I am a daughter of the King, we are carried and loved beyond measure, God wants only good for us, we will never ever be abandoned, and this world is not our home. And I can not even put into words the Eucharistic Graces that make me who I am in the midst of this life of ours. I recently heard someone say that "We are made for this." Or I read it somewhere...I have no idea it's origin. I've been thinking about that daily. I was made for this. For THIS. The comfort that statement gives me is beyond...it's beyond what I can express to you. When all of this feels too much, too long, too scary, too heavy...I remind myself that I WAS MADE FOR THIS. I might be unloading the dishwasher and  the breath gets knocked out of me as I get blindsided with a horrific image in my mind's eye of what the future could hold for us, I say, "Brigid Eileen, YOU WERE MADE FOR THIS!" And the Eucharist is the food that sustains me in the midst of what I have been called to, and what I have been made for. If I didn't need the body and blood of the Savior coursing through my veins and in my cells and in my very DNA, I'd be my own God. But I am not my own God. I can not manifest Grace any more than I can manifest divine healing for my child. I can not remotely attempt to be the best version of myself, the person I was created to be, without this essential food in my life. I'm not strong. But Jesus has got me. And so I get out of bed another day, hug my children, love my husband, play Uno, and instigate a dance party in the kitchen.  

Please keep the prayers coming. You can't begin to imagine how they wrap around us and remind us that we are SAFE.

Love to all of you, my dear prayer warriors. xoxo