Category Archives: Bedside Reflections

Milestones

It’s November 2, 2017 which means it’s been exactly two years since we met James and he became our son! Happy Family Day sweet boy!

James has changed physically and emotionally in numerous ways. He’s several inches taller and several pounds heavier and he’s flourishing in Kindergarten. He’s receiving OT services at school and privately to help him as he rehabs from the major arm/hand surgeries he’s undergone this year. We will see his surgeon next week for his 3 month follow up, and to discuss and plan for the next round of surgeries for his right hand which we hope to start in January. The hardest part is retraining his brain to use his fingers in a new way, and trying to overcome the challenges of the contractions in his finger joints. They are considered “moderate” but they impact his strength and range of motion pretty significantly.

James loves to play with Andrew these days. They are constantly building and playing with Legos, Nerf Guns and Minecraft. He loves to play and read about policemen and firemen and loves to sit and just look at books. He’s eager to draw pictures thanks to an amazing art teacher at his school who motivates and empowers the kids to feel confident in their abilities regardless of their skill level. He’s done much better with making friends this year and has one friend in particular at school that he has really connected with and talks about often. It’s such a joy to see his confidence grow and social skills develop.

James will be SIX next week!! He was such a little boy, almost like a toddler, when we met him. But he has truly blossomed into this little boy who is growing up so quickly!

Milestone #2 – 

Tomorrow, November 3rd, marks four months since we met Emily and she became our daughter!

A week ago today she had surgery to remove a good portion of her lypomyleomeningocele, release her spinal cord which was being tethered down by this lypo, and then put her spine back together. The Lypo is a benign fatty tumor that formed in utero after the disruption of the formation of her spinal cord so it’s a form of spina bifida. The neurosurgeon lasered off the fatty tissue as much as possible, but there are a lot of nerves emeshed in it and so he couldn’t remove it all without risking further nerve damage. A neurophysiologist was monitoring and tracking nerves throughout her body during the surgery and they did note some minor impact to her left foot. It’s concerning in the sense that her left leg and foot are her strong one (her right foot is clubbed and the muscle in her right leg is almost entirely atrophied right now) but so far we are not seeing major symptoms. She does complain of pain from time to time in her feet and she is still very newly post-op so it’s hard to know if some of her mobility struggles right now are related to that or her back healing. But overall the surgery went very well and her incision is healing well. We just have to keep it clean and monitor it for infection or spinal fluid leaks. She handled the 48 hours  flat post-op so much better than we expected. We pushed to schedule her on Morphine right out of the OR as we knew she doesn’t have the language to communicate about her pain levels and location. She slept for almost the entire day after her surgery. By Sunday she was sooo ready to go home, but her body wasn’t. She couldn’t bear weight to walk on her on in the morning, so the team said one more day. We worked with an acute PT and got her going and by Monday morning she was ready!

 

 

 

 

 

 

 

 

We have to watch her carefully at home. She needs assistance sometimes and definitely fatigues easily. She’s been taking long naps and prefers to sit most of the time. She can’t “scoot” like she used to, or bend over to pick things up or get up from a squat position without holding on to something and grimacing. She’s as determined as ever though. We hope to get her in for a PT eval soon and start that on a weekly basis ASAP. We’re also sorting out next steps for treating her club foot with the Ponsetti method which involves serial casting for about 6 weeks and wearing a pretty intrusive bracing device overnight for several months. It’s our goal to have everyone cast free for next summer so we can enjoy the beach and swimming as much as possible.

I had really wanted to blog while in the hospital to continue my “Bedside Reflections” series, but unfortunately I accidentally left my laptop at home. But I want to share this briefly…

Emily is really scared of doctors and nurses. She cries as soon as they come into the room and gets really upset. Like every. single. time. Doesn’t matter if it’s a routine office visit, or an aide just trying to take vitals in the middle of the night while she’s sleeping. Just when I thought she’d settled, she’d hear the velcro of the blood pressure cuff and she’d start crying again. And in some ways I don’t blame her. All these strangers, all wanting to touch her and talk about her. No. fun. But we had one nurse who decided to go above and beyond. To not just tolerate it or try to “stay away” and not make her upset. She recognized her fear, recognized that she has more medical stuff ahead of her, and she took responsibility for Emily’s feelings about medical staff and started being really intentional about winning her over. She was creative and playful and engaging without overwhelming her. For example, she recognized that the gloves were an object of fear. So she made a funny face balloon out of them and turned them into something fun. She then advocated for her with all the other staff and got Child Life involved to help make things fun. From then on, every person who came in knew that they need to put in some extra effort to help our girl not feel so afraid. And it was such a gift. Such a relief. It didn’t take long, and didn’t take much, before Emily was clearly willing to offer some trust and pretty soon her whole demeanor around this nurse changed, and she started to let down her guard with the other nurses and aides too. This nurse, Carol, was a blessing to us and I’m so thankful for her wisdom and concern, and frankly – her ownership of her patient. She saw beyond the diagnoses and charts and med schedule, and she saw our girl and she didn’t run away in her own fear of not knowing what to do with a child that cried every time she walked in the room. She fought for her trust and she earned it. And in doing so, she encouraged me to speak up to future medical staff and push them to do the same. Because yes, it’s asking more. And yes, her medical stuff is the priority. But her emotional well-being is equally as important and since we’re not going to be strangers to medical staff, it’s important she feel as okay as possible about it all. Nurse Carol has set the bar high and I hope to hold others to it going forward. A huge thanks to ALL nurses for your kindness, strength and perseverance in what is often a difficult and thankless job.

 

 

Faith Realized

The latest in my series of Bedside Reflections…

I rocked and rocked our James boy tonight. He was tucked into me so snuggly, his soft blanket wrapped around him. I recalled and sang the rich lyrics of my favorite childhood hymns of God’s grace and love over him. Looked down on his tired face..and tried to find the words to convey the depth of my gratitude for how God has brought my faith to fruition in the last few weeks…

When we chose to say yes to James, knowing he had an limb difference that could require surgical procedures, and that he could have other unknown medical needs requiring medical care, we had to take a lot into consideration. One of those things was, the fact that I have a history of fainting in medical situations…

Some of you know the whole story of that and I won’t retell it all here, but basically we’ve figured out that my vasovagal nerve sort of malfunctions in these situations. This was definitely a concern for us because it’s not like this has just happened a couple of times in my adulthood in severe situations. It’s happened a lot and started when I was just 8 years old. The first time I had stitches? Bam. Right out. When our oldest daughter was 1 and going for blood work I passed right out while holding her. I woke up in a panic wondering if she was okay and passed right back out again. Pre-op IV? Down. And most recently, and probably the worst episode, was after we’d been matched with James. It was Gabi’s second eye surgery. She was in recovery and just coming out of anesthesia. I felt the lightheadedness coming on, but Kevin had stepped out to be with Andrew and I was afraid they would  make me leave her if they knew how I was feeling so I didn’t call anyone, convincing myself I could shake myself out of it. But I couldn’t. And I barely rang for the nurse in time before hitting the floor. They revived me only to have me pass back out again. And when they couldn’t get a clear pulse ox reading they called for a stretcher. Yea…my daughter is post-op and I’m being taken to the ER in a stretcher. Mom. of. the. year. right there. Ugh…

We knew there was risk and we knew it might be really difficult. It was easy to feel afraid, but we also knew that God had repeatedly opened the doors and confirmed the call. We didn’t know how, but we knew He would meet our every need.

We didn’t have the clear answer for that “how” when we chose to say yes to Emily. And Emily has surgeries in her future as well. In other words, we didn’t have “all our ducks in a row” when we said yes to a life commitment that could be really challenging. But we had peace. We had conviction of God’s leading and provision for our EVERY need. So we pressed on.

Bring on February 22nd. Bring on the day that blew me away with a faith realized. Bring on the first of now 16 days in which I have not had EVEN ONE problem being in a medical situation, cleaning and changing James’ dressings, or dealing with the fact that my little boy has an arm full of metal pins and healing skin blisters created by swelling that his little body could not absorb quickly enough.

That Is Just Craaaaazy!!  My family and close friends will tell you this is seriously shocking! If I told you all the other stories of times when I passed out, or nearly passed out, when I had a bad cut or someone around me did, you’d say I was the last person that should be caring for someone post-op. But here I am. And here is the power of God completely and totally doing a miracle!

Maybe I sound like I’m being a little melodramatic, but just put yourself in my shoes and imagine the utter relief at how God has chosen to answer and provide. I can take care of my son! I can shoulder the load of helping him through something so hard. As a Mommy, it means I can be there for him in his time of need! We were prepared for this to go either way and yet God has completely revealed that He can do anything. And for me, this is a provision that has strengthened my faith like never before.

When I first said yes to God about adoption, I had heard it taught that it is safe to be faithful to a faithful God and I clung to that. The situation can seem scary. The possibilities overwhelming. But we can be safe in the face of our fears. My faith in this truth has been realized and I rejoice and thank my God that He has provided this strength for this season.

This is not my story of healing or faith. This is God’s story of His sovereignty and faithfulness to ordinary people who find themselves loved by an extraordinary God.

Bedside Reflections

I wrote this post and when I went to title it, I realized it could become a recurring “series” of sorts as we’ll have a fair number of surgeries in our future between James and Emily. I would love to journal out at least some of what God bring to my mind and heart in these times.

This morning he woke up with quite the energy and a lot of emotions and feelings and that continued through the day. He is definitely missing home, specifically his own bed he told us. He’s feeling some frustration about all that’s happened – the pain, the loss of independence, the confinement, etc. We had everything from straight up anger to total silliness and craziness to tears. All normal for a child (and heck, even an adult,) after a surgery like this. What’s tough is the way he manages pain. He definitely has a high tolerance, but we’re not sure it’s a healthy tolerance. We know that for the first four years of his life, any medical needs were minimally addressed, if at all. There was no one to snuggle him to sleep, or give him Tylenol when had a fever, or make sure he was comfortable when his belly hurt. And when a child’s basic needs are ignored they learn unhealthy coping mechanisms. James is constantly trying to distract himself and while we’re happy to do that, we are sometimes running into a situation of not being able to stay ahead of the pain and we’re constantly working on helping him express his feelings as he tries to keep it all inside. If you are led to pray for us, please pray for his heart and for everyone’s patience and understanding and wisdom for how to help him heal inside and out.

This first inpatient experience on a Peds floor has been sobering. We’re here to correct a limb difference and hopefully be in and out in a few days. But there are premie babies and their desperate parents fighting for life down the hall. There is a middle school girl recovering from her 30TH (yes 30TH!) orthopedic surgery with her faithful momma. In the next hallway is the inpatient pediatric oncoloy ward with with rooms full of brave kiddos battling cancer. And I see the bone tired parents, and you hear brief exchanges of celebration for a decent night’s sleep between mommas who were once strangers now brought together by the bond of suffering children, and you see the Grandma at the bedside bassinet. Stroking the sweet head. Over. and Over. and Over.

The raw reality of our humanity is ever before me here. It has echoes of our time in China, and our trip to James’ first home. These matters of life, and death. The children that seemed to have no life in them as they sat slumped over a dirty walker in a room empty of toys but filled with beds made only of boards and metal rails. The knowledge that throughout this one building, at any time, people are saying goodbye. People are grieving.

Most people can’t wait to leave a hospital. I can’t wait to get James where he feels truly safe and at peace. But, whenever I encounter these sobering, life clarifying contexts, I find myself hesitant to return to “real life.” Like the distractions James seeks to pacifying his pain – physical or emotional – I too often allow myself to be swept up in frivolous distractions so as to avoid the heaviness of the hard things in this life. And yet this wrestling in my soul to draw near to what I can only describe as a sacred place tells me that in these places of suffering and loss, as well as celebration for healing, we see the very core issues of life and it clarifies us. Which often paves the way for God to sanctify us, all the more. And rather than run in return to the things which don’t require me to feel so deeply, I want to carry this sacred space with me that I may walk daily in a truer reality formed by the heart of God who walks closely by every worn and weary mama, every celebrating daddy, and every waiting child.