Thursday, August 24, 2017

Where Do I Go From Here?

I sat next to Austin's wheelchair in the clinic waiting room intently focused on him and his needs. Or at least I was pretending to be. He was actually fine at the moment and didn't really need my attention, but "attending" to him has become my defense mechanism when we are in public.

Unfortunately, even though I write about being ok with the stares of strangers and being ok with questions about Austin, I still find myself avoiding those situations if at all possible. I avoid eye contact. I busy myself with "entertaining" Austin. I dig through the diaper bag. I adjust his harness. Or I just look at my phone, the ceiling, the floor. I do not make eye contact unless absolutely necessary.  And I don't know why because I really don't mind answering questions about his differences or letting children or adults try to interact with him. I want those things. I really do. 

However, deep down, I probably do know why. I'm still afraid of those instances when I catch someone staring or being curious, and I begin to smile or encourage an interaction, and they shy away instead. Somehow, when that happens I feel all the lovely rejection emotions for either myself or on behalf of Austin. Or I feel shame. I know. I mean there's nothing to be ashamed of. He's just a kid with a few medical challenges, none of them his fault. And of course, everyone says they aren't my fault either. So it can't be shame....

So there I was being all busy with Austin when a young mom bottle feeding her new baby plopped down on the bench next to me and started asking all the probing questions. I braced myself to be happy, enthusiastic, and positive. I mean this is who I want to be. Let's do this.

"How old is he...?"
"Does he have Downs or ....?"
"When did you find out about...?"
"Oh! That's when we found out too!..."

Wh...wait...what?

And that's when I came out of my little internal world of "all about me" and noticed for the first time the baby she was holding was a tiny newborn, probably a preemie, with Downs Syndrome. The young mom was in her teens.

I'd never seen a preemie up close before. I'd also never seen a newborn baby with Downs.

"...yeah, my mom is going to be here in a minute...she's helping me...my boyfriend won't even touch her yet..."

"Oh", I stammered. And as the gears in my brain slowly shifted away from me and my anxiety over being questioned about Austin, I realized this overly chatty young girl was looking for support from another mom who appeared to be surviving this special needs life. 

But I had no plan. My mind was spinning, searching for the right thing to say.

I asked if she was getting support services. She said yes. At some point, I warned her that she might experience a period of grief over unrealized expectations, and that it was ok and normal. She said she thought her boyfriend was experiencing grief. I assured her with the most confident smile I could muster that eventually all of this would feel very normal. That things wouldn't seem so daunting. I think I told her it took me 4-5 years to come to this point of acceptance. Not sure that was the best thing to mention.

Then her name was called at the front desk.

"Can you watch her for a minute?" she asked as she set the baby in a carseat and nudged her in front of me.

Caught off guard, I stuttered an "um...sure" and watched her go check in. She was so young, and yet already being handed a huge challenge in life, something I didn't experience until I was 40. She was just a baby herself, nervous, searching for hope...from me.

I stared at the baby in the carseat, so tiny, so innocent and beautiful, and beginning to fuss and cry just like any other typical baby. I spoke to her in my high, mommy voice trying to soothe and assure her she was going to be ok, that her mommy was coming back in a minute. I rocked her carseat with the toe of my shoe.

I thought about how young this mother was and how she was just at the beginning this journey. How much strength she would need to get through the next few months or next few years. How many tears she might shed. How scared she might be. How strong she was going to become as she advocated for her child's health, education, and acceptance.

This whole encounter was a wake up call I haven't been able to shake. While not always easy, caring for Austin has become my normal. So it makes me wonder what my role is in this special needs/medically complex world? After having been consumed with my own disappointment and grief for so long, and now that I'm finally coming out of that phase, do I have a bigger purpose? Do I even have time "to give back"? Do I want to?

I don't have these answers yet. I'm reluctant to jump into something just to be doing something. I guard my energy fiercely. I've even been thinking lately that I don't identify as much with other special needs moms. There was a time I lived and breathed every word other moms wrote about this life. But lately, I find myself impatient with the words they write. It was as if they were needed for a time, they served their purpose, and now will serve their purpose for someone else. But maybe not me anymore. I've actually been having sort of an identity crisis. 

So for now, I think I'll just try to be more aware of my surroundings especially in a clinic or hospital where I may be more likely to encounter someone looking for support. I'll try not to be afraid to make eye contact. And at minimum, whether in person or here on my blog, I can continue to share my story, and say with some degree of confidence, that I eventually perceived my situation as manageable.

Monday, July 3, 2017

Faith of a Child {Choosing Life: Chapter 6}


September 9, 2010

The following night she found herself curled up on the couch, crying into her husbands arms, second guessing all of her heroic thoughts from the night before. Fear of the unknown dominated her mind.

She remembers details like the overhead ceiling fan light being on and seeming too bright, the sage green of the carpet, the floral pattern on the couch cushions. She also remembers her oldest son descending down the stairs. With each step he was telling her that he had prayed and it was going to be alright. He was convinced it would be. And that the baby would live.

In the simplest way they could, they had told their kids about their unborn baby's deformities and brain malformation, preparing them for the worst possible outcome. So at the time, these words coming from her now eleven year old washed over her with assurance and comfort. She so wanted those words to be true. She wanted her son to experience positive results of a childlike faith even though she secretly feared her he would be let down and challenged in his faith at what she considered too young an age.

But she let him keep speaking, keep assuring, keep being positive. What else could she do, but grasp onto those words coming unprompted from a child and hope they were truly inspired by God? Even if they weren't, she thought often throughout the rest of the pregnancy about his willingness to lay it all on the line and declare his faith as a result of having no previous experience of doubt or disappointment to cause him to do otherwise. Oh to think and trust like a child again.

So whether they were inspired or not, she took those words from this child and held on tight. Whenever she doubted, she thought of him coming down those stairs full of intentions to comfort and care for her. She's not sure he ever knew or even knows now how much he confirmed her decision to continue the pregnancy, come what may.

Facebook status, Sept. 9th, 2010: “We are overwhelmed by the wisdom and faith God has given our kids right now. The things they are saying about their little brother and our circumstances can only come from one Spirit. We can certainly feel the prayers of the People right now. Thank you.”

Facebook status, Sept. 9th, 2010: “We let the kids pick their little brother's name today: His name is Austin Chase HagEstad! Michael chose Austin "b/c that's a cool name and cool people have the name Austin." Jonathan chose Chase after Chase Reynolds who plays for the Griz "b/c mom, when he is a big man, and if he plays NFL football he will need a football name!’ “.

Speaking of childlike faith, that second son soon to turn 9, brought a brief moment of innocent levity by wanting to give his baby brother a "football name" as if there was no doubt there could be a chance. She was later told about one of his prayer requests during classroom devotions at school, that his friends should pray for his little brother because his leg was on backwards! She was told he figured he could at least be some kind of cool kicker.

Austin's short leg and club foot ("leg on backwards")

Monday, June 19, 2017

I Am Not A Caregiver

She jolts awake to an ear piercing screech that sends shockwaves through her nervous system. Hoping its just a startle from a bad dream, she allows herself to start drifting back to sleep when another screech jars her system again. She lies there with her eyes wide open now waiting to see if it will continue.

It does. And now its becoming louder and more incessant, demanding. She huffs and sighs, flips back the covers, slowly rolls up to a sitting position on the edge of the bed and rests her feet on the floor. She reluctantly stands up and walks the 8-10 feet over to her son's bedside. He is six years old and still sleeps in their room because of his penchant for having seizures, choking on secretions, and his inability to reposition himself.

It's 2:00 am this time. Sometimes its 3:00 am or 4:00 am. But this time its 2:00 am, and on a night her husband is out of town. This is key to note because most of the time she will lie in bed and wait, knowing her husband, the true caregiver, will typically jump out of bed, multiple times in a night if necessary, to check on their son.

Her husband continues to get up until he figures out the problem whether their son just needs to be rolled over, suctioned, have a dry rag put under his face, a diaper change, or just comforted due to a seizure or bad dream. He does all this without complaining, and even though his sleep is interrupted and lost just like hers, he is able to lie back down and immediately start snoring. The next day he is business as usual even if tired.

She, on the other hand, once she has gotten up, especially if it takes several times to figure things out, will take 1-2 hours before she can eventually fall back to sleep. The next day she is often tired, resentful, and grumpy, often lashing out at family members for no reason. She might sleep all day leaving the care of her son to her husband, who has a home office, or the nurse if they have one scheduled.

Once she arrives at his beside, she proceeds to go through the motions, checking items off the list, trying to solve the problem as quickly as possible, knowing every minute counts if she hopes to accomplish anything the next day, even if it's just successfully getting out of bed and seeing to her son's basic needs.

But the screeching and crying doesn't stop. So as a last resort, they usually assume their son is in some kind of pain whether it be a headache from the hydrocephalus, soreness around his hips, some residual pain from having a seizure or choking, or from constipation. She trudges to the kitchen in a fit of angry tears to prepare a syringe of crushed ibuprofen and water.

Returning to her room, she pauses his food pump, administers the medication through his g-tube, and pushes "run" on the pump. She leaves the lamp on across the room in case she has to get up again, and slumps back into bed.

Everything within her wants to scream or throw something. Her mind fills with angry resentful thoughts regarding her life situation. She turns up the white noise app on her phone, puts a pillow over her head, and sobs.

"I am not a caregiver!" she laments.

She did not seek out this role. She does not have a special gifting or heart to care for the long term sick, the terminally ill, or those approaching death. She did not pursue a career as a nurse. She is not a trained therapist. She is not a doctor. At minimum she has a heart for the underdog, and that's about it.

This gig chose her, fell into her lap, and she hates it. And she hates that she hates it. She wants to feel "the calling" as some might refer to it. And on some days she thinks she feels it. But usually those are the good days, the easy days, the days she thinks she's got this. Those are the days she's met his needs successfully or came up with an out of the box solution to one of his challenges, or just left his care to her husband or nurse so that there was the appearance of ease.

Instead, most of the time, especially on the hard days, the beyond difficult days, she carries the heavy mantel of guilt full across her shoulders, the mantel of guilt for hating the caregiving role as opposed to the glorified superhero cape caregivers are normally attributed.

So unless being a caregiver has the minimal requirement of not running away...and she's at least met that (so far), she is NOT a caregiver and does not want to BE a caregiver.

-----------

P.S. You might be thinking, "If she isn't a caregiver, then maybe she shouldn't have taken on the roles of wife or mom either." And you would be right. She barely succeeds in those roles too.

Friday, May 26, 2017

To Michael: On Your Day Of Graduation From High School

I know today is not the end of our relationship, that you aren't being kicked out the door into adulthood, never to be welcomed back. But it's a day that represents the culmination of all the blood, sweat, and tears that have been shed for you since the day you made your debut into this world. You were born on your due date, with a relatively short labor until the very end when you made us wait 30 minutes while you took your own sweet time. But that thick dark hair, those long eyelashes, and that irresistible smile were worth the wait.

You have always been that way. Taking your time on things. Not conforming to how everyone else does it. Finding your own path that made sense to you. And not wanting to fail when you did finally try something. We would attempt to teach you new words, get you to repeat them after us. But you would sit there silently listening. We would wonder if you had even heard us. Then three days later you would use the word perfectly in a sentence. You also had excellent descriptions of the things around you, using words you knew to describe the object you didn't know. We knew exactly what you meant when you said "milk, cold door".

You were often a quiet child, reserved, with a big smile with moments of silliness. So sweet to everyone around you. When something did bother you, we often didn't know because you suffered quietly in a corner by yourself or in a heap on the floor. Your big hazel eyes and the previously noted eyelashes had teenage girls at the dude ranch where we vacationed fawning all over your three year old self. You could easily carry on a serious conversation with adults. You loved being the center of attention.

You loved people and new experiences. We found an innovative preschool that you attended three days a week. They encouraged unstructured play and led you on many excursions throughout the city. But it wasn't enough for you. You looked across the street at the kids playing at another preschool and asked if you could attend that school too. You didn't want to miss out on anyone or anything so you attended both preschools.

You were a bright kid. Academics came fairly easy to you, and we rarely had to help you with your homework. You still loved people and got along amazingly with most of your teachers and adults in general. You also loved the kids your age and yearned to be included in their groups, however, you were often challenged as to how to relate to them. You seemed to be the true definition of an old soul, and sometimes there seemed too much of a disconnect between their interests and yours. We could only hope that time would eventually shrink that gap as we watched you begin to build walls to protect your heart.

You had to learn to march to the beat of your own drum and be ok with that. You tried many sports and activities throughout elementary and middle school that kids your age were doing, and while you liked the activities, you didn't find anything that just clicked with you or that you excelled at until you went to a Christian summer camp that had a riflery segment each day. You discovered you had a natural ability at shooting targets, and although unconventional, you finally found a sport that you enjoyed and that would end up giving you the confidence that would propel you through your teen years.

In high school, academics still came fairly easy for you. You also sampled several clubs over the four years. You surprised us by dropping out of the rifle club your freshman year and eventually immersing yourself in clubs where you had to debate or give speeches in front of audiences as well as onstage activities like choir, school musicals, and plays. You had a chance to display more of that love of attention and (re?)discovered a love to entertain.

For what seemed like forever, you only claimed to have acquaintances and not friends. You kept your walls up with most and doled out your trust sparingly. You were careful who you called a friend, weighing their commitment and loyalty over time. It's been nice to see you let your walls down a little more during your senior year and let more people in. I hope they realize the gift they've been given.

You are independent, determined, and opinionated. You found a college that seems like a perfect fit for you almost 2000 miles away from me. You can't wait to spread your wings and prove yourself without me looking over your shoulder. And although perhaps unwittingly, you've been working hard at making me ready to let you go. Because while you make me laugh, you challenge me to think, and you are one of the lights of my life, you also make me want to pull my hair out, scream, cry and slam doors.

And that's a good thing I guess. I need some kind of reason to let you go. And I know down deep you will be fine without me. So maybe that's what I'm fighting against. YOU WILL BE FINE WITHOUT ME.

(I just don't know if I will be fine without you.)


Loving you no matter what,

Your not-always-able-to-keep-her-emotions-intact mom



Thursday, March 16, 2017

Beyond Difficult {Part 3 - You Know He's Complicated, Right?}



They returned to the rental where their other two boys were waiting. They made Austin comfortable as best they could on the floor in the living room so he could be around the commotion even if he was sleeping.

There were no gifts to open, but only requests of Monkey Bread which was their Christmas morning tradition. Her husband had purchased the ingredients, but they had found out the oven was broken when they first arrived. She quickly googled "microwave monkey bread" on her phone and soon they were eating bowls of brown sugar and cinnamon soaked biscuit bites.

They found a pack of Uno cards and started a game. She kept glancing over at her son thinking since it was a couple hours past 6:00 pm, he would soon start fussing for meds or something. At least, she thought, he would start waking up. Or become less puffy.

The Uno game went on for awhile. Finally someone won and they could be done. She got up from the dining room table and went to sit by her son on the floor. She lifted his arm and it just flopped on the floor. She couldn't get a response from him even when she pried an eye open. He was lethargic and still completely puffy. He hadn't had anymore wet diapers either.

She made her concerns known, and they debated what to do. The thought of going back to the hospital was not desirable at all. She especially was looking forward to sleeping in a regular bed that night since she had pulled all the night shifts so far. And the last thing they wanted to do was to arrive worried about something that ended up being insignificant. They looked through their paperwork for a number to call, but their choices were to go to a minor emergency clinic or go to the ER at the hospital.

Her husband had been looking on his phone while she read through the discharge papers. He found a number to the pediatric floor that he had been given back in 2015 when they had forgotten the feeding pump charging cord. He dialed it and it rang straight through. He was able to talk to the floor doc that had cared for their son the night before. She told them to go straight to the ER, she would meet them there.

They both took him, but as soon as the hospital started running tests and trying to get an IV in, she left her husband in charge and went back to the rental to get a night's sleep. She was running on fumes and finally had to let go of whatever control she thought she had.



"...This includes all pain meds (even Tylenol), muscle relaxers, and seizure meds. He can't have ibuprofen bc he is already at risk to bleed bc of the edema or something about his blood vessels already leaking into surrounding cells. Therefore he is in extreme pain from the surgery. We can tell bc his heart rate in high 160s and 170s, his body is tense, he is shakes if you move his legs, and he moans if awake. They did allow him to have a little morphine, however it did not touch the pain. His daddy is with him bc I cannot watch him in pain without being able to help him."
"...whatever it is, and his liver would then have a chance to recover. We decided he had been through enough suffering, and we would risk it. I had to wake up and tell the boys what we were doing, and then go to the hospital immediately. There were tears and it was a scary decision, but not a place we hadn't been before. We had to make life and death decisions when we got that 20 week ultrasound, and again when he was born. So after having given him a chance at life in the beginning, we now had to decide about his quality of life vs interventions (or non-interventions) now. So we decided we would make him as comfortable as possible knowing the risk, and then he could decide if he wanted to fight to stay here with us. We met with the pediatric liver specialist to discuss options based on 2-3 scenarios. This included discussing the possibility of full recovery, but mostly the possibility of complete liver failure, possible liver transplant, or palliative care. The main doctor in charge (not liver specialist) was so concerned about Austin's condition that he was worried that if we sent the boys home on their scheduled flight Wednesday without them coming to see Austin, they may never see him again. He said these things fighting back tears. That. Was. Hard. The floor docs continued all day to analyze the different scenarios, run tests, do scans, wait for results, and attack the various possibilities from all angles. He got meds to make him pee, protein meds to make his blood vessels quit leaking the water causing the edema, antibiotics just in case, and even a dextrose drip to raise his very low glucose, plus the muscle relaxer and Valium. All we could do was wait to see what would happen and pray for the best for Austin. I know I personally spent some time reading y'alls encouraging comments and prayers. At the end of the day (last update by doc at 11:00 pm), we are told we are not out of the woods. His liver is still considered to be failing at this time based on the liver enzymes and needs to recover. However, their are glimpses of things possibly turning around. Words like "guardedly optimistic" were used, and some numbers were showing a slight trend towards the better. Liver transplant was taken off the list. However, chronic liver damage could still happen. And while they are encouraged by some numbers and the trend, the numbers aren't at normal levels yet. And some numbers are going the wrong direction and causing them to be perplexed and without an explanation why. We are also still waiting on virus tests to see if we can even know what caused all this. The funny thing is, none of this is a direct result of the actual hip surgery that we came for. That part all looks good. Dr. Yngve has been here to visit just about everyday except Christmas, and twice today. The only thing I'm concerned with is the fact that Austin had been in so much pain and been having the prolonged muscle spasms, that I haven't been able to do any ROM the past couple days. Small concern, I know, but one of the few things I was supposed to be in control of. Where we sit right now though, is that most of Austin's spasms and pain now seem to be taken care of which was the initial concern that sparked the plea for prayer. So that prayer was answered (for all you checklist types like me). All I can say is continue to think of us."
"...thing is that his heart rate has been in 100s-120s all day with no meds on board. We also haven't really seen the spasms anymore, but we have been told to watch for seizure activity, and they are prepared to give him something for that. He seems really comfortable and quiet, almost too quiet. We know he's been through the ringer, but we will feel like he's recovering when he starts to become a little more interactive. It's still hard for him to keep his eyes open bc of the puffiness so maybe that's all it is. I like the docs here, they seem to be really trying to figure this out. It was a little disappointing when the Christmas crew left, and a new New Year's crew came in. You always wonder if there will be continuity of care. But so far all seems to be fairly seamless. Tomorrow he is scheduled for a biopsy of his liver. They are hoping to get more clues into what caused his liver to stop working, and clues to how to prevent it from happening again after it recovers this time. There really is no end in sight right now. We don't know. We will probably send the boys home Friday, and continue camping out here in Galveston."
"...were very short, but were happening every few minutes. They decided to give him a low dose of Valium that seemed to have curbed the cluster. I've seen one short one today, but no clusters or long seizures. If you have been following along, you also know he was scheduled for a liver biopsy. While I was at the rental trying to sleep off a cough and sore throat that tried to attack me last night, Patrick told me it went smoothly and fairly quickly. And the funny thing, when he came out both eyes were open instead of swollen shut. He's also had more energy today and has been binge watching Go Diego in between short naps. He's becoming more vocal with lots of little hums and sighs. Lots of super cute yawns. However, the old teeth grinding has resurrected. Not sure what that's all about. He is also peeing and pooping all by his little ol' self. This is huge since the liver and resulting edema meant an infusion and a med to make him pee and to retain the water in his blood so it wouldn't leak out. As I understand, his body is doing it mostly on its own now. They also took the catheter and foley out, and he just has a diaper now! He's still slightly puffy maybe, but WAY better than when we brought him in. So anyway, everyone seems hopeful he is on the mend. Still don't know what caused it. Prelim biopsy results maybe tomorrow with final results in a few days. Their biggest concern now is the worry that it seemed to happen so fast, and how to prevent it from happening again now that we know the liver may be very sensitive or compromised. This is a positive post! So please share with anyone that might be spiritually or emotionally invested in him. And we just thank God as he continues to carry us through, whether the report be dire or hopeful."
"...so far. Also, the docs seem to feel lucky that this case went the way it did. They don't always end this way. Basically if we had delayed bringing him in any longer... What does this mean since he survived? It means we get to learn all about the liver. It means no more ketogenic diet for seizure control, and his seizure meds will all have to be reevaluated. It means I'm tired and not sure I'm ready to take on a new diagnosis or disease."










"...huge blow out that probably happened during his last seizure. It. Was. Nasty. Up his back, all up and in and on his brace. It was all hands on deck and we used soooo many wipes. We flossed the nooks and crannies of his brace with wet wipes, but there are still smudges and places we couldn't get to. Could you imagine if that happened in the 3 hour flight?! 😆 We had a huge entourage waiting for us when we arrived. They were all talking about how impressed they were with the docs in Texas and how thorough everything was and how everyone already felt like they had a good handle on what has been going on. He got weighed and has had an X-ray. He just got a new IV, and he was NOT happy about that. Waiting on feeds too. He hasn't had any food or fluids since we left Galveston. I forgot some things move a little slower in a big hospital. We had gotten spoiled in Galveston where supplies mostly appeared quickly, and docs were right outside the door. Is it weird I'm going to miss them?"


"...It's the never ending song..."






"...connected to the oximeter tonight. I've unpacked, received new supplies, figured out new food and med routine, and he's tucked in bed. Unfortunately the Dora The Explorer "We Did It" song has been going through my head all night. I'm attaching for your enjoyment too."
The next 3 weeks were very challenging not only because she had to care for this little guy who had just had surgery and been brought back from the brink of death, but she had to do it alone (with sporadic nursing help) because not mentioned in her Facebook posts was the fact that her husband ended up going to the ER and being hospitalized about halfway through the stay at PCH. She was in the middle of trying to recover from her own bout with the flu when she got called by hospital staff to return to PCH to take his place. She saw her husband for a total of two hours over the next 3 weeks until he got discharged himself.

-------------

While there are three parts to this story, she wrote the first part about a week after coming home and posted the second and third parts almost 2 months later. She was quite bitter and shell shocked when she wrote the first part and considered revising or removing the first post since her words contained quite a bit of sarcasm and disdain for medical technology and interventions. She decided to leave it though. She feels the words and tone were exactly how she felt at the time, and often how she feels when her son's care becomes beyond difficult. She has a love-hate relationship with medical technology and interventions.

It should also be noted that this experience has pushed her towards pursuing palliative care when considering the need for future interventions. She feels this has always been how she thought she was handling these decisions, but she's ready to make it official and get a team on board.

Wednesday, March 15, 2017

Beyond Difficult {Part 2 - SLOB Hip Surgery}



She approached the upcoming surgery like she usually did when something major was going on with her son. She posted an announcement/prayer request on his Facebook Support Page. In doing so she could keep those who wanted to pray for him in the loop as things came up. Many people like to know specifically what to pray for while others are looking for confirmation that their prayers are answered.

It also serves as a source of support for herself when she can read their encouraging comments immediately while things are happening, and it serves as a journal she can reference later when she has more time to process if things are moving at a fast pace.

She figured it would be a run-of-the-mill surgery. She'd post a before picture, a few stressful updates during recovery, and a happy going home picture. She had no idea how wrong she would be.

"...the doc in TX says it's only a matter of time. His opinion was to do another surgery called SLOB that should lock in his hips for a long time. We had planned it for next March which is why I hadn't mentioned it yet, however, it has been bumped up to...gulp...next week on Dec 22! We have been scrambling to make all the arrangements, and everything seems miraculously to be falling into place. That doesn't mean I don't have a ton of nauseating anxiety. The first 24 hours are said to be extremely painful. He is scheduled to be inpatient for 4 days after. Please pray for excellent pain management and for my sanity. I've found the hardest part of parenting Austin is listening to him in pain. I'll try to keep everyone updated. It's still a little surreal that this is happening so soon. I'm attaching a link that describes the surgery: http://www.pediatric-orthopedics.com/…/Innom…/SLOB/slob.html"






That night after they got settled in, they propped him on the couch wearing his brace with a pillow between his legs. He was so funny because he kept kicking his legs until the pillow would land on the floor. Then he would giggle when she had to pick it up and put it back. They played this game for awhile.

The next day she and her husband took him to the pre-op consult with Dr. Yngve. She remembers going over all of his medical issues in detail while Dr. Yngve asked questions and took notes. It took awhile and at the end of the appointment, Dr. Yngve turned to them and with a deadpan look on his face, says "You know he's complicated, right?" They laughed nervously.

They left and returned the next morning for the surgery.









"...a pretty low rate. I'm also seeing short seizure activity. And he hasn't pooped yet probably due to the morphine he needed the first couple days to stay on top of the pain and plus the anesthesia from surgery. So the seizures and vomiting could be caused from not pooping or the vomiting could be caused by seizures... Anyway, the puzzle isn't solved yet. I was kind of hoping we might get discharged today bc I was feeling more confident in my ability to care for him. We meet with Dr. Yngve in the morning, ha, probably in just 3-4 hours from now, for him to remove the numbing "balls" that have been delivering local medication to the hips. So who knows what will happen then anyway. Leave it to my kid to be the complicated case. Always. We had to laugh when in our pre-op appt, Dr. Yngve pauses and says, "You know he's complicated, right?" And we were like, "Oh yeah. We know."
"...were considered. And they made plans to try to figure it out including an abdomen X-ray and making sure his pain meds and muscle relaxers were on schedule. About an hour later we finally got poop 💩 so we could cross one thing off the list. We still didn't restart feeds at that time. So he has currently been off feeds for about 12 hours now. But he is still randomly waking with a short spike of heart rate, then a little cough, and then he tries to vomit. Not sick bc it's so spread out, but could be nauseous from pain. The local numbing "balls" were also removed this morning along with a visit from Yngve. Sounds like at least one more night of stay to see if new regimen of meds will work so we can manage at "home". We are going to try to restart feeds this afternoon with the new pain management regimen. If at first you don't succeed, try, try, again. Oh, and I should mention I put out my S.O.S after my "breakdown" to Patrick and he rushed to the hospital to rescue me. I got a clean shirt, breakfast, and eventually, a four hour nap! He's my hero."
"...all together. I feel like crying only bc of the peace I feel right now. Thank you so much for all the prayers and encouragement these last few days. It's definitely been a lifeline for me to share what's going on and feel like you guys have our backs. Have a great Christmas Eve, everyone. I hope to report even better news tomorrow. 😊 (P.S. There's a chorus of crying babies and children in the background as I write this. Please pray for all these other families caring for their sick kids tonight, and the hospital staff that are working tonight and Christmas Day.)"
There were so many little things here and there that the docs and nurses had to deal with while caring for him that not every little detail made it to the Facebook posts.

One thing she did not record in the posts was that the docs had been concerned that he had low blood sugar levels. He always has fairly low and steady levels being on the ketogenic diet, but his were lower than the usual fasting level so they had given him glucose or something through his IV to raise his blood sugar to his baseline.

Another thing that didn't get recorded was that he had swelled up and become very puffy. She probably didn't mention it because he always has a little edema when hospitalized and on IV's. The hospital staff usually give him some kind of med that eventually makes him pee so that the puffiness goes away. So the next day she didn't worry too much that he still seemed extremely puffy. He was off the IV's, and they had given him another dose of the anti-puffy medicine which resulted in a wet diaper.

Everyone, including herself, was busy anticipating discharge. She sorted and packed all their belongings. Docs came and went with updates, nurses and therapists scurried in and out making sure all the orders, meds, and supplies were ready for the anticipated flight and return home 3 days from then. She was so excited that her family might all be spending Christmas together that night that she tried not to overthink the fact that he was very sleepy and still puffy. She assumed he was sleeping because he wasn't in pain and hadn't had a lot of sleep in the past couple days. Well, at least she hadn't.

The nurse came to give his 2:00 pm meds. They decided to give him everything that was due since who knows how long it might take to get settled back into the rental. She didn't want him to suddenly wake up and be in pain after they had worked so hard to stay on top of it. The nurse gave her a chart of when each med could be given next if needed. His next med could be Tylenol at 6:00 pm.

Her husband arrived and loaded him into his Special Tomato jogging stroller. He just sat there unresponsive with his eyes sealed shut. He asked her if that was ok. She shrugged, and said something like "I guess so or they wouldn't let us discharge, right?"


Tuesday, January 24, 2017

Beyond Difficult {Part 1 - To Intervene or Not To Intervene}

"Not compatible with life"
"A drain on our society"

These are the phrases she hears over and over in her mind whenever caring for her medically complex son becomes beyond difficult. However, looking back, although legal, she still could not have killed him before he was born, but maybe she shouldn't have forced him to live after he was born either.

She had her chance to avoid life getting beyond difficult. The doctors had said, "His diagnosis is not compatible with life" and "He'll be a drain on society." "Take him home and give him comfort care," which basically meant take him home and let him die with the aid of hospice and morphine.

Die?! She couldn't take him home and let him die! How dare they suggest she take him home and let nature take its course just because his body is not compatible with life.

But guess what? They were right. His body is NOT compatible with life. He has an overriding brain malformation which at any moment could just tell his body to shut down, but in the mean time, it causes a condition called dysphasia which means he cannot swallow without aspirating food into his lungs. When she tried to feed him by mouth it created enough pain so that he refused to swallow and probably would have ended up with chronic pneumonia if he continued to try. He was destined to die from either starvation or some kind of lung disease.

Therefore, he would not be alive today without the medical technology and intervention of a g-tube. She forced him to eat when his body could not naturally perform that function. And once she made that choice, she could not change her mind later when things got beyond difficult. It was a one time decision that she can never go back on lest she be accused of negligence at minimum or murderer at maximum.

So now that he had officially become a drain on society with all the expenses of medical technology that entails, she has to play the game of picking and choosing which medical interventions will give him the best quality of life on top of the general maintenance and costs of keeping a medically complex child healthy which includes an abundance of healthcare and mobility supplies and medications as well as hospital stays for common illnesses because they turn into life and death situations so quickly.

She had to choose to get a shunt, a high tech valve implanted in his skull with a drain tube snaked into his abdomen, when his head kept increasing exponentially in size because the fluid around his brain didn't drain on its own from his skull. At the time of his surgery, it was not yet considered a life or death situation. There are cases of children living years with enormous heads from hydrocephalus. But they can't lift their head, and the pressure inside the skull can be painful, and caregivers have difficulty moving and caring for a person with an immensely large head so they elect to have brain surgery where a shunt is implanted to drain away this excess fluid before the head size gets out of control.

She had to request a suction machine to remove excess mucous from his mouth because although he was not eating by mouth, his body still generates its own secretions along with the occasional reflux of stomach contents which he tries to swallow. Because he aspirates when he tries to swallow the secretions and refluxed food, he was still experiences pain along with dropping oxygen levels with the chance of pneumonia. By jamming a small plastic vacuum tube into the back of his throat and along the sides of his mouth while he fusses and squirms, she can help his airway stay clear,  prevent his O2's from dropping for too long, and stave off respiratory illness.

She's had to choose to do another brain surgery called a fenestration where they go into the brain and poke holes in all the non-communicating fluid filled cysts to force them to communicate. Basically the shunt was not able to drain the fluid from these cysts because they were closed off from the other fluid filled areas. They were continuing to grow and put pressure on what brain exists, continuing to cause pressure, head growth, and additional seizures.

When X-rays showed signs of developmental dysplasia of the hips, again not a life or death situation, she chose to get a relatively non-invasive surgery called SPML along with a hip orthotic/brace in hopes of preventing complete dislocation of the hips along with the anticipated accompanying pain.

When that didn't fix the joint migration, she chose the next level of hip surgery with the unfortunate acronym SLOB with the hopes that it would prevent the hip joint from dislocating so she wouldn't have to resort to the very invasive bone-cutting procedure called a VRO. The surgery typically has a four day inpatient stay, followed by a 3 month recovery using a movable brace instead of a cast to prevent loss of range of motion and to promote healing. It was going to be simple, and just another one of those medical interventions that she has had to choose from that would increase his quality of life while draining society.

Sunday, January 22, 2017

There Was Only Time To Survive

Shell-shocked.

She's always had words in her head during times of crisis, physical or emotional. Questioning words. Analyzing words. Angry words. Despairing words. Story words. If she could get these words out of her head and written down, the experience has a chance to become more manageable, endurable, laughable even.

But this past month it was all she could do to stay in the moment and not give up. Rest was elusive, and there really was not time to sit and process the situation, there was only time to act or sleep.

Really, only time to survive.

But now as the clouds are slowly parting, and she's getting glimpses of her normal again (even though one of them is still in the hospital), she needs to decompress. She needs to write. She needs to unload this past month and try to make sense of it. She needs to process everything she has thought and felt so that she can move on or let it go.

Yet, she has no words. She's shell-shocked. She's stunned. She's been attacked, kicked in the gut, discarded in the corner of the alley.

Events of this past month have caused her to go back and question again these past 6 years. She's analyzed the crucial decisions. She's gotten angry over naive hopes, and she has despaired over decisions made in faith.

She doesn't know where she stands anymore on a few perhaps moral or ethical issues, and she's not sure those around her, whether it be her family, church, or special needs community (especially them), would support her voicing her thoughts on these issues out loud.

So perhaps that's why she feels she has no words. Perhaps the words she does have aren't palatable or relatable or acceptable, and therefore she fears writing them down.

She might be alone with these thoughts. And being alone is a scary place for her.