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."
" 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 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:…/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?"