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. Here's some of her Facebook posts:
"December 26, 2016 · Austin was discharged from hospital yesterday and we had to return to ER last night bc he had severe edema, low O2s, lethargic, etc. They admitted him to PICU. They have had every specialist look at him and run tests. The doctor says he is critically ill. They are thinking a virus is causing all this and affecting his liver causing it to not work right. Because it involves his liver not working right, they can't give him any meds that would be processed through the liver. 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."
"December 27, 2016 · About 4 hours after I wrote the last plea for prayer (around 4:00am on the 27th), Patrick called me and said they had decided that for his comfort they needed to give him some Roboxin (a muscle relaxer). However, because every single sign and symptom showed his liver was shutting down, giving him a med that would be processed by the liver could kill him. But the thought was that if we could somehow take the edge off, he could focus his energy on overcoming this virus or whatever it is, and 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."
"December 28, 2016 · Today was a watch and wait day. So, slow. They've been taking labs every six hours to watch all his levels. His liver seems to be slowly recovering they think, however, he still has not really woken up. Still 30% puffiness. He is actually on zero meds except an antibiotic now. This is to protect his liver from further damage and give it a chance to recover without having to work too hard. There is still talk of "having conversations about liver transplant option". The amazing thing is that his 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."
"December 29, 2016 · Are you ready for this? The docs are saying most of his numbers (although still high) are trending towards normal! (One doc, at 4:30am on Wednesday morning after a couple of numbers that had gone up earlier that night started trending back down, had said, "we have no idea why.")
So after the slow Wednesday I've already reported on, the only glitches I've seen are a few seizures popping up last night. As you know he is currently unmedicated and off his keto diet. The seizures 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."
"December 30, 2016 · Just wanted to post really quick to let y'all know that the prelim pathology report from the liver biopsy showed 1/3 of the liver was in necrosis. They could also see collagen/scarring from previous insults. When he was brought in on Sunday night his tryglicerides were over 900, and some of his liver enzymes were elevated 30-40 times what they should have been. He was definitely in liver failure. And we only have assumptions to what caused the past and current acute damage 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."
"January 1, 2017 · I just got several smiles and an almost laugh. Happy New Year! #slobsurgery
"January 3, 2017 · Austin is in a good mood. But, we are in a holding pattern, waiting for next step. And waiting. And waiting. (Note to self. Don't get hospitalized over the New Year.) #slobsurgery
"January 3, 2017 · Austin just has his third nose bleed of these last couple weeks. It was barely bumped again, but again resulted in 30-45 minutes of acute trauma care by the doctor and nurse to get it to stop bleeding while suctioning blood and secretions draining into his throat to keep his airway clear. Austin fusses and cries through the whole thing.
Then almost instantly after things are resolved and the Ipad with Blue's Clues is placed in front of him, he goes back to smiling and laughing like nothing has happened.
He seems to know how to leave the past in the past and only live in the present. This little teacher.... #slobsurgery
"January 4, 2017 · On our way to Phoenix Children's! #slobsurgery
"January 4, 2017 · We are here at Phoenix Children's in PICU! He was stable enough to fly and was sent here to be followed by his own specialists so they can come up with a plan in light of the newly discovered liver issues.
He was life flighted on a fixed wing plane, and the flight was uneventful except for 3 seizures, some needed suctioning, and general fussiness and teeth grinding.
It's a good thing too because right before we left the nurse decided to change his diaper only to discover a 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?"
"January 5, 2017 · Happy 6th Birthday, Stinker Butt!
His nurse decorated his door with supplies from the The Confetti Foundation. She also got all the floor docs and nurses to sign a card. ❤️ Phoenix Children's Hospital.
"January 7, 2017 · Back to PICU for uncontrolled seizures. He's also developed a runny nose.
I've been home since 6am yesterday morning with what they diagnosed as bronchitis yesterday (been hacking up a lung for two weeks now) although as soon as I got home I came down with fever and chills, body aches and migraine even though the flu test was negative. So no wonder Austin has a runny nose 😞.
Patrick gets full time hospital duty now.
It's the never ending song..."
"January 7, 2017 · Tested positive for influenza A. Has 103 temp. Patrick says the room is cold bc they are trying to get temp down.
"January 8, 2017 · Earlier today Austin was moved back to 8th floor. His EEG was showing no more seizures, not even sub clinical. So the cocktail they came up with must have worked for now. His liver numbers, while still elevated, are still trending down.
He has a runny nose, cough, and still needs ibuprofen for temperature control. They gave tami flu. He's still on iv drip and haven't restarted feed yet.
"January 13, 2017 · We might be coming home today. I say "might" bc I've been told this everyday for three days. Here's a fun video of Austin FaceTime-ing his nana while still in PICU in Texas. https://youtu.be/gyO7z7hOJFc
"January 13, 2017 · We (Austin and I) left PCH around 5:00pm in lots of traffic and got home around 6:45pm. Austin is home. He's on a bit of oxygen from the concentrator and 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.
