Tuesday, May 3, 2016

Abby's First Hospital Stay

I curled up behind Abby's bed to the sound of the ventilator breathing for her. It was a mix of relief and numbing fear. I opened my CBS (community bible study) lesson to catch up from the past week, and the title was "Call to Courage". Silently the tears ran in streams down my face as I tucked the earbuds into my ears and pressed play because "All a girl needs in the night is her God." (Ms Understood)

(If you haven't read my last post, stop and go back here because it really sets the stage for Abby's hospital stay. We were pretty beat up before we even took her in.)

It all started with an increase in agitation that developed into yelling, trying to pull the fan off the ceiling, throwing her food and attacking anyone within reach. We didn't know what else to do, so Easter Sunday we headed to the ER instead of church.  The doctor didn't even come in the room because she attacked anyone near her. Instead she handed us some restraints, and the kindest "tough guy" nurse graciously took care of us in the sweetest way possible while he was attacked.  After several hours we found she had a UTI (urinary tract infection). With an admirable effort to calm her with no success, we wrapped her up and headed home praying the meds would kick in soon and knock her out. Evidently, people with "diminished capacity" can have a sort of psychosis with a UTI. We figured we'd have to just wait it out?

They next day, Monday, was the calm before the storm. She slept pretty much all day. It was a nice reprieve and a relief to know we had a cause for her craziness. Tuesday arrived and angry Abby was back in full swing. We took her back to the ER for a new IV antibiotic a calming drug. They decided to admit her to make sure it was all working. She eventually calmed for the night and by noon the next day, Wednesday, we were even able to take off the restraints.

Two hours later all hell broke lose. The drug used to calm Abby so well the night before, Haldol, caused a severe dystonic reaction. Her whole body was spasming and contorting, unable to straighten. She was awake the entire night as they futilely tried to stop the spasms and calm her little body down. They even did a CT to see if she was having seizures because the reaction was so big. Early that next morning, Thursday, the sweet nurse that battled all night with the Doctor and Andy to help Abby, pushed her into the PICU (pediatric intensive care unit). Even though they eventually found a med cocktail that would knock her out for a short period of time, the dystonic reaction continued for a few more excruciating days. She would eventually cry out every time the spasm would come as her body was so tortured. Think continued charlie horse over several days. At one point her oxygen was even falling because the spasms were constricting her airway. It was the most pitiful, heart wrenching thing to helplessly sit by and watch.  I know it was only the prayers of our people and a really BIG GOD that willed us to endure those days. I had to trust Him to carry her because I could not.

During the two hours she'd get of rest with the valium shots and other drugs, the intensivist found a bowel impaction (thought it was an obstruction at first). He said it was very painful, so they needed to be aggressive with treatments get things moving. By Saturday night things still weren't moving and she had started wearing off the skin on her elbows and her voice was hoarse from the screaming. It took four nurses, my dear friend and me to do the last enema attempt, catheter, and a new IV since she had blown three others with all the meds. That night was the closest I've ever been to checking myself into a padded room.

She slept little that night and by morning the meds had stopped working at all. I sat by her bed and wept. I didn't know how much more her body could take. My cup was empty. A friend showed up with coffee and we gathered around her and cried together as we prayed.

The only answer now was to intubate her to calm her down. I left the room as they put her into a medically induced coma. We knew it was necessary but a new level of complete helplessness washed over me.

The next day her lung collapsed and a few days later a bronchoscopy was done to try to clear things up. It took most of the week and a half to get that back in working order. In the meantime, her bowels cleared out with a "graphing" procedure done by a surgeon. That was followed by an Ileus, which is basically a paralyzed colon. After about a week on IV nutrition, they put an ng tube down her nose to see if putting some liquid food could jumpstart them into working, An MRI was done as a follow up to the spot that was found on the CT scan. It gave us a scare for about a day as a cyst was found, but we "put it on a shelf" to deal with later as it didn't seem to have any bearing on what was going on now.

Her lungs started working into the next week as they started weaning her off the vent for the first time. She had graduated to the apnea mask all in one day when something went wrong and her oxygen dropped to nothing as she turned blue. Thankfully I was spared that scene but dad was there. After that they gave her a day to rest before trying it again. The next try was successful and another hurdle passed before us.

She woke up pretty much paralyzed. She couldn't even hold her head up. She seemed to reach for us until we noticed she reached for anyone at her bedside. I was crushed thinking my Abby was gone. There were many private tears that week as Grandma left and Heidi came in. Danielle had spent her entire time with us as she was under. I gave up trying to be strong and just cried again. It was really too much to take in. The next few days she went through withdrawals complete with agitation, constant vomiting, shaking, fever, crazy low heart beat and high blood pressure. So many intense highs and lows.

Speech therapy came into see her and she aspirated again with her stats bottoming out because she was too weak to control her swallow and protect her airway. She went for a swallow study and failed it. Physical therapy came in and it took two of them to position her to prop her up. She asked me about the positioning equipment we had at home and how many stairs in our house. I'm not new with equipment and went into panic mode. I was new with being this sick and knowing what to expect, and I really thought she may not move again.

Despair was knocking at my door, but God's grace surrounded me with so many sweet folks who held us up and prayed us through. Every day she improved with her strength until she was trying to climb out of the bed (she would've fallen on the floor). Once again we had come full circle and she couldn't be contained without restraints or drugs and neither would've helped her at all. The decision was made to let us go home with the PICC line to see if being in a familiar place would calm her. We all knew she wasn't eating or drinking enough to go home, but we had to try.

That first night Andy and I broke down together as she didn't calm down at all in her bed. She was agitated and restless. She was trying to stand up when she totally couldn't. She had to be watched constantly and I still wasn't sure she recognized any of us.

After that night, I stopped crying. I usually give myself time to grieve and then dry it up (for the most part) and tackle what is ahead. I made doctor appointments, tracked records down, got to her pediatrician in Columbia to help with a plan, and set up therapy evals (thanks to Millie we already had sweet connections).

We've seen Millie's neurosurgeon in Charleston and he wasn't a bit concerned over Abby's MRI results. He said it's not even a cyst. We got in to see a GI the same day and despite losing ten pounds and not eating/drinking much he thought she looked surprisingly well. He was willing to give us a month to get her back into shape before we talked more about a g-tube. Physical therapy and speech therapy are on call as the only thing they can do is encourage her to move and eat. Since we can do that, they really didn't need to come out unless she got stuck or stopped progressing.

I want to say it's been a slow road to recovery, but I actually think it's been quite fast. She's up and walking now, eating more and even taking drinks by herself. She got back on the bus this morning to go to school. Her previous shadow had quit about a month before Abby went into the hospital, so our Lucinda decided to go to school with Abby too! What a sweet gift. God always provides.

...As I finished my CBS study the first day on the ventilator when all felt so hopeless, there were several quotes our teacher, Stewart, the Lord used to inspire me to keep moving forward. I pray they will encourage your heart wherever you are today.

  • "The only way to lose is to quit"
  • "What do I treasure most and have I given it to God"
  • "How I suffer matters"
  • "Courage is not the absence of fearing but walking scared" 
  • "He has already given me everything I need"

God's blessings always outweigh my struggles...
     Stay tuned for my next post on His amazing blessings through this time.

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