Alex at the rehab hospital after just relearning how to sit up.
You can really see his facial palsy and the result of the injury to his third cranial nerve (which controls his left eyelid)
Alex and I just before his eyelid surgery. The surgery was meant to help him open his eye a little so he would completely lose sight in that eye.
Trying to be a happy boy. This was when we were still at the rehab hospital.
You can see the lovely ng tube in his nose.
Alex and Daddy cuddling at the rehab hospital
Alex at the rehab hospital
Alex and his puppies in the PICU
Alex relearning to pull up during physical therapy
Thursday Alex woke up with a high fever (104) and it would not go down. I took him to the ER where I was told he just had an ear infection and they sent us home with some antibiotics. That night he started throwing up and continued to do so early the next morning. I called the pediatrician and they instructed me to take him to urgent care because they could give him fluids there if he was getting dehydrated. We were told at urgent care that he did not have an ear infection just a stomach bug and he was given anti-nausea medicine and pedialyte and sent home. As the night went on he was really sleepy but who wouldnt be after being so sick for two days. Early Saturday morning he was so lethargic and extremely hard to wake up. I rushed him back to the ER and they did a spinal tap revealing that he in fact had bacterial meningitis. After an ambulance ride to St. Francis Children's Hospital he was intubated and heavily sedated. We went on like this for several days. The next Thursday the doctors decided to turn of the sedation and let Alex wake up. This was suppossed to be our first indication of how much damage had been done by the meningitis and subsiquent inflamation. We were told the sedation would wear off after four hours. When four hours went by and he was still not awake I started to really panick. The doctor told us sometimes it can take up to six hours, so we continued to wait. Six hours, then ten, then twelve hours passed and there had not been much change. I don't think I have ever prayed so hard in my life and we have had a rough and very prayerful year already. Finally over the weekend he started to wake up a little and move his arms and legs. Alex could open his right eye and that pupil was reacting but the left was not. On Tuesday the doctors decided try and extubate him again ( the first time he had so much airway swelling that he could not breathe and when they were re-intubating him he coded). This time things went a little more smoothly and he was successfully extubated. He began to move his arms and legs a little more, but could not longer sit up or even role over. We also noticed that the right side of his mouth was droopy and would not move at all the few times he attempted to smile. He also could not open his left eye. We knew that he could possibly have some nerve damage from the meningitis and it was becoming apparent that he did.
Knowing Alex needed a lot of rehab the doctors discharged us from the PICU and sent us to an inpatient rehab hospital in Bethany. While in Bethany Alex received physical therapy, occupational therapy, and speech therapy several times a day. He made an extremely quick recovery when it came to his gross motor skills. After being there one week he could finally sit up again on his own with just a few wobbles and was trying to crawl again. He was however still being tube fed through a nasogastric tube. He was not interested in eating or especially drinking at all. It became apparent that this would be one of our biggest hurdles. He had a facial nerve palsy on the right which left him unable to suck or eat efficiently. I feel like he was so frustrated and it felt so different and hard that he wanted nothing to do with eating and drinking. I don't know exactly what he was feeling but that was my best guess from observing him. He also still could not open his left eye although he sure tried to pry it open by raising his eyebrow as high as he could. It was devastating watching him struggle to relearn simple activities that he had previously mastered and he was constantly agitated which made therapy session seem pointless sometimes. Many of the sessions he just ended up crying in my lap not participating at all.
After two weeks the therapists and doctors decided to discharge Alex so he could finally be home with his brothers. At this point he had not been home in a month and I had barely been home at all either. There were a few days when Justin stayed with him so I could see Connor and Cade, but basically I felt like I had missed out on an entire month of Connor and Cades lives. Thankfully I have AMAZING parents who dropped everything and moved into our house for a month to take care of Connor and Cade.
We were so excited to have our family back together, but it was a little bitter sweet because Alex was still being tube fed and not even close to where he was physically before the meningitis. I should also mention that I was left in charge of Alex's tube feedings which included replacing the feeding tube whenever he or one of his brothers pulled it out. Despite our best taping efforts it did come out often. We would have to hold him down kicking and screaming and thread the tube up his nose and back down into his tummy every time it came out. I can't even begin to explain how terrible it is to repeatedly do something like that to your child, but given the situation we had no choice. Without that tube he would starve and get dehydrated.
We started outpatient speech therapy to try and get Alex eating and drinking so that we could get rid of the ng tube. Slowly but surely he started eating, but it was clear that drinking would be our biggest challenge. He screamed at the site of a cup or bottle. His facial palsy eventually started to improve and he finally started drinking a little from a bottle and occasionally would accept a cup. Even now I have to keep track of how much he drinks to make sure we get enough fluids in him. I basically carry a cup around all day offering it to him.
Alex is still has a long way to go but overall has made a seriously miraculous recovery. Every time we see a new doctor or therapist, they are amazed that he can do the things he is doing. I attribute all of this to the power of prayer. We were blown away by the support and prayers that were given and said for our family. God truly is hearing and answering those prayers. Please continue praying for our sweet boy and we will keep you posted on how he is doing.
