The Johnson Family

Wednesday, September 23, 2015

Update on Ian

Wow, I haven't gotten on here in YEARS! But it seems like the best place to get information to friends and family who have been so sweet to check on us. So let me start by apologizing. I haven't been ignoring you. The truth is, I'm really struggling with the question, "How's Ian doing?". I WISH (oh, how I wish more than anything!) that I could simply respond, "He's doing great! He's home from the hospital and everyday he is doing better and better." I mean, don't get me wrong, he is doing really well. We are home from the hospital and he is making improvements everyday. BUT....that's just the thing, he's doing great until that moment that he isn't. Because it's not really a matter of 'if' he'll have another seizure, but 'when'. And we never know when it will happen or where we'll be when it happens. I feel like there's a ticking time bomb inside his head and we are trying to live our lives in constant anticipation of when it's going to blow.

It was exactly one week ago at about 8:00 pm that we rushed Ian to the ER because he started seizing at home and was completely unresponsive to his rescue meds. There, he was pumped FULL of medicine, one syringe after another--through 2 IV's (one in each arm), through his nose and even rectally--yet still, we couldn't get it to break. Words cannot describe how helpless and heart wrenching it is as a parent so sit there and watch your child's little body laying on a table, convulsing like that, and not be able to do one single thing to stop it. This went on for about an hour and a 1/2 until all of the sudden Ian's O2 levels dropped and I watched all of the hospital staff spring into action, with obvious concern on their faces. I held my breath and looked away while the doctor intubated my baby and I just prayed and pleaded with God that he would please save my son. I kept having these flashbacks of standing just outside the doorway of my dad's hospital room, hugging my sweet mom, and saying the same kind of pleading, desperate prayers. I thought I was going to lose my baby just like I lost my dad.

We were life flighted to Primary Children's Hospital where he continued to seize and so they put him on a drip of Propofol, basically to just sedate him. Several times they had to increase his dose ('til it was almost triple the amount) because he kept convulsing and fighting even though he was tied to the bed. Then they placed dozens of probes on his little head to get an EEG and we waited. All night we stayed by his side, sleeping in a chair and standing over his bed holding his chubby lifeless hand. Watching for signs of more seizures, watching his oxygen levels and his heart rate. It was a very long night.

The next day we waited and waited to talk to doctors, got more tests, got an MRI, and then at about 2:30 they decided to stop the Propofol drip and let him wake up. This is the moment Andy and I were dreading. Would he wake up and still be our sweet Bubba? Would there still be that same light in his eyes? Would he have function on his right side? Would he be able to talk? Walk? See?

We stood over his bed and watched anxiously. We waited and waited and waited and still he did not wake up. Fear and worry enveloped me. Finally, FINALLY, he started to stir. His eyes were so heavy and droopy he could barely open them. He tried to cry. His little face scrunched up and turned red but no sound came because of the tube down his throat. I watched little tears silently stream from his eyes and pool into his ears. He tried to cough, he tried to fight, he was getting frantic but we couldn't remove the tube until he was awake enough or he could fall back asleep and stop breathing. Again, I was forced to watch this little boy that I absolutely adore with all my heart, writhe in agony and there is nothing, nothing I can do. When they were finally sure that he was alert enough, they removed both of the tubes. The breathing tube from his throat and the eating tube from his nose. I carefully picked him up, trying not to tangle or pull on any of his IVs or chords. He was so limp. So floppy. He couldn't even hold his own head up. I had to hold it in place like you'd hold a newborn baby's. He was extremely agitated and angry. He didn't want me to hold him and kept trying to push my hands away so he could get down. Yet if I even tried to have him sit up, even with my assistance, he would flop over like a rag doll. We fought like this for hours. HOURS! Andy and I tag teamed back and forth trying thing after thing to help sooth him but nothing worked. We tried to distract him with movies, toys, books, songs, pictures, standing, bouncing, anything we could think of. He was exhausted but he WOULD NOT sleep and he would not calm down. At about 9 o'clock pm, I think our PICU nurse got sick and tired of us and transferred us to the neuro trauma unit. We found a stroller in there and put Ian in it, not because it soothed him, but to give our arms a break! It's quite a workout holding a squirming, arching, screaming child--felt like wrestling a greased pig--not that I've ever done that before, but I imagine that's about what it's like :)

My dear, sweet, amazing husband was an absolute angel to Ian and a hero to me. When I had reached the absolute end of my rope (and I do mean the END--I was seriously ready to run to the end of the hallway and jump through the window!) he sent me to get some sleep while he pushed Ian up and down the short halls of the trauma unit for at least 5 hours. From about 9:30 pm to about 2:30 am he walked, pushing a crying, screaming, hysterical, drugged infused baby. FINALLY, at about 2 o'clock in the morning, Ian dozed off and at 2:30 I tagged in and pushed Ian through the halls for another 2-3 hours. Anytime I tried to stop, he would stir so we had to keep moving. I remember after several hours I literally just parked him in a tiny, dark waiting room, I laid down on the floor and instantly fell asleep....until he started to stir again and I jumped up and started walking.

The next day Ian was still a disaster and Andy walked with him for another 2-3 hours to get him to calm down and sleep. Andy probably walked 8 or 9 miles up and down that little hallway during our hospital stay.

It took about 3 days after we got home before Ian could walk or stand up even. His little hands were so shaky could barely pick up a Cherrio let alone get it in his mouth. We doubled his daily meds which are a hard adjustment on his little body so he's sleepy and temperamental a lot, which is unusual for our cheerful, smiley guy. We hope it's not permanent.

So in answer to your question, YES! We are home from the hospital and YES! Ian is doing really great. BUT!!....the second he starts on another seizure (which are getting more and more frequent), we will be right back there in the ER. And everyday, dozens of times a day, Ian has these 'zone out' moments where it looks like he's going to slip. And my heart stops and I'm freaking out and ready to jump in the car and rush him to the hospital. At the time being, I spend every moment right at his side, watching his every move and trying not let to anxiety completely take over me.

Yesterday I sat across the room from our neurosurgeon who informed me that #1--Ian's MRI showed another irregular area, which is growing, and may be a tumor. And #2--He told me, we need to start taking the steps to prepare for surgery to remove or disconnect the left side of Ian's brain. There is really no saying what the outcome of such a surgery will be and what complications or handicaps that could bring. We watched Andy's beautiful mother go in for brain surgery just 3 years ago and there were complications and she was never the same. We love and miss her so.

Andy and are trying to be faithful and trying to accept the will of the Lord and pray everyday that he will guide us in making such a difficult decision as to whether to get the surgery or not. Though we may end up backed in a corner with these drug resistant seizures and not really have much of a decision at all.

We have really appreciated all of the love and support we have felt from all of you over the past week. Our friends and family have been amazing and taken excellent care of us. If we could just please ask for one more favor and that is to please pray for our Bubba. We love him so much and more than anything we just want him to live a happy, fulfilling life. I pray that Andy and I will have the strength and the faith we need to get through this and that we will be guided by the Lord to make the best decisions for His child that we have been blessed to love.

Wednesday, July 13, 2011

Dear John Blog,

So, this is awkward.

I don't really know how to tell you this, but I think we need to take a break from each other. No, don't cry! It's not you, it's me. O.K. maybe it is you.

You just expect more time and attention than I can give you at this stage of my life. Now that dental school is over and we live close to family again, I think I just need some space, you know?

So this isn't necessarily goodbye forever. In fact, maybe someday down the road we'll hook up again! I sure hope so.

But until then...

Can we still be friends?

Monday, June 13, 2011

Our cross Country Trec HOME!!

So we bantered back and forth for while about how we wanted to execute this move across the country. There's a lot of things to think about! But we finally decided to avoid the hassle of Andy driving a gigantic moving truck and me falling asleep behind the wheel of the the Pilot with a fussy 2 year old, and just shipped our stuff through ABF. Great decision. They are also storing our stuff for about a month or so until we find a place to live. Excellent!

(at the BWI airport)

So London and I flew with my mother-in-law, while Andy and his dad drove the Pilot with Isaac and Lex. Again, great decision.

(Isaac on the phone with me in Utah Ü)

I was little worried about them but they had a great time! The 1st day they drove through Pittsburgh and stayed near Kirtland, Ohio, where they were able to check out the temple.

The next day they drove through Cleveland and stopped in Indiana. One of Andy's good friends is getting his PhD at Notre Dame so they took a little tour of the campus.

Touchdown Jesus!

They drove through Chicago, Wisconsin, the twin cities...

(There are some things I'm not proud that I've passed on to my children...)

The 3rd night, they stayed in a hotel with an indoor water park in Fargo, North Dakota. They had a blast!

The next day they drove through to the Teddy Roosevelt National Park where they were able to see lots of fun animals....

...like this bison here, that Andy was so brave to pet.

Nice try, Isaac, but I'm not fooled.

A look at Andy's new toy. Fully installed and full of crap!

Their last night was spent in Montana. They were planning to spend the day in Yellowstone but that plan was thwarted by a nasty blizzard (what the?! Isn't it summertime?) so they just zipped home instead. 5 days in all & a great experience. It's so good to be HOME!!

Fun with Papa and Gramma

I'm trying to wrap up my blog posts from Maryland and I think I've about finished, but I have a handful a cute pictures from Papa and Gramma's visit that I couldn't resist posting. We were quite busy with packing and graduation but we still had plenty of memorable moments.

I love this picture

Installing Andy's graduation present!

Papa said that he makes it a point to buy a Thule for every one of his children graduating from dental school. Ü

On our way to Rita's

Now that's just cruel!

It's an Isaac sandwich!

Wednesday, June 1, 2011

That's DOCTOR Andrew Johnson to you, Bub!

What a proud moment this was! I was overwhelmed with emotion as I watched Drew get hooded. I think because I witnessed, 1st hand, the amount of diligent, hard work it took him to get here. Years and years of stress, financial worry, and lack of sleep. How many nights did I leave him studying at the kitchen table as I went up to bed alone? How many times has he lost his appetite, sick with worry, over a test or finances? How many mornings have I seen him drag that backpack out the front door? How many times did I go Christmas shopping for the kids by myself because he was cramming for finals? How many cases of Mountain Dew has he plowed through over the years just to get through?

Let's just say, more than I can count. But all of that is no more! Because...

We.Are.DONE!!