Category: Hospital

In the Hospital!

 

Aaron was in the hospital last week.  Thankfully, this was a scheduled visit and not an emergency like we had two years ago when Aaron got suddenly sick with aspiration pneumonia.  This recent stay was so that Aaron could have a Video EEG.  This testing is an important tool in determining where in the brain his seizures occur, thereby hopefully having some new treatment options offered to him. 

We had determined to make the thought of a hospital visit sound as exciting as possible while also being truthful about the purpose of the testing.  We talked about how we would have time there to watch DVDs; play Skip-Bo; play his Nintendo DS; and ORDER FOOD!!  This all sounded like fun to Aaron, although he would have much preferred to have these same options while staying at home.  I told him that the business of ordering food was not going to happen at home, so off to the hospital we went. 

I gave Aaron his bag to carry as soon as we parked in the parking garage at St. Francis.  I grabbed the rest and we walked to the elevator.  Aaron happily punched the button, and soon the doors opened…….to reveal a rather large man sitting in a wheelchair.  This man was a double amputee, having no legs, and I must say that it was a bit startling to see this.  Aaron just stood there in front of me, and in front of this dear man, staring and not moving.  I gave Aaron a little nudge as the kind man gave a big smile, and told us to come on in. 

“Please, please, please, Aaron,” I thought to myself.  “Don’t say anything you shouldn’t say!!”  Thankfully, Aaron kept quiet as the man and I chatted.  He was so personable and nice.  I’m sure he was used to many stares, and in that respect I could relate to him.  Maybe he knew that.  The elevator door opened and he told us to go on ahead, which we did. 

We walked away a few steps, and Aaron just couldn’t hold it in any longer.  “Mom,” he said.  “That man didn’t have legs!!”  As if I didn’t notice.  I hushed Aaron, knowing that the man was behind us, and so Aaron repeated it again, but quieter next time.  Hopefully the man didn’t hear us.  Later I was able to use that as a teaching moment for Aaron about being kind and polite.  I have no idea if it stuck, because Aaron was immediately off on something else……namely, the bell that he saw and really, really wanted to ring.

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Aaron had to wear button down shirts because of the wires which would be on his head.  He looked so nice, I thought, not at all like he was getting ready to stay in the hospital and have seizures.

Hospital visits for Aaron, I have learned, are very interesting and also challenging.  There are many people who work with Aaron who quickly see that Aaron is unique.  My job, other than caring for Aaron, is to care for those who come under Aaron’s blunt responses……or his silence…..or his attempts at being funny……or his frustrations……and I could go on and on. 

The nurses, the technicians, the doctors……just everybody who saw Aaron…..were wonderful and kind and very understanding.  I’m sure many didn’t totally understand everything about Aaron, but still they were sweet to him and to me. 

The resident who came in every day certainly got an earful soon after we got in Aaron’s room.  Aaron was being hooked up to the EEG while the resident came in to do his assessment, and to ask me questions.  He had lots of questions about Aaron, of course, but Aaron finally interrupted loudly.

“My Mom’s a blabbermouth!!!” he said with a measure of anger. 

I knew exactly what Aaron was saying.  He didn’t like being talked ABOUT while he was sitting right there listening.  However, it just has to be that way sometimes, which I explained as the resident was stifling a laugh.  This resident stifled lots of laughs, and some he didn’t hide at all, during the four days that he saw Aaron. 

Aaron also doesn’t like to be made to feel dumb.  No one there in the hospital did that at all to Aaron, but it was easy to interpret it that way.  Like when he had his first seizure on the second night, and the nurse came in later to check on him.  She asked him to say, “One, two, three, four, five.”  He repeated it, but with frustration, and so she quietly asked me about it.  But it made Aaron feel dumb, he told me later, so I had to explain the situation to both Aaron and to the nurse. 

I was a liaison, I guess.  That could look good on a resume, actually.

So, Aaron was all hooked up shortly after getting to his room.  He also had heart monitors on his chest, so he had both the EEG pack and the heart monitor pack to put around his neck when he got up to sit in a chair or go to the bathroom.  He handled it so well, only getting irritated a few times and REALLY irritated on the morning of dismissal…….which never happens fast enough for anyone, but especially for Aaron.

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He loved watching the EEG lines on the monitor until it was turned off in our room, doctor’s orders for everyone.  It didn’t take him long, as our friend Terri was visiting, to see that when he rubbed his hands together the lines on the monitor became huge and black.  He was really hilarious as he rubbed his hands together quickly and watched the monitor screen darken.  He would laugh loudly before repeating it again.  It was a good thing that the monitor was finally turned off.

When Gary came that first evening, Aaron did get to show him the lines.  “Dad!!  When you were in the hospital, did you have lines?!”  And……

“Dad!!  Get in my bed and see what it’s like!  It HIGHERS!!” 

A bed that goes up and down is such great fun……for at least a day.

His first dinner ordered was:  Mashed potatoes, a roll with butter, and pizza.  He was truly in food heaven!

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He wanted to keep his schedule as much as possible.  We played Skip-Bo the first night, but he got so sleepy that he finally took a nap. 

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He got up at 9:00 to finish our game, but was still very tired.  I suggested bed.  And those of you who know Aaron will guess what he said.

“It’s not 10:00 yet.” 

Silly mom.  Going to be before 10:00!

So I suggested that he brush his teeth.

“Not till 10:00,” he informed me.

Silly, silly mom!

I forgot to bring his deodorant.  Knowing that Gary gets home at 5:30, Aaron said, “When it becomes 5:30, can you call Dad to bring my deodorant?”  He was happy to see it in the bag later that evening.

“Can you put the deodorant on right now?  My chest stinks!”

He loved having Joyce come, and really loved seeing the subs she brought us and the goody bag full of treasures.  His favorite was the sock monkey and the battery operated back massager. 

He talked to Wendy on the phone…….Wendy, whose son has terrible seizures and who totally understands all this video EEG business. 

Aaron told her, “I’m kinda all wired up.  The lines are detecting my brain.”

We laughed, Wendy and I.  But then Aaron said, “They’re trying to discover things about seizures in my brain.”

Bingo!

And that was the difficult part.  To discover things about seizures in the brain, you must have seizures.  So, as Aaron’s seizure drugs were decreased, his chances of seizures were increased……which was the whole reason for being there.  Still, it was hard on Aaron and hard on my mama heart. 

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He did have a seizure, finally, on our second night there and again that next afternoon.  The doctor got the results needed in order to talk about future treatments.  But Aaron’s seizures continue to be what we knew they were from years ago.  I listened to Dr. Lee as he told me the results.

Generalized seizures…….no focal point…..hard to treat……limited options.

But God isn’t limited at all, this I know.  He has a plan for Aaron and for us. 

But Aaron’s plan at that moment was to ask the doctor the all important question:  “CAN I GO HOME???!!!”  Even getting to order food was not so charming anymore.

Aaron was happy, happy, happy to hear that he could go home the next morning.  And on that next morning, he gave the resident a whack on his posterior, much to my great embarrassment……the resident’s great surprise……and Aaron’s great delight.  He squeezed the nurse’s fingers way too hard during her last assessment, and told her that he was tired of her listening to his breath.  He rolled his eyes at the hospitalist when she came in one last time.  He tried to remove his wires on his own, and some had to be reattached, much to his great dismay. 

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But at last, the wires were all removed!!

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The bags were all packed!!

Shoes and socks were on!!

Discharge papers were all delivered!!

The wheelchair arrived!!

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And it was home again, home again……with a stop to get Dad and deliver him to pick up his truck that had died out on the road earlier in the week and was in the shop.  Yes, it was that kind of week for him and for us.  And then a better stop at Taco Bell, and home with nachos and tacos and all our hospital stuff!

Another piece of the puzzle of Aaron’s life and health is now in place.  It’s not the best of news and it’s not the worst of news. 

But no matter the news, we have lots for which to be thankful. 

“Let your requests be made known unto God, with thanksgiving,” the Bible tells us. 

Some days that’s hard to do, but God has a gentle way of reminding us.  Like I’ve said to Aaron since we saw the man on the elevator:  “Yes, you have seizures.  But you can walk!”

And may I add:  Aaron can talk! 

To be continued, I’m sure.

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Home From the Hospital

Friday, June 19, marked a full week that Aaron had been in the hospital for low sodium and pneumonia.  He was feeling better that morning.  He still had a wicked cough, but his fever had been gone for over 36 hours and he was generally feeling much better.  In fact, the better he felt the grouchier he became.  As he felt better, he missed home more.  He missed his life and his routine.  He was more alert and aware of how abnormal this hospital life was for him.  So the better that Aaron felt, the harder he made life for those who were caring for him.  All he could talk about that morning was going home.  He didn’t like anything that anyone tried to do for him, including me.  He tolerated his chest X-Ray, his pills, and his other morning interruptions…..barely.

I saw his doctor in the hall and told her that she better put on her very thick skin when she came to see Aaron that morning.  She just laughed, and I told her I wasn’t kidding.  Aaron was grouchy, in all caps.  GROUCHY!!  And wanting one thing…..home!  So later she came in with a huge smile, and of course Aaron told her immediately that he wanted to go home.  She told him that she had good news for him, then, because home is where she said he could go.  Then he smiled along with her, for the first time that morning, and life was good again. 

Of course, when one of the aids came in a few minutes later, Aaron looked at her and said, “I don’t need you now!”  And I made him apologize, even as she just laughed and knew that Aaron was very happy to be leaving.  He just had a very blunt way of letting that fact be known.  The Occupational Therapist came in to give Aaron a shower and try to give him some shower pointers, but he actually just showed her how he showered and didn’t really listen to much of what she said.  Physical Therapy had Aaron walk up and down the stairs one time, which he willingly endured because it was just another block to check before he headed out the door.  

Soon the wheelchair containing happy Aaron was on the elevator, along with our cart full of a week of accumulated “stuff”, and before long we were in the van, waving goodbye to the nurses and driving away.  Going home at last!  But a stop at McDonalds was first as Aaron asked for a burger and fries on the way home.  We picked up lunch, and headed home to eat and to settle in to the life that Aaron had missed.  

Aaron was very, very weak.  He needed lots of help with walking, with stairs, and with the bathroom.  He was home, but life wasn’t going to be normal for some time.  He finally ate, and slowly we made it upstairs to his room.  He was so happy to be there at last.  He wanted to watch his new Tremors movie for real, on his DVD player instead of the portable player.  So he sat down in his chair, and he got his things around him fixed just right.  His clock next to his desk had to be positioned just so.  The items that he keeps near him on his bed were placed just right, with his stack of books on the corner of the bed.  On top of those was his notebook in which he kept his record of what movie chapter he was watching.  His pen was placed precisely on top of the notebook.  His back scratcher was set beside that pile of books.  His Gecko from Glenda was settled in front of his clock.  He looked around and checked to see that things were exactly as he wanted them as I stood behind him silently watching, and silently marveling at his precision with every item.

Then he saw a DVD that needed to be put on his shelf of DVDs.  He asked if I would put it there, so I leaned over and placed it at the end of the row.  He just stared at it, and I waited.  Nope.  It wasn’t right.  So I repositioned it several times before finally finding that he wanted it leaning a little at the top, and he wanted his special large rock to be placed near it so it wouldn’t slide out of place.  There!  It was finally according to Aaron’s specifications, and I was free to leave while he watched his DVD, content that all his things were in their perfect place as they should be.  At home.  Where he should be, and where he was so happy that at last he was there. 

Aaron spent much of that first weekend sleeping in his chair in the family room, his animal print blanket stretched over him.  He coughed a lot, and he tried to walk by himself, but it was very slow going.  He needed lots of help with everything.  Coming home was wonderful, but it didn’t mean that Aaron was well and strong right away.  For that reason, he was pretty disappointed.  He loved being home, but he wanted his old body back as much as he wanted his old life back.  Both would take awhile to return to normal, and despite our reminders and assurances, Aaron had some frustrations. 

 
“I’m just so tired of myself!” he blurted out on Saturday, overcome with frustration at his weak body.  That made us so sad, but we could only offer encouragement that every day would be better.  And it was.  He enjoyed visits from friends, including Rosa and her mother, Louise…..complete with pizza and balloons!  He enjoyed his room and his family room chair, watching Wheel of Fortune, and being with Jackson, and just everything.  And each day was better than the one before.  Each outing found him getting a little stronger, his stamina increasing slowly but surely.  After several days, he and I played Skip-Bo, with Aaron checking his watch to keep track of time, just like always.
 

Perhaps what he loved the very most, and what he had missed the very most while in the hospital, was his own comfy bed.  The first night back at home, when it was time for bed, I was helping him get everything ready.  Every blanket was perfectly placed, every wrinkle straightened out, the pillow put just in the right place, and then the sheets were pulled back so that he could place his snake and his skunk under the covers.  But now he had decided to add a new member to the mix.  He wanted to add the soft green frog that Andrea had sent him while he was still in the hospital.  So he rearranged Mr. Snake and Skunk in order to make room for Mr. Frog, stood back to observe and to rearrange, and finally he was satisfied. 

 
He climbed in his bed, after writing his “Time to Bed” in his log book, and I pulled his covers up around his face.  Then he smiled the sweetest smile in the world as he moved his legs back and forth in his wonderful bed that wasn’t a hospital bed.  He was the picture of utter contentment.  He pulled his arms from under the covers and held them up to me, so I leaned down and gave him a goodnight hug.

“Good night, Aaron,” I said as I hugged him.  I arranged the covers up around his face again, and there was that smile.  He looked at me for a few seconds.

“Mom?” he asked.  “Do you want to say good night twice?”

What a precious moment!  Of course I said yes, and so out of the covers came his outstretched arms.  I leaned down to hug him one more time, thankful that our Aaron was home in his own bed.  The hospital stay was scary.  His health was uncertain.  The outcome was unknown for days.  I had stretched my arms on this bed days earlier as I asked God to heal him.  Now here Aaron lay, smiling and hugging, wanting to say good night twice.  It was his way of telling me how very happy he was to be home.  I understood and I agreed.

I left Aaron to his dreams.  And I didn’t go to sleep until I thanked God that on this night, I got to say good night to Aaron in his own bed…..twice!

Has Aaron Called You a Jerk Yet?

Aaron’s been home from his hospital stay for a week now.  He’s doing well, regaining his strength and overcoming side effects of some of the strong meds that he was on.  This was Aaron’s first major hospitalization for a serious illness, and we certainly pray that it’s his last.  It was interesting to watch him in that setting, and sometimes sad, sometimes funny, and often frustrating.  Gary and I were so thankful for the very patient and understanding nurses, aids, and doctors who cared for Aaron, for caring for special Aaron at times takes special calmness…..and some thick skin as well.

We were actually amazed that Aaron handled hospital life as well as he did.  He was totally out of his element, out of his routine, and out of anything remotely familiar.  He didn’t have his bed, his blankets, his clock, his animals, and so many other things that make Aaron’s life his life.  For the first several days, Aaron spent more time sleeping than anything.  But he still had to answer questions, some of which he thought were particularly dumb.  He really didn’t like questions pertaining to his bowel habits, and sighed and mumbled a definite, “HUMPFFF!” It took him awhile to understand the annoying catheter, and let’s just say that bathroom trips for the other were very dramatic.

“Are you going to flush?” Aaron would ask immediately.  Because this is what he does at home, and these nurses were taking too long, he thought.

“Yes, we’ll get that in a minute, Aaron,” they would answer as they tried to balance very weak Aaron and keep him from falling.

“When are you flushing?” he would quickly ask again.

“We’ll do it in a second,” they replied again.

“But you need to flush!” Aaron repeated.

“We know, Aaron.  We will,” they responded.

“When are you flushing?” he asked again.

And I just sat out in the room smiling, because I know Aaron and I know that this flushing business is supposed to be done a certain way by him.  He was realizing that he couldn’t count on the nurses to do it correctly at all.  No big deal to you and me, but huge to Aaron.

He wanted some normalcy, so on the day that he was admitted and I was going home in the evening, I stood over his bed and told him that Dad was staying while I ran home.  “Mom, can you bring me my watch and my glasses?”  Of course he wanted those things.  When I returned with them, he immediately put his watch on his arm, pushed up high the way he likes it, and there it stayed for the remainder of his time there. 

He had been wanting the movie “Tremors” that he had seen in Wal-Mart.  In the midst of his fever, coughing, and pain, he asked if he could have that movie.  On Sunday I ran up to Wal-Mart nearby and got it for him along with some head phones, for Aaron MUST listen to movies with head phones.  He tried watching it right away that day, but he mostly slept through it.
 

On Sunday morning, his coupon cutting day, he remembered.  “Mom?  I just want to go home and cut coupons.”  I felt so sorry for him!  But I assured him that I would save the coupons for him. 

In his sleep one time, he said, “This is not fun.”  Again my heart hurt as I looked at him with needles and tubes and gadgets all around him, burning up with fever and coughing, trying to swallow pills when needed.  Then later that same night, he unexpectedly said, “I love you, Mom.”  For Aaron those words don’t come often or easily, so with surprise and with hidden tears I stood at his bed and welcomed his hug.  He was scared and he was so sick.  I was scared, too, but I couldn’t let him know that. 

You can barely see his watch on his arm.  🙂
 
Several times that week he looked at the clock sometime after 7:00 at night, and told us that he missed Wheel of Fortune.  It bothered him to miss his show, but he was so often sleeping soundly during that time, and Gary, who was with him then, wouldn’t awaken him for that.  I wouldn’t either, so we again assured Aaron that he could watch Wheel of Fortune when he got home.  His routine was totally a mess!

His bluntness was often embarrassing to us.  I was so very relieved that the staff understood the autism, and that they made sure to brief all the staff that came on during the shift changes.  I went down with Aaron to get another chest X-ray one morning.  The technician said, “Well hello, Aaron!  Do you remember me?  I took your X-ray yesterday.”  Aaron immediately replied, “Who cares?”  I heard it out in the hall and Aaron heard me calling his name to correct him, but the nurse standing there with me laughed. 

All the nurses and others assured me that they understood Aaron, and they truly seemed to do just that.  Yet still I would find myself apologizing and explaining, even as they told me that it was fine.  They genuinely seemed to like Aaron, even when he would call them a jerk.  Yes, he called some of them a jerk, especially when he was feeling terrible and didn’t want them messing with him.  Once I went out to the nurse’s station, and they were laughing, asking each other if they had been called a jerk yet by Aaron.  Proud Mom moment.  At least they thought it was funny.  Andrea told me that Aaron just said what lots of other patients wish they could say when they felt bad. 

There were so many moments with Aaron.  One night, late, he just wanted to go to sleep but had to take his meds and have his vitals taken, a new IV started, and so forth.  He was so tired, and when the nurse was finished he said, “You can go out of my room now.”  And one day when the sweet nurse’s aid walked in, I said, “Aaron, there’s your buddy.”  He looked at her and said, “You’re not my buddy.”  Very matter of fact, not hatefully, but he made his point. 

 
Physical therapy was interesting.  Aaron didn’t want to answer all their questions on their first visit…..questions about our house so they would know what he faced when he went home.  He sighed a lot and rolled his eyes a lot, and I fussed at him a lot.  One day he was in bed when they came to walk him up the hall, so out of bed he came and up the hall he walked.  We knew that Aaron needed to sit in the chair when he returned to his room, but he walked over to his bed, looked down at it, and told us, “I said I want here.”  Nope, Aaron.  You’re not getting your way, even if you call us jerks.

When his fever finally broke on Wednesday night, and he felt much better all day on Thursday, he was even more vocal about how frustrated he was.  Feeling better made him miss home more, and missing home more made him more vocal.  He never totally lost control, but he was more unhappy and bossy, that’s for sure.  I told the doctor on Friday morning, before she came in the room, to be sure that she had put her thick skin on.  But when she came to see Aaron, her face was all smiles.  His chest X-ray that morning was better, and she said he could go home!  YAY!!  Aaron smiled a huge smile, and was the happiest I had seen him all week. 

One of the last things he had to do was let Occupational Therapy come and give him a shower.  He was willing to do that.  In fact, he had enjoyed showers the past two days.  He did think sitting on the chair was pretty weird.  The occupational therapist was there to observe Aaron and to show him some ways that he could shower more safely.  I listened as I packed up our belongings out in the room.

“Aaron, first you need to wash your hair,” she said.

“No,” Aaron replied.  “I do it this way.”

And as he did it his way, she tried to instruct him.  But Aaron told her that he did it THIS way.  She finally told him to at least wash the top of his head, too.  My former suspicions about his showering were confirmed. 

This scenario continued as I listened and quietly laughed. 

“Aaron, now you can do this,” she would say.

“But I like doing it this way,” he would reply.

“OK, let’s do this,” she said.

“No, I do it like this,” Aaron stubbornly replied.

On and on it went, with the OT giving Aaron suggestions while Aaron would have none of it.  Nope, he was not about to change how he showered or how he dressed afterward.  I realized after several minutes that this nice lady wasn’t instructing Aaron on how to shower.  He was telling her and showing her how he showered.  She was basically helping him shower, his way.  I was thankful that she helped Aaron shower, and I was hoping that maybe something she said stuck with Aaron, but I seriously doubted it.  Aaron’s routine isn’t changed so easily, even if you are an OT.

We left the hospital with hugs from our wonderful nurse that morning and a big smile from the aid, the one who was Aaron’s buddy whether he agreed or not.  I’m sure Aaron left his mark on everyone.  I have the utmost respect for the hospital professionals who worked so well with Aaron, even when he was grumpy and at times rude. 

And was Aaron ever glad to get home!  That story will be for another time. 



Aaron’s Hospital Stay

Aaron came home from his day group on Thursday, June 11, in his usual way, bounding in the hall door from the garage with talk of what he had done that day at Paradigm.  It was later, as I stood in the kitchen fixing supper and he sat in his family room chair, that I noticed him coughing.  It was just a dry cough, nothing major, but it was persistent.  So I leaned around the corner and asked him if he was all right, and he answered in his usual droll way that he was just fine.  But as we ate supper awhile later, Gary and I noticed that he was very slow.  A couple days earlier, on Tuesday, Aaron had four seizures.  That wasn’t unusual for him, but on Wednesday he was himself again.  To be more lethargic on Thursday was concerning to us. 

During Wheel of Fortune he wasn’t animated or excited at all.  I felt his forehead and noticed how warm he was.  Sure enough, when I took his temperature it was 102.4.  The next morning I called McConnell Air Force Base to make a same day appointment.  Aaron kept sleeping until I finally went in his room and roused him enough to take his temperature again.  It was still 102.4.  He had a very hard time waking up enough to take his morning pills, and then went right back to bed.  As I continued to check on him I became very concerned at how he couldn’t wake up, so I finally made the decision to take him to the ER.  McConnell agreed with me, so I worked to get Aaron awake enough to dress.  I then had him sit on the floor of the hallway upstairs and scoot down the stairs on his bottom.  He would scoot down one stair and fall asleep until I jostled him……then scoot down another stair and fall asleep…..all the way down the stairs. 

We slowly made it to the van, and later at the ER a male nurse helped Aaron out of the van and into a wheel chair.  Still he slept.  We got him on the exam table and he slept again.  Somehow he stood up for a chest X-ray, but he slept through the doctor’s exam, the blood draw, insertion of the IV, and even the catheter.  The doctor found an ear infection, so I thought that Aaron’s body was just fighting hard and the sleeping was his reaction to that.  I felt like we would soon leave with an antibiotic prescription, go home, and get Aaron well. 
 

 
Yet the concern on the doctor’s face as he kept coming in the exam room was raising my own concern as well.  Finally he told me that the blood work had shown Aaron’s sodium to be dangerously low.  It should be at 135-136, but Aaron’s was 121.  Then he said that Aaron would need to be admitted to the hospital to address the sodium issue, and to find out what else was going on with him.  My mind was whirling as I called Gary and as we tried to decide if Aaron would stay at St. Teresa Hospital or go elsewhere, although that decision was made for us by insurance.  We would stay at St. Teresa.  It wasn’t long before we were on an elevator headed up to the small ICU unit, my mind still trying to adjust to all this.  I looked down at my very sick son and wondered about the “what else” that the ER doctor had mentioned.  What else was going on inside his body? 

 
There Aaron lay, all hooked up to monitors and tubes, his body struggling against that unknown something that was making him so sick.  He tried hard to wake up enough to answer nurse’s and doctor’s questions.  He sometimes showed his definite personality, like when the nurse asked him a question about his bowel habits.  He gave her a rather disgusted look and just answered with a “Hhmmpf!”  When Gary was there, and I left later that evening to run home, Aaron asked me to bring him his watch and his glasses.  He didn’t wear his glasses a lot during those first few days, but he put his watch on his arm right away, pushed way up the way he likes it.  It was a piece of normalcy in this crazy place in which he found himself. 

 
Over the weekend, when friends came to visit, Aaron would cry.  He showed emotion that was rare for him.  He told me later that he was sad.  I told him that we understood, but I didn’t tell him about my own sadness.  Or about those icy fingers of fear that were trying to grab at me.  It was not only sadness but fear I was feeling as I watched the blood draws…..the strong antibiotics flowing through the IV into Aaron’s body…..the fevers that sometimes rose to 104.5……the CAT scan…..the X-rays…..the spinal tap……the kidney specialist and the infectious disease doctor…..the testing for West Nile and tick borne disease…..the low sodium issue. 

 
Early on Saturday morning, as I have done many times in the past during stressful times, I asked God to give me a special verse.  I asked Him to speak to me in the way that I needed at this time.  There in that hospital room, with Aaron sleeping nearby, God gave me Ecclesiastes 11:5:  “As you do not know the way the spirit comes to the bones in the womb of a woman with child, so you do not know the work of God who makes everything.”  That was it!  I didn’t know what was going on here with Aaron.  I didn’t know the work of God but I do know God.  I know that He loves us and I know that He has a work that He is accomplishing.  I know that I can TRUST Him, regardless of what else I don’t know. 

It was very hard to watch Aaron suffer.  Hard to see the pain in his face when he coughed….the struggle to deeply breathe and to talk……the pain of needles and tests.  It was easy for me to let fear take over as I helplessly watched our Aaron and wondered still about the “what else” that was so elusive to find in his body.  Soon another principle from scripture came to my heart.  “In everything, give thanks.”  I went home one evening while Gary sat with Aaron, and I knelt by Aaron’s empty bed in his bedroom.  His stuffed snake and skunk were still in the bed where he had left them.  I stretched my arms over his animal print blanket and I asked God to please heal our son.  I told God that I didn’t know about this work that He was doing, but I did trust Him.  And I thanked Him for this time.  That kind of thankfulness takes great trust in the One whom I was thanking, for sure, because I hurt for Aaron so deeply.  But I also know God and I know that He can be trusted.

It was a turning point for me.  My mother heart still hurt deeply all through that week in the hospital.  One night, with eyes closed, Aaron said, “This is not fun.”  There went my tears.  And later, eyes still closed, he said, “I love you, Mom.”  I leaned over his bed and he got as big a hug as I could give him.  But I purposely stood there and voiced thankfulness to God, hard as it was, for this work that He was doing and that I didn’t understand. 

 
Aaron’s chest X-ray finally showed pneumonia in his right lung.  It was determined that he had Aspiration Pneumonia.  Apparently, he aspirated some saliva during his seizures that previous week.  He responded to a new antibiotic, was moved out of ICU to a private room, began walking with the help of physical therapy, and was soon clamoring to come home.  I don’t know who had the bigger smile, Aaron or his doctor, when he was finally told that he could go home.  On Friday, a week after being admitted to the hospital, he was wheeled out to our van and we took off for home…..after picking up his choice of McDonalds for lunch on the way.  He is recovering his strength and his spirit, and some grouchiness, too. 

There is more to write about this experience.  About how Aaron’s autism affected his hospital stay, and about his tender return home to his world and his routine.

We’re so thankful for this outcome, but if it had been different, I pray that we would still be thankful.  Thankful for the work of God who makes everything, even when don’t know or understand His work.  When it’s all said and done, there is no better place to be than in His will as we watch His work and trust in Him.