Jonah in the hospital/coming home

I did take a lot of pictures of him in the hospital.  Why?  I did because when your kid is that sick and you are pretty much helpless to them, all you can do is let the fear of the worst thing happening set it.  I actually did have peaceful feelings that he would be okay, but I still ached to have him home and well, and taking a ton of pictures of him, is what came naturally to me.  I felt like savoring every memory of him.

*Story continued: After Cooper could no longer contain himself, I took Julien and Cooper home for a while.  It was a very sad feeling going back home on Christmas night, missing two members of our family.  I couldn't wait to get back there.  By the time we got back, they had moved him to the PICU and he was all set up with Wii games.  By then his fever had gone down because of the Motrin. We were told at that point that he would be there over night.

Here he is playing Wii.  It was very exciting for him at first, since we don't have one at home, but by the end of the week, it didn't thrill him all that much.

 We brought him a few things to open, to help cheer him up.  Above, was his stocking.  And below, well, that would be Jonah's number one wish coming true this Christmas: a flute and a harmonica.  He would tell me for weeks, "I'm dying to have a harmonica, Mom."  The look on his face made my whole day!!

A sweet little note that Julien brought him. 

Jonah was still a bit out of it on Christmas evening, but I was so happy to see him smile.  It was hard to go home again that night.

The next morning we showed up to a very sick boy again.  His fever spiked again in the middle of the night and he threw up again.  At this point we already had some results pointing towards a urinary tract infection. But they were waiting on the blood culture results.  They said it would be days before he could come home.

His fever was very high here and he wasn't waking very easily.  All I could do was stare at him and take pictures to savor every little bit of his sweet face. Side note: see that big birth mark on his neck...a long time ago when he was little he named it "Red," I guess he thought it looked red?  Anyway, we still call it "Red" and I always ask if I can kiss Red.  I love that thing because it's part of our sweet boy.

In the words of Julien, "I wanted a Wii so badly for Christmas, but I didn't get one.  But I still got to play Wii on Christmas!!  It's like a miracle."  Julien was very concern for Jonah and missed him so much, but he did enjoy playing that Wii while we were there.  Cooper, once again tried busting out of the room continually, making it really difficult to be there.  But he sure is cute. 

this was during the few seconds that he was staying put.

 Once Jonah woke up and the Motrin kicked in again, we gave him some more presents to open.  These ones were from Grandma and Grandpa Harrington. 

What is it?  The first thing was a set of binoculars!  Jonah did mention that he wanted those, so he was very pleased.  I wish I had gotten some pictures of him later on in the week using them.  So stinkin' cute.  He loved them, and enjoyed watching the workers on the roof, outside of his hospital window, or spying on what was going on outside of his room.  The second gift was a pencil sharper.  The big kind that you crank.  Pencil sharpeners thrill Jonah to pieces.  He sharpened every last pencil in the house once he got home.  AND it was red, his favorite color!

Although he was able to open a few presents, he was still not feeling well.  His sweet face above, here, says it all. 

It was still very hard to get him to drink enough.  And part of their worry was that he was very dehydrated and needed to drink a lot so he could pee a lot to help with the infection.

Above: This was the third day.  Rich had things he had to do so my friend Jodi helped me out with Julien and Cooper for the day.  I was so happy to be with him for the day.  By then, he had a board taped to his arm so he couldn't move the IV, which made pool and Wii a little more challenging.

We had a great day together.  I know my boy, and I know just how to make him laugh and feel better.  (Someday I should write a post of the little things that make Jonah laugh...he finds the silliest little things to be so humorous)!  We played Wii together, pool, spied on workers outside with the binoculars, watched Charlie Brown, snuggled a ton, cracked jokes, went on walks-IV came too; and finally, not one bite of food since that last cookie on Christmas Eve, and Jonah got the okay from the Dr. to eat solid food again!  He was very excited to eat.  But Jonah is extremely picky and finding him something he might eat off of the room service menu was tough.  Off of this plate below, he scarfed those mashed potatoes and the rest he denied.  He was still hungry and I ended up ordering him 3 more scoops of mashed potatoes, to his delight. 

The picture below was the fourth day.  (He didn't change his clothes much).  Rich and I split our time with him that day.  We were able to get more help from friends and my dad.  I stayed the night (finally) that night.  I was feeling like a bad mom that I hadn't slept there yet, but Rich and I tried to think what was best for the whole family that week.  I couldn't take it anymore, I had to be there for him.  But before I go on, BIG props to Rich, who was the best daddy ever, and slept there for 3 nights and was there when I couldn't be.  I wish he had pictures and stories to add here, because I know he had some precious moments and sad ones too that touched him.

Love that smile!

He doesn't look sick here, huh.  At this point we were still waiting on some test results (which they had to redo) and still weren't sure when they would let us go home.  Things weren't matching up with his labs and the Dr. was baffled.  He didn't seem sick and he really wanted to go home, but they needed more time.  

We had another great day together.  We had planned to have a "movie night" that night to watch "The Smurfs," but Jonah dosed off before we got to that. 

Being in the hospital is so exhausting.  No wonder he fell asleep before our little movie night. 

I was a little bummed he fell asleep because I was looking forward to that time with him, but I was happy to know he was peacefully sleeping, and I got myself ready for bed at that point too.  About an hour and a half later, he was woken up to take medication (IV was off by then) and he had to get weighed.  Here is when my hospital experience with him began to build a lot of frustration inside of me.  It is sad to watch your child being forced to wake up, drink medicine that he hates and fought like crazy to not take, and to have to get out of bed to get weighed after he was dead asleep.  By then he was wide awake and ready for our movie night.  So we snuggled up and watched "The Smurfs" and loved every bit of that snuggle time (but I was getting super tired).  We finally went to sleep around 1:00 am, only to be woken up again an hour later so they could take his vitals.  Then it was back to sleep and not too long later, I am startled by a nurse hovering over me, telling me that they needed more blood from him.  "Are you kidding me, right now?!!" was my response.  No more Mrs. Nice Mommy.  I know they have to do what they have to do, but Mommy Bear was not liking my tired boy getting woken up constantly, and I knew that drawing blood in the middle of the night was not going to go well (and I'm not very nice when I'm tired anyway, just ask my poor family).  The first day they drew blood, he was so sick and out of it that he put up just a little fight.  The second time they did it (Rich witnessed this one) he screamed bloody murder and it took 3 adults to hold him down, including a man straddling him.  He is extremely terrified of needles.  And what exhausted child wants to be poke in the middle of the night?  I witnessed the traumatic experience that it was for him, when again, 3 people had to hold him down, and he screamed as if they were going to kill him.  They left the room, and Jonah whimpered in my arms until he fell asleep.  When I heard the baby in the next room, give the same heartbreaking cry when it was his/her turn to give blood, oh boy, did my tears start falling big time.  It was hard to sleep after that.  I totally understand that all of this is what needs to be done, but it didn't help that our nurse seemed to be cold hearted; I was obviously very tired; and what mom wants to see their kid be that terrified, especially when they were just peacefully sleeping.  Just shortly after drifting back to sleep I woke up to the same nurse telling me he needs to take medicine.   More trying to wake my sleepy boy, who hates taking his medicine, and was so frustrated that he was being woken up again.  I did my best to get him to take it.  I started with a gentle voice to convince him.  I tried for an hour (exhausting).  He not only refused, but would burst into tears and screams.  He was sleep deprived and when Jonah doesn't want to taste something, he will fight till the end.  I had the pressure of the nurse walking in and out, checking to see if he had taken it, but most of all, I had the threat of how badly he needed to take that medicine because the infection was much too risky to not do so.  My gentle persuading, turned into firm pleads and ultimatums that he would have to get the IV put in again, and receive medicine that way.  He would ball when I would say that, but even then he was considering the IV over tasting that medicine.  The nurse came in again and I told her I needed help and that he wouldn't take it.  She said, "I can make him take it."  I asked how, and she pinned him down, pried open his mouth, and squirted it in (something I had already tried, but with a little more love).  He screamed and gagged, and spit it out, and she left it up to me again.  I was so frustrated and tired.  The thing about Jonah is he is a very different kid.  He wanted to go home, he wanted to be better, but he lacks the self motivation to help himself.  His stubbornness is beyond anything I have seen.  Yet I love him with all of my heart.  So anyway, what good is taking medicine if he just spits it out?  I tried every plead, ultimatum, threat of not being able to come home, threat of having to get an IV again, to no avail.  By then I needed a break.  I was so tired and so frustrated and scared that he wouldn't help himself.  I walked down the hall to the bathroom to be alone.  I felt like I was mad at everyone at that point.  As I was walking back to go into Jonah's room, there were a bunch of nurses standing around talking about us.  Then they noticed me and one nurse said, "Hey, Mom, you really need to get him to take that medicine.  He HAS to have that."  And should I even admit what happened next....k, I will, cause this was real life...I then, (in front of everyone), said, "I know.  I'm not some weak mom who is just going to let my kid not take his medicine because he doesn't want to.  I'm doing everything I can!  * (see bottom of post)- He isn't your typical kid." Then I broke into tears and was hating myself for it, but they got the best of me (or the worst, I guess:)). I then explained that I was crying because I was so frustrated with Jonah.  Frustrated that it's so hard to get him to do the things that help him.  (Just like it is at home.  I can't get him to eat, but a few select foods.  I can't get him to drink enough.  I can't get him go pee, even though he obviously has to go.  I am not a push over mom, and I have tried and tried to my exhaustion to get him to help himself).  This was no different, except that his life was a lot more at stake. Add in the sleep deprivation and the emotion that being in a hospital brings, and there you have it; I was a crying mom, who just got done telling them I wasn't weak.  Yep, awesome.  Anyway, I really think it was my last prayer that morning that got him to take that medicine.  Somehow, Heavenly Father blessed him with the courage to do it.  I never went back to sleep after that.  Jonah did though, and I was glad he could sleep.  A few hours later the Dr. came in with final results.  A for sure, urinary tract infection, and Staph found in his blood and urine.  Staph infections are not ones you want to take lightly.  The Dr. told me he was lucky to be looking as good as he was and that we were walking out of there that day.  Yep, we got the okay to go home!  He gave me prescriptions for 14 days of antibiotics and told me to watch for fever, for change in behavior, diet, or activity.   He warned me that the infection could spread to his bones.  After that I just had to schedule a follow up appointment with our Pediatrician for the next week, and they would let us go.  I made the appointment and packed as fast as I could.  We beamed with joy and relief all the way home (actually 11 days later, I'm still beaming).   

This pretty/delicious "edible arrangements" fruit bouquet was delivered to Jonah in the hospital.  It was from my sis.  Isn't it cute!  Thanks, Reese!

Is anyone still reading this?  We got home and everyone was over the moon to have Jonah home and to be together as a family again!  We were mean, and made him shower before he did anything.  He needed it for sure!  Then it was time for Jonah to open the remainder of his presents, finally next to the Christmas tree.  Julien had been dying to see what Jonah got.  He had been eying those presents all week.  Jonah had built up a bit of curiosity as well, especially for the big one from Santa.

He opened up his gifts from Grandma and Grandpa Good (a Walmart gift card and a little Stocking filled with treats), and he opened his Santa gift.  If you read my Black Friday post, I mentioned how I wasn't able to get the Razor Scooters.  Well, I ended up finding that boxing set for Julien and later ended up finding a great deal on a Razor for Jonah, so he got that!

We got the kids their own mug this year for hot chocolate.  The other presents he is opening here are clothes from other people.  When I feel a present and it feels like clothes, I get super giddy.  When my boys feel a present and it feels like clothes, we get faces like those pouty ones above.  But no worries, they are always excited to wear them later, it's just in that moment of opening a present that they would rather it be a toy.  The next day, they are super excited to wear new clothes.

Here he is trying out his new scooter!

Julien had to try it out too.

Left: Cooper ran out and grabbed his brother's shoes and put them on.  Right: But we made him go back and get his own. 

 These two pictures of Cooper are some of my favorite of him.  He was looking up at a plane. 

 We stayed out for a bit that day to soak up the sun and I'm sure it felt like freedom for Jonah to be out of that hospital.  I know it did for Rich and I. 

And are these not so cute!  Cooper loves to do anything his brothers do.  Love the picture of his shoes still on the wrong feet:).

So in the end, 5 days, 4 nights in the hospital.  The ironic thing was I was thinking on Christmas Eve how awesome it was that we made it through the holidays without getting sick.  Little did I know.

The update on Jonah:  Once we got home, Jonah put up a fight the first night with the medication, but because he was home and more relaxed he gave it a go, and now he loves it.  It is a much better tasting kind, but being out of that environment helped him too. We went to the follow up appointment with his pediatrician last week.  Because urinary tract infections are not very common in young boys, and because the x-rays showed a kidney stone and possible blockage, he highly recommended that Jonah see a kidney specialist.  We are waiting until he is done with his meds and we will see him on the 23rd.  We also have to get a test done (I'm forgetting the name) where they put a catheter in and shoot dye into his urinary tract and then take an x-ray while he pees to see if there is blockage.  I wish we could be done with all of this, but we definitely want to be sure Jonah is okay.

I'm sad that Jonah is going through this but I'm a believer that these sorts of things can also bring good as well.  To name a few:  anytime life wakes you up like this and you realize how much people in your life truly mean to, you can't help but be more grateful and try harder to enjoy every second with them.  It's made me more patient and more attentive.  I also noticed a change in Jonah.  I can hardly put my finger on it, but I can tell this experience did something to him.  When we went to the Dr. he let the nurse do her thing, with pure confidence.  This is not very characteristic of Jonah, but I think all those days in the hospital made the Dr. office seem like cake.  I also hope that he will be able to help himself a little more when it comes to going to the bathroom (not holding his bladder), eating, and drinking.  Some days he is better than others, but I am hoping he will develop the motivation to do these simple things.  This experience also brought our family closer and has made us all appreciate each other more.   Our prayers continue to be that he will be completely healed.  We are doing all we can to help him and we love him so much. 

*I don't want to place labels on my son or give others false thoughts about Jonah, but when I say Jonah isn't your typical kid, it is deeper than he is just stubborn.  Jonah walks on his tippy toes 100% of the time.  He has a list of different characteristics that point towards a sensory disorder or even on the low spectrum of autism.  It's unfair to him to label him without having a diagnosis, but I bring it up because it is something we are currently having him tested for and may explain why he does certain things like I have mentioned above.  It's also what may have lead to his UTI, because he holds his bladder.  It's a very confusing thing.  He is extremely intelligent and can make eye contact and carry a conversation with people he is close to (amongst many other normal behaviors), but there are certain things that point towards a deeper issue.  We are also praying for help in this and if you would like to pray for him, it would really help!  Thank you in advance:)!