So I haven't blogged in a few days...and I feel completely disconnected from the world. (and I will apologize now because this is going to be quite a lengthy post) This past Wednesday, April 4th was going to be a normal day. I woke up happy and ready for both kiddos to go back to school after both having been sick for a couple days. I had plans on doing some errands and hanging out with a friend so thankfully I was showered and dressed for the day because NOTHING could have prepared me for what was about to happen.
I was downstairs catching up on some of my favorite blogs and enjoying a cup of coffee when I heard loud noises and crying from upstairs. My son finally made it downstairs but he was sliding across the floor crying that he could not WALK!!! At first I couldn't understand what he meant....what do you mean you 'can't walk'?? You have been walking for 7 years!!! I tried standing him up and he could not put weight on his legs. Everything in me began to panic, freeze and freak out all while trying to contain myself in front of him so not to make him more upset. He said he needed to go to the bathroom but he couldn't get there, so I lifted him up and walked him in there and he couldn't even stand once I got him in there. The whole time this is happening my mind is going a MILLION miles a minute and I can hardly breathe. I got him settled at the kitchen table with breakfast and went upstairs, started pacing and crying and called one of my closest friends.
I don't know why I called her at 6:40 AM, I don't know what I thought she was going to do, I just needed to talk to someone and try to pull myself together. My husband was out of town and I was trying to gear up to call him and let him know I was going to have to take Casey in to be seen. When I called him, I tried so hard to sound normal and then I just broke down crying that I didn't know what to do, but Casey can't walk and I don't know what's wrong with him. He was wonderful (scared, but supportive) and told me to take him straight to the ER. A million things were going through my mind. As a mom, you are never prepared to wake up to a child who has walked for YEARS to all of a sudden not. be. able. to. walk. You immediately are thinking of all the things that can be wrong and it's not a pretty picture up inside that bubble of 'thinking'.
It was so hard because I'm upstairs crying. I called my mom and also the friend I was supposed to be getting together with and all of these poor people are getting crying wake up calls from me. I felt so sad for my poor daughter. I could tell that she was SCARED!!! She was helping me get him and his stuff from room to room, but she knew something was seriously wrong. So I packed up the kiddos in the car and headed to take my daughter first to school and then I was going to go to the ER. I didn't want to go alone, but I really didn't have a choice, my friends were either working, out of town, had their own appts they had to deal with or had tiny little ones which meant I didn't even want to bother them. I figured I just had to get my baby to the ER and that was all there was to it. In the meantime I had called Stacey to see if she happened to be off or not, when she didn't answered I figured she must be working, but I LUCKED out...I left her a message and she called me right as I was driving down the road from my house and told me to come get her.
A wave of relief came over me...I didn't have to drive alone completely upset and freaked out to the hospital. I ended up leaving my car at her house and she drove. When we got to the ER it was such an AWESOME hospital because they had a separate Pediatric ER, so NO. WAITING. WITH. A. BUNCH. OF. NASTY. DRUNK. PEOPLE. ETC. We got put into a room immediately and he was put into a wheelchair (my back was grateful)
(please forgive the quality of the pics you are about to see....I had NO camera, just my dumb phone but I didn't want to not take pics, so this is what you have to deal with)
Here we are in the ER and he was given a prize from the Toy Cabinet for being so brave during his blood work.
Here is what you don't want to happen when you take your child in because he can't walk: A Dr and a Nurse who look at you like you're crazy and tell you it's just 'growing pains'.....ummm.....WTF!!??? (excuse the french) Growing pains are not going to make you NOT be able to walk or function!!!! I didn't know what to do. Stacey and I kept looking at each other like 'Are these people for real!!?' and I just kept telling her...'I am NOT taking my kid home when he can't walk!!!' We were there ALL day....we were starving, stressed and exhausted. FINALLY hours in a different dr came in and told us the other dr was filling in for her and she was our dr......THANK YOU!!!!! This lady was sooo thorough!!!! She did exercises with him, she watched how he 'tried' to walk, she listened....she was WONDERFUL. She ordered a bunch of blood work and even after some of it came back normal she knew something was NOT right. She narrowed it down to his muscles in his calves and ran some more tests.....sure enough his CK levels were high but they didn't know why. At 4:30 pm after being there since 8:30 am, they admitted him. Honestly, I wasn't prepared for him to be admitted. I figured they would get to the bottom of it and send us home. I just mentally did not even think we would NOT be leaving.
Now came the phone calls and arrangements for my daughter, not to mention I had to break it to my hubby that we weren't going anywhere. I am one of the LUCKIEST girls to have the most wonderful friends around!!! Stacey stayed ALL day with us at the hospital and went and got us dinner and left after we got moved into our room around 5pm, Shawna and her lovely mom were splitting taking care of Hayley for me and I swear it was like a load was lifted off of me just knowing I had one less thing to worry about. I have to say I felt so bad for Mike. He was sooo far away, completely helpless, didn't know what was going on etc. As soon as he knew we were admitted that was it, his mind was made up...he was coming home!!! (man, do I ADORE that guy!!! I sooo needed him, but DID NOT want to make him feel worse so pretended to have it all together!)
Shortly after being admitted they took him down to insert an IV. Honestly, if I could have laid on that table in his place I would have! Oh, to see his little face and the tears running down his face and me just holding him telling him how great he was doing, when all. i. wanted. to. do. was. CRY! He was a trooper though, I will hand it to him and the staff was unbelievable. They took him to the Toy Closet and let him pick something out.....
Here he is right after his IV with his new 'prize'......
The other crazy thing they discovered while we were there was a hole in the heel of his left foot. He had stepped on a wood chip out at the park a couple weeks before, but we couldn't see anything in there so we figured it came out on it's own. Well it was swollen so they decided to go ahead and do an xray while we were already in there....(seriously, can our life be any more eventful?? LOL)
That first night in the hospital was so long....Every time he woke up in the night and needed to go to the bathroom it was a full production. Me juggling trying to keep him stable, moving his IV pole and not pulling any wires out of anywhere then trying to get him back into bed and hooking him all back up. Neither of us got any sleep that night especially since with the IV he needed to go to the bathroom very often so you can imagine. Every time he moved in the night I woke up to make sure he was ok. You just feel completely helpless watching your child lying there hooked up with wires, machines and knowing that he doesn't really understand what is going on. My heart just broke for him, but I was working hard at keeping it together.
The next morning Mike got to the hospital around 11am and to say I was RELIEVED would be an understatement. It just felt soooo good to know I had someone there with me, to support me, to be there to help with Casey, to just be. They ran labs every 6 hours and finally decided to take him off the IVs to see if the numbers were going down on their own or if it was just the IVs. He started complaining of a pounding headache and he was running a slight temp. I felt horrible that he was crying from his headache. They came in and gave him a pain relief med to help with that and then he went to sleep. We still kept thinking we would be going home that day, until 3:30 when the nurse came back in and said they needed to get him back on the IVs, his numbers went straight thru the roof, higher than they were before. We knew then, we were staying another. night. in. the. hospital. Ugh. They told us that a virus had attacked his muscles and started breaking them down. It turns out it was a respiratory strain of Influenza and it caused miyositis a rare disease where the muscles have break down and weakness from something attacking them. So they needed to flush his body and build the muscles back up. It was such a HUGE RELIEF to know that it was nothing long term and that our baby would walk again, because again every thing runs thru your mind and you are beyond scared of what could be.
They ran labs every 6 hours or so and we made it thru yet another night. He lost some range of motion in his legs and ankles so we were shown some PT exercises to do with him and yesterday at 5 pm after the 3 LONGEST, SCARIEST days of our lives, we were discharged with a happy little boy who was able to WALK again!!!! He is definitely still weak, and gets very tired easily but he can WALK and we are ECSTATIC!!!! I have to make a follow up appt with his pediatrician on Monday and in a week they need to recheck his CK levels to make sure they are still going down and I also have to call the out patient surgeon for his foot because it looks like they will have to do some minor surgery, but things couldn't have turned out better.
I can NOT say enough wonderful things about the Pediatric unit at the hospital. They were outstanding to say the very least. Even yesterday during the day while waiting to see if we would be discharged they gave us eggs to do an egg hunt in his room with him. During his stay he got to play video games, legos, watch movies, color the list just goes on and on. It made it that much easier to be there knowing how well he was being treated and he wasn't the least bit unhappy.
And this is the little boy we went home with......
Thank you to all the wonderful family and friends who were there for us, called, just were genuinely concerned. We love you all. xoxo
