Getting Back to Normal

Avery is back in school for about 6 hours a day and he went back to youth group tonight.  I picked him up early because I didn’t want him to over do it.

When we got home he was crying.  Zachery came and got me and said
“Avery is crying on his bed and he didn’t fall out.”  I think it was the pizza and the lasagna. He still has really bad reflux but it’s getting better. 

He said he couldn’t go back to school or ever go to youth again.  I know that in the morning he will feel better and will see that it’s ok to get tired and it’s ok to get a tummy ache and he will see that even when he feels bad he will feel better.   

If I could

I would put my son in a bubble and keep him safe.  I told the Rheumatology fellow that before we left the hospital on Friday.  He looked surprised, he doesn’t have kids.

Avery goes back to school tomorrow.  He is doing so much better, his pain is minimal and he’s moving great.  He doesn’t want to go back to school, he’s scared but he can’t tell me what he’s afraid of.  I know he had a really rough time last week, he was in a lot of pain.  A lot more pain that I knew. He was getting sick quickly from his first set of pulses. 

That isn’t the case this week.  He is upset about his hands.  They are pealing so bad and he said he is embarrassed.  We told him how much his friends miss him and how much he loved school.  I told him he could have his teacher call me if he was in pain, that he won’t have to stay there if he hurt. 

But honestly there is a part of me that just wants him to stay home.  I am ok with taking care of him for the rest of his life.  Except I know know he never wanted that.  This child has wanted to move out for over a  year, until recently.  Now he said he doesn’t want to leave. 

My sweet boy is afraid and it breaks my heart.  But I know that the sooner he goes back the easier it is going to be to overcome that fear.  He has been fearless his whole life.  My child could climb onto the counter before he could walk.  He has been afraid of nothing his whole life.  Now he afraid to come home from the hospital and afraid to go back to school.  Maybe he is mostly afraid he won’t be able to, that he will fail.  That is what I would be afraid of, that he won’t get his life back.  So I have to help him get it.

A great Dr’s visit!

We had a great visit today with the Rheumatologist, no hospital admission!  Avery is having some pain but not too bad, this is the first time they have seen him able to walk. 

There is still a chance we will have to go back to the hospital and have more pulse therapy before the rilanocept is working all the way, but not today!  We are going to try school again tomorrow.  I’ll take him after Zachery and let him stay a couple hours.  Hopefully next week we will be able to do half days.

I suck

Avery started throwing up at about 4:00 this afternoon.  He was being crazy dramatic with it and wouldn’t get up and go into the bathroom.  I yelled at him.  If you know you are going to throw up get up and go into the bathroom, don’t puke on the couch and floor! 

What kind of person am I?  I felt like he was not hurting, he was walking good, he is throwing up, just go into the bathroom.  I know I tend to be dramatic too when I puke.  Ok he gets it honestly, but I do go to the bathroom.  So now I feel like crap. 

We don’t know why he’s throwing up and the Dr is concerned by the amount of steroids he’s taking that it can mask things.  Now we’re waiting to see if he keeps it up and can’t keep anything down.  I just wanted it to be a stomach bug, and I wasn’t yelling at him at much as I was yelling because it just won’t end.  I want him to get well, I don’t want him to have to go through all this.  And as Mike reminded me tonight he got this lovely disease as his 17th birthday gift. 

God heal my son.

I’m trying not to ask

As hard as it is, I am not asking Avery if he is in pain or if he hurts all the time.  We are three days out from the last pulse therapy and loading dose of Rilonacept and still pretty much pain and rash free.

He is sore in the evenings and still can’t walk at Walmart but some of that is cardio.  He is getting his strength back, so that is wonderful.  He’s still having stupid sweats, I know because he’ll yelling about that now.  And we now have the red hands and crazy pealing going on. 

Another weekend

We left the hospital Friday afternoon after the echo.  The echo showed no change, which is a huge disappointment.  I am not sure what it means and our Dr is checking with the Cardiologist for me to see what to do next.  We stopped for pizza on the way home.  The woman there said weren’t you here last Friday on the way home from the hospital. lol  Avery was well enough to go in with me this time. 

He had to sleep on the couch it was more comfortable with his reflex pain.  They doubled the nexium and he’s still taking the tums but it’s more controlled now.  Saturday I had to take Zachery to the Dr.  He had a sore throat and threw up.  It seems like it is just allergies and he’s on daily nose spray and allergy tabs now. 

Zachery and I did a little shopping on the way home from the big city!  After we got home we got ready and took Avery to his birthday dinner at Red Lobster.  He talked about it so much in the hospital and before he got sick.  He has been wanting to go there for a long time.  He wanted the shrimp, crab and lobster and loved it all. 

It was the craziest thing when we got to the restaurant the woman asked how many kids menus.  I said just one so she gave the guy 3 adult menus and one child menu.  We get to the table and he asks who gets the kids menu.  Mike and I both said, “I do!” lol  So the guy hands it to Avery and not Zachery the 6 year old!  So we say oh the 6 year old gets it. lol  And he walks off deciding Avery didn’t need any menu.  So I asked if he could have the one he had in his hand!  Seriously are people that stupid?

Sunday was a great day.  Avery went to church with me.  As we got into the car, I noticed that Belle looks like she’s been shot on the side.  She seems to be doing ok and it’s just a small chunk so I hope she will be ok. 

Everyone was excited to see Avery at church and he was happy to hear people praying for him.  He wanted a donut and told me that blueberry donuts are God’s blessing. lol  He might be right.

By Sunday evening he is starting to have the shoulder and joint pains.  His hands are red and pealing from the tips of his fingers.  Not sure what that means but I’ll be calling the Dr in the morning.  I took his blood pressure and as typical for him it was all over the place.  I’m keeping a log of it.

Rilonacept

I gave Avery his first 2 shots on Friday afternoon.  I found out the box was delivered to the hospital at 9:37am and it took till noon to get it to his room.  I’m so glad I called and found it!

He did great with the shots.  It wasn’t as bas as I thought giving them.  The medicine was way harder to push that I would have thought but the sticking was easier. 

After I gave the shots, and he was fine, I started crying.  I just couldn’t stop.  I turned my back so he wouldn’t see and the tears just ran down my face.  The nurse who’d been teaching me how to do the shots came in and asked what was wrong.  She told me I did a great job.  Wow, I don’t want to do a great job, I didn’t want to have to do a great job, I didn’t want to have to give my child a shot for potentially every week of the rest of his life.  I want this to all go away. 

Waiting

It seems like we are always waiting.  Today is Friday and we are waiting on Avery’s new medicine to be delivered to the hospital.  We have a lot of hope in this very expensive medicine. 

The Dr’s told me yesterday it won’t work as fast as the Anakinra, it might take a month.   We might also have to have a couple more pulse therapies in the mean time.  I can deal with that, it’s way easier if we know we might have to go back to the hospital for three days than to be surprised. 

The medicine should be here by fedex by 11:00 am.  I have 3 hours to wait. 

Nurses

I have to say that Children’s has the best nurses.  They have been incredible and have been the first advocate for my son after me.  The quickly get to know him and know what is normal for him and if that changes they are getting us help.  I can’t say enough good things about the nurses on B4 and B6.

The Sticker

Children’s Medical Center has a policy that they give every person who don’t work here a sticker to wear. The first time we came into the ER the sticker people weren’t at work yet. So we spent 14 hours in the ER before going to our room. Right before we went up to the room I ran out to the car to get Avery’s bags.

He was a pretty sick puppy and I had to leave him alone so I was in a big hurry to get back to him. As I passed a desk, a woman asked if she could help me, I said no and hurried by.

I spent several days in the hospital with him before I went back to my car. Now I had been all over the hospital without a problem. So when I came back in, again a woman asked if she could help me. No I said I was good. She wanted to give me a sticker. No I was good and knew where I was going and really I do shower and change clothes every day did I really need to come to the front door and get a sticker every day?

So we were discharged after 15 days and went home for our 26 hours before coming back to the ER. Again it was the middle of the night and we were rushed to a trauma room with chest pains and him passing out so there wasn’t anyone at the sticker desk. We stayed for the three days and after taking his belongings to the car and coming back only to return the cart to the nurses station they wanted to give me another sticker. Ok seriously at this point stick your sticker I don’t want it and I’m not going to wear it. We’re leaving, I don’t need it, it’s stupid.

Five days go by and we find out we are being readmitted. Again Avery can’t walk and is in severe pain. We leave Texas Scottish Rite where our clinic visit is and head to Children’s. Scottish Rite gave us a wheelchair to use and when we were leaving she told me I could take it to the car and leave it in the lot, that security would pick it up. When we get to Children’s I have to leave Avery at the valet stand and find a place to park. I can’t afford valet parking and we are going to be here for three days so off to green parking I go.

So twenty minutes later I have parked the car and am trying to get across the sky bridge to get my son. Honesty, I am a little worried leaving him alone for so long. One he is in a lot of pain and two any thing could happen to him. I didn’t do real well with the sky bridge cause I’m waking on the part where the cars drive across. lol Our bags are heavy and I’m realizing I should have left them with him when I dropped him at the door.

I find Avery and make it into the hospital. I am trying to remember if admitting is on that floor or the lower one and someone at the big round how can I help you desk asked if they could help me. Now they are at least 30 feet away and I said I was looking for admitting. She points to where it is but says I must come to her first. I said I have to go all the way over there? I’m freaking tired, this is the second hospital today and I’ve just made a journey from the parking garage and my son can’t walk.

So I walk over and she tells me she has to give me a sticker! Seriously, you need me to have a freaking sticker. You called me and my son who can’t walk over for a sticker? I said whatever I’m not wearing your sticker, my son can’t walk can we get a wheelchair? They are so rude, they mumble about the wheelchair and say something about they need to know what room we are going to in order to check the wheelchair out to us. I’m sorry I don’t know what room we are going to, remember we are on our way to admitting. So she wants my cell phone number, oh crap I left my cell phone in the car! It’s miles away in the parking garage. ahhhhhh So I asked did someone want to go to green 4c and get my phone out of my car so they could call me on it? Ya, no takers on that one. So they write down my name and the wheelchair number and tell me I have checked out this wheelchair. A very nice man walks up and helps me with our bags and the lady pushes Avery to admitting. I set everything down, including my bag with the stupid sticker on it and run back to the car for the phone.

As I come back in the hospital, the same people ask if they can help me. This time I just say no thank you I am fine. They are yelling they want to give me a sticker and I say I got it you just gave it to me and they yell I’m not wearing their sticker. Ok at this point let me say that Hell will freeze over before I wear that sticker.

I have spent 18 days here and had three admissions over the past 3 weeks. I am here because I have a very sick child. I’m not here for a vacation, I’m here because my son was just diagnosed with a chronic illness. We have been followed by seven different ology’s and I have spent 3 weeks of terror worrying about my child and you are worried about me wearing the second sticker you have given me in 5 minutes when you know you gave it to me and that I just had to run back to the car for a phone and have once again left my child alone in your hospital!

I ignored them and went back into admitting because I really don’t have time for your nonsense. I need to get my son checked in so I can get him into a room so I can get the medicine started that is going to take away his pain and make him able to walk again. Moments after I sat down, three, yes three security guards rush into the room and start looking around. Ya they called security on me. I got up and said, “seriously”? “They had just given me one sticker and I didn’t want a second one,” as I showed him the sticker on my bag. The security guard looked shocked and said that is not what we were told! He suggested I call someone and complain.

Security left and we got a room assignment and headed to the floor. The nurse got him out of the wheelchair and took it. I almost asked for a receipt.

At 9:30 pm, about 7 hours after we came into the hospital, the phone in the room rang, and I answered. The voice on the other end told me the wheelchair I’d checked out hadn’t been returned and they wanted it returned by 9:30. I think my head almost fell off. “You’re calling me about the wheelchair, seriously?” I told them the nurse took it and I would go talk to the charge nurse. As I got to the nurses station, the phone there rang. I told the charge nurse what was going on and she was shocked. She said she would look for the wheel chair and not to worry that if they called back tell them to call her. She came and told me they nurse had the wheelchair because Avery needed to go to x-ray and he couldn’t walk.

Now I get wanting to know the people in your hospital are there for good intentions. But I have a sticker on that says B4, because I have a child on that floor I can still go anywhere in the hospital. Tons of people are walking around with stickers that say admitting or ed and they are in a room on a different floor. So how about some compassion? Isn’t this a Children’s hospital. We’re here because we have sick kids and if you see a child can’t walk and needs help do you really make them walk further so you can give their mom a sticker? Couldn’t she have brought him a wheelchair and helped us to admitting and then brought me a sticker? Don’t I really have more to worry about than a sticker?

Am I still in Holland?

Remember Emily Perl Kingsley’s poem about having a child with down syndrome?  It’s like being on a trip to Italy and getting off the plane and being in Holland.  Holland is not a bad place just not where you were headed.

It seems I got back on the plane to Italy.  We were rolling right along with this whole down syndrome thing and even had another child instead of being too afraid to.  But life was good, ok life was great.  We were happy and enjoying life.  I was rocking right along and feeling kinda safe.

Then I guess I thought I was heading back to Italy and instead my son’s foot started to hurt.  Now not only does he have down syndrome he, we have to deal with a chronic illness.  Seriously, not what I thought would happen. 

I really thought we got our deal of the deck.  I thought he had enough to deal with.  I guess I was naive, presumptuous, stupid or even relaxed.  Now we have to figure all this out again.  And I have to look around and figure out where this plane landed.  

Waiting for Wednesday

Tomorrow we go to the Rheumatology clinic as an out patient for the first time.  I was told to bring a bag in case we have to be admitted.  I have been doing laundry and cleaning house incase Avery and I don’t come home after the appointment. 

My cousin Laura keeps a hospital bag packed.  Her son Alex has frequent admission.  Laura I don’t want a hospital bag on standby!  But I am going to pack one and hope I don’t have to use it.  I even bought some hospital clothes at Family Dollar yesterday. 

I wish I could look at him and know what was going on inside his body.  I wish I could run labs at home. I wish it was 5 weeks ago and my son was health and we had never heard of systemic onset juvenile rheumatoid arthritis.

My church

Is amazing!  We are so very blessed to be a part of it and so very loved. 

Tears

They come at most inopportune times.  Like Sunday during mass.  I was ok and something set me off, then we got to peace be with you and I got hugs.  Seriously I lost it then.  I do not do well with sharing my pain.  I would much rather sit in a corner and lick my wounds.

I cried during Criminal Minds, when the girl was found hanging onto the buoy.  All I could think was what a fighter she was and how my Avery was a fighter.  I cried at a bookstore today.  I am not a weepy person.  I don’t walk around looking sad and weepy and I seriously don’t share my pain.

I do share my anger.  With anyone who can hear my voice.  That I am good at.  And I am angry but mostly I am sad and completely scared. 

Back to school

Avery went back to school today for an hour and a half.  He cried he was in pain.  This about killed me.  The whole time he has been sick he has barely mentioned he hurt.  So for him to cry, he was in a lot of pain.

Tomorrow I am going to give him tylenol before school and see if that helps.  I hear mornings are bad.  He come home and took a nap and felt better.  A hot bath also helped. 

I am afraid that the return of the pain and rash is a sign he’s not doing ok on the dose of prednisone he is on.  He has to be able to maintain for four weeks to qualify for that study. 

It is in God’s hands.  I know this.  But God it would be a little easier if you let me fix it. 

All is well

We are annoying our children!

I never wanted to be a tough mom

I swear when I signed up to be a mom I was going to be all lovey, huggy, and babying.  But when I had my first child, God had another idea.  Not being tough wasn’t an option. 

When Avery was born we decided we wanted everything for him.  We wanted him to grow up and be everything he wanted.  We wanted him to live independently and have a job and hopefully a wife one day.  So being all lovey, huggy and babying just wasn’t going to work.  We had to set the bar high and help him to it.

I remember when he started PPCD on his third birthday.  I was heartbroken.  All I could think was all the other moms got to keep their kids home but I had to send mine to school.  I didn’t just get to keep him home and play with him and love on him.  But we did what was best for him and have tried to do that since.

Now I’ve got this down.  I encourage him to do things that will help with his life and the future he wants.  I have fought for all of that for years.  He is so excited to get a job and move out.  And as hard as that is for me I will make sure he can do it.

Then something happened, my son was diagnosed with a chronic illness.  The medicine they are giving him weakens his immune system and now I once again don’t want to be tough. I want to wait on him and put him in a bubble. 

I don’t want to tell him to walk to the bathroom, to get up and throw away his plate.  I want him to just sit there until he feels better.  But I know that the only way he will get his strength and stamina back is to get moving.  I don’t want to send him back to school because I don’t want him to get sick.  I want to keep him in the house and protect  him. 

But I am not going to do that.  I am going to drive him to school Monday and let him have at least a couple hours there.  I am going to encourage him to get himself something to drink.  I am going to be a tough mom, no matter how much it hurts.  I am going to fight with everything we all have to help him get back all the things he has and help him to get all the things he has always wanted.

Great to be home

This time at home he seems so much better!  The pulse treatment is amazing, too bad it’s not something we can do all the time.  He’s back on daily prednisone tomorrow.  We go to see the Rheumatologist on Wednesday and she said to bring a bag incase he has to be admitted for another pulse treatment.  I’m ok with that, it makes it a little easier knowing something is possible.

Avery and I stopped at Best Buy on our way home from the hospital today.  We bought Iron Man 2 and a Wii.  He did pretty good, I did have to get a wheel chair for him to leave.  He’s walking so much more but I know it’s going to take time to build back his stamina after being in bed for three weeks.  It was fun being in his favorite store, I just can’t wait to take him there when he has more energy. 

Zachery did better this time and he was way excited to see the Wii. lol  We will hopefully have a few normal days.  I am thinking of taking Avery back to school on Monday.  I was thinking that if he has to go back into the hospital next week it might do him good to see his friends and get some normal back.  He hasn’t been to school since September 3.  Of course I want to put him in a bubble and I worry about his immune system and the fluid around his heart but we have spent his whole life fighting for him to be all he wants to be and I just can’t give it up now.