For not only being a great quarterback and a hunk but for making it a better place here at Children’s for teens. Avery walked down to the Aikman end zone last night and played video games for an hour. He is still talking about going back.
For those of you keeping score, he hasn’t walked that far since September 11 and hasn’t played video games longer. I want my son back and I am starting to see signs of him!
Is how long we were home before we had to come back to the hospital. I could tell Avery was uncomfortable but he wouldn’t tell us what was wrong. By 8:45pm he was having chills and starting a fever spike and he had joint pain. I sent him to bed hoping he was just overly tired. By 10:30 he had fever and I called the Rheumatologist on call.
We came back to the ER. He was rushed through because of the fluid around his heart and the fact that the blood return on his hands and legs was really slow. We were taken right into a trauma room and things happened pretty quickly. It was a little scary to watch. He got an EKG, chest xray, iv, and blood drawn within like 10 minutes. His heart rate was crazy low and so was his blood pressure.
When we first made it into the room he did the really cool thing of his heart rate dropping and his eyes rolling back and passing out. They rubbed his chest and adjusted his head. We made it back to a room by 4am.
I got the bed from hell. Seriously, I have complained about it from the second I sat on it and if I don’t get a new bed before I go to sleep tonight I will be getting myself a new bed. My feet hang off from my ankle down, it is arch shaped and the top of the arch, where your back goes, is metal. I hear they have a new part of the hospital with flat screens, I just want a bed. Our room is so small we have to move things to walk around it. I would make a terrible patient because I would complain about EVEYTHING!
Avery has started high dose iv steroids. He will receive 3 doses 20 hours apart and then hopefully we will be rid of all the scary stuff and on our way to maintenance and remission. He is such a trouper! Poor Z woke up and cried when he realized I was gone again. If all works out we will be home on Friday.
We left the hospital at 7:00 tonight. I can’t believe how dark it is at night. It’s so funny how much the street lights burned my eyes. I haven’t seen dark in two weeks. The hospital is never dark.
We got home and surprised Zachery. I pulled up and honked a few times. I could see him standing at the door. Mike said he kept saying I wonder who that is. I finally got out of the car and he said it’s mom and Avery, I can’t believe they are really home! He ran to me and gave me lots of kisses and hugs. Then hugs for Avery. Even the dogs were excited.
We got Avery in and he laid down on the couch for a couple hours then I put him to bed. He’s so worn out. Mike is in there with him now. He woke up and I can hear Mike asking him if he is ok. I am not sure how I am going to sleep tonight. I will try not to be afraid. I just need him to be at least as good as he was in the hospital today.
For Rheumotology to do rounds and release us. Ok I’m not packing yet. lol But I really think we are going home today. I might have to sleep until they get here.
We have had a great day. Avery is really responding to the prednisone and having two doses a day will help. His rash is leaving and his spirits are good!
I am going to push to go home tomorrow. We can monitor him at home and follow up in clinic. And we get all new residents tomorrow. lol So this is a perfect time to run.
He is so sweet! They told me tonight they fight over him. lol Everyone comments on his sweet manners. The nurse told me that she just left a room where a two year old cussed her out to come into Avery’s room with yes ma’am and please and thank you. So ya I’m proud. lol I love that even when they are mean and wild at home my boys are respectful and polite in the real world.
We had fever at 9:00 when the prednisone was due. I was so totally not surprised. His first dose was given at 3:30 pm on Friday and the second at 9:00 am on Saturday so this was the first full 24 hours we have gone.
The Rheumatologists have been in and have decided to double his steroids. We’ll get 60mg twice a day now. I think that will help. They also told me that his liver function tests were coming back high now but for now he can keep getting the tylenol if he needs it, they think it’s part of the systemic disease. Renal has already taken us off all NSAID’s because of his kidney tests. And he needs something for the pain of this rash. The hope is that when the prednisone is working good he won’t need pain meds.
It was funny this morning, Avery’s temp was 101.9 and the nurse looked at me and asked when did I want to start cooling him down. Like with cold rags and ice. I said oh not till it gets to 104. lol What kind of altered reality do I now live in?
We have a family fridge on our floor that we have been using for two weeks. It has worked great until Friday night when someone ate all my lunch I was unable to eat and was saving for dinner.
Since then they took Avery’s pediasure, boost and breeze that are nutritional supplements he needs since he has lost 10 kilos since coming into the hospital. The $7 worth of ice cream I had bought and my lunch/dinner I never got to eat and his chicken strips and yogurt he wanted me to save were all eaten. I even caught the kids in there doing it, while they were eating all the popsicles and juice boxes for the patients. They asked me if I wanted juice. I explained this wasn’t juice I was getting it was food for my child since he couldn’t eat. Ya it didn’t faze them at all they finished off his breeze.
Everyone is so very sorry, except for the people doing it. The nurses bought Avery more rocky road and put it in their freezer. Social work brought me food cards and talked to the family of the kids that are doing this. They explained that if it has someone else’s name on it, that means it’s not yours and you don’t take it. But honestly that is not something that can be taught at 14!
This horrible rash Avery has is so very painful, as it spreads he yells he is burning. Well tonight it started on his butt. He was begging me to get the nurse, I don’t know what he thought she could do that I wasn’t already doing but hey I’m game. I had but some topical steroid ointment on it, yes the stuff dermatology ordered, and it burned more. So I was using wet rags to cool him down and try to get if off. This rash is like a severe sunburn and it is hot.
The nurse brought a different kind of cream and we tried that, well that burned more. He yelled for me to blow on it. Honestly the nurse and I almost lost it laughing. Here I am leaning over my 17 year old son’s butt blowing on it. I know it wasn’t funny but, well you have to find the humor somewhere. That wasn’t working and by now he was pounding his fists on the mattress and crying, and yelling “I hate burn cream, what is that burn cream, I hate it”, so I said just get the morphine. She put the morphine in his iv and he calmed down pretty fast.
I picked up all the wet rags and washed my hands and went to get a cup of ice. I was standing by the nurses station when we could here in very loudly saying, “ohhhhh yaaaaaaaaahhh!” lol Again all we could do was laugh. When I got back into the room he was smiling and cheering and doing this squirm thing. I said what are you doing? “Butt walk massage!” Every time I tell him to scoot up in the bed I tell him to butt walk back. I guess the morphine was working and he was out of pain! lol
Friday brought us relief. I had asked the chaplain to find us a priest, the hospital’s priest was on vacation. I wanted Avery to be anointed, so she found us one and he came at 3:30.
"Is any among you sick? Let him call for the presbyters of the Church, and let them pray over him, anointing him with oil in the name of the Lord; and the prayer of faith will save the sick man, and the Lord will raise him up; and if he has committed sins, he will be forgiven" (Jas 5:14-15).
The anointing was beautiful, it brought tears to my eyes. Mike and the chaplain were here for it. Avery was so out of it he really didn’t know what was going on around him. When we all laid hands on him I honestly felt the stress leave my body, like God was just taking it. I know that Avery needs God’s Grace and I feel so blessed that he received it.
The Dr’s also started the prednisone yesterday. Mike was here for that. He didn’t seem to understand why when the Dr said lets give him prednisone someone didn’t just pull it out of their pocket and hand it to him. lol He went off on the immunology attending, whom I’d never met.
I had to leave and go to Target to get Zachery’s birthday gifts and asked him if he was ok with that. He said, “your the one leaving me with them.” lol I warned Avery’s nurse that Mike had no interpersonal skills and that if anyone came in and asked about the rash would she please tell them what is had looked like, since my husband said it looked the same as when we came in. lol I do love him but there is a reason I am the one here at the hospital and he is at home.
When I’d made it back to the hospital dermatology was in the room and they were asking Mike if they could biopsy Avery. He told them he wouldn’t tell them they could do anything that could hurt him. I am texting him saying if they think it will help tell them yes. I made it back to the room and they were talking to the nurse at the nurses station. I asked them my questions and they said they were recommending he be removed from all non essential medicine and ordering an ointment to be rubbed on his whole body! Are they serious? lol I said does it come in a vat? I told them the most essential medicine was the one that would put him into remission and was already removed and that only left tylenol and codeine since renal took him off of the mortin because of his kidney damage. So they took their briefcases with wheels and walked away. I seriously think I scared them. They had to be first year.
Friday night we were fever free and had a good night. I slept 4 hours straight which is the first time that has happened since we got here. Avery was still on morphine, codeine, and benadryl for the pain of the rash but he was comfortable and not clawing at himself. He was very surprised to find these marks all over his body. I just cover them up and tell him they will be fine.
Our day started with me picking him up off the ground from passing out in the bathroom. I packed and cleaned our room and just wanted him to be home and happy and healthy. But this crazy new rash, wo don’t know what it is. So we stayed and didn’t get the anakinra.
So the rash is worse and he’s screaming his legs burn and he’s in pain. Not 2 hours before that he was sitting up and laughing with me. I felt so helpless watching him hurting and his hands swelling. I just want someone to help him. I keep talking to him in a calm voice and telling him to breath that it’s going to get better, but I don’t know that it is. I don’t know what is happening. The machines are going off and the respitary theripist is there and they are putting him on oxygen and it’s only helping some. I’m terrified because his hands are swollen and I don’t know what that means. I’m afraid he’s going to swell so much that he’s going to cut off the blood to his hands and loose them.
I just want to scream at the Dr’s to help him, fix him. All the while I have to be calm to help keep him calm. It is so scary I don’t know if I can do it. What if I make a mistake and he suffers for it. The responsibility I feel for his life is breath taking. It’s like everything rests on my shoulders and I have to process all this information because if I don’t think of all the horrible things that could be wrong no one will and something will be missed.
Yet while all of this is racing through my head and my heart I am face to face with my precious boy talking to him, telling him it’s going to be ok that we are going to fix this and he just needs to breath and not worry. I just want to pull him into my lap and hold him. I want to kiss it all away.
The other night I was holding him through a set of bad shakes and I remembered the song I would sing to him when he was a baby.
Put your head on mommy’s shoulders I’ll whisper in your ear as I hold you near Avery. Put your head on mommy’s shoulders I wipe your tears as I hold you near Avery.
That’s all I need to hear in a dead sleep to be up and moving. Now don’t get me wrong, normally I’m one of those oh just give me a few more minutes or do you really need me kind of moms. But here in the hospital as soon as Avery says it I’m grabbing the urinal or something.
So a bit ago I hear MOM, BATHROOM. I was up and moving the tray and taking off the pulse ox and helping him to the potty. Got business taken care of and told him to stand up. I said ok if you can’t stand you can’t go home today. Ya in hindsight I feel like an ass.
So Avery stood in the bathroom and I told him to stand there a sec and I’d help him back to bed. I turned around to wash my hands and he passes out and has one arm in the toilet and is kinda laying over hit. I try to help him and can’t so I reach over and put the nurse call button in the bathroom. Of course the thing breaks off so I start pushing on it and yelling for help.
Our nurse was right in with a couple other nurses and Dr G I because a Dr two months ago and know everything. I told them it looked like he passed out. He was upset and we couldn’t get him up. I asked someone to hand me his cup and we could catch our breaths. I gave him a drink and told him to breath.
We got him up and back into bed. Dr G left. Uh I realize it’s nothing to you but you patient just passed out, think you’d want to do something. So I went back out and asked the nurse to hook his pulse ox back up, since I’d ripped it off on our way to the bathroom. And I wanted her to take a blood pressure. I said I realize I’m not a Dr but maybe it had bottomed out again and we should check it. I do think he will do ok at home. We will take it easy and he won’t be on isolation, so he will be able to walk around. Just hope everyone else sees that and that nothing else is going on.
A couple more Dr’s came in over night to look at Avery’s rash, which is pretty much all over his body. I swear on of them got on their phone and googed rashes. lol Our pedi will be here in a couple hours and he’s great with rashes so hopefully it is just more of the Still’s rash.
And we have a new crazy rash that isn’t like the other ones and is in new places. He’s now spiking a fever 5 hours after dose 3 of the anakinra. I have no idea what that means or if it matters. If I look at the whole picture, I think it has helped. But now I worry he’s having an allergic reaction to it. Dr G I’ve been a dr for two months and I know everything came in and had not a clue.
They are doing another culture because of his fever spike and being followed by infectious disease. I really hope we are still going home tomorrow. I wish my baby could catch a break.
We made it past the 4:00 spike time with just a little fever of 100.4. Not bad and the Dr thinks we just need to work on the dose. He went 16 hours without fever and that hasn’t happened in 14 days. He got his second shot at 6:30 pm and spiked another fever.
I woke up to a nurse in the room about to draw cultures on him. I was like wait what is going on. I’d already told them no once at 100.4, it’s supposed to be over 102 before they do them. The nurse told me his fever was 102 something and he looked bad. His face turns red and yes it’s starting to look salmon colored. He was so clear before. So they drew the labs and off they went.
There was blood on the sheets and Avery does not like that. I covered it with a wash cloth so he couldn’t see it and promised I would change his sheets soon. I knew the sweats were coming and seriously why do double work? lol I got him a bunch of juice and one of his milk shakes, boost, and helped him through the fever. I am learning to not fawn and to give him some space.
The nurse stuck her head in and asked to see me outside. It seems that someone put the wrong label on the culture so pathology wouldn’t accept it. They wanted to stick him again. I said no. But then worried if I was making the right decision. He has had blood cultures every other day since last Monday and they have grown nothing. I really think the anakinra is going to work and that he does not have an infection. But what if he has gotten one now and I make the wrong decision? So I told the nurse to page his Dr and tell him I can’t make it but would do what he suggested. The resident decided that they wouldn’t call him but would wait and see what happened when the anakinra kicked in. It takes about four hours to get fever relief.
About 9:30 he sat up and griped “stupid sweats!” That means the fever is coming back down so I am happy. I tell him I know you hate the stupid sweats but I hate the scary shakes more. So I have given him a shave and a chair bath and he is comfortable and watching Iron Giant.
I am really trying to stay positive about the anakinra and the possible Still’s diagnosis. I am ready for us to be home and for him to be well. I do think we might need to give him more of the med which means a second shot. But people with diabetes have to take shots every day, you just deal with it.
I know we are blessed. There are kids that are really sick and might not get well. There are families all over having to deal with having a child in the hospital and all the havoc that causes everyone. It is hell watching you child sick and not being able to help them. I think that is the heart of a mother. If we could, we would reach in and take it from them. And honestly I tried. I have tried wishing, willing, begging and praying it away. For whatever reason we are still here and I know he will be ok and I know we will be home soon. Hopefully before Saturday for Zachery’s birthday. But even if not that day then one close to it. Because I know he will get well again. He was too close today for this to not work at all.
He has gone over six hours with a normal temperature! Things are looking up. I am so relieved.
He’s my child, you don’t have children. Yes you have been a Dr for a couple of months but I have way more to loose than you do. I can’t just wait and see what happens. The Dr said 4 hours and it’s not my fault it took you two hours to figure out how to order the drug and another hour and a half to get it here from pharmacy and yet another hour and a half to get someone to give it to him. Then give it to him wrong. And I want to know if he spikes a fever after the 4 hours if that means it didn’t work or if that means we have to try again. Yes I know you don’t know anything about this drug and that is why I explained to you I was sorry everyone was sleeping but it wasn’t my fault it took four and a half hours to give it when I should have known the answer by then. So really me taking twenty minutes to find my inner self and relax isn’t going to matter. Cause see I promised my son that this was it that he was going to feel better and get to come home soon. So when you can even fathom what I am going through then you will know that I can’t just sit and wait and not worry and you have no right to ask me to.
Avery got his shot of anakinra at 9pm. I got a little anxious since it was taking so long. The Dr left at 4:30 and said he would be getting it. We agreed to be in a study so they drew labs. They had to sick him anyway for another culture and I figured if it could help someone else find an answer sooner then that would be nice.
I kept looking for the shot to come and after about an hour the resident came in and asked the nurse if she was supposed to order it and she was so she asked the nurse if she knew how to order it, then wanted to know what the dosage was. At that point I’d googled it and was ready to tell her. So they drew blood and we went down to sono for his kidney sonogram. We made it back to the floor at 7:30 and it was here waiting on us. Unfortunately his nurses son was in the ER and had been hurt so she had to run. She gave report to a ne nurse before she left and by 9 when we still didn’t have it I was freaking a little. I really don’t want him to have another fever spike tonight if we can help it.
So the charge nurse come in and gave it. Unfortunately, she gave it sub d instead of sub q. So she said she call the pharmacist and he said it would take an extra hour to work. I just hope it does work.
I guess we go to sleep and see if we have a fever in the night and how he feels in the morning. They said fever relief in like 4 hours and then in a couple days everything is resolving.
Sunday Avery had a great day. It was the first day he walked spontaneously and I really believed he was on his way to being well. What I later realized was I gave him his advil an hour and a half early.
By 4pm I could tell he was starting to feel bad. By 6pm I could tell the fever was back and he was really feeling bad. He was back to not being able to move without pain. At about 9pm he started having horrible shakes and his fever went up to 102.2, which was the highest it had been. He’d been on antibiotics for two days so I called the after hour nurse. She paged his Dr and called me right back. Said the Dr said he was concerned enough that he wanted him to go to Children’s and I needed to bring a bag. I told her we were about two hours away but as soon as someone got to my house to take care of Zachery we would be there.
Mike met us at the hospital. He was standing by the road so he could help me get Avery out of the car and into the ER. We walked into the hospital at 11:30. He was triaged and sent to the emergency department as a level 3. We waited until 6 am to see a Dr. After giving all the info to the resident, she ran off to find a Dr. At 7 am an attending walked up will all kinds of tests and ideas. We were admitted to the hospital and made it to a room by 1:30 pm Monday afternoon.
Since then he has had nasal swabs, throat swabs, blood cultures, skin swabs, 3 chest x-rays, 4 EKG’s, an echo cardiogram, 3 different kinds of antibiotics, 4 iv’s and dozens of blood tests. And with the exception of having the rhinovirus everything has been negative for infection. Some of his labs have been abnormal but they are ruling out so many really scary things.
So now eight days into a hospital admission and fifteen days since onset of symptoms I sit hoping to hear my son has Still's disease (Systemic-Onset Juvenile Rheumatoid Arthritis).
I say hoping because his fevers are hitting 104+ now, he is still barely walking. It is horrible watching him go through this. Right now he is spiking fever and I’ve had to sit away from him because I think I was making him crazy by touching him and asking if he was ok. I just promised him this would be the last one and then he will be better. God let that be true!
We added another ology to our team today, Renal. They are doing a sono on his kidneys and a 24 hour urine collection. They wanted to take him for the sono a bit ago but he started spiking a fever so we put it off. They are open 24 hours a day. lol I think they are sending in a pain management team to see if we can get him off the mortin.
The next morning I called the Dr’s office at 8 am, I was trying to win the first phone call lottery. I made an appointment to see the nurse practitioner and took him in. He was having a really hard time walking by then. I was having to help him stand and walk. He said his ankles hurt and his feet and his arm. The advil was helping so I took that with us I didn’t want him to miss a dose because as it was it was only lasting a couple of hours. I also took the paperwork from the ER visit and the Rx that Dr wrote us which I hadn’t filled yet. The nurse thought he had fifth disease which is a virus and it can cause pain in adults. She told us not to fill the Rx for steroids, there were more side effects than what could help him.
So we went home and I gave him advil for the pain and watched him. When the advil was working he could use his hands, when it wasn’t he couldn’t. That was Tuesday after Labor day and pretty much the last day he got off the couch.
The pain was bad. He couldn’t do anything and the advil was only lasting a couple hours. On Thursday I called the Dr’s office and asked how to control his pain during this time. The joint pain with the fifth can last for up to 4 weeks so we aren’t thinking anything different at this point. He had started having fever, so I mentioned that. They wanted to see him if he had three days of fever but gave me some different doses for the advil to help with the pain.
It was hard watching him like this. I kept saying to him Avery I hate this! No more sicky! On Saturday morning we started on our forth day with fever so we headed back to the Dr. He send us for some blood test and said he’d call me that afternoon.
Avery’s once normal blood tests were now elevated showing an infection so his Dr started him on antibiotics and said if he still had the fever on Monday he wanted him seen by Infectious Disease.
At least that’s what he thinks. And well some days it is. I like getting out in the evening and ok I admit it I like soda. So two weeks ago, not too long after Mike went to work, the kids wanted ice cream and I wanted a coke. So I said come on lets go to DQ! We didn’t have school the next day so why not.
I think the kids might have been in their jammies but I said throw on some shoes and lets go. It’s not like I’d go in. I hate going in, I love the drive though.
Avery was the last out the door and i was telling him to hurry so bugs didn’t get in the house. He was putting on his shoes and said owe, his foot hurt. I’m sure I thought ok whatever, or knock it off just put your shoes on. I know I thought it was odd and kept asking him where it hurt. I think I even told him to just not wear shoes, it didn’t matter. I do know I asked if he just wanted to not go, we could stay home, but it wasn’t bad enough to miss DQ.
I didn’t worry too much about his foot, he was walking ok. I did keep asking about it and tried to pinpoint where the pain was. Then a couple hours later I had him sitting on the couch next to me and was talking to him about antagonizing his brother. I noticed a rash on his arms and asked if it itched. I couldn’t feel any bumps but again thought it was odd.
My first thought was oh no he’s allergic to his new Axe body spray. But it didn’t look like when he had hives. But I went ahead and gave him some Benadryl and sent him to bed. I checked on him before I went to bed and he seemed fine. The next morning he said his left arm hurt, he couldn’t bend it. His foot still hurt and the rash was now on his legs too.
I called the Dr’s office and left word for the nurse on call to call me back. I told her about his symptoms and that what worried me was that one of his pimples or bumps he has was infected and was in his blood. He was having a hard time walking on is foot so she told me to take him to the ER.
I freaking hate the ER, it’s full of sick people. And being a bit of a germophobe it’s not somewhere I want to be and I needed to take Zachery with us because Mike was sleeping for work. We didn’t have long to wait and the Dr didn’t think it was too much to worry about. They ran some blood tests and everything was normal. He thought it was a side effect to medicine or some rare skin thing. He also started him on steroids and said if he wasn’t better in a couple of days to take him to his Dr and that he’d like him to see the rash. So we went home, after stopping at Sonic.
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