We had our Rituxan infusion on Friday. I was having anxiety a bit last week just trying to figure out why. Like my last post stated Gary suddenly was doing so well, and on his own. No drug changes, nothing. Rituxan is a 11 hours infusion. So that automatically bumps you to being admitted. Before being admitted, you stop in at clinic for a little chit chat. I was prepared to try and maybe wiggle out of this one. The intern came in first. I have seen her before in years past. (Today is our 2 Year Anniversary!) She took diligent notes. She seemed to be very interested in every aspect of Gary. It was refreshing in a way. To be listened too. She even entertained the fact that maybe, just maybe we would hold off on running the Rituxan. I liked her. She said she would go talk to the senior doctor, let her know how well Gary was doing and she would be back. We were in clinic for quite awhile. But no bother. The senior doctor came in. We had been seen several time by her over the years.
She had a much different take on everything. She noted Gary had improved. She was glad for that but it didn't matter. We weren't there for what I thought we were there for. She explained that in the Rheumatology Department meeting which happens every Thursday Gary was discussed. Gary's main doctor had noted his slow down and his labs going up, but that wasn't her concern. It was explained to me they were running Rituxan again sooner because of the calcinosis. I was a little dumbfounded. Oh. ok. Guess I can't argue to go home. The other bigger kicker was that this decision was made even though the labs we had taken a week before to have his B cells checked, had not even come back! The B cells aren't back but they still wanted to run it. What I don't know. Why would they do that if they are not being made. What I do know: They have been doing this a lot longer than I have. Gary outward presence had improved, but he continues to get new deposits. He even had some new ones in the top of his shoulder I thought I felt. He has four new ones on the back of his elbow. The ones in his hip that was effecting his walking a little I think are most concerning for everybody. But he has been complaining less so that is a good thing. Needless to say but she was pretty confidant. We were able to talk about Gary's voice. We have lovingly nicknamed him Gollum. Gollum is the little troll character from Lord of the Rings who has a raspy voice. He literally will lose his voice. I asked if the calcium on the front of his throat could be effecting his vocal chords. She worked through it and tried to get a feel if the deposits were that deep. She talked about doing a xray to see just how deep they go in. Even if they knew that is what was making his voice hoarse, the fix would be surgical removal of the calcium. Not necessary at this point. She was pretty sure however, it wasn't possible.
After an hour and half in clinic, we went ahead and checked in. It didn't take long to get admitted. I informed them that it was our two year anniversary this weekend, and we would love love love a window room. Children's Hospital is currently expanding. In front, was a large crane. A cranky! When we pulled up, Gary was so so excited. Did we get a window room? Of course not. Quite the opposite. I even told them, "what are doing? I am not kidding. I wanted to window." NO. We were put in the room with the cutest little guy. He was about one and a half I would say. He wasn't very loud or anything so what can you do. Just go with it.
*Nurse review* First nurse who we were checked in with. F. Fail. She did nothing. I believe she putzed around so she did not have to deal with the infusion at all. We had this conversation in the beginning about angry parents and medications not coming from pharmacy fast enough. I said something to the effect of "don't take it personal". She laughed shyly as if to set the stage, "well I do take it personally, its out of my control when the orders and medications come." We got into the room at around 4. She shifted out at seven. The only thing we accomplished was the IV start. I even heard her take the call that the Rituxan was ready at 530. She apologized and said she wouldn't not be getting anything started because she had other patients. She said it wasn't safe. I just somehow don't believe her. Our next nurse was so VERY VERRY good! So she made up for it. When the nurse came to say, "I'm going home, sorry about the delay". I said, "great, thanks." Think she got the message. Right away she started the premeds. She started them wrong but at least she could right down she did something. She was suppose to run the benadryl but got the steroid going. I assumed it was the right one because she gave him tylenol. She was ready to go home. Basically hung it up and ran home. That's ok. The next nurse made up for it.
Just want to say I realize they have a important difficult job. Just because a nurse does not do things in my time frame means there is a reason. I would rather the nurse delay our infusion then do it unsafely. So I take it back.
Our roommate at about 6:30 became motherless. I heard his Mom say, "ok, I'll be back tonight." I said out loud as she left the room and he began to sob, "WHAT? NO YOU HAVE GOT TO BE KIDDING ME". The little baby sobbed for "Mama". I just sat there in shock. He cried and cried. Sobbing for "Mama". An intern doctor came in to ask me a question, I couldn't answer. I just stared at the curtain with the very distraught child behind it. "You people cannot possibly expect me to sit here for hours on end listening to the poor baby sob for his mother. Do you know what it does to me?" I mean it literally put my stomach in knots. It's not my child, I have no business going to pick him up and care for him as he is all alone. The nurses cannot stay with him. The nurse KNEW IT too. She knew that the Mom was going to be leaving. That is why she gave me the "don't hate me speech". It was really hard. It puts me in a compromising, moral implicating situation. How can I as a mother, an adult, a human being with even an ounce of decency let this baby cry and cry. I tried my best to keep his video playing try and distract him from his abandonment. His cries got sporadic as he tired out. He would nap then suddenly scream out for "mama". She never came back. "Mama" never returned that night. So all throughout the night he would cry for her here and there. Grandma came in the morning to be with him so that was good. I know he was safe but I can't imagine what the how the child must feel with whatever had him there. He had J tube and a central line so he was a frequent visitor of Children's. I don't like to judge people. I know its not what I know, it's what I don't. I just don't understand how they could do that to us. My husband tried to get them to get us into another room but they explained it just wasn't going to happen.
*IV Start*: We got it on the first try but note to self, Gary is having a reaction the numbing cream. We numbed his hands and hours after the IV was done and in, he had a red circle burn looking mark on the top of his hand. The nurse said, "yes, it looks like he may be allergic or having a reaction of some kind to it." That kind of stink because he hate the J-Tip which numbs with a quick air blast. I hate that one too. Looks like it hurts but I am not sure what to do at this point. Wishing I would have done the port thing two years ago. But at least we still have good access to veins. Gary had lots of anxiety over this one. He tried to make himself throw up he was so upset. But after it was all over, he wanted his choice of a surprise from the prize box. Well it wasn't around. The nurse came back with beanie babies. He looked at her and said, "those not toys" sniffling. I apologized to her and said, "we have been doing this for two years now, he knows the ropes, must find the surprise box." I think one day I will make sure each procedure room has that box. It's full of all sorts of things like footballs, baseball hats, cars, ect,. It truly does make the difference for children having IV's done.
At 2am Gary woke up. He was hungry. I always stalk up with chocolate. It came in handy. He ate a snickers. Then some cookies. And other things. Oooppps. Lots of sugar made him have a little glucose in his urine. So they commenced with checking his blood sugar which was 344. Wooops again? Talk about bad mom, lol? They talked to me about the possibility of why that is bad. I tried to explain he ate a large amount of sugar. The morning rolled around, they checked it again, and it normalized itself. I asked the rheumatologists if I should be concerned. They pssshhhhhed it off. They said it was to be expected with all the drugs he gets.
We were all tired. Gary was unstable. They did a great job of discharging us and getting us out of there the next morning. Gary had his first T-ball pictures that morning. We were pretty certain we would miss them. We made it however, in just the nick of time! I put him on my hip and was running across the field because I could see them assembling for team picture. "Wait!!!". One of the parents spotted us, and held it all up. Very triumphant. Gary was good. Pale, sporting his band aid but he was there. I didn't want to push him but with the help of the steroids he was feeling energetic. After the game he was his typical unpredictable, homicidal, psychotic, steroided out four year old we all run and hide from. He cried and cried and temper tantrum'd a whole lot. The next day he was angry. He even told us he wanted to kill us. Oh good. Let's choose a different hobby Gary. We had done some grocery shopping out of pure desperation. We had no food in the house and was suppose to be celebrating Mothers Day the next day so it was a truly we had too. We bought him a little golf set. When we got home, he didn't care it was pouring down rain. He insisted. I felt so bad for him. He just doesn't know how to express how he is feeling and it comes through. So there, in the pouring rain, cold and crying he played putt putt golf. I bet he has such a hard time understanding the way the drugs make him feel he does whatever feels good. It was pathetic. His beautiful sister, who is so amazing with him, stood out in the rain with him, holding a umbrella over him. Helping him with his every move. We all would have done it but Gary chooses who, and he chose her. She, in her nine year old beauty, is going to make one fantastic mother herself someday. So beautiful and nurturing.
The next day we woke up and celebrated Mother's Day. Gary was a little better, but still feeling very aggressive and very angry. Breakfast in bed, awesome cards! : ) LoVe. We went down to see Grandma and bring her mothers day stuff. She wasn't feeling up to coming over so we came to her. Gary enjoyed stopping in. He wanted to stay and play. So cute.
We came home and family came over. We celebrated Mother's Day with my Mom and sisters and celebrated McGuire's 12 birthday which is on Tuesday. We had a pizza off at McGuire's request with him being the judge. It was a lot of fun. My son has such a big heart. He felt terrible not being able to pick everyones pizza as the winner. He told me later he didn't want to do that again. LOL. I tried to tell him it was fun and not to sweat it. So blessed to have a good family.
It's all still really tough on our family. I find my family sometimes doesn't want to talk about what is going on with Gary. I still have days were I feel upset. I feel upset over this whole Rituxan thing. I need time to recover. It is really hard on our family. The other kids do there best to understand but all's they know is they have one angry little brother who throws grand tantrums that are loaded with the pain. Not physical pain but pain you can see coming from his soul. I know it will bring us closer though and open us to feeling and emotions we otherwise wouldn't have the chance to deal with experience. Without it, we wouldn't grow and learn. God grand plan is at work. I can't wait to see where he leads each and every person in my family with what we have been through with Gary, and where we are going.