I'm not sure when Justin got the phone call, but at some point, someone called him and said they thought we didn't want anyone to come out, and he said yes, we did. Someone finally came out at about 8:00.
On the bright side, they sent out a wonderful nurse. She's older, with pretty, long gray hair, and it's clear that she absolutely loves little kids.
I was at work, and my cell phone rang. I am not really supposed to answer my phone at work, but I was at just the right moment where I could, so I went out in the hallway. It was Matthew. Justin's not even sure how he unlocked his phone, but he wanted to talk to me. The little smarty-pants!
He was scared, though. At one point, when the nurse was getting set up, he locked himself in his bedroom. He also locked himself in the bathroom. This was before he called me. They put me on speaker phone while the nurse accessed his Port. I tried to talk him through it, but it was hard. He cried so much. He really hates that poke. I cried in the hallway at work. I felt so helpless from there. But they got it done, and left his Port accessed. We've needed it every day this week, so it's still accessed.
Here's where the beauty of Home Health comes in. Tuesday was a clinic day. And he had to go under general anesthesia for a lumbar puncture (back poke so they can put chemo into his spinal fluid). Because of the lumbar puncture, Matthew couldn't eat till he woke up after his procedure, which always makes him angry, therefore difficult to manage. Justin couldn't make it to the appointment, so it was just me. I was positive that Tuesday would be absolutely awful.
Typically, Matthew is in a decent mood at the doctor's office until they access his Port. The sad thing is that accessing the Port is the first order of business so we can get the CBC results as soon as possible. So, he's usually mad right out of the gate. Plus, the anticipation of getting his Port accessed has started to make him mad when we're on our way to the hospital.
This week, his Port was already accessed, and the CBC results were already back before we got there. Speaking of that - I was surprised to learn that his platelets were totally normal, so I have no idea why that little cut bled all weekend. Also, his ANC shot up this week to a whopping 3800. He would have been fine to go to that Christmas party on Sunday. But, I do still think it's better to be safe than sorry. Just ask any mom whose kid is spending Christmas in the hospital. I'm sure they'll agree with me.
Anyway, I digress. With his Port already accessed, we got to skip that particular drama at the clinic. Matthew stayed happy. He did crafts, and cooperated with the doctor when she did his examination - even the parts he hates. They managed to squeeze us into the RTU, which is so much easier than the OR, plus it was over an hour sooner than the OR would have been. So, we rushed down to the RTU, and only had to wait a couple of minutes for our turn. He marched right into the operating room, and asked for the flying toy (it's a little helicopter toy that they let the kids play with while they're going under). He sat on the bed and I just held up his back. That was a first. I usually sit him on my lap. And when he started to go under, he knew it, and gave back the toy.
I went to the waiting room feeling peaceful. Another first. It's amazing how much my emotions are tied into his. I just hate it when he's so unhappy. And to see him happy, and cooperative, and his cute little self when we're there makes all the difference for me!
Once in a while he got a little bit nervous. Like when we were waiting for our turn in the RTU, he asked the nurse if she was sure they would put the right medicine into his Port. I can't imagine how he would even have that kind of a thought! I'm not really sure that's exactly what he meant. I think it was more that he wanted to be sure they absolutely had to do the white medicine (that's what puts him to sleep).
Anyway, when it was all done, he wanted Doritos. He's been eating a giant bag of Doritos every day for at least a week. It's almost the only thing he'll eat. A year ago, that would have mortified me. Now, I'm happy he's getting some calories. He finished off the bag of Doritos that we had brought with us - it was about equal to one of the single serve bags. Then, the nurses in RTU recovery gave him another bag, which he polished off as we were settling in upstairs, and the nurses upstairs gave him another bag, which he finished while he was getting his chemo. He didn't eat or drink anything else at the hospital Tuesday.
I win mother of the year award!
Going back up to the clinic, I took him up in a wheelchair, since there were no wagons to be found. I just had too many things to carry and still carry him too, which is a good idea when he's still groggy from anesthesia, so I needed some wheels. I couldn't believe how much more stuff we were leaving with than what we came with! He got the following Christmas gifts from the hospital: A Pillow Pet (this makes his fourth), a hat, a teddy bear, a felt Santa head full of candy, and another hat. Basically, every time he went somewhere, they gave him more stuff! Then, at the end, he wanted to pick another hat, and I said he had already picked one, but the nurse said there are 7,000 hats there right now, and he can really take as many as he wants. So, I let him choose one more. He was so happy, I couldn't resist.
The absolute best part of the day was when we went back upstairs for his chemo! A bunch of my cancer mom friends were up there on Tuesday at the same time. Since he was happy, he wasn't being clingy or needy - he was playing. So, I got to talk with a lot of friends. I met a couple of moms I've gotten to know really well online, too. Matthew made a new friend, and saw a friend he's met a few times before. He played a board game with his new friend (Carson), and his older friend, Tyson, brought him a Christmas present that just made his day. (Oh yeah - there's another thing we brought home with us!) He got a visit from Santa Claus (now he's pretty sure there are two Santa Clauses - little smarty-pants!) and from Annie, the therapy dog, who is very sweet, and soft.
Then, we went out and spent some time in the garden before we left. I have a feeling that has become a new tradition. And that's quite alright with me. As long as he can have some happy memories of the place that will dominate his childhood memories.
Here are some cute pictures of the day!
Matthew and his new friend Carson. They're only a few months apart in age, and they had such a good time together! If you look close, you can see the tube coming out from under Matthew's shirt. He was still getting his Chemo. Carson was done and just waiting for Santa to visit - he didn't know that, but he was having fun, so he didn't notice.
I hope they don't mind being blogged! Matthew and Santa are having a chat about Pop the Pig, which is at the top of Matthew's Christmas list. Carson's too. I think it's cause they show the commercial a hundred times a day on the Disney channel, and these kids don't get out much.
Also, in the picture: Rachelle, the child life therapist, who is AMAZING! Also a doctor whose name I have unfortunately not learned yet, and in the blue gown a nurse in infusion whose name I also have not learned yet (but she's super duper nice, and I like her a lot.) There's just a lot of names to learn at the clinic!
See the Doritos on the game board there? Yep, they were a constant fixture on Tuesday.
Matthew and mommy in the garden outside of the hospital. We were having a good time.
Doesn't he have the best smile ever?! And, of course, there are his Doritos.
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