We went back to the hospital on Thursday for another blood transfusion. Carter was really sad that we had to go to the hospital and Jude was really sad that he couldn't come with us. So we all went to the hospital together. Jude isn't allowed in the clinic since it's still on "lock-down", so Dennison and I took turns between him and Carter. It worked out pretty well and Carter was very happy that his Daddy was there. We were there a long time, so by the end we were the only ones left in the clinic. The nurses let Jude come in as long as he wore a mask. At first he really didn't want to but I told him he couldn't go see Carter unless he wore a mask. That was all it took. After the transfusion was complete, we have to wait half an hour to make sure he doesn't have a reaction. During that time, they took his temp and it was 100.3. Bummer. I thought we were going to have to be admitted. But then half an hour later they took it again and the fever was gone! Yea! So we went home. Well, Carter did not sleep well that night and in the morning (yesterday) he was burning up again.
Yesterday was a terrible day.
I told Carter that we would have to go back to the hospital since he had a fever and he completely lost it. I mean really really mad. He was crying and crying and so I told him that if we didn't go to the hospital then he would just keep getting sicker and sicker. His response was, "I want to just keep getting sicker and sicker!" This eventually led him to say that he just wants to go to heaven. He would rather die than go to the hospital?!?! Granted, I don't think he fully understands what it means to die, but it was still heart-breaking to hear.
He cried himself to sleep on the way there and then kept crying when he woke up. The port access was the worst one yet. Which was especially sad because the day before was the best one yet. Our usual nurse was at lunch when we got there so we had one that we've never met before. Carter and our usual nurse have a deal that he can tell her if he needs a break and she'll stop for a few seconds for him. He told this new nurse that he needed a break and she laughed and said, "I haven't even done anything yet" and just kept pulling the tape off his chest. I've never heard him scream and yell like that before. It was awful. To make matters worse, the one doctor that I don't like was the one to come check him out. He's just not very good with kids (why is he in pediatrics??) and Carter really doesn't like him either. He started crying the second that doctor walked in the room. After the access, his port site was really hurting him. Being accessed two days in a row will make it pretty sore. The doctor gave him some morphine and that made everything better. He got really goofy after that and we had some good laughs. Right about the time it started wearing off is when we finally got a room in the inpatient unit (they had been all full until about 5:00, so we had just been hanging out in the clinic). When we first got there, all the nurses and doctors started coming in to introduce themselves, take his vitals, and check him out. He threw up shortly after getting settled and then got the chills and was shaking really bad. It was horrible to watch. They gave him more tylenol and morphine and he fell asleep. A little while later another doctor came in to check him out and woke him up when he was pushing on his stomach. He cried for a minute then fell back asleep. About 10 minutes later he was talking in his sleep saying, "don't touch me, owie that hurts, stop touching me!" I've worried about the emotional trauma caused by all this but after hearing that, it's all I can think about. My poor little boy :( By this time, I'd been crying pretty much all day and felt like I was at the end of my rope. So I traded places with Dennison. I had the car so I asked the nurses if they could just keep an eye on him for about an hour while I drove home and Dennison drove back. Then I asked Carter if that would be ok and he was fine with it since Daddy would be coming. So I was going over with him how to call the nurse if he needed something and he grabbed the button and said, "Oh, I have to tell the nurse something." I asked him what he needed to tell her and he said, "That I am going to get one big new fish." Haha. I stopped him from pushing the button and reminded him that he's only supposed to call if he needs something or needs help. Who knows what he told them while I was gone. When Dennison got there he was fine but said, "You were taking a long time to get here!" He's such a big boy :)
This is pretty much the face he made all day:
And those three little guys above him are "bloodbug-eating monsters" courtesy of Grandma. Carter was very excited when he got them in the mail and wants to take them everywhere so they can "eat all those yucky bloodbugs!"
So he will be in the hospital until 1. His fever is gone for 24 hours 2. His white blood cell and ANC counts come up (what point they need to reach depends on the doctor) 3. His blood cultures from yesterday are clean after 48 hours and 4. he's looking good and feeling good.
Bleh, I'm glad that day is over. Here's to hoping today is much better!
So sorry Robin, wish I was there to at least cry with you. I hope today went better; you all still amaze us.
ReplyDeleteI can't imagine! My thoughts and prayers are with you!
ReplyDeleteCheryn
Robin, my heart is breaking for you! I can only imagine how hard it all is. There is nothing worse than to see the little love of your life in such pain, and with the emotional side to go along with it. I'm so sorry. Carter is so tough, and so are you. I love you and am praying for you. Hang in there.
ReplyDeleteOh Robin! I am so sorry that you have to go through all of this with your sweet family! You are amazing and we continue to pray for Carter to feel better every day and for his family as well!! Sending love to you!!
ReplyDeleteWow. I hope tomorrow is better too.
ReplyDeleteOh Robin. I hate this. I hate that your family has to endure this! I can't imagine how hard this must be. When you're ready for a break from reality, let me know and we'll take a mini vacation for a few hours or a trip to the beach or something. We love you guys and pray for you all the time.
ReplyDelete