A long hospital stay

We have been trying to get Shad into the hospital for round 3 of his chemo for quite some time now.  We first went and got his counts checked on Halloween, fully expecting to come back later that night.  His platelets were too low however, and we were told to come back the next Monday.  His platelets were still too low, so we were told to come back on Thursday.  We went back on Thursday only to find that his platelets were going up,  but were still too low to start chemo.  The next Tuesday we returned and his platelets were finally high enough, but his neutrophils had dropped.  They weren't so low that he couldn't be out and about, but they were too low to start his next round.  The doctor was hopeful and told us to come back on Thursday.  We went back that day only to be told that his neutrophils were still too low.  His monocytes were up which showed that his neutrophils were recovering instead of continuing down, so he knew that he was improving.  We were supposed to go back the next Monday.

Saturday morning came and Trevor and I awoke to a grouchy and somewhat emotional boy.  He and daddy went and bought donuts.  They came home and we worked on cleaning up the house a little bit, and then I noticed that Shad was feeling hot.  His head is often times hot, so we debated if we thought he had a fever or not, but I was pretty sure he was abnormally hot, so we went in search of a thermometer.  Of course we couldn't find one, so I sent Trevor to the store to get a new one.  He came back a little while later, and Shad had a fever over 102.  I called the hospital to let them know we would be coming in (anytime he has a temperature over 100.4 we have to go in).  Luckily we already had our bags packed from thinking we were going to stay earlier in the week.  We gathered the rest of the things we needed and left.

We got to the hospital and they took blood for a CBC and also for a blood culture to check for infections.  They admitted us and let us know that Shad was anemic and would need a red blood cell transfusion.  The doctor also wanted to start him on antibiotics to fight off any possible infection.  The blood culture takes 48 hours to mature, so they start the antibiotics as a preventative thing even though they don't know what it is he is fighting.

Trevor went back home to get some things we had put in the wash before we left, and grab a few things we realized we had forgotten.  Shad and I stayed at the hospital and watched stuff on his ipad.  That evening the nurse started the first antibiotic.  It was supposed to run over 60 minutes, and then they would do the other one.  About 20 minutes in Shad started freaking out because his eye was hurting.  I checked for an eyelash, or anything else that could have gotten in it, but couldn't see anything.  Then he was crying because his feet were hurting.  I pushed the call button and the nurse came in.  I let her know that Shad was complaining about his feet and eye hurting.  About that same time he told us they weren't hurting anymore, they were itching.  She stopped the medicine because he was having a reaction to it.  He had what is called red man's syndrome where they person gets really red and flushed, hot to the touch, and itchy.  It is not considered an allergic reaction, just a reaction.  She gave him some benadryl and told me to let her know if he started breathing funny.  His lip started to swell up a little bit at this point which he didn't like at all.  The nurse left and I tried to keep him from scratching.  When he got to the point where I was worried he was going to break the skin on his head I called the nurse back in, and she gave him a wet washcloth to put on and help the itching.  He said that helped and cheered up after that.

Sunday was a pretty lazy day spent watching shows on the ipad, going for a walk, doing some crafts, and snuggling.  It was very uneventful, which are sometimes the nicest kind of days at the hospital.

Monday Dr. Pene came in and let us know that Shad's counts had all recovered, and so as long as his blood culture was negative then we would start pre-hydration that night, and chemo the next day.  We were happy about that, we were ready to get round three over with.  That afternoon Trevor and Shad had rest time, and I crocheted some hats people had ordered.  Shad didn't really sleep, but he needed a little bit of down time, he was being kind of ornery.  The blood culture did come back negative so we got ready to start chemo.

Tuesday Shad started his chemo about 10:15  That afternoon he took a nap.  The doctor said to keep going with the drug as long as Shad seemed okay physically (breathing ok, not complaining of headache or dizziness, going to the bathroom etc.)  His heart rate still went pretty low with this drug, but we pushed through it and got it done.  He seemed fine the whole time.  It was a long night for me though.

Wednesday Shad had the nurse that we don't really love, but we survived.  His first chemo didn't finish on time, so we didn't get started with his day two drugs until about 11:30.  The zoo came that day, but since Shad was getting chemo he wasn't allowed to leave his room.  He sat at the window and looked at the animals.  The zoo lady was really nice and brought them right up to the glass so he could see them well.  He did get to go right outside his door and pet the big dog, so he was happy.  That afternoon Trevor went home to do some laundry, and Shad and I went out to play.  We hadn't been allowed to go out much because at first they didn't want him exposed to anything, or to expose anyone to anything he might have.  Then he had the 24 hour chemo and wasn't allowed to go out.  We played chutes and ladders and finding nemo go fish.  We also played a dice game I had brought from home and colored.  He played with some of the other toys, and then when his battery started getting low we went back into his room.

source: naval medical center san diego facebook page

Thursday we did chemo again in the morning.  He was starting to feel more nauseous, and didn't really want to go out and do much.  It was raining off and on all day.  We decided to go for a walk that afternoon, but by the time we got outside it was raining really hard.  We walked a little ways (where it was covered) and then went back in.  We stopped at the Redbox, and Shad picked the movie Planes.  We waited for daddy to get back, and then they watched it together.  Shad said it was boring, and Trevor wasn't a fan either.  That night we had a short dance party while we waited for the nurse to come in and do a dressing change on Shad's port (the sticker was falling off).

Friday was a pretty uneventful day.  We got more movies from the Redbox, The Croods, and Epic.  Shad loves The Croods, it is pretty cute.  Epic was ok, but he was happy just to watch it once.  That evening I was snuggling in bed with him and noticed he felt warm again.  The nurse came in and took his temperature.  He had a low fever, which meant they had to start another blood culture and do some other blood work.  They also had him do a chest x-ray because he had had a cough the past few days.  We waited for the x-ray place to call for him, luckily they called pretty quickly.  The nurse let him ride in a wheelchair which he thought was pretty awesome.  He did great for the x-rays, and the technicians seemed competent and worked well with him.  They didn't have to do any repeats because he held so still, and did just what they asked.  Everything looked good from those.

The next morning he was complaining of belly pain.  Since he had had the fever they were being extra cautious, so they sent him to get an abdominal x-ray.  It showed that he had a lot of stool and gas, so they started him on Miralax.  That seemed to help and he started to feel better.  He threw up once or twice this day.  Bishop and Sister Hadley came to visit that night, which was nice.  He loves having visitors.  As they were leaving the nurse came in and said that they had just realized he needed to be reaccessed that day.  We went in the treatment room to get that taken care of.  He was not happy about it at all.  They took the sticker off, took the needle out, put a new needle in, and then put a new sticker on.  He was complaining that it hurt as soon as they finished.  We thought he was just sensitive because they had poked him without any numbing cream, and told him he would be all right.  About an hour later we were getting him ready for bed and noticed that the area around his port was really red and beginning to get puffy.  We called the nurse in and she said that they were going to have to reaccess him, just to make sure the needle was in right.  The doctors came in and took a look and decided they thought it was just an allergic reaction to the sticker, even though he has used that same sticker tons of times before.  We ended up taking it off, putting some of the numbing cream on, and then putting another new needle in a while later.  Once that was done Shad finally got to go to bed.

Trevor took the sticker off the second time because the nurse was so busy

Sunday Shad watched the Redbox movies we forgot to take back one more time.  That afternoon we dragged him out of the room to go on little walk.  It was a beautiful day, but he was cold.  Finally we got to a sunny spot and he sat down to warm up.  Pretty soon he was laying down on the bench.  He was loving being outside, and kept talking about the nice sunshine.  It was pretty cute.

Monday we finally got to go home.  I don't know why, but those two extra days at the hospital seemed like forever.  We are enjoying being home, eating our own food, sleeping in our own beds, and of course playing with our own toys.

Check up, Audiology, and the zoo

Yesterday was a busy day for us.  Shad had an appointment at the clinic to check his counts at 8:45.  We got there, got a label for the 12 hour urine collection we had done, and hurried that up to the lab.  We got that done, and then went back to the clinic where we did his vitals, and then went in Jo's room and he got accessed.  He is getting so brave, and didn't even cry at all during the poke.  She took his blood, and sent that up to check his counts.  We went back out to the waiting room, and the doctor was with us shortly.  He checked Shad over, and we went over the plan for admission today.  He wanted us there by 9:00 tonight which was fine because we still got to go trick or treating.  He said we could go ahead and get him deaccessed, and if anything came up in the lab work that would change things he would give me a call.  We went back in to see Jo, and she took the needle out.  As we were walking out the lab results came.  The corpsman handed them to Jo, she took one look, and said to wait there she would be right back.  She went into the doctors' area and came right back out.  Apparently his platelets were low, he had been at 70 something on Friday, and now he was at 26.  Everything else was still good.  We had to reaccess Shad so they could get a little bit of blood for a type and cross.  We were told we wouldn't be starting chemo as planned, and to come back on Friday morning to check his platelet levels.  They would have platelets ready in case he needed them.
After that we had about half an hour until his audiology appointment, so we headed down to McDonalds to get some breakfast.  Shad wanted "a shaushage sandwich like grandpa gets" and an apple juice.  We got our food and sat down to eat.  As soon as we were done we headed up to audiology.  Ms. Nicole was happy to see Shad, and we were taken right in.  They tested his eardrums, and then he did the beep tests.  He is supposed to raise his hand every time he hears a beep.  At first he had these big headphones on.  After a little bit the audiologist came in and said she wanted to try it with piece that goes in his ear.  His left ear wasn't doing so well, but she thought it might be because his ear was getting squished.  She changed it over and ran the test again.  Luckily she was right, and everything was fine.  He has gone down a tiny bit in the highest range in the left ear, but she said it is not something to be concerned about yet.  I took some videos because I thought he was so cute, he was focusing so hard.  The first is him repeating words that she said to him, the second is him raising his hand.  The room we were in was pretty small, so it was hard to get far enough away to see him really well.

After we finished up at the audiologist we headed over to the zoo where we met up with Abigail, Kate and Mandy.   We walked around a lot and saw some bears, monkeys, orangutans, elephants, camels, a jaguar, and some other things.  Some of the highlights included climbing on all the statues, in the koala tree, and riding Skyfari.