Her temp has climbed to 103.6 today. She’s only vomited a handful of times but hasn’t eaten a thing. I’m changing poopy diapers 3 and 4 times an hour. Her ANC was 200 today and dropping. Serenity is a very sick little girl.
Sicker
Today was rougher than yesterday for Serenity. We’d originally hoped she might go home today, but she has had a fever for most of the day even with the Tylenol. She has also thrown up several times; up until now she has complained of nausea regularly but not actually thrown up. It is the saddest thing to see. She isn’t eating so it’s just bile and medicine. It’s hard when she is feverish and I want her to have the Tylenol (because it sometimes works), but I’m afraid to give her anything for fear she will throw up.
I haven’t been out of the ward for 48 hours. I was able to sneak in a shower for which I was grateful. When she falls asleep tonight I will slip down to the cafeteria for something to eat. Today’s food has consisted of a bagel and cinnamon bears.
I’m a little bit worried that she isn’t eating (because of the ordeal with Taran, who had to have a PICC line put in and be put on TPN) but she is still nursing so maybe we are ok. She nursed quite a bit yesterday and this morning. This afternoon and evening just a bit because she was feeling so nauseated. We are still awaiting the C diff results but her diarrhea is back in full force & she cries when I change her diaper (which is frequently).
She is done with her Ara-C, which might be the cause of the fevers, and she only has 1 day left of her thioguanine, and then 2 weeks without chemo or steroids, if I’m remembering correctly.
Settling back in
Well it looks like we will be here for a few days. Serenity’s fever came back last night (103 degrees) and Tylenol isn’t having much of an impact on it. She alternates between feeling energetic and cheerful and being lethargic and cross. She spent a long time crying last night because she wants to go home, or at the very least leave the room.
She can’t leave because they are waiting for results to come back on her C diff test. I believe she was tested a week and a half ago and it came back negative, so I don’t expect that she has it but until the results are back we are quarantined & the doctors and nurses put on masks and gowns to come in and check on her. We’re in the Immune Compromised ward so the room is already cleaned & dusted carefully once a day but because of the possibility of Clostridium difficile our room is also wiped down with bleach at the beginning of every shift change.
She only has 3 days left of chemo in this phase of Delayed Intensification but according to the doctors her ANC will likely plummet more & so she needs to be here until she’s gone about 48 hours without a fever.
Back in hospital
After spending 2 weeks in the hospital with Taran (a story for another time), we are back in the hospital with Serenity.
On Thursday Serenity’s ANC & hematocrit were low at our clinic appointment, & she received a transfusion. Yesterday morning she was fine but by night time she had a fever of 101.8 & the doctor on call told us to bring her in to be admitted. By the time we got settled in she was covered in little red bumps & complaining that her mouth hurt.
They drew blood for labs and started cultures on her blood & urine last night, and also started her on Zosin, an antibiotic. This morning she woke up feeling much better & her rash is receding. It is still quite prominent in her diaper area which concerns me, but hopefully we will soon know what caused it.
If she is dealing with a virus rather than a bacterial infection, and continues to make progress we could go home as early as tomorrow.
The week in review, or at least our hospital visits.
Tuesday we went to PCMC for Serenity’s PEG shots. What should have been a 30-60 minute appointment took over 3 hours while we waited for the medication to be sent up. She had a shot in each leg. She screamed; those shots really hurt. Her tummy got red and blotchy so […]
Tuesday we went to PCMC for Serenity’s PEG shots. What should have been a 30-60 minute appointment took over 3 hours while we waited for the medication to be sent up. She had a shot in each leg. She screamed; those shots really hurt. Her tummy got red and blotchy so they thought she might have been reacting but it went away after about 30 minutes, so it could have been a fluke. She had lost a little bit of weight and I think her activity has decreased just a bit. Talysa went with us & got to see the clinic, which was nice for both her and Serenity.
Thursday Serenity and I went back up for her chemo. She had another dose of doxorubicin and vincristine, which didn’t bother her a whole lot the previous week. She immediately got really, really nauseated, which I had not expected. They give her an anti-emetic at the clinic but even with that she was so ill. We hung out at the clinic for awhile and then made the drive home. She held her little throw up basin the whole time but didn’t throw up. After the first day she seemed to be doing better. She has a couple of mouth sores on the inside of her lips but she doesn’t seem to mind a whole lot. She is eating less, but still eating without complaint. And thank goodness she is still nursing regularly.
Taran woke up in the early hours Sunday morning screaming about stomach pain. I gave him Tylenol and he fell back asleep. He seemed fine for a few hours then started crying again. His pain came and went all day Sunday. Most of the time he would laugh and play just like normal but at times he would cry from the pain of his stomach hurting. Monday was the same thing but he was starting to double over when the pain came or writhe around on the ground. Phil came home from work so that I could take Taran in to the pediatrician.
She examined him and he didn’t have any of the classic symptoms of appendicitis – no fever, no real tenderness over the appendix. He had been pooping regularly but she thought it was likely that he was feeling a little backed up and that was causing the pain. She said it was possible that it was intussusception. She referred us to the pediatric radiologist at a nearby hospital for an abdominal ultrasound.
I headed over there and while we waited to be seen it seemed like his pain was getting worse and a little more frequent. The radiology technician performed the ultrasound and didn’t say anything about what he saw. He said that the radiologist wanted to take a look as well and went to get him. The radiologist spent quite a while doing an ultrasound examination, the whole while pointing things out to the technician. I listened with half an ear to what they were saying, but while I recognized the terms from my college anatomy class I couldn’t tell whether their findings were normal. Mostly I concentrated on Taran whose pain was coming in waves, and was very very uncomfortable. Finally I heard the radiologist say that the appendix did not compress and that instead of 4 it measured a 6 or 7, so it would have to come out. I thought I must have misunderstood and asked him to repeat what he said. Appendicitis was not what we had expected to hear.
The radiologist called our pediatrician, who called the surgeon, who told us to go to the ER and wait for an OR to open up. The radiology tech walked us over to the ER and I asked him, feeling a little silly, if he was sure that it was appendicitis because I still wondered. He assured me that they were certain.
We waited in the ER for awhile and I congratulated myself for having the forethought to bring EMLA and put it on Taran’s arm in order to numb it before the blood draw. When the nurse came in to do the IV Taran became nearly hysterical and the nurse assured him that it would not hurt. I figured he probably knew how to do it quick and painless and besides, I had used the EMLA. Taran did feel it, and it really hurt. He was hollering and moving and the nurse was able to get enough blood for labs but there was a lot of moving the needle around and trying to keep it in the vein. Then the vein blew (collapsed?) and they had to put the IV in Taran’s hand. The poor guy was screaming and begging them to stop and another nurse and I were holding him still. It was awful. But the IV went into his hand pretty quickly and he calmed down a bit.
About the time Phil joined us the surgeon came in and examined Taran. He also expressed surprise that he didn’t exhibit the classic symptoms of appendicitis and said that he had talked with the radiologist who was confident that it was an obstructed appendix with appendicitis. He explained the margin of error in diagnosis with physical exam alone, with ultrasound, and with a CAT scan but that at Taran’s age a CAT scan wasn’t going to be really accurate. He said there was the possibility that he would get in there and find out it was not the appendix but that he recommended taking it out based on his level of pain and the ultrasound report. We agreed, and soon Taran was getting anesthesia and being wheeled off to the OR.
Eventually the surgeon came out, told us the surgery had gone well, but that it had not been his appendix. He said it had been intussusception after all, and while surgery was not the normal treatment he had straightened the intestines out and it appeared things would be ok. Taran was sleepy and in a lot of pain. I kissed him goodnight and went home to be with the other kids while Phil spent the night with Taran.
In the morning Phil reported that Taran had thrown up and slept restlessly and was running a fever. A few hours later we talked with someone from the pediatrician’s office who had spoken to the surgeon. The surgeon had gone over the ultrasound pictures with the radiologist this morning and agreed that the appendix did indeed appear abnormal, and the conclusion was that Taran was probably suffering from both intussusception AND appendicitis.
Taran has been sleeping for most of the day. We have had him up and walking around a few times, which is so sad to see, because he walks like a little old man, crying the whole time and clutching his stomach and / or leg. He is obviously still in a lot of pain, but it is only when he moves and he seems to be feeling better than before the surgery. His fever has come down and he is drinking a little bit and staying hydrated, thanks to the IV fluids. He refuses to eat and we’ve been giving him Zofran because he is very nauseated. It looks like he might go home tomorrow, although the nurses say they would like him to be eating.
Today was crazy; our family had a million appointments and there was a lot of driving back and forth and switching cars and children. We were fortunate that Phil’s mom was able to come be with the kids at our house so that one of us could stay here with Taran at all times. Tomorrow should be easier and then Thursday we are back to the clinic with Serenity for more chemo.
Who said life was boring? 