Tuesday, January 29, 2013

Hospitalized for RSV, C. diff., and Pneumonia

Our clinic appointment for the next phase was scheduled for Wed, Jan 23rd, so we had the home health care nurse come over Tuesday morning to draw blood for labs. When the nurse comes over, she usually takes Molly's temperature, which ended up being 100.2 degrees that morning. She expresses concern for that and I said I would monitor it through the day to see if it got any worse. Molly had just that morning developed a runny nose and coughed occasionally, but I thought she had just caught the cold that I had the week before. That afternoon Big Sis had a dance class I needed to take her to, so I called Grandpa Dean to see if he would come sit with Molly since she was starting to look sick. I got back home with Big Sis at about 3pm, and took Molly's temperature again. It was at 101.4, so I called the clinic to see which ER they wanted me to take her to and they told me that if it was all the same to me I should take her to PCMC so that they could have all her records here at the same place. When Daddy got home at 6pm, I loaded Molly up in the car and headed down to PCMC with the expectation that they would give her a dose of antibiotic and send us home. I didn't even bring my purse, just my wallet, because I figured we wouldn't be gone for long.

When we got to the ER, I told them that she has ALL and that she has a fever, and they brought her right back to a room where they would check her out. I suppose that is one bonus of being a leukemia patient... absolutely no ER waits! Anyway, we got back to the room and they put a blood oxygen monitor on her toe, which showed us that her percentage was in the 70's (should be higher than 80%) so they stuck an oxygen tube on her face and into her nose. She did NOT like that at all! It took her a good 2 hours to get used to it! They also did a quick blood draw from her port and did a nasal swab to test for a variety of diseases, which she didn't like at all either.

Molly just got the oxygen tube put in. No likey.

After about 1 hour waiting in the ER exam room, the resident doctor came in and told me that since Molly had signs of an infectious disease she would be admitted and we'd be taken up to the Immuno-Compromised Services section (ICS - same place we stayed our first week of diagnoses). So I grabbed our coats and Molly's medication bag and we were taken to get a chest x-ray first and then up to ICS and put in a room that had a very good view of the valley. After about an half-hour in the room, the ICS resident came in and told me that Molly's nasal swab showed that she has indeed contracted RSV. She said that her labs showed that she isn't neutropenic (low white blood cells; causing very low ability to fight disease) so that was a good thing, but we'd be staying here for at least until the fever breaks. I asked her how long that would be and she said that most RSV patients start getting better around the 5th day after first showing signs of RSV, which was this day.

Here's the view from our room. I'm definitely asking for this side of the ICS if we ever have to stay here again.
So I started to try to get comfortable. I didn't have my phone charger or even any paper to doodle on, but we did have the Dr Seuss book Go, Dog, Go, so we read that a few times. That first night was tough because I couldn't use my phone and Molly was on an IV so she had to use the toilet every half-hour. Neither of us got very much sleep at all.

The next day, Wednesday, Molly's fever was still in the 102 degree range, her heart rate was in the 150's, she was still on oxygen, her respiratory rate was in the 50's, and her blood pressure was high as well. We put her on an acetaminophen and ibuprofen regimen to keep the fever down. Only the ibuprofen worked, but we could only give that every 6 hours, so we gave acetaminophen at the 3 hour mark in between ibuprofen doses.

Daddy was at home with Big Sis and they both developed stomach aches and diarrhea overnight, so Daddy decided to stay home from work. I had Grandpa Dean stop by and pick up my phone charger and a few other very essential items (my laptop for one, haha!) and drive them down here. The doctors here came in and confirmed that she had RSV and said that the chest x-ray from yesterday showed some splotches, so they suspect she's also got pneumonia and will be doing further tests for that. They put her on an antibiotic and also took a stool sample to see why she suddenly developed diarrhea.

Gotta try to be happy!
Later that afternoon, Daddy called me and told me that his stomach was hurting way too much and that his mom will be staying with Big Sis while his dad takes him to the ER at Davis Hospital. I immediately suspected appendicitis, since he had not had that yet. When he got back from the ER, he called and told me that the doctors there did a CAT scan and didn't find anything except for swollen lymph nodes, so they sent him home with some mild pain medication and instructions to just wait it out. He and Big Sis went back to his parents house for the night so they could help out with the pain. Apparently Big Sis got over her stomach ache pretty quickly, so we knew it was just a coincidence that they both had aches at the same time.

Molly's Tree of Life
On Thursday, all of Molly's vital signs were the same as yesterday; elevated everything. She stopped eating any food so they put her on IV nutrition through her port. She had a blood transfusion just before going to bed last night, so today her color was very nice. They said that her stool sample showed that she had also developed clostridium difficile (C. diff.) which is a pretty common viral spore among hospital patients, and put her on Flagyl to specifically treat that. They also said that they'd put her on a second antibiotic that will help clear up whatever is causing the fever.

Since I was still wearing the same clothes I had arrived here in, I asked for some baby-sitters from my family to come down and sit with Molly while I went home to pack some more clothes and essentials, shower, and make sure the cat was OK. I also talked to my mom about some research I had done here on aromatherapy and she sent down her diffuser and some eucalyptus oil. I had to get permission from the doctors here to use it, and the Integrative Medicine Specialist said I could, but only during very specific times so as not to irritate the other patients here. The specific times were 3-5am and 3-5pm.

I went home to take care of things, and after 4 hours or so, I got back to the hospital and relieved Uncles Ethan and DJ from their duties, organized the hospital room, and tried to start making things comfortable since it was looking like we'd be here at least until Saturday.

Daddy called me again around 8pm and said that he is still in so much pain that he is going to go to a different ER and see what they have to say. About an hour later, I was told that they were going down to McKay Dee hospital so they could do an emergency surgery on his abdomen. I didn't get many details past that, so all night I was worried that I wasn't going to see Daddy again. Molly also had a pretty rough night because of the fever and the fluids she was getting, and all the medications we had to wake her up for. I think it was very surprising that I was keeping my cool this whole time.

Friday morning, Molly's vitals were still the same as they had been, she was getting all the same med's they gave her yesterday, and I was so very tired from the lack of sleep. I found out early in the morning that Daddy was out of surgery and was recovering well. It turns out that he had an organ of sorts connected to his small intestine that a very small percentage of people have as adults called Meckel's Diverticulum. Apparently this thing is something all babies are born with, but it usually disappears soon after birth. His diverticulum was very inflamed and had to be removed. He said that he will be staying at Mckay Dee at least until Sunday.

That afternoon went just the same as it had been all week, and the fellow oncologist that we usually see in the clinic came to see us and explain that we will in fact be delaying the next phase of chemo for 1 week. So that means that she'll be starting the next phase on January 30th.

Saturday was still just like the other days. We did another CAT scan, and later Grandpa Wayne came over so I could visit Daddy in the other hospital, and so I could go see Big Sis and see how she was doing as well. The cat also got some attention.

That night I had a little break-down and maybe scared the nurse a bit. I was crying about how I was worried that Molly wasn't getting any better and we were just making her worse with all the antibiotics and other medications we were forcing into her system. I know why I was so emotional though... I track my menstrual cycle and hormones very closely and this was one of the days I predicted would be a low-hormone day, which would make me depressed and tired for a couple days. I hope the nurses here don't think I'm a nut.

Sunday, yet again all vital signs were elevated. Daddy was discharged from the hospital in the early afternoon. I should mention what activity Molly has chosen to keep herself occupied during the day... Princess Merida in the movie Brave. I'd say we watch that movie probably 4 or 5 times a day here. She even has the verse that the witch says will break the spell on the queen memorized. So do I. "Fate be changed. Look inside. Mend the bonds torn by pride." Tada! Oh, and I officially want the Brave soundtrack. I'm hooked on that music.

The resident doctor here came in that afternoon and said that the newest CAT scan definitely showed that Molly has pneumonia, and I asked for her best guess on how long we could be here. She said that patients with leukemia usually stay for up to two weeks. So that's what I am expecting now... a very long hospital stay with nearly nothing productive in our normal life getting done. At least I have my laptop!

Sunday night was the first night that we were able to keep Molly's temperature down long enough for her to sleep 4 hours at a time. We still had to wake her for medications and to check her blood pressure at midnight and 4am, but I'd say both she and I got very good rest that night!

Feeling a little better!
 On Monday, things were looking the same in the morning, but everything took a turn for the better around noon. Her fever went down, I gave her a bath in the big bathtub here and when we got back and hooked her up to the monitor, they found her oxygen level was staying up so we didn't put the tube back in her nostrils. Grandma Jayne drove Daddy and Big Sis down here so Daddy could bring me one more change of clothes and the hair scissors, and we gave Molly a very extensive haircut. I think it looks absolutely adorable. I was afraid that she wouldn't look like herself, but in fact, the haircut makes her look even cuter, and her very distinct facial expressions are amplified a hundred-fold!

I talked to my mom about another essential oil that could help Molly get better, and she also gave me a homeopathic remedy to give her once or twice. The Integrative Medicine Specialist gave me information on how these additional treatments could help, and also how they could hurt. Armed with this information, I decided to go ahead and use the remedy and essential oils. Also, the Infectious Disease doctors came in and told me that in addition to RSV, they found that she additionally had Coronavirus. So that brings the total illnesses to four. Fun stuff. But she's finally getting better!

Today, Tuesday, Molly is looking very well! Her temperature has been normal for more than 24 hours now. Her heart rate and respiratory rate are very close to normal. She did have to go back on oxygen overnight last night, but she's back off it now that she's awake. The resident doctor came in and told me that Molly is looking very good, and she expects we'll be able to be discharged in a couple days! That is by far much better than 2 weeks! So, all we have to do is get Molly to the point where she can go overnight without oxygen, and she needs to get her appetite back again. She hasn't eaten anything yet, and I keep trying to get her to drink PediaSure, but she still needs the nutritional fluids through her IV port. The oncologist says that we'll probably still start her on the next chemo phase (Interim Maintenance I) tomorrow, but we'll likely delay the methotrexate portion of it 1 week just because of Molly's recent illnesses.

Well, that's that. You'll get another update probably in a week or two, after we've had another clinic visit and chemo treatment. Thanks for reading!

If you're wondering about how to donate to the Molly fund (we found out our deductible was misleading and we actually have to pay almost $12,000 per year before the insurance covers anything), we have this nice little yellow-orange button at the top-right of this blog page under Molly's picture that says "Donate." We really really really appreciate everything that has been donated so far, and the time given by several people taking care of a few things for us.

Please comment if you have anything to say or if you have any additional questions about the post above you would like answered

Saturday, January 12, 2013

Phase 2 Consolidation Clinic Visits

On Jan 2nd we were schedule to visit the clinic at 8am, and then have Molly's lumbar puncture done in the OR at 10am instead of in the RTU because the RTU was completely booked that day. So we get up at a very early hour, made sure Molly didn't eat or drink a thing, and drove up to PCMC. We had to visit the Operating Room check-in first and wait for 30 minutes to be "processed", along with several other children and their parents. Then they sent us back up to the clinic to have labs drawn. After labs, we went back down to the Pre-OR waiting room where they gave Molly some hospital jammies to wear and had me take out her earrings. We got taken back to the OR waiting area where they had several beds and chairs and TVs and some video games. Since I expected we'd only be there for a few minutes, I held Molly in my arms and sat in a rocking chair while she played on my phone. 

Molly fell asleep eventually and the nurse there came to our chair and told me that they expect we'll be taken back at 11:15a. So we waited. And Molly woke up. And wanted juice. And wanted goldfish crackers. And cried. Because she couldn't have anything to eat until after the procedure. 

I'm trying to be a happy mommy with a very unhappy Molly in the OR waiting room.
It got to be 2pm and I finally went to the desk to ask when we were going to be brought back. Of course they didn't know, so they called several people and finally told me that there was one more person ahead of us, and asked if Molly needed to be given anti-anxiety medicine through her port because I couldn't go back with her; they would be carrying her back without me. Well I thought she'd be ok, and I didn't want them giving her any unnecessary drugs anyway. Around 3p, they took her back (and she cried so very much when I put her in the OR nurse's arms) and I went to the parent waiting area, where I waited for only about 40 minutes until they came and told me Molly was awake from anesthesia and I could go see her.

In the post-op recovery area, Molly was on her 3rd bottle of juice, and asking for more. They were so impressed with how thirsty she was (what did they expect? She had waited ALL day for something to drink!) and we were told we could leave as soon as they could figure out how to de-access her port. Seriously? These people see all kinds of patients everyday, and they took 20 minutes trying to "learn" how to take the needle out of her chest (which I had done before and tried to explain it to them myself). They also had to wait to find out what kind of anti-clogging medication to put in her port before taking the needle out (which I had in my bag right there, but they wouldn't listen to someone so unschooled as me). 

Molly with her juice sippy they gave her in post-op.
Needless to say, I was incredibly disappointed with the way everyone in the OR department handle everything. I hope I never have to go back there again.

On Jan 9th, we were able to get a spot in the RTU. We had the clinic visit at 10:30a so Molly could have some juice at 9am, but I didn't have any juice to give her so I did some researching on liquid diets and ran across a forum for colonoscopies where I learned that if you take a light-colored jello that's not red and mix it as usual but don't refrigerate it, then it is a good substitute for apple juice or water. So I found way in the back of my cupboard some peach jello, and gave that to her. And the doctor at the clinic said that was fine. 

This week at the clinic, the nurse came in to do the port poke and I had Molly laying down on the bed. I held both her hands as I usually do when they are going to do something she'll likely not enjoy, and she just sat there and watched them the whole time! No crying! The doctor and the nurse agreed that this was quite unusual and I should give seminars to parents on how to calm children down. I realized this week that I had created somewhat of a comfort routine with Molly; holding both her hands, and diverting her attention with songs, and questions about what Big Sis might be doing at grandma's house.

We learned that the RTU had a cancellation and so we got to go down early. Molly insisted on walking down the hall instead of riding in the stroller, so I let her. And the nurses all fell in love with Molly in her pigtails and footsie pajamas, waddling into the RTU.
This week Molly is so much happier than last week!
 While Molly was just waking up from the lumbar puncture this week, one of the nurses came in and expressed concern for a bruise she saw behind Molly's ear where her earring sits. I explained to the nurse that it wasn't a bruise, just a mark from the earring back because it probably has nickle in it. I told her it would wash right off, just like if you had a ring from the quarter machine which left a green mark around your finger. I also got a phone call a few days later from a very concerned oncologist himself who said I shouldn't let Molly sleep in her earrings because it looks like they are bruising her skull and he was worried about possible infection. I explained that it was just discoloration, and then went right over to Molly and took an alcohol pad to the "bruise" and it washed right off. Hopefully I don't get comments on that anymore, as I will try to keep it washed.

We've got 2 weeks off from clinic visits before the next phase. I am still giving Molly Septra on Mondays and Tuesdays to prevent pneumonia, and I am giving her 6-MP (mercaptopurine) every night at least 1 hour after she eats dinner. All her lab results have been excellent, everything is very promising. 

We changed our diet, and Big Sis hates it. She doesn't like the whole wheat spaghetti (neither do we... so we're not having that again) and she doesn't like that she has to eat veggies now. Today we had turkey burgers and roasted organic summer squash. I think we all liked the turkey burgers even better than beef burgers! And I finally tried making rice and steaming broccoli at the same time in my rice cooker... that turned out too easy to fully express how pleased I am. 

I am trying so hard to make this life more normal for myself and my family, but our homeschool and chores are falling behind, I get sad sometimes because I wonder if Molly is just going to die of cancer anyways, and I get sad because we were planning on buying a piano in 1 year, paying off all our debt in about 3 years, and building a house in 5 years, but those all have to be pushed back an unknown amount of years because of this ugly creature dancing with Molly. On my low days, I just want to lay in bed all day and exist without responsibility or desire. It's difficult. But I carry on.


If you're wondering about how to donate to the Molly fund (we found out our deductible was misleading and we actually have to pay almost $12,000 per year before the insurance covers anything), we have this nice little yellow-orange button at the top-right of this blog page that says "Donate." We really really really appreciate everything that has been donated so far, and the time given by several people taking care of a few things for us.


Please comment if you have anything to say or if you have any additional questions about the post above you would like answered.