Sunday, November 29, 2015

Thank You Sir, I'll Have Another

Ruby's counts continue to climb (her ANC is over 100 now), and her cultures continue to come back negative for any growth or signs of bacterial infection, but the doctor on-call wants to keep her another night, just in case.

I get it. It's the safe way to go. But I'd be lying if I say I didn't internally swear when he told us.

I usually try to pick my battles with the doctors and nurses, since I know there will be many things I feel strongly about that are not in line with their protocol. Once he said we would be here at least another 24, I pushed for Ruby to be taken off of fluids. I've asked both nurses and the doctors on call about it, since she wasn't dehydrated and she was drinking and eating fine, but the answer has come back that it's 'standard protocol'. If we're here for a 48-culture watch, I can do that. But longer than that calls me to be a mama bear. Especially when Ruby was up the entire night (I do mean that - at least once/hour) with a full FULL wet or dirty diaper and a diaper rash that made her scream and cling to me like a baby monkey every time I changed her. Thankfully the doc said, "Sure....she's having a great output so she doesn't really need to be on fluids." That's one of those 'shake my head' moments, but I'll save that for another blog post.

So for now, Ruby's ANC is still on the rise and she is coughing less, but we are here for another 24+ hours. I did take her out to the garden as soon as they unhooked her at noon so that she could run. Due to the 4-lined hook up system she's been on, I have not been able to let her walk around and play at all. (Imagine walking 4 dogs at once...I swear it seems like the four lines of fluids all had a mind of their own and they were all different lengths!) She had a blast playing with the leaves on the ground and she completely wore herself out. The sunshine and fresh air did both of us some good, for sure.

Saturday, November 28, 2015

No News is Good News

Ruby's initial cultures are negative, which means we are good so far. Her fever has not been present since before her first round of antibiotics, which is great. Even though her cough sounds horrible (which any cough she's ever had does), the doctors and nurses are encouraged that her lungs sound good.

This morning we had a visit from a respiratory nurse who had the fun job of suctioning out Ruby's nose and throat. Tiny tiny little tube that went oh-so far up/down my baby's nasal passage after saline was flushed. Needless to say, Ruby did not enjoy that, nor did I (I got to hold her down while it happened).

A few doctors came to see Ruby during rounds and were happy with everything so far. They even said that her ANC is starting (just slightly) to go up, and where we saw monocytes (precursors to a good white blood cell count) in her blood work yesterday, there were even more present today. That means she is already starting to trend up. I did not expect that to happen so quickly; we were still trending down on Wednesday.

As of this afternoon, we are on-track to go home tomorrow night, after the full 48-hours of culture growing fails to happen. Things that would change that return would be another fever or a change in the way Ruby's lungs sound.

Friday, November 27, 2015

Home Again?

As much as we want to be in our own beds, there is some comfort in the hospital, and it actually does feel like home sometimes. Probably due to my 'creature of habit' nature, I guess.

Ruby has been working a runny nose for the last week. She got two new teeth just before her latest round of chemo started and I'm pretty sure another one came through this last week. Since she's not had a fever at all, and the product has been clear, we have not been overly concerned. Unfortunately, sometime yesterday afternoon she did start coughing also. While it sounded horrible, she has sounded that way many many many times in her previous always-congested days, and the doctors have never found her to have anything more than the congestion causing the cough (no lung issues or deeper infection). So even though it raises a red flag, I'm also aware that it's not out of the ordinary for her to sound that bad when she's congested.

Ruby woke up happy today and ate a great breakfast, even with some coughing. We planned to go as a family to get our Christmas tree; I was determined to get it all set up as a family of five. And even though Ruby was in good spirits on the drive to the tree farm, her cough and occasional cuddliness throughout the morning was enough to convince me that I would call the doctor when we got home, just to be sure we didn't need to come in to be checked out.
Once at the farm, Ruby walked around, petting dogs and checking out trees. But after about ten minutes, she only wanted to be held and was no longer happy. We quickly took pictures and got our tree. I had Lehr pull out the thermometer as I drove home; her temperature was 39.0 (we are supposed to call and come right in if it hits 38.0). So we decide to bypass home to drop the tree and the kids off and head straight to the hospital to drop Ruby and I off. A few minutes later we take her temperature again and it's 39.6. Yikes. She is not happy either. She's mostly sleeping, but also very uncomfortable.
There was a holiday mix-up with the clinic where we were supposed to be communicating with en route, so they didn't know we were coming into the ER. Once the Aflac Team found out we were in the ER though, they got us to the front of the line (it was busy) and right back to a room where they hooked Ruby up to antibiotics right away. Once she had the antibiotics in her system, she started smiling a little bit and talking again. Her temperature went down quickly, to my relief. (She was HOT when we got there!) During this process (during which Ruby mostly slept on me), the nurses took blood to do cultures and other tests on. Before we left the ER we knew that the first round came back negative: no respiratory infections like RSV or bronchitis.

Unfortunately, when you are in count recovery from chemo, like Ruby is this week to two weeks, any fever is a bad thing and involves a hospital stay. When a patient like Ruby heats up like this, they worry about a bacterial infection, so they draw blood and wait for cultures to grow or not grow. That process takes at least 24 hours, and once a fever is present (and the patent's blood counts are down), the patient has to stay in the hospital until they are 48-hours with a negative blood culture. So even if Ruby's cultures never grow (a positive), she will have to stay for 48 hours.

So here we are, back in the room we were in a few weeks ago for chemo, rockin' the fluids pole and hospital food. Ruby's friend, Claire, checked in a few hours ahead of us for her scheduled chemo, so at least we are in good company. Ruby didn't miss a beat, waving to all of her beloved nurses and techs as they wheeled us onto the unit tonight....she doesn't see being here as a bad thing at all.

I'm so thankful that her fever went down on the first try. I'm so thankful that she had five days with Grandma and Grandpa before this happened. I'm so thankful for an amazing husband who helped Ruby and I get checked in and then went home and packed up overnight stuff for us, AND brought us dinner. And even as crazy as it sounds (and feels to say!), after a crazy few hours of my girl being so not herself, I'm thankful to be in a hospital where I actually feel safe, and kind of at home.

Thursday, November 26, 2015


We were so fortunate to have Grandma Cathie and Grandpa Jim come back to visit for Thanksgiving. This trip was planned before Ruby's diagnosis and before we asked them to come help so much this fall, but no one wanted to forgo another opportunity to see each other. We did surprise the kids with Grandpa's visit; they knew Grandma was coming because of the join GG trip. He (Grandpa) surprised both older kids in a perfectly awesome way. Maddux came in from playing to use the restroom downstairs and he was in the adjacent bedroom making some noise so she investigated and he gave her a "Boo!" Eli was across the street playing basketball, so I brought him the phone (with Grandpa on it) to chat for a second. Eli walked slowly across the street, talking on the phone until he got just about to the driveway when he saw Grandpa standing by the garage, talking on the phone. He was so excited!
Unfortunately, Lehr came down with strep throat the night before Thanksgiving. He got antibiotics, but we still asked him to wear a medical mask all day (luckily we have a supply from Ruby's stash). Even though he felt bad, he was still able to hang out with us the whole day and pretend to not feel horrible.
The weather for Thanksgiving was amazing, so we did get some great outside time. We started off with Dutch Babies, which we usually do for holidays. Then Grandpa and Eli made tickets for a basketball game; we were all invited to watch on the back deck. Then we watched some of the Macy's Parade (Ruby LOVED all of the dancing and was more fun to watch her watching it!) Maddux got her toenails painted by Grandma and Ruby took a good nap. Dinner was perfect...everyone loved it except Ruby (she ended up with Cheerios instead). After dinner we took a short walk around the block because it was still about 55 degrees. We ended the night with apple crisp, pumpkin pie and board games after Ruby went to sleep. It was a great night.

Monday, November 23, 2015

Speech Update

So I really really really don't do a good job of getting Ruby's progress, especially speech, on video. I promise to try harder!

As much as I worry we are plateauing in a few areas, she is rocking in others. She still does not say a whole lot unprompted; she will give you 'more' every time she wants food, but has to be reminded to sign or say what type of food (usually not decipherable) and 'please'. When we work on flashcards and/or I prompt her for sentences in our daily activities, she gives me so much, but unprompted is our struggle.
One area she's excelling at (in my mommy-biased opinion) is her ability to say so many letters of the alphabet. I've been working on her with a flip book series since just before round two (so maybe the beginning of October?), and she knows so many letters and words by sight! She will say "a, b, c (kinda), d, e, f" great. Then she'll get caught back up at "l" and go through to "q". But even the ones she doesn't say well, she still gives an approximation. In this series, there is also a book for words starting with each letter. She will do "apple" and "bus" and "up" without any prompting at all; I only have to show her the page with the word on it (no picture).

If you want to smile, ask my girl to point to herself. When we do our family game of "Where's so-and-so?", Ruby loves to point to everyone mentioned, with a huge smile on her face. When you ask "Where's Ruby?", she used to pat her belly, but now she will often turn her pointer around towards her face.....seriously cute.

Sunday, November 22, 2015

Four Generations

My grandmother came to visit us when Maddux was being dedicated to the church, in 2007 when she was still an infant. We then saw her in 2009, when my brother got married; the kids were two and four. So we were so excited when my parents said they were arranging for her to visit us this fall!
GG, as her great-grand kids call her, came to stay with us for about five days. Maddux and Eli loved hanging out with her and hearing her tell fun stories. She brought the kids some window stick-on decorations, which Maddux had up on the glass in about 10 seconds.
Eli wanted to have her take a photo with him at his science fair. Both older kids could not get enough of playing Rack-O with her; it is their rediscovered favorite game! Ruby warmed right up to GG; she was giving her hugs and kisses by the end of the night, even though she arrived at dinner time. She loved showing her some dance moves and her skills at saying "B!!".
It was so cool to have her with us; Lehr took a few photos of the girls all in one place at the same time. I'm feeling very blessed to have four generations of amazing women together this week!

Thursday, November 19, 2015

Eli's Science Project

Yup. It's that magical year where we get to work for many many weeks on a project for the science fair!

What a season for this to happen too, with all we have going on. I honestly think (hope!) it was for the better...that it forced Eli to be more independent with it because of the decreased parental involvement in his academics this fall. He did come up with his idea all on his own, though his dad and aunt helped him fine tune the actual question he ended up with.

Eli wanted to see if deflating a football actually made it easier to catch. We ended up getting three identical (new) footballs and a ball pump/gauge so that he could throw each level of inflation 20 times to each subject and record their success rate. That worked out to 60 throws per person. (Eli threw every time and counted off the distance with his own steps.)

Several weeks were spent planning for how to perform his experiment to best get the amount of results he'd need to come to a conclusion. Eli ended up using 5 or 6 friends and 3 or 4 adults as test subjects. Due to the rain and our fall, getting all 10-ish people completed before the end of the project did prove to be a challenge. (We even did two of the kids one hour before Trick-or-Treating on Halloween!) When it came time to put it all together on his presentation board, Ruby and I were in the hospital and the boys were in the middle of a soccer tournament. But Eli rallied and worked really hard to get everything done. We've been so proud of his work ethic on it!
In the end, Eli had a great time and definitely learned a bunch. I know if he were to do the experiment again, he would change several things to help fine tune his results. Of course there were heads butted (mostly Lehr and Eli, but I'm only off of the hook because I was not there in person for most of the work), but all in all, I'd say the project was a success.

We all got to attend Eli's school tonight to see all of the projects. Eli was oh-so proud. And how cool that the timing lined up so that all five of us were there PLUS Eli's grandmother and great-grandmother!

School Update

November has actually found Ruby at school more often than not at school! And she love love loves it. She smiles when we pull into the parking lot and gets so animated when we talk about it at home. It's so cool to see her playing at home, even more 'appropriately' than before. (That's a phrase new to me in the last year: appropriate play. Basically it means Ruby plays with a doll as a baby, and she plays with dishes in a play kitchen as dishes, and a car as a on and so on.) When Ruby and I are playing in her room, she is SO busy at her kitchen, filling up cups under the faucet (complete with sound affects) and putting food on plates, only to use a utensil to pick the food up and bring it to her mouth, followed by "MMMM!", of course.
Ruby did have to miss her Thanksgiving party this morning, unfortunately. She went to school that morning, but only an hour in, she spit up a little of her breakfast, so I had to pick her up. We've found her doing this a little more often lately; I think she can't handle as much food as she could before and this morning she definitely had a bigger breakfast. She didn't have a fever and was happy the rest of the day, unaware of the Turkey Day celebration she missed.

Monday, November 16, 2015

Little Mama

Ruby LOVES her baby dolls these days. Sometime just before this last hospital stay she started playing with them very intentionally. She would put one of them in her chair to eat, or set it on the couch with a dishrag over it like it was napping.
One day I was trying to keep her occupied while I was cleaning up the kitchen, so I gave her an empty oral syringe and told her to give her baby some medicine. Ruby walked to her doll, bent over her and put the syringe to her lips. Then she put the syringe on the ground and picked the doll up and made her move back and forth on her feet, all the while saying 'sst sst sst'. She was making the doll dance. See, when we give Ruby meds in the hospital, we always cheer and dance after we are done, to lighten the mood. My girl brought that little gem home to her babies.

Sunday, November 15, 2015

Sweet Homecoming

I didn't know it was coming, so there is no video footage or photo of the event. I do keep playing it over and over in my mind though.

When Ruby and I pulled down the street to our house tonight, I could see that Lehr and the kids were outside, up by the street. As we got closer, I could see that they had one of Ruby's ride-on toys at the top of the driveway with them. I alerted Ruby to this and she pushed up in her seat, straining to see. Once she saw her people, she got all excited and started waving her hands and feet. Such happiness.

Then Eli opened the door to get Ruby out of her seat. She was over the moon, and he was so gentle with her. He got her onto the driveway and she was all smiles and shrill shrieks....could not contain herself. The rest of the night was spent with her eyes wide open and never looking away from Maddux or Eli. It's good to be home.

Saturday, November 14, 2015

Day Four

Another kink in our 'normal' today.... Ruby's chemo bag ended around 7AM, at which point they flush it out. At the end of the flush, they start a new bag. Each time they start a new bag, they flush the line and do a quick 'pull' to make sure the flow is going in and coming back out (blood). When the nurse tried to pull this morning, no blood came. She tried four different times on both lines, but nothing. So they ended up injecting a medicine to break-up a possible blockage in her tube. That had to sit for 30 minutes and then be removed (it was not supposed to go into her vein). Before the 30 minutes even finished though, the nurse was able to get a pull, so we were a go to re-hook up the chemo.

The rest of the day was fairly uneventful. Ruby was somewhat fatigued, but not as much as yesterday. We still fit in plenty of speech and playing. She did knock out a monster almost-three-hour nap though; that was impressive. Ruby's appetite is still there, but she is picky, though not as much as the first round. One thing she's started doing during this hospital stay is drinking milk out of a real straw (from the carton) incredibly neatly. I'm almost tempted to let her do it on her own (instead of me holding it). That hasn't happened yet though because I fear she will definitely dump, spill, or throw it, filling our dorm room with a sour dairy smell...I know this girl.

We are still on track for leaving tomorrow afternoon. I imagine it will be dinnertime or so before they let us go. Hopefully we don't have any more issues with Ruby's line to delay us. So far they've been able to 'catch up' with the speed of her drip, but I think any other kinks would slow us down.