Spring, No Fever

Alexis did fine during the night with little wheezing. Today, she has continued to rally with strong coughs, no fever, and a lot more energy. We are glad we made the choice to come home and that it looks like day 4 hopefully was her peak (RSV usually peaks day 4-6 for most kids).

Brian's car blew a tire on the way to the hospital yesterday, so we had to take it in for new tires today. We spent the short time the car was in taking the kids to a secluded park, since the weather was so nice. Hoping the fresh air will help her as well. They had a blast and a much needed break from the house for us all!

Really looking forward to nicer weather and no germs so we have more days like today. 

ER Day

Throughout the night Alexis was having some wheezing. We have a home pulse oximeter, so I kept checking every half hour or so throughout the night. She was mostly in the high 80s, but dipped to the lower a couple of times. I decided if people in Colorado routinely breath in the 80s, that I wasn't worth waking her to take her in.

This morning, I took it again and it was 89. So, I called a friend and made arrangements for her to keep the boys. I started getting things organized. Before we walked out the door, I took it again, and it was 93. So, I decided that I would see how she did throughout the day and not go in yet.

She did fine for a while. Took the kids through te drivethru to get donuts, ate breakfast and played for a little bit. Then, Alexis sat down and said she was "punk," her new favorite word. She didn't look the best and seemed to be struggling again. I took her oxygen and it was back in the eighties. I decided that was enough, and she needed to go in to be evaluated.

I dropped the boys and called clinic to let them know we were on our way in for them to check her out. Once they heard she was breathing in the 80s, they insisted we go to the ER instead. So, we headed there. As soon as we got there, they hooked her up and she was 95!

They left her in the monitor for a while to see her trend. She mostly was in the 90-93 range, but occasionally got higher. She dipped into the 80s a couple times, but not for long. They also ran a bunch if tests, and it took forever! We ended up being there for over 7 hours! Thanks to an understanding friend that kept the boys that whole time!

In the end, they said it could really go either way. If she hadn't peaked yet, she probably needed to be in the hospital, but if she had, she should be ok at home. Since we are there a lot and they didn't want to give us an unnecessary stay, they left the choice up to us. We debated for a while, but finally decided we could take her home and always bring her back or call the ambulance if she got into breathing trouble. 

So, we headed home and hoped we didn't just make the worst decision. 

Breathing in the 90s

Alexis did okay today. Overnight, she maintained a low temp. She had a few coughing fits, but they were productive. In the morning, same story. By afternoon, she was a little tired, so took a little nap. When she woke, she still had a low grade fever of between 99-100. Her cough had gotten the barking sound, though, caused by the Tracheamalcia. So, the coughs don't seem to be as productive as the morning. However, we are focusing on the fact she has maintained her temp on her own. We do have a pulse oximeter at home, and she seems to be breathing in the 95 range. Not as good as yesterday, but not low enough to consider taking her to the hospital. So, we will hope for a good overnight and better coughs tomorrow and for those numbers to get back to the high 90's.

RSV nightmare

Ever since Alexis had RSV as an eighteen month old and ended up in an induced comma for two weeks fighting for her life, we have feared those letters as much as ALL. This winter, I have sighed with relief each time the swab has come back negative for RSV.

Alexis was feeling a little sluggish this morning. I thought she had some effects from chemo yesterday, so I let her stay home from school. After lunch, she spiked a fever of 101.4. As we have to do with any fever over 101, we called and knew we would have to go in. 

I decided just to take the boys with instead of try to find someone yet again. I thought Gavin would fall asleep on the way down, could nap in the stroller for the couple hours we were there and Conner could play with Alexis and me. As always, Gavin did not have the same plan and stayed awake the entire time. Lots of snacks and iPad/iPhone time, and we made it through pretty well.

By time we got to the hospital, which was only about an hour later, her fever was already 103. I said to Alexis's favorite nurse, "I bet it's RSV." She responded with, "you said that the last time." (Which I did, as it is my biggest fear!)

Unfortunately, I was right. Swab came back positive for RSV and her chest X-ray showed signs of bronchitis (common with RSV). Her oxygen level was around 96-97, which is great and fever came down with Tylenol. We asked lots of questions about how her low immune system could impact her ability to fight this as well as any seizure impact. In the end, they couldn't give us any assurances either way, as each case of RSV is different. 

Of course I was crying, as I always do, and Alexis looked over and said, "you ok baby?" She's going through this and still has to check on her mom! That pretty much made me laugh and cry harder, which I'm sure wasn't pretty for the nurse! 

They thought it would be ok to send us home, but said they could make a case if we felt more comfortable staying. After debating for a while, I decided that she would sleep more comfortable in her own bed and why force ourselves into the hospital. So, we took her home. 

She is nicely settled into her bed, sleeping soundly. We will monitor her throughout the night. As she sleeps and I'm up all night, I'll be trying to figure out a way to convince the medical community they should quit naming all the awful illness with three letter acronyms. 

Intensive no more

Alexis had her last dose of intensive chemo today! This marks the end of the most intensive chemo and of eight months straight of chemo.

She was supposed to get two chemos today, but her seizures have gone up to 10-12 a day, even after the latest increase of keppra. So, they made the decision to hold the IV methotrexate. They thought only the spinal methetrexate was causing the seizures, but given the timing, they were worried both might. Since she has never skipped a chemo or not met counts in irder to go up on the intensity, they felt skipping one chemo at the end would not impact the overall outcome. After many questions, we followed doctors recommendation and only got one chemo today.

Next, she moves on to the maintenance stage, which should be easier, but not easy as it sounds. We signed new study consent forms today. They will then put her in the system, and it will randomize her onto one of four arms. This will determine how often and what dosage of meds she will get. There will be daily oral chemo and either monthy or every three month IV chemo. Regardless of the arm, she will get spinal chemo every three months, instead of monthly for which we are extremely grateful. We are a little anxious to know what arm, so we know what to expect over the next two years of treatment. 

Cowboy Baby

Between his love of hats and boots, we have a little Cowcoy Baby. We just hope he doesn't continue to take after the Time Square cowboy!

Picnic Fun

Daddy decided to create a fun lunch! Kids love a picnic in the middle of the room when it is cold outside!