We have been trying to just live our lives for the last few weeks. Maddie is still on ACTH, but has only 4 days left. She is still keeping me crazy-busy with all of the nursing, eating, playing, and never wanting to be set down. At 29 lbs now, this is a workout.
Last weekend my step-Dad Lance came down from Charlotte to Camp Lejeune to bring our dog and another carload of stuff and to take my mom back to Charlotte. So since Saturday, Maddie and I found out what it is like to get to hang out together all day without the helping hands of my mom and Lance. Brandon’s work schedule is non-stop right now in preparation for the deployment. We enjoyed getting to have dinner with him at night, and to even all get to sleep together on a few nights. The problem with doing that nightly is that Brandon often gets up at five and Maddie usually gets up for a snack and some playtime every two hours or so all night because of the steroids. So their schedules make it difficult for anyone to get enough sleep if we try to do it together.
The week was actually passing fairly easily. I enjoyed getting to try to live on our own again. I even cooked a few meals, which is an interesting task while holding Maddie. We definitely missed my mom, both her company, and all the stuff she does for us. It definitely is nice to have things like laundry, cleaning the kitchen, and having meals cooked all just magically happen without me having to do them! I’m sure it isn’t all that magical for my mom, but she has always been willing to help me in whatever ways we needed, and it is something I am not sure I will ever be able to repay. But we were enjoying our time together, trying to spend as much as we could with Brandon, knowing he was headed to 29 Palms in the California desert for a month of training this weekend.
Wednesday morning we got a phone call from Brandon to let us know his trip had been moved up and that his flight left early Friday so he would actually leave our house at Maddie’s bedtime on Thursday night. This meant his schedule had gotten even busier. But he planned to be home to play and hang out midday Thursday until when he left that night.
Thursday morning, Maddie woke me around 5 am having slept since 9 pm. This was the most sleep in a row in months, and I was shocked but thrilled. But by 10 am, she had already taken two naps, so I thought something must be wrong. I took her temp, and sure enough, it was 99.6 and her heart rate was close to 200 bpm, so I quickly called Brandon to tell him I needed him to come help me pack. We were out of there quickly, headed to Charlotte the long way around passing Chapel Hill on the way in case she went downhill rapidly and I couldn’t get all the way to Charlotte. We had to pack more than just emergency stuff because we were already planning to head this way on Saturday to do her oncology visit this upcoming week. The reason to rush to the doctor with such a low temp is that steroids suppress the immune response, so by the time a fever pops, something can potentially be very wrong, as happened when she on steroids and became septic last time.
By the time we got to Charlotte, after almost 5 hours in the car, her temp had come down. We still went in and saw the doctor and he felt she looked pretty good, so he said just to watch for more fevers or anything else unusual. So we headed to my mom’s, had dinner and got ready for bed. during that time, the onc called us with her counts and had one interesting and puzzling surprise: her hemoglobin was over 17! This is way high and there was no obvious reason. He was going to do some research as to whether any of the meds she is on could cause it and get back to me Friday.
That night, as soon as I got her to sleep, I could tell something was wrong. Even asleep, she was breathing 60 times a minute and her heart rate was above 180. Both of these numbers are high and certainly too high for while she is asleep. So after a few calls to the on-call nurse and doctor, we headed in to the ER at Levine Children’s Hospital. It was actually our first time in the ER, since usually we just get admitted straight to the floor. The ER staff did a great job with most of the bad stuff: starting an IV and getting a urine specimen via catheter. We did question the education of one staff member when she asked if Maddie was in “recession”. She meant remission…..wow. I hope she was just a tech. Anyway, they decided to admit her to observe her. We gave fluids and prophylactic antibiotics. Once the fluid bolus was in, her heart rate came down nicely. Since she had slept so much and been mostly listless all day, she had not had much to drink, and so it seems that dehydration was probably the culprit for the high heart rate.
They ran blood cultures and a urine culture to make sure there was no bacterial infection brewing and kept us overnight. The night was exciting as her vitals continued to be all over the place, which unfortunately can come along with seizures. As always, Maddie was a trooper through it all, but I just so badly want to be able to stop putting her through all that so often. I cannot wait to say good riddance to the steroids and the immune suppression that is just so dangerous in a child whose body has never had a chance to bounce back from 18 months of chemotherapy.
We were released Friday late morning and today we got the news that all her cultures remain negative for any bacterial growth. Even though we made her go through the ringer only to find out she doesn’t have anything horribly wrong, it was good that we got her fluids to bring down the heart rate and re-hydrate her. We can’t be sure until we do another CBC (which we will do next week) but the high hemoglobin reading may have been a false high because if the relatively low amount of water in her blood. We can tell it has come down because she is much less pink in the cheeks and her eyes are less bloodshot.
Brandon arrived safely in California yesterday and we spoke just long enough for him to know Maddie was okay and had been discharged from the hospital. They are in the field most of the month he is there, sowe will not be able to talk (or text) at all. This will be good practice for how tough it is going to be when he deploys on October. Even though we have lived apart for most of the time Maddie has been being treated, we have been in constant contact by phone or text about even the most minute aspects of her care and we have always made all our decisions together. This is going to be very tough for all of us. I honestly cannot even imagine how hard it has to be for him to do what he does.
So we will probably hang out here in Charlotte until Maddie has been off the steroids for a few days so that we are less likely to make any emergency trips back soon. I was quickly forced to see the value of having a good hospital nearby and questioned my choice to move down to Camp Lejeune a little. Hopefully, we will gradually begin to feel more relaxed and possibly open to the idea of going to a closer hospital too. Levine’s is like our second home, so it is scary to think of going somewhere else. Especially when we know the care elsewhere is not as good.
Our choice to move to Lejeune still feels right to me. Maddie is so delayed developmentally by the seizure disorder that it is imperative that we have her in therapy at least 3 times a week with good therapists who we can form relationships with. We had to make a choice about where our “home” was going to be to do this. Splitting time between Charlotte and Jacksonville will not provide Maddie with the type of routine necessary to help her begin to make developmental progress again. If you have never watched your own child regress before your very eyes, you cannot know how absolutely devastating it is. I will do anything and everything in my power to help her begin to make any kind of progress.
The seizures are a little different as we wean ACTH and Vigabatrin. I don’t know if I would say better, just different. I just want them gone, and they are nowhere near gone. We still have close to a hundred daily. That is just unacceptable and we will keep looking for ways to help her.
I keep hoping that sometime soon, this blog will be less medical updates about Maddie and more fun content. I did add a link to her photo slideshow of the beautiful pictures taken by Angela Shea. You can find it if you click on the Photos tab at the top of the page. I just keep thinking the better days have to be just around the corner. We are just hanging on and trying to make the best of it right now.
Love to everyone,
Liz, Brandon, and Maddie my hero