Home Shenanigans

On May 12th we were able to go home! It was an incredible opportunity for us. Ariana's counts had recovered with no Leukemia found in her labs. She really thrived at being home.

We had two hiccups being home which prompted us to call the after hours line. The first happened on the first night. Since Ariana had a lumbar puncture and bone marrow aspiration for cycle 1 completed the same day we were discharged, she still had her bandage on her lower back. Well, in true Ariana fashion, at around 2AM she made a HUGE diaper and it blew out up her back all over her bandage. Of course it was crucial to keep her wound clean, so we reached out to see how the doctor would recommend us to clean it. It took a bit for us to hear back from them so we took matters in our own hands and started to clean the area as we saw fit and how we had seen nurses do it in the hospital. Thankfully upon further inspection, we saw that the actual puncture sites were completely clean with no poop on it. We simply cleaned the dirty areas and put a fresh bandaged on and got her back to sleep.

The second hiccup was on the second night. As part of Ariana's home care that we were trained on, we had to flush both of her central line lumens with heparin every 24 hours. Since the staff performed this before we were discharged, night two was the first instance that we had to do it on our own. It's a whole procedure, but pretty straight forward. Here is a video of what we were instructed to do:

This video mostly demonstrates what we were doing at home, except for two things: we had to clean the blue cap with the wipe for 30 seconds and then wait for 30 seconds to let it dry AND we all had to wear masks while performing this task. Now a minute isn't a long time, but it is a long time when you are wrestling your 18 month old and holding her hands down so she doesn't touch the clean caps all while trying to keep her mask on! Lots and lots of flailing around - not like the very well behaved dummy in the video. Anyways...the hiccup happened when we tried to flush her white lumen. Patrick had tried first and was met with some resistance so we stopped and decided to try again with a different heparin syringe. I tried it this time. This time it was flowing smoothly, but at the end of the flush I noticed tiny air bubbles in the line. Instant panic! They did not go over this in the training, so we called the on call staff again.

The staff reassured us that they weren't overly concerned and that we could wait until the morning to come into clinic to be seen. In the same breath, they said that if it would give us peace of mind that we could go into the ER and have them take a look since there is no way for them to do a evaluation over the phone. So, off to the ER we went. One of the big reasons why we felt comfortable going home was knowing that we lived so close to a Cook Children's hospital - 10 minutes to be exact. We packed up our things and loaded Ariana in the car and went to the ER.

Since Ariana is an oncology patient, she gets special instructions when visiting a Cook Children's ER: don't go through the ER waiting room, go through the ambulance bay instead. This is primarily to avoid the crowds of people that are normally waiting so that we can avoid exposure to illness. We pulled into the bay and were let in and led to a nearby room. Thankfully, the ER was not busy and we were seen pretty quickly. They removed the air from the line, but struggled to get blood return from it after. This is an indicator that they use to determine how well the line is functioning and no blood return is not ideal. We had to explain to them that it wasn't the first time that this lumen has given trouble, even at the hospital, and that we should try remedies taken previously during our admission. Luckily, Cook Children's is phenomenal at listening to parents and took our advice and repeated what had been previously done. Unfortunately, the medication used to help took a long time to be received from pharmacy and then we had to wait an additional hour and a half for it to take effect in the line. We stayed at the ER for about 4 hours. It was a long night, but I am glad we went and were able to rest easy once we got home.

The rest of our stay at home was filled with cuddles, walking exercises, drive way visits from family and friends and just overall healing. Ariana had regressed in her language and motor skills while in the hospital and by day 3 of being home, she was talking like she had been before her diagnosis and was walking again with assistance. We were so incredibly proud of her. She loved being able to see Winston and Charlie again. They were her biggest motivation to walk - just to blow kisses to them. Patrick and I enjoyed being home too. It was nice to be able to spend time in our home, sleep in our own bed and love on the puppies. We binged The Pitt every night (highly recommend) and rested easy to prepare for our next stay.

OH! I almost forgot...we had a third hiccup while at home. Not cancer related at all. We survived our first tornado warning on May 18th. We got some weather notifications around 8 PM to be on the look out for severe weather. I started charging my phone and made sure we had the weather radio on. I was in our bedroom around 10 PM putting up some laundry when the sirens went off! It was exactly like what you heard in Twister (if you know me, you know that the 1996 Twister movie is my favorite movie (Twisters was really good too!!!) but I never wanted to experience it in real life). Anyways, every one kicked into go mode. I got Ariana - unhooked her from her feeding pump and IV pole. Patrick got the dogs. My parents got two big cushions from our couch and we all bunkered down in our master closet. We had the weather radio on as well and found some news stations on our phones and just waited. Luckily the warning only lasted about 15 minutes and everything ended up being completely fine. We were so grateful that the sirens near our house were operational and that everyone knew what we needed to do.

My best friend, Krystyn, told me when we moved to Dallas that we were moving to Oklahoma. I texted her while this was happening and she replied with "Oklahoma will Oklahoma", and as much as I despise being told we live in "Oklahoma", she may be right.