I have been remiss in posting this update – I apologize. Things went a bit haywire Tuesday night and I’m just now getting a chance to sit down and type. Lori and I had anticipated that this week might get a little crazy because the week after Lizzy’s 5 day admissions have always produced some craziness, but this week has been more crazy than even we expected!
It all started on Tuesday. In the morning, Lizzy was fine. By lunchtime, she started acting lethargic (as in just laying down and not moving – definitely NOT normal Lizzy behavior!), by late afternoon she was complaining of a headache and even more lethargic. So, we knew her blood counts were dropping. We also knew she was scheduled for scans on Wednesday in Cincinnati (ultrasound of the abdomen, CT of the chest, echo of the heart), so we were hoping and praying we would make it through Tuesday night without incident and get to Cincy Wednesday morning, knowing they would check her blood counts when we got there. Well, it didn’t work out that way.
On Tuesday around 8p Lizzy started running a fever. I think I’ve posted this before, but a fever indicates your body is potentially fighting off some type of infection and for an immunocompromised patient (who basically has no ability to fight off infections), a fever is a sign of a potentially dangerous (even life-threatening) situation. Every time we have a clinic visit, we have to watch a video that talks about what to do if your child has a fever. The basic instruction is – GET TO THE ER ASAP! So, we are well-trained and well-versed on what to do if Lizzy runs a fever.
So, when Lori checked her temperature Tuesday night, it was above the magic threshold of 100.4. The standard protocol and preferred treatment option when this happens is to have IV antibiotics started within 1 hour of a child having a fever. That means you have to move FAST when you discover your child has a fever.
I had just changed into my jammies when Lori took Lizzy’s temperature. Lori came out of Lizzy’s room with a panicked look on her face and said “she’s got a fever. We’ve got to go”. My mind started racing – What do we do with Treasure? How soon can Colson get home? Where are my clothes? How much time has already passed since the fever started? and on and on and on.
Fortunately, over the weekend Lori had already packed a suitcase for just a scenario as this. So, while she was getting Lizzy bundled up and in the car, I texted our next door neighbor and asked if Treas could come over until Colson could get home. She of course said Yes, so I literally ran Treas next door (I did actually find my clothes and change back into them first), and ran back to the house, jumped in the car with Lori and Lizzy and we sped off to our local ER. I called the ER to let them know we were coming so they could start preparing everything. As I said, time is of the essence and we were already 10 minutes into the hour target of getting antibiotics started.
We arrived at the local ER and after a brief pause for registration, went straight back to a treatment room. I don’t have enough energy right now to give a detailed account of everything that went on in the ER, but the ER doctor was fantastic and right as we hit the 1 hour mark, antibiotics started pumping into Lizzy via her port. She also received a bag full of Christmas presents from the ER staff:
With that whirlwind behind us, we now had to make a decision. Because Lizzy had spiked a fever, she needed to be admitted so she could be monitored and given more antibiotics if necessary. So, the ER doctor (who had been consulting with our Cincy care team) told us we needed to decide whether to have Lizzy admitted to Norton Children’s in downtown Louisville, or go up to Cincy and be admitted at Cincinnati Children’s. Because Lizzy was already scheduled to have scans on Wednesday in Cincinnati, we opted for admission in Cincy. Either way, Lizzy was going to get an ambulance ride, so now it was time to wait for the princess chariot (aka ambulance) to arrive.
Turns out, Cincinnati Children’s sent their transport team to Louisville to pick up Lizzy. Right at midnight, the ambulance arrived, strapped her in, and we began the trek to Cincinnati.
We arrived at Cincinnati Children’s ER around 1:30am Wednesday morning. After giving the medical staff all of the details, they did a few procedural things and said we would get moved to a room up on the 5th floor (oncology unit) as soon as a room was ready. Around 3:50am, Transport came to take us to Lizzy’s room on the 5th floor. After getting Lizzy settled in and off to sleep, Lori and I finally crashed about 4:30am. It had been an exhausting day.
Yesterday (Wednesday), Lizzy continued to run a low-grade fever. Her blood counts also bottomed out (her ANC, or total blood count, went to 0 and her platelets dropped as well), so she received a transfusion of blood and another transfusion of platelets yesterday. All of her scans were postponed.
Today (Thursday), Lizzy has felt much better. Her ANC is still 0, but the transfusion did get her energy level back up. She has not had a fever for the past 24 hours and all of the blood cultures so far have been negative for any type of bacterial infection. All of that is good news.
She did get to have her ultrasound of the abdomen and CT of the chest today. Both scans came back CLEAR, so we are thanking God for those great test results. Hopefully she will get her Echo of the heart tomorrow.
So, now we wait – we wait for her blood counts to come up and for fever to continue to stay away. And as we wait, we trust in the Lord with all our hearts. We lean not on our own understanding, but in all our ways, we acknowledge Him for we know He will make our paths straight.