Readjusting and Moving Forward

Zoe Health Update

Zoe continues to improve every day. She is still not herself but is full of smiles and laughter. She is very motivated to gain back the strength and skills she lost. We see her working hard again to feed herself, walk for longer periods of time, and stand on her own with balance support. We saw the OT and PT yesterday and they are both happy with how she is doing but did point out some areas where she has lost some strength and flexibility. So we will endeavor to fit her stretching and standing routine back into our very busy days.

Zoe still spikes fevers off and on and continues to cough up mucus from her lungs. We are doing lots of chest physio and have seen improvement in her chest. We had lots of medical appointments the last couple of weeks to look at what happened, how to prevent it from happening and how to deal with it when it does happen again.

What Happened?

We now know that Zoe had a bladder infection which caused the fever which caused the prolonged seizures. During the seizure, she aspirated even though we did not see her choking and her vital signs remained normal throughout. We saw urology and they are doing some tests. While waiting for the tests, Zoe is on a daily antibiotic to prevent urinary tract infections. The urologist wants to make sure there is not something going on that is causing the infections. So we will have a busy month of August with more tests and appointments.

Life Moving Forward

Gavin and I are still feeling a bit overwhelmed and shocked from this latest experience. Zoe has never been so acutely sick and it scares us how quickly this happened. We would feel reassured if her doctors could promise us this won't happen again. However, they all seem to think it will happen again and all we can do is plan how to cope with a long seizure to decrease her chance of aspiration. We have changed some of her seizure meds and our emergency plan. She also still has the central line (PICC line) in her arm for emergencies. The PICC can not be left in long term so we are looking at removing that in the next few months. We are hoping Zoe will not need a central line of any sort since the next option involves surgery to put the line in. Zoe's complex care doctor knows her well and feels comfortable watching and waiting to see if Zoe does need this or if (hopefully) she does fine without it.

Life Moving Forward While Holding Our Breath

Gavin and I feel overwhelmed with the amount of monitoring Zoe is currently needing. We check her temperature regularly since she is still spiking temps, she is on so many meds and fighting us every day on taking them, we continue to monitor her respiratory and cardiac symptoms like we usually do, and the seizures continue every day. So far we only see quick, absence seizures but we have seen a longer focal seizure. It is difficult not to worry when we put her to bed with a slight fever and we have seen several seizures that evening. Ailsa has me up regularly in the night so I check on Zoe when I get up with her.

We have some fun trips planned for August. We are going to go ahead with our plans and just pack some emergency supplies. I am really hoping Zoe continues to do well and we have a great August. She does have periods of time where she acts like her old self- running around the house, bossing us all around, and laughing at something she is not supposed to be doing. So I know in time she will recover from this. I just hope it does not ever happen again.