There is reason to celebrate today – Westley, after six weeks in the hospital, is home. Westley spent 4 weeks on life support and truly is a miracle. He fought so hard and tonight he is resting in his own bed. When I think about all he has been through, I am reminded at how amazing our God is. We were fortunate enough to visit Westley, Tracee and Willie a few times. I know they received a lot of visitors, and we were so thankful they allowed us to be one of them. Westley is proof that prayers are answered and God is the ultimate physician.
The last several weeks have been hard on several Batten kids. Many have fought illnesses and seizures. Some days it is overwhelming and heartbreaking to scroll Facebook and see all of the sadness, scariness and loneliness this disease causes.
Kate has been dealing with her own issues lately. She has had a lot of congestion in her chest and at times isn’t able to cough it up and out. Her cough is typically strong and productive, but by the end of the night her energy and strength is gone, so her ability to cough productively is diminished. There have been a few nights where her congestion has settled deep into her chest and into her left lung, causing her O2 levels to drop and her pulse to increase. It is hard to know what to do when this happens. We can go to the hospital but am not sure what they would do that we weren’t doing at home. We placed oxygen on her, positioned her so her mucus could drain, and did percussion. Eventually she was able to clear her lung and her levels improved. In an effort to help keep her chest clear we saw her respiratory doctor and requested the coughing vest. The vest does percussion on her chest and loosens the mucus so she can cough it up and out and keep her lungs clear. So far it is working well and she is tolerating it. Lauren tried it on for fun and said it wasn’t too bad – comfortable and didn’t cause any pain, upset stomach, etc.
Kate also has had issues with her seizures. This isn’t new information but the reason for them is unknown. We thought it had to do w/ her monthly cycle, but it has become clear that the two are not related. On March 22 she had several seizures within three minutes so we administered her new emergency drug, Versed, and it caused her to stop breathing and her face to twitch uncontrollably. We immediately called 911. Within 45 seconds she was breathing and her face was fine but she was still seizing. In the ambulance the EMTs gave her an IV of Valium and she stopped having seizures. Based on her response to Versed we were given a higher dose of Distat to use if she had another cluster of seizures. On April 9 she started having seizures at 6 am and at 630 Brock gave her Distat. At 8 she was still having seizures, so I took her to the ER. As soon as they called us back her seizures stopped, therefore they didn’t give her any medicine. We were released shortly after arriving. This past Monday, April 14, we saw her neurologist and she increased one of her daily seizures meds. We are hoping this will stop her from having clusters of seizures, thus keeping us out of the emergency room. We also discussed what drugs we can use if she needs an emergency drug. Once again we were given an increase in distat and told to use it and if it doesn’t work, call 911 and administer Versed. The reason we are to call 911 before giving it to her is in case she has another negative reaction to it. The doctor trained us on how to administer the drug and believes that the changes she recommended will make the drug safe for Kate.
Once again we have a new nurse. The agency we are working with seems to have some internal issues, therefore it has high turnover. It is frustrating because we really want a nurse that will connect with Kate, stay long term, learn what is normal for her, what are seizures vs. tremors, and become a valuable member of her primary care team. The last several nurses have been incredibly nice, so we were sad to see them go. Our new nurse is very nice and I am praying she is with Kate for a long time. We also had to let go of a nurse who has been with us for two years. She worked every other weekend, but over the last year her attendance hasn’t been acceptable and we caught her sleeping. We tried to work it out and be accommodating to her needs, but eventually we had to let her go because we need someone who will be here when scheduled. We rely on our nurses; therefore we need people who are reliable, knowledgeable, and compassionate.
We are in the final weeks of planning for the 5K. May 3rd will be here before we know it. We are excited and hope it is a great time. Its not too late to sign-up! Forms are found on this website. If you cant run the day of or aren’t local, you can be a virtual runner. We will also have a few raffle items, 50/50 drawing and bake sale. If you wish to help at the event, please let me know.
I hope you all have a happy Easter and find time to celebrate our Saviors resurrection.