Dear Friends and Support Group,
So much has gone on since I’ve last written anything here, I’ll try and bring things up to date somewhat.
Bernie is doing pretty darn well, considering the beating she took last year. She is currently in therapy 3 days a week and filling in the odd days with neurologists, nephrologists, hematologists and others. She quit using her cane and rarely uses a walker anymore, only when she is very tired at night or on just waking up in the morning. Her left side is steadily improving and she can prepare and take her meds by herself (I’m still there to observe).
What a sport she has been through all this. She has a regular hairstylist coming to give her haircuts now that her hair has grown back. She also is starting to answer e-mails and makes phone calls to our daughters and her sisters. We went to a St. Pats party at one of the local church halls, we Catholics always have halls with our churches (need a place to play bingo you know). We were seated with Bernie’s sisters, sister in law, a bunch of nieces and nephews. Bernie even enjoyed a little corned beef and a glass of beer while we all joined in the sing along with the wild Irish band that was playing.
Bernie still has the hyper extended neck, although it is getting a little better. She walks in to most of her appointments now. I still use the transport chair if it’s too far. In the car she can buckle and unbuckle her seat belt now, it’s not easy but she can do it (she knows it’s one of the steps back to driving).
On Tuesday we went to the surgeon’s office that put her peg tube in and discussed her progress with eating. She had gone 25 days without any tube feeding and eating adequate calories with a semisoft diet for the entire time and also was taking all her meds by mouth without crushing them in apple sauce or anything else. The doctor said it’s time to take it out, and that it had been in too long. So for the first time since May 19th of last year Bernie is without a feeding tube in her stomach. But nothing we do comes without a hitch. While removing the tube the bulb that holds it in place popped off the tube and is now in her stomach. It’s normally supposed to collapse and pull out with the tube. The Dr said that’s one of the problems with leaving them in so long. The stomach acids deteriorate the connection and it can fail. Nothing’s easy. So now we wait it out, it either passes in a day or two or Bernie has to have it removed through the mouth in one of those gastros***ophys (however you spell it). Go! Bernie Go!
Bernie still struggles with the bathroom issues but even that has improved a great deal since the tube feeds and liquid diet have ebbed. We are very grateful for every little step forward. We count our blessings daily.
Thank you all for your prayers, ears and support over the months, I love you all, God Bless You, Mike