We got home from the hospital Sunday late afternoon/early evening. Discharge from the hospital was fairly painless, which is always nice! Alex's home health nurse was here within 10 minutes of when we walked in the door to refresh us on how to mix and hook up the TPN ourselves. It all came back to us way too easily... The home health nurses are the same ones he saw to get his Remicade infusions at the infusion pharmacy. They all know us and Alex knows all of them, which makes it much easier if questions do come up.
Alex felt okay today. Right now his TPN runs from 8pm-2pm, but they will slowly "ramp up" the infusion time to where he is only hooked up for 12 hours at a time (at night). He seemed more fatigued today when he wasn't "hooked up" and had a bit of a headache in the early evening. He did feel up to going to the grocery store this afternoon, but was pretty worn out by the time we got home. It was your typical hot and humid Kansas day, so I think the heat just zapped him! The nurses are coming by the house tomorrow to change his dressing and draw blood for labs, so we will ask them about the fatigue then.
Mom (Donita) has been here helping with Lydia since last week, which has been so nice. Dale came in town to help with a few things around the house and just to visit over the weekend as well. I think they both enjoyed their 1:1 time with Lydia a lot...and so did she :). Dad (Jim) will be here from Wednesday night to Friday to visit and help out, so he will get his fill of giggles, wagon rides and bubble blowing, too! Brett, Carol and Abbey have always been so helpful lending a hand to watch Lydia and we have a ton of sweet, sweet friends who have offered to do the same. We have had offers for dinners, yard work, babysitting, prayers, etc, etc...
At our church, our pastor often talks about who your "stretcher bearers" will be when it comes to times of crisis in your life. He is referring to the Biblical story (Mark 2 is my favorite version) of the paralyzed man whose friends carried him on a stretcher to be healed by Jesus. Only when they got to the home where Jesus was preaching, it was too crowded for them to actually reach Jesus. The man's friends then carried their paralyzed friend to the roof of the house, tore through the roof and lowered him right in front of Jesus...the only man who they knew could heal him. Jesus was "amazed by their faith" and healed the man on the spot. Not the faith of the paralyzed man, but the faith of his friends was responsible for this man's healing. We are so very blessed to have so many awesome "stretcher bearers" to carry Alex through to his healing, too.
So....thank you, again, to all of you for your continued faith that Alex's "Road to Recovery" will end in healing and restoration.
2 comments:
Hi Gena and Alex! :-)
I've been wondering how you two have been doing. I keep looking for you around the forum to see if you've posted anything, so I'm glad you updated your blog!
It's great that you are pursuing things with the Mayo Clinic. I'll be praying that you hear something soon about an appointment! Glad Alex has been able to maintain his weight with the TPN. That takes a lot of determination to stick with a liquid diet, so kudos to him! I was on a liquid diet for about a month and I was so hungry all the time. I can empathize with his smoked meat fantasies though, haha. There are still things to this day that I dream of eating, but haven't. Though I did recently eat an Italian beef sandwich I hadn't had in over a year. I'm hoping he will be able to enjoy his favorite foods soon. :-)
Is he continuing on with the Humira as well? I've been taking that along with Imuran for over a year now and have done extremely well with them.
Anyway...thanks for the update. Alex is lucky to have such a supportive wife and you both are lucky to have a supportive group of friends and family!
I'll be praying for you both!
Okie dokie then - he's home, and slowly getting to where he needs to be for the next step. Good, good, good! Let me know when you need Mayo housing information. K is going to by himself since we just sold the house and I have to get us moved to our new house that week. (BTW, we just found the new house - there for a while, I was afraid I would be homeless in 5 weeks!) At any rate, know that you and Alex and Lydia will be in our hearts as the next steps reveal themselves. Hugs to all. Sharon and Kevin
Post a Comment