I guess I haven't updated in awhile so I will try to remember everything that has happened since the last update. I am sitting here waiting for the dog to go potty and listening to the coyotes howl. She is much more interested in the frogs hopping around than going potty. It has only been about 20 minutes so we are going inside soon.
So back to the update. After they found an antibiotic that worked and his culture finally came back negative, he was scheduled for surgery and then his 5 day chemo. We ended up staying in the hospital for that round because the clinic is not open on the weekends and it started on Thursday. His surgery was to put in a port to replace his Broviac. A port is a metal disc with a silicone bubble on top and attached to a catheter. The catheter goes into a major vein that goes into his heart. It is all underneath his skin so he can now go swimming and shower like normal. It looks like a lump under his skin. He was in pain for the first day after surgery but didn't complain after that. He also got his stomach tube replaced which fixed the leaking problem! We also spoke with the dietitian and we found out that the first calorie amount we were given was wrong. We were giving him 1700 calories per day when he actually was supposed to be getting 2400. We have adjusted that so he has actually put on a few more pounds. We are officially back in the 70s!!
He received his 5 days of chemo and got to come home on July 4th. The only thing he doesn't like about the port is that his twice weekly blood draws now have to be done through his arm or hand. Also he chose to not get the insuflon put it in his arm for his round of shots so we have to give him one every night. It lasts about 10 days depending on his white blood cell count.Thank goodness for numbing cream. If they could only find a way to make the medicine not burn as it goes in.
Of course the first thing he did when he got home was go swimming. He was in the hospital for 2 1/2 weeks so I was afraid he was going to wear himself out. He swam for almost 3 hours. He was very tired and didn't feel very well the next day but still got in the pool again. He loves being able to swim and will do it everyday if I let him, sick or not.
We have had two blood draws since he came home and he does ok. He panics a little bit but he is getting better. On Thursday it will be the first time that his port is accessed while he is awake. It is accessed with a butterfly needle that is stuck through his skin into the silicone bubble under his skin. that is how he gets his chemo and meds while at the clinic and hospital. The clinic nurses are very good at accessing it but the hospital nurses told me that they don't always get it on the first try. I hope it is easy on Thursday.
One last thing. He is losing his eyelashes and eyebrows so he doesn't always let me take pictures. He only has a half of an eyebrow on one side and about six eyelashes. Hopefully I can get a good picture soon.