IC Day 17 Update

We're home! (again)

We were able to bring Nathan home today and our whole family was pretty happy to be together in one space. The boys were sooo happy that they continually got into mischief this evening! Our day at the hospital wasn't too smooth, as usual, before leaving. The nurses were able to de-access Nathan's port really well this time but the issue occurred again when it was time to access his port once more. We asked the nurse if she was good at it and, of course, she said yes. She was a little rougher than the ladies at the Cancer Center in trying to find the port, cleaning it, and lining everything up but she did stick the needle in much smoother than the other ward nurses. The problem was that when she pushed in fluid, it squirted out of skin through the previous hole! What a sight for Shelley and I as it is definitely not supposed to do that. So she re-adjusted and pushed in some more fluid and this time it came out back along the needle she had just inserted. Of course Nathan was howling in pain by this time and his parents were wondering what the hell was going on. We may have hurt Dani's feelings as we said that it was not supposed to hurt so much and if she didn't know what she was doing she should stop. She stopped and went to get a different ward nurse. When that nurse came in (without Dani) Shelley and I were very direct in our questions and what we expected and then that nurse didn't even try. The ward nurses decided to phone the Cancer Center to get Jan or Kathy to do it. We weren't out to hurt anybody's feelings but when you know that it can happen painlessly as it does so often in the Cancer Center you just have to stop and ask them why they are causing your son so much unnecessary pain. He has enough necessary pain why add more?? So we trekked down to the Cancer Center, spent about 5 minutes getting Nathan accessed without so much as a single tear (there was a wince when she had to clean off the blood from the previous attempt) and made our way back to the ward. He ended up getting his Vancomycin a little later than what he was supposed to, then they put in some Ondansetron (that we weren't sure why) and that took another 20 minutes so it did take us a little longer to get out of the hospital than originally planned.

Anyway, nurse Dani did come back later when it was time to discharge us and apologized for causing Nathan pain. That was very nice of her. The discharge time of 2:30pm ended up working quite well for us as we went and got Nathan's IV pole and were just in time to pick Carter up from school - Nathan wanted to surprise him. We had quite a load coming back from the hospital, way more than what we took there. In addition to the other stuff we kept taking there we had two boxes of medical equipment in order to do Nathan's home IV. We have enough saline solution and heparin to start our own children's ward. This evening we had a nurse from Home Care come in and help us with the first IV in our house and it went quite well. Hopefully the next 23 will be just as smooth. We were thinking that being home from the hospital might actually get us more sleep but now that we are the nurses it definitely is not going to be so. We have to give Nathan a bag of Vancomycin every 6 hours. Not only that but we have to take the bag out of the fridge a 1/2 hour before and the drip lasts for an hour so if you do the math we have 4.5 hours between medications. That is not bad during the day but isn't going to be very pleasant at night. Additionally, we don't have the nice beeping machine when the medicine is done, we have to watch it his line to make sure it doesn't run completely out and put air in his lines.

The other piece of good news is that our water is back on! The wonderful city workers getting it running again about 7pm tonight. Just in time to wash up a little before bed. At least I thought we were doing bedtimes; Shelley was so happy watching the boys play that they somehow got an extra 45 minutes of play before bed.

We now have six days of home IV with 4 sessions per day (every 6 hours). We finally had a week where we don't have any additional chemo and then we had to go and get the antibiotics just to make sure we were pumping something into him every day. Our next chemo appointment is not until Monday.