First, we had a representative from Apria Healthcare come by. She is a godsend, and if I didn't tell her that one hundred times, I didn't tell her once. Our home medical supply in New Orleans that was in charge of supplying his feeding essentials, couldn't supply everything that we needed. They couldn't give us the actual feeding tubes, the tape needed to secure it, or the new technology to make sure the tube was fixed in the correct place. We were having to get creative with how we got our feeding tubes. Not to mention, the tubes didn't have measurements on them, so that you could tell how far into his belly you were. Therefore, in order to check the placement of the tube, we were having to use a stethoscope, which is apparently dinosaur technology. Here, their tubes have number markings, and I know that his tube needs to be between 32-33. They also use PH strips to test placement. If the PH of his residual is less than 5, it's in the right place. So I was mentioning to the nurse how impressed I was, and that I only wished we had this technology, and the next day our CHOP case manager called to tell me she was arranging that we switch medical supply companies. Today I got a phone call from Apria, and by 1:00 she was here with everything. She gave us everything we need to go home with for a five day supply, and she will be contacted by the case manager when we discharge. When they contact her, she will ship out a months supply automatically. I literally had to do nothing! It was absolutely amazing! Plus, she brought us a backpack for our feeding pump, which our current provider did not do. I had to purchase one out of pocket for $175.
After she left, we got to meet with our transplant pharmacist. This is something that our local hospital didn't have. Well at least we never met with one. We originally met with Krisha during evaluations, and she gave us the big picture. Today, she went over our complete med schedule, including dosages and side effects. She set up our account on an app called MyMedSchedule, which will really help. Plus, she gave us a list of do's and don'ts for over the counter medication.
Next on the agenda was our nutritionist. We went over the feeding plan, which will be SO much easier than before. Pre-transplant we had three different powders that we would mix together with water. It was quite the concoction with 10 scoops of this and 1 cup of that, plus 2 tbs of the other- it was craziness! Now, all we do is mix four "juice boxes" with 280 ml of water, and tada you are done. I love simplicity. The plan is for him to have three big boluses during the day of 240 ml's, and then run continuous feeds over night. It's really not too much different than we were doing before, and whatever it takes to make our super kidney happy is what will happen.
In between all of that, we had transplant coordinators trying to get insurance and pharmacy paperwork done. There was insurance trying to get information for case management. There were doctors, residents, fellows, nurses, CNA's, and anyone else under the sun coming in and out.
The good news is that all of this is being done, because Parker will be ready for discharge in the next few days. We are still trying to get his Tac level right. It was still a tad low today in the 6's, and it needs to be between 8-10, so we are going up on his dosage a smidge. His c-diff pain is under control, but his bottom is completely raw. He is still having a lot of dirty diapers in one day, but the good news is that there is a lot less in each diaper. Unfortunately, because of the c-diff, now we are being sent home with a Foley catheter and a drain bag. Before, they were going to let us discharge without the drain bag, and double diaper, but now there is a high risk for infection if we do that. Hopefully, we can remove both the catheter and drain bag by the end of next week!
Some of the best news is that my big guy is taking ALL of his medicine by mouth, which is a huge deal for him! We are so proud of him!
Looks like winter is on it's way up here. That means we all need coats and winter clothes. :(
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