Day 24 Outpatient: (cont) So.... Friday am up at 5:00. Time to get ready. Winter decided to arrive in buffalo. Im mean ARRIVE. The Hope lodge here has a live in director. She is quite nice. Very helpful. Asked us Thursday evening if we would like a wake up call and then a transport call, placed for Roswell. Of course we respectively said YES I could of drove, but Morgan needed to learn the ropes so having Roswell transport do the pick up would give her good practice. Everything that has been done or gone over, Ive had Morgan take the lead. To me, its the best practice. It could be to easy to step in and assist. But she needs to experience everything first hand. From what elevators to go to, what floors, who to summon for a ride, lunch area, bathrooms, etc. Day two and she was already in charge.:) Back to the transport and winter. They were Johnny on the spot with pick up. Right at 6:00. This guy had to drive us through blizzard conditions to the clinic. Now when I say blizzard style conditions, it was. No exaggeration (syracuse native so most can relate) unreal. First day out as BMT patient and had to deal with this. Cold and wind cut right to the bone for Jan. Her blood levels are still at a low and body temp regulation is improving but still not quite up to par. So, arrive at Roswell. 6:15 in phlebotomy for tachrolimus peripheral blood draw for tach levels and then additional blood draw for the blood counts (what is CBC w/Diff). (Had to stick her) Next appointment at 7:00 for office visit (Clinic) got some time to kill, so off to lunchroom for a bowl of cereal. Jan was able to eat and after her small meal, shes starring at 17 pills to get down for first morning meds. Uhg. We get in to clinic. There she has vitals taken, assessment done and then we wait for the NP to come in. Everything was running quite quickly, mostly due to weather. Short staff and we were the only patients there. Worked out pretty good. Before seeing the NP, the nurse comes in and starts the run down of meds. Holy Crap! 20 pills daily. How to set up the pill box, when to take, what to take with them, time needed between them, what they do, if theres a. change in them, paper work, etc. and...four times a day. Uhg,,again. That took a better part of an hour to go over. Again, Morgan. Spot on. So after that, the NP comes in for full assessment. Converse with her for 15 minutes, then the big cheese comes in. So great to see Dr. McCarthy. He really had not been around much throughout the whole stay after transplant. It was kind of weird actually. As if, he got things set up, told everybody what to do, and stayed on the side lines watching and letting them do there jobs. Now Im not saying he didnt stop in, but was more of a, (when he did), it was a, hi, how you feeling? Okay, keep up the good work, and away he would go. Totally different this visit. Talked about obviously some side effects. Physical symptoms shes dealing with (no saliva, skin rash, nausea, etc,) which is what they expect. He also told us to go out for some food (not during busy times) but get out. Go to harbor and check out the museum, go see the girls youth hockey team, and several other ideas. Now I pause. Go somewhere? Eat out? Whats that? Really? We can do that? And.... Its like a good friend making these suggestions. Not a best in his field BMT transplant specialist. It was dr McCarthy, Back in charge!! What a great feeling. So after this, hes standing there, and says that the tach levels are to high, so he wants them reduced to a lower level (wants the GVHD a little higher) This will reduce a relapse. Now the best part of the conversation was when he says your doing great. Your results are, THE HOLY GRAIL of what we are striving for. What we wish to be the norm for all patients. So, with that said, I had to assume this was good. :) Wow We talk for five or more minutes and Doc says your looking a little pale, are you nauseated Gonna get sick? Jans reply yes Dr McCarthy didnt miss a beat, into the cupboards, crashing things around to find a bucket, pulls out a container of tongue depressants, dumps it all over and hands to Jan. Of course, she uses it appropriately. Damn nausea. They order up some atavan and administer through IV and shes feeling better after an hour or so. This is about 10:30 or so. Morgan went and secured transport (all on her own) and was back to the Hope lodge around 11:00 This stuff is difficult. You have to make sure meds are given with food in the belly, so getting Jan in a routine here and throwing in office visits is a bit a scheduling challenge. Morgans got it though. Hell, Im asking her, what meds, now? You forget the.,,,,, no dad, thats the one to take five times, I mean, shes got it. So we get some food in us and then the nurse from Coram (the outside nursing company) shows up. Time to learn how to run an IV pump and administer the Magnesium bags and flushes. She takes an hour to go over all the paper work stuff and then onto the actual training. Morgan learned how to flush the ports, and hook a bag to her mom. Then disconnect and re-flush the lines. Sooooo impressed. Got this done by 2:30 and still no food or supplies here with us. (I had no idea what to expect, let alone the schedule) so off to the store. Price Right is the closest store. Wrong choice. (Another story) Did manage get some items for the house and get back to feed Jan and have Morgan get meds in her. Went to wegmans later. (I hate shopping, but gotta say, really happy for having a wegmans here.) So, Friday was a long day. Did get to meet some of the house guests here. Being around others that share the same story in one form or another is quite therapeutic. Just being able to relate. They helped with all the questions, where can I put the groceries? where to find labels? what garbage can? Kind of like living with guests in a bed and breakfast, but every one of them can get sick if germ protocol isnt followed. You are on your toes, 24/7 and cant screw up or someone could end up in the hospital. Thats how this place is and how life is going to be for at least the next year. Not complaining. Not one bit. Just the way it is and happy for every minute. Happy to clean plates twice, dissenfect every chair, every light switch, every door knob. Some might say that is going a little overboard. Its not. Its safe and its one more day Sincerely, Shes got this
Posted on: Sun, 11 Jan 2015 03:20:24 +0000
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