Monday April 22, 2013- a Bit of a rough Day!

Monday April 20, 2013 Well last night I finally got a good nights sleep. I switched up some of my care so the nurses and Respitory Therapist don't have to come in my room every hour. So now it's every two hours! I am a super light sleeper so I wake up at the slightest sound or I can just feel if someone is in the room I think it's my sixth sense. So my nightly routine is the 7:00 shift change nurse comes in and takes my vital signs. Blood pressure, pulse, oxygen sat and checks my respiratory rate. When checking a persons respiratory rate a nurse usually pretends they are taking your pulse but they are really trying to count how many breaths per minute. Anyways I know the trick especially when the nurse isn't even looking at a clock. So it's always hard to get a proper rate on me because I'm always thinking should I breathe now or am I breathing to fast. So I'm sure I've never had a proper respiratory rate for years. Anyways after vitals are done and they check my meds I'm usually free till 8:00pm then the respiratory therapist comes in and rechecks my oxygen sats and sees what my current oxygen rate is set at. They also turn on the Mission Machine and ask me what time I usually want to go on the Missio (BiPAP) at and I usually go on about 10:30 or 11 depending on how busy my nurse is because I cannot talk with the BiPAP machine on so I wait till I'm done with my nightly routing before I get the mask on. Then at 9:00 my nurse comes in and hooks me up to my tube feed so I can get my extra 1500 calories In for the night. So ya thats approx 3000-3500 calories a day. Then sometime between all of that I get ready for bed. At 10-10:30 my Respitory therapist helps set up the BiPAP machine and then between 11 and midnight I am hooked up to an IV med they have to flush my line and hook it up usually takes about 15 minutes. I take off the BiPAP during this because I hate not being able to talk while so eo es in the room. I enjoy talking with the nurses at night bc they seem to have a bit more time and I learn about there lives like one of my nurses is from Polland and he was talking about the war there and what his country and family went thru. Reminded me of the Band of Brothers movie all the stuff he was telling me about. Very interesting So now midnight it's sleep time. It usually takes my mind about an hour or so to relax and fall asleep. Then at 3am my nurse comes in to test my nightly blood sugar test at 3am so I am awake for another 15-20 minutes before I fall back asleep. Then at 7-7:30am I am woken up for blood test every second day or so and at 8am the new morning shift starts with a new set of vital, meds, unhook feeding tube, hook up another IV med, reorder any meds that are needed, eat breakfast(if you know me I usually eat my meals cold bc I take my time and enjoy my food), sometimes I get a shower in depending on when the nurse disconnects me if I'm disconnected to late I don't have time for a shower bc I have to walk down to Physio at 10:15 and then I'm there till 11:45 or noon before I get back to my room. Then I have my lunch till about 1. If I'm lucky I get to go for pulmonary function tests,x-rays or what ever tests the docs decide to send me for. So around 3 I am either trying to have a nap, drawing, face booking, trying to update my blog, message people, return phone calls and wait for visits from friends. Then its supper again and I am trying to relax after the day or get caught up with emails and some paper work. Usually I fit in a few more phone calls to my Hubby,family and friends. Oh and during the day and evening I fit in time to eat more food and snacks when ever I can. So when people ask me if I'm bored or what I do all day that's just a glimpse. Usually a few visits with other Dr and nurses from transplant team as well. So anyways I changed my IV med in the morning to come an hour earlier might as well get it at 7 I'm prob gonna have to wake up shortly anyways. So now that my med is changed I actually have time to shower in the morning before having to go to physio. And now at night I get hooked up to my IV the same time as my feeding tube at nine so the nurse just has to sneak in and hang a med instead of having to wake me up to flush and hook up my line. And so I can have at least 6 hours sleep at night instead of the three interrupted hours I was getting. I stopped getting my blood sugars tested at 3am. Not sure why I didn't think of all that earlier when I was having troubles sleeping. Today my blood pressure has been high all day and most of the afternoon yesterday. Values of 146/102 if you know anything that's a little high for little ol me. I do take a blood pressure pill but sometimes the different meds I'm on in the hospital make my blood pressure spike so will prob be put on yet another pill. Also I have Ben more short of breath yesterday and today. Even walking to the bathroom gets me winded. I have been walking down to physio the last few times because the porter either tries to pick me up to early when I'm not ready or they don't have a proper time slot for me. Anyways I walked down today and had my oxygen level at 6 which is what I usually have my concentrator on while I'm walking and I'm on 4 liters when I'm at rest. I walked downstairs to physio and by the time I got down there I was feeling even more short of breath. The therapist tested my oxygen sats and they were at 76% normal is above 92%. Usually when I walk my sats drop a bit but not quit that much and it usually comes up once I sit for a moment. Today though I had to go up to 8 liters and wear a full face mask instead of my nasal canulas. I usually do better on the mask because I tend to be a mouth breather when walking or doing exercises that involve the bike or treadmill. Usually I've been going on tread mill for 20 minute at a 1.2 slow pace but usually I just prop my book on the tread mill and walk the full 20 minutes without stopping today was rough though. My sats eventually came back up to above the 90's but I would walk for about 5 minutes and have to stop because I was so out of breath and I felt really warm with the face mask on. My blood pressure was also high so my heart was working hard at physio today as well. I made it the 20 minutes thru physio and started to feel a bit better and the mask was helping keep my sats up so I decided to try the bike for 10 minutes. Nope that didn't happen after two minutes I just couldn't take it and had to stop. The therapist decided I should just continue onto doing my arm and leg exercise. I had trouble with them as well today but was able to take breaks between my sets of 10. Not sure if the lazy weekend set me back or there is an infection brewing going for x-rays tomorrow to check things out. I have been having issues with my nose being dry since having to wear and require more oxygen. So last night I was blowing my nose and I had dried blood come out this has been happening for a week now. I had asked about getting nasal gel to help with the dryness but kinda forgot to remind to get it. So when I went to blow my stuffy nos I noticed it felt like the air was going between both nostrils. Upon further investigation I realize I have a hole between my septum. Like really what is this. I asked the doctor about it and he said he has never heard of it except in Cocaine users. Hmmm I hope he doesn't think I'm a druggy! Besides the legal prescription drugs I'm on. Anyways I looked online and talked to an RT and found out info about it. It can happen when on nasal Canual oxygen tubing I had the short ones in so then oxygen was directed at my septula and wears it down if it is weak If the hole gets bad some times plastic surgery is involved but right now it isn't really any concern. They gave me the nasal gel and are looking forbad different type of tubing called the BRITNEY. It's like a micro phone she would wear on stage and the oxygen can be directed at either the nose or mouth and is hooked up like a blue tooth device. so I never thought I would be so busy in the hospital. Fighter pilot at nit and pop star during the day. What else can I do while I pass the time in here. My cousin Jenn and Marcel came for a visit tonight and brought me Thai food from Thai Valley Grill the first time I tried food from this week was the other week when Amy A came to visit me and brought me salad rolls with peanut and spicy ginger sauce and she also ordered me a chicken stir fry and coconut rice. It was so good that I have been trying to get someone to drop me off more. So when Jenn asked me if I wanted anything I said yes then exact same order Amy A brought me. It was delicious again. Thanks for the visit Jenn and thanks for introducing my to take out food other then "Swiss Chalet" Amy! Hoping tomorrow will be a better day. Well it's midnight and no one should bother me till morning now so this chicks going to hit the sack and hope for another good night sleep. Good night everyone. I must be a sucker for working or keeping busy bc I asked Rod to put together the tax stuff and i could get it done bf the dead line. Either that or im a sucker for punishment. Oh and blogging must be helping my mind bc my blood pressure has dropped a a bit tonight but oxygen is up to 6 liters still. Will get it all straightened out tomorrow.