April 13th Day +6
Dakota is here! He landed at around 6am. It’s so nice to have the whole family together again. And it’s much easier for everyone to take care of me with 3 people instead of 2. This way everyone has a little more freedom to be outside of the hospital Maybe Ricky will finally sleep at the apartment tonight. He is very over tired and needs to get a good night of uninterrupted sleep. So Alexx and I will have a girls sleepover.
Dakota is fast asleep. Jet lag
My abdomen is still distended but not too tender and Alexx says it’s definitely softer. This may be TMI (too much information) but guess what?!? Last night I pooped and farted for the first time. This is an early sign that my bowels are starting to work. It’s loose and small amounts but things are starting to move. Maybe the bathroom blessing helped.
My biggest issues at the time are my breathing and my blood pressure. I continue to feel short of breath and have a hard time speaking in full sentences. I’m also wheezing on and off throughout the day. The doctor thinks these symptoms are secondary to a) my distended abdomen pushing up against my diaphragm b) volume overload from all the fluid and blood products I’ve received. My oxygen saturations are okay and the levels of oxygen and other gases in my blood are normal. They are keeping me on a low dose of oxygen through a nasal cannula. I am also getting two types of nebulizers: albuterol and a steroid. Hopefully they start to help. They repeated a CXR today and we were told it was normal. A pulmonologist came to see me today, he didn’t seem too concerned. According to the infectious disease Doctor a CT Chest was done on Sunday (when I went down for the CT Abd), she said it looked okay. Alexx is going to talk to the doctors more about this.
The other issue is my blood pressure is very high. Everyone keeps telling us that it is caused by volume overload and the excess fluid in my body. Also because my nutrition is so poor I have low albumin (protein that balances fluid and pressure in the body) and that causes difficulties with fluid balance. My blood pressure has been as high as 200/118 but then goes down to 160/94. Alexx keeps asking them why they don’t bring it down with medications but they tell her not to worry and they don’t want to risk dropping it too low. The nephrologists are comfortable with it. Thankfully I don’t have a headache or any symptoms from the high blood pressure.
The days are long and all I want to do is feel better and more like myself. Everyone keeps telling me I’m doing better but I want to feel better.
My hair is starting to fall out now. We are going to shave it either today or tomorrow. Ricky might shave his head too. I’m looking forward to wearing all of the beautiful head scarves my friends bought for me.
Im also getting Neupogen today!!! This is an injection that will help stimulate my bone marrow to produce and release more white blood cells. Come on stem cells! Start engrafting!!!