Time is just blowing by me...

So, it has been nearly a month since my last update. Admittedly, some cool things have happened since then. Firstly, I now have a new nephew to cherish. He is absolutely adorable and loves to be cuddled. I scoop him out of his momma's arms as soon as she gets into the doorway and claim him as mine until she leaves. The little guy is much like my son was, chubby and content with being held. His weight at birth was 9lbs 3 oz...just loving those chubby cheeks! Maybe that is why I am so fond of him (well, babies have that effect on me anyway, but he is seriously so cute! Am I prejudiced? Yep :) I have babysat him a few times (even with all of my tubing, I am just careful not to get the tubing too close to his little hands...they may be little, but they are strong!)

Another neat thing, I got a new ventilator for nights. It is much smaller than my beastly LP10 (weights over 35lbs alone!) and on its own stand. The nice thing that whenever I go to my sister's house for overnighters, it is going to be much easier as it is that much more portable. The vent looks much like the vent that I use during the daytime, but it is a different make...Pulmonetics LTV 800. It does the most basic settings like assist control and SIMV, no pressure support like my daytime vent which can do just about every setting out there.

As for what is going on with me personally, I am just starting to get a little junky but it is my TOBI month. Hopefully, that med will knock down the colonies just enough to avoid, you know, THAT place. So, fingers crossed along with anything else that can be as well. I am admittedly more tired, especially over the last few days. I just can't get myself moving, and when I do, I feel like it is in slow motion and taking forever. I nap frequently, even have neglected a few things just so I could squeeze in some more precious sleep but it hasn't helped yet. Also, the notorious sweats that come with infection are back. I get icy cold and just sweat until everything is damp. There have been times when I could actually wring my garments out...I kid you not. It is not a pleasant sensation at all, especially when it is so bad that I have to muster the energy to change an entire bed during the wee hours. I will give it a little time, time enough to tell if the TOBI is doing its job. I have since upped my chest physio and am watching my temps like a hawk too. If they start to climb, then I have to relent to being more aggressively treated before pneumonia sets in like it did in December which bought me a bed for 3 weeks. I am happy that I haven't seen the likes of any hospital for over 4 months...I am usually in every 3-4 months for those IV's and dread every visit. I am fortunate to have wonderful staff care for me while I am in and I am spoiled as far as food goes. I get to eat anything I want anytime I want. The nutritionist knows me so well that whenever she sees my name on the admit list, she knows just what to write for my diet. One less hassle that is certain. I can't tell you how many times I have had to wrestle with dieticians (in other facilities) that I am NOT on a diabetic diet (I have DM too), that I AM allowed to eat whatever I need to eat to keep my weight stable and not to restrict my diet. I just cover myself with extra insulin if my sugars creep up (which they tend to do anyway with an infection).

Another good indicator that my infection is starting to get out of control is being able to smell the bacteria on my breath. Gross, I know...but can you imagine how it tastes?? Eww!! My daughter has a very heightened sense of smell and can smell me from across the room. As the colonies increase, so does the potency of the odor. She will start to say things like "mom, you really need those IV's...you stink!"...Awww, such terms of endearment! My son usually starts to notice the effects of an infection before he can smell it. He will observe that I am more tired, crankier, and not quite as "sunshiny bright" as he puts it. He has incredibly good intuition and will start to ask me questions regarding when I will probably be put back in for the IV's. Unfortunately with this disease, the whole family gets to go through the routines too. Things that would be very unnatural to other families becomes routine for us. When I go through the motions, so does my kids and my mom. This saddens me, I only wish that they could just have a normal existence, days without having to worry about their daughter or mom being put into the hospital for the umpteenth time, or watching me hack my lungs out while doing my nebs and vesting. But, they are in this with me, they support me through the good, the bad and the ugly so to speak and I am grateful. But, it still doesn't help ease the guilt that I sometimes feel.

I am going to sign off for now and take a nap....Hugs to all Jenn :)