The Big Giant Head

Here it is, Sunday already. The fun week of swelling has led up to a weekend of spectacular edema. I am officially the Big Giant Head.  I can tell you, this is not fun.

I keep thinking next week will be better. Tomorrow will be better. But not unlike the joke, "I wish I was as skinny as I was when I thought I was fat," I wish I felt as good as I felt when I thought I felt like crap.

My mother in law left today and will be sorely missed. She is a huge help when she is here. Of course that is guilt inducing in itself. At this point in our lives, she should be coming here to relax and enjoy her grandkids, not slog though our laundry and dishes and cook. Unfortunately, this is not where we are.

We did manage to get Karissa's school supplies, so there is one task checked off. Natalie caught up the laundry and dishes so hopefully we can stay ahead of the game.

For some reason, the trach has been particularly goopy and toublesome this week. I'm not sure what night we had the real trach excitement. Maybe it was Friday night. Kelly had pulled the whole trach and cleaned it out. It was back in and all situated, but when he put the canula back in, the hacking started. He took the canula back out, but the hacking continued and now I am really struggling to breathe. The edema has closed off my nose, so there is no supplimental oxygen there. He tries suctioning and fish, but nothing works. It isn't too long before I faint from lack of oxygen and he has no choice to pull the whole trach. There at the bottom is lodged a big clunker, or lung booger, as Kelly calls them. There is no way that was coming up the trach. I'm just glad this wasn't at 3 am.

We've had at least one canula pull every night this week and it is getting old. Never getting a whole night's sleep is wearing. Each day the swelling is down a little bit less by bedtime, so the swelling just keeps increasing. The tooth pain isn't constant, but when it flares, it is horrible. I have to be exceedingly careful with the suction, because if I close my lips around the tip it pulls at whatever is cracked/broken/loose in that tooth. When that happens it is excructiating.

Swelling plus trach drama plus a very tight neck all adds up to very little good sleep. Tired makes it hard to move around. Not moving enough increases the swelling. And the vicious cycle continues. Just typing this with both my eyes swollen nearly shut is a challenge.

Karissa had an outing today with Angie, thank goodness. I found the absolutely perfect sleeping position on the couch and had probably the best couple of hours of sleep I've had in ages. This is both wonderful and terrible. The sleep was desperately needed and it was nice to have some solid sleep without my head sliding around. However, I am even more swollen when I wake up even though I was propped up fairly vertical. Also, I just want to sleep more, but I know if I don't move around I will regret it even more.

I had mixed success. I am too tired to move around much and some movements either aggravate my tooth, my neck, or the trach. Pain is just exhausting. The swelling continues and now there is even pain in my sinuses as the edema pushes down on them. I've iced and iced but there is so much fluid and so few places for it to go. I don't know if this is even anatomically possible, but I wonder if the extra goopy trach of late is due to all this fluid looking for somewhere to go.

It is hard to reconcile the doctors oohing and aahing over how great I am healing when I look this bad and feel worse. I felt better when I had a big hole in my neck and was sticking my head in the microwave everyday. How sad is that?

Tomorrow morning Kelly's first call will be to the dentist. Zachary has already spoken to him, so he knows I can only open my mouth a centimeter. I have no idea what he will do, but I hope he can do something. I am pretty close to miserable at this point.

I also have Zachary tomorrow afternoon, so at least I know I will get some pain relief. I know that movement would help the swelling, the constipation, the tiredness, and a host of other issues. I am digging deep to get the energy to push myself, but more and more I am scraping the bottom of my reserves. It sounds so simple-- pump your arms, tap your feet, get up and walk around-- yet when mustering the strength just to walk to the bathroom takes your all, anything more is a challenge.

Dang this is a whiny post!!! I am very sorry!

I better focus on my blessings before I go any further down this pathetic road.

Thank you to my wonderful mother in law, Natalie, for coming to help out. For holding my hand while my lungs are vacuumed. For tucking in the loose ends of my granny squares. For loving my girls. And for your amazing son, without whom I surely wouldn't have made it this far.

Thank you to Karina also for holding my hand and sitting by my side even when you are freaked out by what is happening to me or how I look. Thank you for helping. I'm sorry that life has taken this turn. This certainly isn't how I pictured your college days.

Thank you to Reggie for your wise advisement. I so appreciate being able to ask you questions knowing that your answers are reliable and thoughtful.

Thank you to Angie for taking Karissa this afternoon. This helped blunt the sadness of Grandma leaving and allowed me to have my wonderful nap. You getting her to shower is an extra bonus.

Thank you to Lesley for opening the shop today. The thought of getting dressed was daunting today, let alone being functional enough to go across town and be a helpful person. You are a blessing, as usual.

Thank you to my pit crew for doing your level best to solve the edema issue and to make me more comfortable as I deal with it. I really have no idea how I would make it through this without all of you.

Thank you to all the kind friends who send encouraging emails and text messages and post comments to help me keep going. They really do matter to me and they do help. Some days I need them more than others.

I'm sure I have missed several people I owe thanks to and for that I apologize. I try to remember everyone but my brain is not always clear. I am very hopeful that there are some answers and improvement for me tomorrow. I would like to be finished with the whining and complaining and move on to feeling better.

Any great ideas for reducing swelling? I am listening. Compression stockings don't work really well on your face unless you are robbing a bank. Well, that does tie in with me having to hand them a note...

Hopefully a happier tomorrow...

Love,
Kiara