Wednesday, October 24, 2012


We did it. We made it to the hospital by 5:30am. Even the hospital was running on time this morning so Rambo had his procedures done with little ado. It's over and we are home. There was a point during recovery where I didn't think we would make it. Rambo was coughing up huge blood clots and his trach was thick with mucous and blood. I thought for sure we would be admitted. But thankfully, they let us stay a few more hours to see if he could push through and he did! Instead of recovery being two hours it took more like four.

Rambo had his ears and throat checked out from..... head to toe?    ...They were completely evaluated. Aaaaannnnnd, drum roll please------------ his ears and hearing are perfect. No fluid. No tubes. No hearing loss. Can I get a revolution?!?!?!

That is the good news. Here is the bad news:

(I warned you with the title that this might be gross.) That is his throat. The little white piece you see is the top curve of his trach. Yes, you should be seeing a lot more of it. That 'lump' is scar tissue and inflammation. It is not blocking his airway to his lungs but it is blocking all the air that gets above his trach making it extremely uncomfortable for him when he uses things like his speaking valve. It also makes him uncomfortable in general and even more so when he is inflamed from tracheitis. Which seems like all the time anymore, but that story comes along later.

So here is what they did:

They chemically eradicated it. At least for now. Once all that black is gone you will be able to see all of the trach that you should. They did the same for the area right outside the stoma (where the trach goes into his neck). 

He was not a happy baby. 

Hopefully this will not need to be done again. Ever. But I think those are high hopes. 

On another 'Rambo note', he was pleased to yet again have the mighty fall. The anesthesiologist felt pretty cocky about getting an IV. He said that it's what they do ALL day; that everyone says they are a hard stick; that the anesthesia dilates the veins and makes it easier; that he would have no trouble. 

Tsk. Tsk. Tsk.

6 sticks later and they finally get an IV. The anesthesiologist admitted that he's a tough one and, although the anesthesia USUALLY helps, it didn't in Rambo's case. We tried to warn him. At least Theodore was asleep for it all.

Now back to the tracheitis- it looks like he still has the difficult bug to kill. And it is, indeed, being difficult. The problem is that we can't get the medicine to treat it. Apparently it is an extremely expensive ($5600) medicine. The pharmacy has to order an entire box and it is nonreturnable. Theodore doesn't need an entire box. Of course. So the pharmacy won't order it. They said they do not have a single other patient on that medicine. They called all the other local pharmacies and they all have the same issue and we may need to get it from Hopkins. Which would be fine if we were still at Hopkins, but we were 10 minutes away from home when I got the call. They are being really good about trying to figure out a way to get the medicine quickly and locally, but I'm not so sure it's going to happen. It just can't be easy, can it?

That is all from me. I've been up since 2:50am and I can barely keep my eyes open. Goodnight, all.


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