Intubation #6

At the risk of sounding like a broken record.

Yes, David extubated himself, again. Yes, they had to re-intubate, again.

This time they put the breathing tube down his nose instead of his mouth AND  the Surgeon came and sutured the tube to his cheek. I think we can be a bit more confident that it’ll stay in place. That’s what I’m hoping for, anyway.

I need to be forthright here. David is in a tough place.

A. Very. Tough. Place.

A place I didn’t expect to be in, a week and a half ago. A week and a half ago when he was out of bed and smiling at the Occupational Therapist. A place I don’t want to have to visit ever again.

The doctors are perplexed at the progression of the GVHD. Perplexed doctors are never a good thing. Especially when the doctors tending to him are sought out for their knowledge. Families from all over the country come here for the expertise of these doctors.

David is in a tough place, indeed.

It took 4 hours today, to change the dressings that cover him from head to toe. 4 hours with a doctor, an RT  and 8 nurses.  There is discussion that maybe an OR suite would be a more appropriate place for the daily re-dressing of the babe.  We’ll see what tomorrow brings.

Right now one of the Fellows is visiting us, trying his damnedest to insert an arterial line into David’s foot.   An arterial line measures his blood pressure on a constant basis. They are unable to take cuff pressures because of his skin break-down. He had an arterial line placed in his wrist when they intubated him on Friday, but it’s no longer good (i.e. he’s losing the circulation in his hand) and it needs to come out. NOW.

Between him and his Fellow predecessor, it took almost 6 hours to get the new line placed.  6 long hours.

Every day is like running a marathon, not just for David and I, but for the doctors and nurses that are caring for him.

I feel so useless most days, because there really is nothing I can do. I can’t even do once simple things, like changing his diaper. I try to pitch in and help, though: grabbing supplies, opening packages, cleaning up around the room. Whatever small things I can do to be useful.

Diaper changes have become the stuff of nightmares.  An hours’ worth of time, at least 3 nurses, and an extra dose of sedative, just for good measure.

During this evening’s spectacular poop blow-out, the Nurse Who Rubbed Me the Wrong Way asked if they had thought about using a fecal containment device.

Isn’t that the definition of a diaper?

Some Nurses do not value my opinion as much as others.

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Categories: Life | Tags: , , , , , , , , , , , , | 6 Comments

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6 thoughts on “Intubation #6

  1. Sairah

    Thinking of you and sending you all of my reserves of momma strength!! (((HUGS))))

    -Sairah

  2. Ugh – you guys need something to go well. Sending peace and strength to both of you.

  3. C’mon, David, you can do it! We’re checking in and rooting for him!! Hang in there, mom. I know it’s so hard, but look forward to the days where this will be behind you both, and you will both be enjoying life again. You will be there.

    Thinking of you!!!!

    Veronica

  4. Tonya Fisher

    My friend,
    There aren’t words to describe what David is going through and what you are experiencing. Unfortunately, I have experienced watching this sort of suffering with my Dad while having 3rd degree burns over most of his body. I can relate to you in so many ways. I can also understand the challenges (although not the same) of having a child with ongoing health problems,the long hospital stays, the doctors, residents, fellows, specialists…etc. Know that I am there in spirit and praying daily for all of you. May God give you the strength you need and peace in you heart. I pray He lays on your heart and ears exactly what David needs. The Lord gives us mothers a divine direction in the care our child’s needs. We don’t have to be Dr.’s to do so. The Docs will be very wise to follow your instincts along with their given talents. They can only do what they have learned in the best of their abilities and leave the rest to God to take care of. Thinking of you often. Try to rest (although I know this is basically impossible). Please call me anytime you need to talk. I have 2 broad shoulders to help your load if you need. 😉
    Tonya

  5. That’s it—I am a major (New York speak: I mean MAY-JAH) fan. I found you on For the Love of Blogs…so glad I did. I love this stuff.

    You live a life that’s real. You are a warrior mother, wife and woman. You make me want to kick myself when I whine about the garbage and dishes and numbers on the scale. (Well, maybe not the garbage. I have issues there.)

    Praying for you (really, I mean it) and your family.
    Keep us posted!!!

  6. Pingback: Blood and Stitches | transplanted thoughts

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