Kindred Hospital – Days 4 – 8

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Notice the Wonder Woman socks

Anya walked 440 feet yesterday!  Yes, it was a big accomplishment considering where she was 13 days ago when she was completely unrecognizable with a ventilator tube down her throat and completely sedated in the ICU.  Of course, she walked with the assistance of a ventilator, but only because the nurse practitioner wanted her to do that first.  Next time, she’ll most likely do the walk with a trach collar.

Anya still has the two chest tubes in her, but they clamped them yesterday to see if the pneumothorax would come back and they haven’t, so I imagine that they will most likely remove the chest tubes in the next day or two.  The chest tubes are each connected to a big box, so it’s hard to get around with these tubes and boxes attached.  I think once these tubes are removed, then she’ll be able to get around much better.

Lauren and Becky made this poster!

Thanks Lauren, Becky, Luke, and Stephen!

They removed the IV line that was coming out of her neck because it’s been in there for way too long.  They replaced it with a PICC line in her left bicep area, but we found out yesterday that a clot had formed around the line, so she’s going to have to be on blood thinners for about 4-8 weeks.  I asked the doctor if this will have any impact on transplant and he said “no”.  However, with any blood clot, there is a risk of the clot going into her heart and/or lungs and causing some “catastrophic” damage.  Honestly, the doctor didn’t seem too concerned about it, even though he used the word “catastrophic”.

Anya had a bronchoscopy this morning.  The same procedure that punctured her lung a few weeks ago.  This time they did not do a biopsy.  The pulmonary doctor said that she will most likely have to do a bronchoscopy every 2-3 weeks to clear out the mucus in her lungs until she gets transplanted.

Here are the goals for the next week:

  • Remove chest tubes
  • Stay on the trach collar for at least 12 hours straight (her max has been around 7.5 hours)
  • keep exercising
  • increase feedings to 60-80 mL/hour (55mL/hour x 24 hours x 1.2 Cal/mL = 1584 calories)
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“never never never give up” – Winston Churchill

If Anya can stay on the trach collar for 12 hours, then they’ll do a swallow test on her.  If she passes the test, then they can cap the trach tube (or use the passy-muir valve, as a few of you have mentioned) and get her talking again, and maybe even eating.  She hasn’t been able to talk for a little over 2 weeks now.  She hasn’t drunk or eaten anything, except for the tube feedings, for about a month now.  Can you imagine that?

That’s really about it for the past 5 days.  Thanks everyone for sending gifts.  Whoever sent the blue blanket, please fess up, so that we can thank you.  Also, thanks to all who sent cards!

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Thanks Jason and Kristi!

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Thanks Ginly, Rob, Jo, and Raymond

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Thanks “Blue Blanket Person”

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Thanks Colette!

Thanks Kristi and Jason!

Wonder Woman socks!

Afghan Blanket in use

Afghan Blanket in use

 

Houston Methodist ICU – Day 20 -> Kindred Hospital – Day 1, 2 & 3

Boogie Board

Boogie Board

Anya spent nearly 20 days at Houston Methodist Hospital with 10 of those days in the ICU.  On Wednesday, she was moved to Kindred Hospital across the street.

Kindred Hospital a long term care facility for all types of patients.  On her floor, the 5th floor, all of the patients are either pre or post transplant.  It’s a great facility because all of her transplant doctors from Houston Methodist make their rounds over at Kindred Hospital as well.

We’ve only been at Kindred for 3 days, but from what I’ve seen so far, the care at Kindred has been top notch.  It seems as though there are more nurses and therapists per patient here.  The good thing about Kindred is that Anya has her own private room with a door, a window and a bathroom.

In the ICU, she spent most of her days looking outside a huge glass door staring at doctors, other patients, nurses, dead people (yes, a recently transplanted guy died in the next room and we looked on as they brought the gurney in to get him), and just a lot of hoopla.  It’s definitely a more comfortable setting at Kindred.

So, how’s Anya doing?  Well, she still has two chest tubes in her and she’s still breathing through her trach tube on CPAP.  She still can’t talk yet.  From what I understand, she may not be able to talk until she gets a transplant, unless she can somehow use a nasal cannula with the trach tube deflated.  That may be an option in a week or two. Overall though, she looks good, minus all of the tubes coming out of her.  I feel like her breathing is the best that it’s been for a while now.  I think once she gets all of the tubes out of her, she’ll feel even better.

We’re still getting some conflicting answers from some of the doctors in terms when, and if, they will list her.  The infectious disease doctor came in on Thursday and told us that they’d like to get 6 months of IV antibiotics in her before listing her.  Then, the pulmonary doctor came in on Friday and said “3 months”.  Ideally, I think both sides would like to get the full 6 months of treatment, some weight gain, and lots of physical therapy before listing her.

It’s been pretty tough not being able to talk to Anya.  She’s been writing on the Boogie Board and we’ve been reading her lips, but not being able to talk to her really sucks.  I’m sure it sucks even worse for her.

If anyone wants to send her anything, please send it to this address:

Kindred Hospital, attn: Anya Crum Room 509, 6441 Main St, Houston, TX 77030

You can send anything, but live plants.  The bacteria and fungus in the soil are not good for her lungs.

BTW…thank you to Chrissy for driving over an hour to bring us a home cooked meal!  Anya didn’t get to eat any, but her parents and myself sure enjoyed the non-cafeteria food.

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flowers from chrissy

Houston Methodist – Day 18 & 19: Getting Better

Anya’s improving daily.  She was sitting up in a chair for about 4-5 hours yesterday with only the trach collar at 40% oxygen.  Ideally, we’d like to see Anya off the ventilator completely, but that may not happen due to her high CO2 retention levels.  If we can limit the ventilator to just night use, then I think that’ll be a win.

The swelling has gone down tremendously.  Her face is almost back to normal.  There’s still a little bit of swelling around the neck, torso, and arms.  I think another day or two and she’ll be back to her normal size.

She still has two chest tubes in her.  The doctor told me that he clamped them this morning, so if there’s no more swelling over the next 24 hours, then they’re going to remove both of them tomorrow.

Also, the doctors are waiting for the results of her sputum cultures from yesterday.  If they feel like the fungal and bacterial infections are under control, then they are going to move her over to Kindred Hospital.  This will most likely happen tomorrow or Thursday.

For the most part, she is doing well.  The doctor is saying that she lost about 10% of her left lung function due to the pneumothorax.  That percentage might be slightly better now because of the second chest tube.  The subcutaneous emphysema is under control.  They are feeding her roughly 1620 calories per day via the J-tube, so I think her weight is, at least, maintaining.  She is slowly starting regain her strength.  Also, there hasn’t been much green stuff coming up from her sputum, which means that the infection is hopefully under control.

Realistically, I think if she gains about 5-6 pounds in 2.5 months, and gains enough strength to walk 100-200ft on her own, then I think they will list her.  Depending on when they started the clock, we’re looking at some time around December 1st.  For now, we’re going to concentrate on the mini-goals.  First things first, let’s get the chest tubes out and get her moved over to Kindred Hospital to start rehab.