Kindred Hospital – Weeks 5 & 6

Yes, we’re still here.

The big news is that Anya’s case is going to be reviewed again next Tuesday, November 4th.  There is a chance that Anya will get listed on that day.  The head of the pulmonary team says that he is going to try his hardest to get her listed.  On the flip side of that, the head of infectious disease team says “no promises”, but there will definitely be a discussion.  We’re keeping our fingers crossed.

At this point, we have no clue what to expect.  We really thought that we’d get listed at Duke 7 months ago.  That was SEVEN LONG MONTHS AGO.  We can’t control what they decide, so we’ll just keep moving forward with our rehab program and trying to get Anya in the best shape possible for another transplant.

Anya chillin' with the Boogie Board

Anya chillin’ with the Boogie Board

Anya has been such a trooper.  I can’t imagine what she’s going through.  Not just physically, but mentally.  In and out of hospitals since July, confined to a bed for most of that time, having nurses, respiratory therapists, doctors coming in and out of the room, poking her with needles, taking her blood pressure, x-rays, bronchoscopies, administering IV antibiotics at all hours of the day, non-stop…she is most definitely the strongest person that I know.  Then, imagine going through all of this while breathing through a straw.  Sigh.

Not much has happened over the past week and a half.  The biggest thing has been Anya’s anxiety.  For a few days there, she was waking up several times a night with panic attacks.  She explained it to me like she was being strangled.  The doctors checked everything, including blood tests, CO2 levels, blood pressure, ventilator settings, x-rays, and everything “looked fine”.

She’s still getting good volume on the ventilator, which means that she’s moving air in and out of her lungs at a good rate.  Her CO2 levels have remained unchanged around 70 mmHG.  Her SATs have stayed above 90%.  And her X-rays have showed no degradation.  So, the docs and respiratory therapists have been attributing most of her recent breathing problems to anxiety, which is a very common problem amongst pre-transplant patients.  The anxiety seems to be getting better though.

Anya walking with Rick (PT) and Dad trailing with a wheelchair

Anya walking with Rick (PT) and Dad trailing with a wheelchair

Anya’s had some good days and some bad days, but I feel like she’s been getting stronger every day.  Some days have been harder than others, but the hard days usually pass.  Yesterday was a good day for her.  She did her daily walk and after two laps around the floor (880 feet), she told the physical therapists that she wanted to go around one more time, so she walked a total of around 1350 feet, while only stopping twice!  That’s a record for her.  And they weighed her yesterday at 77.4 lbs.  That’s a gain of over 5 lbs from her lows.  She even managed to eat a Fage Greek yogurt a few days ago.  It didn’t taste all that great to her, but we’ll take the added calories any time.

Another bit of good news is that my parents and sister drove my car down with the dogs last Friday (Thanks mom, dad, & sis!).  I brought the dogs over to see Anya on Saturday.  It was the first time in 3 months that she’s seen the dogs.  I captured the moment on Instagram:

So, things are moving along here.  We just need to keep this going until Anya gets listed.

Also, I wanted to thank everyone for their donations.  The hospital bills are just starting to come in.  I’ve never had to deal with so many bills before because I wasn’t with Anya for her first transplant but I can see how dealing with insurance and bills can drive someone mad.  The donations will go to good use.  It will allow us to focus on getting Anya stronger, instead of worrying about pile of bills coming in.  Thank you.

That’s about it for now.  #StayStrongAnya

Taking a break from her daily walk around the floor

Taking a break from her daily walk around the floor

Kindred Hospital – Week 4

Another week has passed!  Thankfully, this past week was not as eventful as the previous week (i.e. ICU visit).  Uneventful is good though.

Kindred Hospital

Kindred Hospital

Anya spent most of the past week recovering from the ICU visit where her CO2 levels shot up to 147.  She hasn’t had an episode since then.  We bought our own pulse oximeter to make sure that her O2 levels are not dipping.  That’s usually the first indicator of something not right.

The bronchoscopy that the doctors performed last week tested positive for a virus called HSV, but nothing else.  HSV a pretty common virus.  The doctors weren’t too concerned with it, but they wanted to make sure that it didn’t get out of hand, so they put her on a drug called Acyclovir for 10 days.  This virus may also have caused her shortness of breath and high CO2 levels.

Anya walking 700 ft on the vent with Step-dad, Roger, in tow

Anya walking 700 ft on the vent with Step-dad, Roger, in tow

Anya’s CO2 levels are back to normal now (~70).  Normal for her, at least.  Her oxygen levels have gone down a little bit due to the latest setback.  She hasn’t been able to walk as far, nor can she put on the talking valve (passy-muir) because her O2 levels dip below 90 when she does, so she hasn’t been able to talk for about a week now.  Hopefully, she’ll continue to improve a little bit, so that we can put the passy-muir valve back in.  Not being able to talk really sucks!  For her and for us.

This past week, Anya walked several times.  Most walks have been on the vent.  On the vent, she was able to walk about 700 ft.  On the trach collar, she was only able to do about 250 feet.  The doctors are telling us that distance is more important than being able to walk on the trach collar, so the plan is to try to get as much distance as possible from here on out.

Memory and Cognitive Ability tests

Memory and Cognitive Ability testing

Her weight…we’ve really been struggling with this one.  She went down to about 71-72 pounds after the ICU visit, but as of this morning, she’s back up to 76.6 pounds.  She’s still getting 2880 calories from the feeding tube on a daily basis.  That alone should be able to help her gain weight, but the vomiting and diarrhea has made it tough.  With that said, I feel like we’re making progress with the nausea and diarrhea.  They changed her anti-nausea medicine to every 6 hours instead of every 12 hours and they’ve put her on a schedule for the Lomotil (anti-diarrhea), instead of having her take it “as needed”.  Both of these changes seems to have helped.  I will be happy if we can get her back up to 80 pounds.  I’ll be ecstatic if we can get her up to 85 pounds.

One of the big discussions that we had this week with the doctors was concerning the 3-6 month time frame that they gave us.  There was a still a lot of doubt about when they started the clock.  Based on what one of the doctors told us, the official clock started around August 17-25, which is when they started treating her for the mycobacterium abscessus.  So, as of right now, we’re looking at a minimum of late November before Anya is eligible to be listed.  Of course, the infectious disease doctors still want her to get the full 6 months of antibiotic treatment before actually going to transplant, which would put us at late February 2015.

I think the goal is clearer now.  If we can get to Thanksgiving without too many setbacks, then Anya will be, at least, eligible for transplant.  I don’t think that they will actually list her at the time.  I think the only reason that they will list her before 6 months is if her CO2 levels are so high that can’t clear it on the vent/CPAP.  At that point, they’ll probably have to put her on something called ECMO to clear the CO2, and she’ll be listed, if it gets to that point.  Hopefully, it doesn’t because ECMO is not something that anyone wants to be on.  Thankfully, it’s an option here at Houston Methodist.  For now, the immediate goal is to get to Thanksgiving without incident, so we’ll just focus all of our energies on that.

Photo Oct 13, 5 45 13 PM

Anya’s Room – Larry, Anya, Roger, Marion (from left to right)

Command Center aka Ikea Central (our apartment at Marquis Lofts) – If anyone wants to come down, we have a place for you to stay…pick a corner!

Thank you to everyone that has stopped by, called, sent cards, gifts, texted, donated, etc.!!!

Thank you to everyone that has stopped by, called, sent cards, gifts, texted, donated, etc.!!!

Kindred Hospital – Days 14 -21

We had one minor set back on Monday/Tuesday of this week. Anya’s resting oxygen saturation levels were around 80% whereas they should’ve been above 90%. We couldn’t figure out why because other than a little bit of fatigue, she wasn’t displaying any other symptoms. Her O2 levels were enough of a concern that the doctors ordered an emergency bronchoscopy.

prepping anya for the bronchoscopy

prepping anya for the bronchoscopy

The bronchoscopy did not help her O2 levels, nor did they find any mucus plugs in her lungs. The doctor then ordered an ABG (arterial blood gas) to measure her CO2 levels and sure enough, it came back with a value of 147 (normal = 35 to 45). With such a high amount of CO2 in her lungs, the doctor decided to send her down to the ICU for an overnight observation.

By Tuesday morning, Anya’s CO2 levels came back down to her baseline, around 70. We’re not exactly sure what caused her CO2 levels to shoot up so high. Thankfully, they caught it sooner rather than later, so we only lost about two days of progress.

With that said, the cost of those two days was about 5 pounds of weight gain. On Saturday and Sunday, the nurses weighed Anya and she went up to 77.4 and 77.6 pounds. She was doing great eating breakfast and a big dinner every day for several days, but one trip to the ICU and all of the weight gain was wiped out. The nurses weighed her yesterday and she was 72.6 pounds.

A lot of her weight fluctuations probably has to do with her constant diarrhea and vomiting. The doctors still haven’t been able to find a solution for them yet.  And they may not be able to find one until she’s done with some of the antibiotics that she’s taking.  The Lomotil (anti-diarrhea) and Zofran (anti-nausea) seem to be helping, but only slightly. Hopefully, they will find a solution soon because she really needs to start gaining and retaining weight.

So, believe it or not, the doctors are preparing to send Anya “home” next week.  They feel like she is ready to be released.  She’ll still be on a home ventilator and IV antibiotics, but everything will be administered by a home nurse and/or us (Anya’s mom and myself).  Home for the next several months will be the apartment that I rented about 2 miles away from the Medical Center.  Honestly, I didn’t think that they would release Anya until after transplant, but I guess they have their reasons.  We will most likely not be back to our real home in Virginia until she gets transplanted.

I don’t necessarily agree that sending Anya home is a good idea, but like always, we’ll make the best of their decisions.  I’m hoping that they keep her here at Kindred for a few more weeks, until we can, at least, stabilize a few things, like her weight, nausea, and diarrhea.  I just want to avoid having to go through the entire hoopla of being admitted to the ER, just in case something happens at home because it doesn’t take much to wipe out a few days of progress.  We really can’t afford too many more set backs from here on out.

We still have a minimum of one month until the doctors review Anya’s case again.  Maybe even four months, depending on which doctor we ask.  Basically, the head of the transplant team thinks that 3 months of antibiotic treatments is enough to treat the M. Abscessus infection and the infectious disease doctors thinks that a full 6 months of antibiotics is necessary.  Anya’s been on antibiotics to treat this infection for about 8 weeks now.  Hopefully, they will find a happy medium soon.

That’s about it for now.  Thanks for all of the gifts and cards that people have sent.  Please note that we have switched rooms at Kindred Hospital.  Here is the new address:

Kindred Hospital, attn: Anya Crum Room 501, 6441 Main St, Houston, TX 77030

It should be safe to send stuff up until next week, but I will update the blog, if and when Anya gets released.

anya's walk this morning on the trach collar...about 700 feet.

anya’s walk this morning on the trach collar…about 700 feet.