Breaking out of the hospital …

Deb and her friend Tara, discharge from Stanford Hospital
Deb and her friend Tara, discharge from Stanford Hospital

I am happy to say that Deb was discharged from Stanford Hospital late Tuesday afternoon.  She was so glad to come to the lovely townhouse we are renting, and not be disturbed with beeps, taking vitals every 4 hours, etc.  Deb is not out of the woods, though, by any means.  We have already been to the outpatient clinic for blood draws early this morning, and she has another appointment this afternoon.  The length of that appointment depends upon whether she needs transfusions, hydration, or anything else.  Deb still has her central catheter in, and that will stay in for the time period we are here.

Deb is very tired, and was asleep again almost as soon as we walked in the door from the blood draw.  She is very weak; she was receiving IV hydration and nutrition for the past couple of weeks, and she now has to intake all of that orally.  She does not have much appetite and her throat still bothers her from the mucositis (sores), so she can only eat very soft foods.  Pray for Deb’s appetite to improve as she needs food to get her strength back again.

Monday and Tuesday were busy days for me as Deb’s caregiver.  I had to learn how to change the catheter dressing and flush the tubes.  We had a discharge meeting with the nurse, a meeting with the physical therapist to go over recommended activity and restrictions, and a meeting with the pharmacist on administering the many medications that Deb is still taking.  I also had to pack and move from the apartment that I was renting to the townhouse (thanks Andy, for your help), and then we had to pack up Deb and move her from the hospital (thanks Andy and Tara).  I couldn’t have done it all myself!

Please keep the prayers and positive energy coming Deb’s way, as she still has a long way to go on the road to recovery.

 

Looking ahead to discharge

Deb's IV pole -- her constant companion for the past few weeks
Deb’s IV pole — her constant companion for the past few weeks

It’s hard to believe, but we are actually starting to talk about when Deb will be discharged from the hospital!  The doctors had said she would improve quickly when her white blood counts came up, and so it is.  However certain criteria must be met for Deb to be discharged.  Her blood cell counts must be at a satisfactory level; her oral fluid and food intake must be sufficient to maintain hydration and weight; she cannot be running a fever; and she must be off all IV meds and able to swallow a pill.  She was able to drink fluids today, and tomorrow will try some soft food.  I’ve attached a picture of Deb’s IV pole; they are in the process of weaning her off of everything (or transitioning from IV to pill form), and the goal is for discharge on Tuesday, April 8.  Needless to say, she is very excited!

After her release from the hospital, Deb is required to live nearby with a caregiver (that will be me, Deb’s Mom) for 90 days from the date of transplant.  She will have frequent appointments at the hospital as an outpatient during this time period for blood counts, transfusions if needed, and to be monitored closely for infections, side effects, and Graft vs Host Disease (GVHD), which can begin at any time in the first year after transplant or even beyond.  We are renting a charming townhouse on the Stanford University campus and will be about 2-1/2 miles from the hospital.  The owners are going away for three months, and the timing is perfect for us.  We are so happy to have found such a nice place to stay, our “home away from home” for a while.  It’s a lovely and quiet community with walking paths and a swimming pool – not that Deb will be swimming (she’s not allowed), or sitting in the sun (that’s not allowed either), but it will be a nice place to go and be outdoors (wearing her HEPA filter mask, of course).

Deb is not out of the woods yet, but she has improved a lot over the past few days.  It sure is nice to have some good news to relay after some really tough weeks.  Keep those prayers and positive thoughts coming!

Day +11 (Sunday)

Despite the pain and other side effects that Deb has suffered, the doctors and nurses continue to tell us that she is doing really well.  The side effects are to be expected, and mean that the treatments are working as they should.  So side effects are good, in an odd sort of a way.  Complications are not good, and so far Deb has not had any real complications, such as high fever, pneumonia or other infections.  When Deb spiked her first fever, they took blood cultures, urine culture and a chest x-ray, and all came back negative.  Her fever responded to the Tylenol and went down, and while it’s up and down a bit each day, it is not at a dangerous level.  Her blood pressure and other vital signs remain in normal ranges.  So we have many things to be thankful for.  In December, after Deb’s second chemo treatment, she ended up in ICU with a skin infection and pneumonia, and that was very scary.  We hope and pray that she will avoid anything like that happening again.

Even though Deb is doing well from a medical standpoint, it was a tough weekend for her with the mouth and throat pain, two platelet transfusions and one red blood cell transfusion.  Deb also has had some breathing problems as she has chronic asthma, so she is receiving treatments for that too.  She probably will not be able to eat for several more days, but she did get her voice back, although they want her to rest it as much as possible.

Today Deb had her fourth and last dose of Methotrexate, one of the drugs given to help prevent Graft vs Host Disease.  Methotrexate causes mouth sores, so we’re glad that is over with, and she should be able to start healing soon.  We are now waiting for engraftment, which is when the stem cells she received from her donor start growing and developing, and her bone marrow and immune system begin to recover.  Signs of engraftment usually appear about 2 to 3 weeks after the transplant.  The first sign is a rising white blood count.  The doctors say that once Deb’s immune system starts to recover, her condition will improve rather quickly.

Thanks to you all for your prayers and messages of support and love.

Mary Lou

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