We're home and don't have to return to Texas Children's Hospital until Monday (December 2).  Erin is doing very well!

The next stay will last 2-4 weeks while Erin has her first stem cell replacement.  I will keep you posted.
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BREAKING NEWS......WALTER, ERIN, AND VICKIE WILL HEAD TO BRYAN AROUND NOON ON THANKSGIVING DAY.  WE WILL BE HOME UNTIL MONDAY MORNING.  THANKS FOR ALL THE SUPPORT!

Real food, but no fat yet.  No fever since 11:00 Tuesday morning.  White counts headed back up.  All of this is real progress. 

Yesterday the Houston Aeros hockey team came by for a visit.  All the players who visited still had their own teeth, but when I mentioned it, they all looked around for wood to knock on, and said they hoped I hadn't jinxed them by noticing.  It was a pretty funny moment.  The more interesting story was that the woman who was conducting the team around the floors was the intern in charge of printing the e-greetings that come through the TCH website.  She had come up to meet Erin.  She said that Erin got more e-greetings than anyone in the hospital and that she was sort of a celebrity because of it.  She also said that sometimes there were so many greetings for Erin that it clogged the system and created a backlog. 

Thank you , thank you, thank you for being so faithful in letting Erin know you are thinking about her.  We have all the cards and greetings taped to the the walls and cabinets, and it makes the room very colorful and personal!

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Doctors pulled Erin's left chest tube around lunchtime on Tuesday.  This will make her a lot more mobile.  She will still have to stay on clear liquids only until Wednesday morning.  This makes her very mad.  Her white blood counts are suppressed, and she is still running a borderline fever about once or twice a day.  I'm not going to make any predictions about when we will be out of here, but the word on the streets is that we might not start on the stem cell replacement (a.k.a. bone marrow transplant) until Monday.  Despite the rocky road to recovery, we still have a lot to be thankful for.

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The doctors put Erin back on clear liquids on Monday to try to stop the chest drainage and get the tube out, hopefully tomorrow (Tuesday).  Then we would have to stay at least until the next morning.  Everything else is good.  I'll keep updating as I find things out.

Erin just had her daily x-ray, and in a little while will start her last pre-bone marrow transplant baseline test--kidney functioning.  Erin slept fairly comfortably and is not needing too much pain medication.  Surprisingly, her worst pain comes from her lower back (I guess where the surgeon scraped the tumor off her spine), rather than from her incision area or chest tube.  We are still hoping to come home for a while before we have to check back in on Friday to start the bone marrow transplant.  No fevers yesterday and the drainage slowed considerably overnight.  We'll keep our fingers crossed.

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Erin had a restless night Saturday night after the epidural was removed, getting used to the various pains in her body that have been suppressed by it for the last week.  She is doing better now.  We took a long wagon ride and even got to go outside and enjoy the beautiful weather for a while before lunch.  She has gone almost 24 hours without a fever, and nothing has grown in the cultures yet.  The chest tube is still draining.  Not much action around the hospital on Sundays, so not official word on our progress towards discharge.

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Overall, Erin felt better on Saturday.  She played the Memory matching game with her friend Kelly, and worked jigsaw puzzles.  For the third day in a row she has walked a substantial amount, and she even played in the playroom for a half an hour or so this afternoon.  She has also breathed on her own without setting off the alarms for almost 30 hours.  Unfortunately, she ran a fever last night and again around noon today (Saturday).  So far the blood cultures and urine samples have not grown anything, but she is on a couple of antibiotics just in case.  They will remove her epidural shortly, to make sure that it is not introducing some sort of infection.  The chest tube is draining less, which is also good news. 

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Erin had a bronchoscope Friday morning at 8:00 to suction out the mucous and plugs that were keeping her from breathing well.  Air flow has improved and she will continue to do breathing  treatments and physical therapy for a couple of days until the lung pumps back up.  The doctors have also changed her diet a little to try and reduce the drainage from her chest tube (she is draining something called kile(?) that is leaking when fats move through the lymphatic system).  It looks like the earliest we could get home is Monday evening, but I suppose, since we are dealing with unknowns, it could be longer (or maybe shorter).  The preliminary pathologist report came in with no sign of neuroblastoma in the bone marrow. 

If anyone from Bryan/College Station is planning on being in Houston on Sunday, give me a call at (832) 826-0916.  Davis would like to come for a visit.  We have a way to get him here on Saturday, but are looking for a ride home for him on Sunday.

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Still no word on when we might get to come home.  Erin's left chest and lung is still causing a couple of problems.  The lymph system continues to leak on that side.  Until that slows down the chest tube stays.  Her lung is also not working as well as it should.  She needs to move around and cough more to dislodge mucous that has accumulated.  These two problems put her at risk to develop pneumonia, although so far no sign of that.  If her lung function doesn't improve on its own soon, she will probably have to have a bronchoscope to clear things out.  Erin's normally perky disposition is being sorely tested this week.  We're going to try and take her out for a wagon ride around the hall shortly.  Maybe that will cheer her up.

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Erin's slow march forward continues.  The surgeons removed the first chest tube Wednesday morning about 10:00.  She had an exhausting day yesterday, with no fewer than 45 people (staff and volunteers) coming by the room at various times.  By the time her visitors from Bryan got here, she had fallen asleep.   This was probably a good thing, because she had run out of cooperation and good cheer.  Things have been quieter this morning.  Erin is standing and sitting on her own.  She really had a good time playing poker and working on a harvest pumpkin craft project with Davis, who visited last night.

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Good news, the doctors approved real food for Erin as soon as she woke up on Tuesday.  I had her favorite morning starter, raisin bread toast and blueberry muffins, waiting for her, so she could have something even if her breakfast tray was not here yet.  I see pizza in her future!  She slept well last night and went right back to sleep every time the nurses came in to check her vital signs and fluid levels.

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Erin moved out of ICU and into room 916 around lunchtime on Monday.   She still has her various tubes, but we got rid of all the monitors (heart, thoracic(?) pressure, respiration, continuous blood pressure and temperature, and blood oxygenation).  Most of the post-surgery puffiness is gone, so she is looking recognizable again.  The attending physician has not approved solid food yet, but it is just a matter of time before he caves in to her will.   No word yet about a schedule to move us on towards discharge.  Obviously, she still has a number of hurdles to clear before they will start thinking about sending her home.  This means you can send e-greetings at the above site or phone if you want (we have an answering machine, so leave a message if we don't answer).  I can also check the e-mail from here (it's just hard to send bulk e-mail).  I will continue to let you know how things are going.

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Erin had a static day on Sunday.   The nurses took Erin off the ventilator around 5:00 Sunday morning  at her insistence.  She breathed well  on her own, but taking out the breathing tube revealed that she had a fluid accumulation somewhere on her left side.  It took most of the day for the doctors to figure out whether it was inside (caused by a mucous plug blocking the passageway or possibly pneumonia) or outside of her lung (a side effect of a brief opening of the left chest cavity during the surgery).  An ultrasound ultimately identified the fluid as being outside the lung.   They put in a second chest drain tube about 9:00 last night.  Of all the things that could have been causing her lung to collapse, this was the easiest and quickest to fix.  She rested very well during the night and looks good this morning. 

She has a Foley catheter for liquid waste, now two chest tube for drainage, and an epidural for pain.  Everyone continues to be pleased at her condition, and surprised that she is so articulate and adamant about what she wants to happen.  She is currently trying to wheedle solid food out of anyone and everyone who comes in the room.

The surgery did last longer than we expected, but the surgeon was meticulous and careful and wanted to be able to remove the entire tumor (which he did).  He did not find any surprises.   I will report more when anything changes.