I Like the Change in Goals

Spent the night at the hospital because Willem didn't want me to leave.  We watched a few Harry Potter movies until the power went out (routine test) and we both went to sleep.  Neither of us slept well: Him for obvious reasons and me because it's an ICU... Who sleeps well in an ICU?

Awoke to find Willem blanket less and curled into a ball.  Someone had taken off the warm blanket and put it in a chair and the other one was at the foot of his bed. 'Guessing that he had been changed and cleaned early this morning and they decided to just leave the blankets off.  I had a chat so-to-speak with the nurse.

Nurse and I spoke of some goals for Willem for today:  Washing hair and getting out of bed.  Much better than last week's goals of... Well... Let's not bother with that -- if you've been following, you get the idea.

More talk of removing drainage tubes today and not sure yet when, or if, that will happen.

All numbers looking great.  Bilirubin is down from 13 to 9 which seems to support the theory that getting some real food in the GI is what Willem's liver needed.  Liver is on the mend.

Willem is far more alert today than yesterday but not willing to talk just yet because his throat is, as far as we can determine, really bothering him.  So he's watching a lot of TV and raising his hand when he needs something; and that something, thus far, has alluded us.

Nurse will be putting Willem in a stretcher-like chair around 4pm today which is good for a change as well as good for his lungs.  He will not be allowed to leave the room however -- something I had not realized.

Doctor spoke of taking out his last chest tube tomorrow and, quite possibly, the last abdominal tube the following day.  More talk of moving him out of the ICU early next week.

I am enjoying watching the machines, tubes, and wires gradually disappear and beginning to feel more comfortable with the optimistic moments.

********** THANK YOUS**********

Thank you Peri for taking Lilia and Wyatt for a few days -- I missed them but you can have them back now. :-)

Thank you to the Ray's for the lasagna -- wishing now that we didn't share it with Syd & Mary. :-)  And thank you for watching Wyatt and Liliana so much.  You guys are awesome.

Thank you Jody and family for the wonderful card and gift certificate that we will most certainly use for fuel.

Thank you Pam

Thank you to friends of Syd & Mary that are sending thoughts and prayers.

Cautiously Optimistic and Pleasantly (can't remember)

Liliana and Wyatt being in the room with Erin and myself today had the effect of completely erasing whatever I was going to blog about so you get...  Sorry, interrupted again...  You get whatever I think was said and in piecemeal.

The doctor said that he was "...cautiously optimistic and pleasantly (I can't remember the word. It might have been 'surprised' but that doesn't seem very doctory [yes, I just made up a word])..." in regards to Willem's recovery.  The gist is that he's getting better; slowly, but surely.

There are a few concerns, and, thankfully, the doctor elected to not cover those today and instead just talked about how Willem will be weened off of his sleepy meds with the hope of being able to wheel him around in a chair tomorrow and get a change of scenery, etc.  Doctor added, again, that the hope is to have Willem out of the ICU by Tuesday and relocated to the Hematology/Oncology floor.

Thank you to 1SG and Mrs. "Top" for stopping by my work today to visit -- it was great seeing you and I felt pretty good after talking to the both of you.  I noticed that my hospitality smiles came more naturally after our conversation.

Nice segway:  And thank you to my employer, my department in particular, who continue to bend over backwards and cover down to accommodate me; first, for the military, and, now, for this. Thank you gang -- I am grateful and appreciate that your being there affords me the opportunity to spend more time with my son.

Thank you to my teammates: Dean, Amanda, and Patrick
Thank you to my super: Jim
Thank you to the director: Scott

Thank you Gretchen for your generous Paypal donation! Thank you.

Chemo Days Are Poopy

8:00PM
Arrived to find Willem pretty out of it and my heart sank when I saw that all-too-familiar mauvish pink bucket on his bed  Just looking at it makes me want to vomit in it.  Nurse informed us that Willem received his chemo around 3:00PM so he was a little nauseous from the treatment and did throw up a little bit -- hopefully because of the chemo and not other factors.  Because the feeding tube bypasses the stomach, however, we do not have to worry about him throwing up any of the nourishment.  Yay.

Heart rate, respiratory rate, and body temp. up a little bit but I'm willing myself to stay positive.

There are certain nurses that I wish were here all the time...  I don't know how to explain it but some of them just make me feel that everything is going to be okay.

EXTUBATED!!!!

Willem had his ventilation tubes removed at 10:47am today.  Yes!  He is breathing awesomely on his own and... The doctor had a long list of wonderful things to say but he had me at "hello" and I just tuned out after that.  The bottom line is that Willem is doing fantastic.

A nasojejunal feeding tube was added so Willem could begin taking in sustenance (Peptamin Jr. made by Nestle) that actually ends up, after bypassing the stomach, in the parts that are supposed to have food.  Again, having some real food going through the normal GI cycle should improve Willem's liver, which, apart from the high(er) bilirubin numbers, is beginning to look a little better as well.

Some talk of transferring him out of ICU, possibly, early next week and moving him to the Hematology / Oncology floor to continue his recovery there.  I'm excited about this.

************************THANK YOUS**************************

Forgive me for being unformal and using first names but I do wish to acknowledge you, thank you, and not completely out you.  If that makes any sense.

Thank you cousin Theresa for the HUGE box of stuff for Willem, and I'm guessing all the children in the ICU (referring to the 20 pound bags of suckers and Jolly Ranchers).  So much great stuff in there -- that sketchy thing is PERFECT for writing!

Thank you Bob for the great phone conversation last night; my parents speak so highly of you so it was great to finally (meet) you.

Thank you Greg for organizing a spaghetti benefit dinner (that I can't be at) for Willem.

Thank you Dan for getting me off my backside and running about 9 days worth of stress and anxiety out of me -- that run kicked my you-know-what!  But I had a great time.  Thank you!

Thank you to the following people for their generous Paypal donation to Willem's recovery:
Tina
Patricia
Kathleen
Carmen
Carie

Thank you Thank you Thank you!!!!

Thank you Susie, Dan, Trevor, Jonah, Eli & Ty for the pumpkin bread.  Awesome!

Squeaky Tail

Willem received a fluffy toy from his grandmother, my mom, the other day and Erin was just looking at it and noticed that it didn't have any stuffing in it and asked, jokingly, if it was supposed to be road kill.  The nurse said that it was a chew toy and that he had seen them at Petsmart.  It has a squeaky tail.  My mother bought my son a raccoon chew toy with a squeaky tail!

We all had a good laugh at my mother's expense but it became less funny and more ingenious upon hearing her explanation:  It was soft; not bulky; and cute.  Having heard her say that I realized that I had witnessed the nurse use the chew toy as a soft support between Willem's bare shoulder and the hard plastic ventilator joints and tubes.

Thank you, mother, for the laughter and for just being you.  Love you.

Nearing A Possible Extubation

12:30pm
Arrived to find Willem with his eyes open again but watching A Land Before Time this time around. Got a big smile out of him eventually (he seemed more interested in the movie -- I don't know why, we have it at home).

No more talk of V.O.D., which is great, but bilirubin is up to 10 today so still issues with the liver.  Confidence is still high though.

Nurse stated that, during rounds today, there was talk of extubating tomorrow.  Willem will have to demonstrate that he can breath on his own, which he appears to be doing quite well, and do so while they continue to turn down the Breaths Per Minute (BPM) on the ventilator.  I mentioned to Willem that he has to show us that he can breath on his own and I saw three yellow lines on the ventilator monitor (which represent his own, unassisted, breaths) increase in height and rate.  Gave me a smile.

So, hopefully, off the ventilator and sedation tomorrow.

Willem is off another med, the insulin, now that his body is auto regulating.  Auto regulating is a good thing.

Getting more and more of our Willem back each day.