(Happy) New Years!

I, for one, am Happy, to be putting this year behind us! Let 2013 be better. Please. No more intubations, no more hospital stays for me, and let's get Oakley out as soon as possible, ok? Oakley is still intubated. He may be for several more days. He did an Extubation Readiness Trial yesterday, and didn't do amazingly. He did okay, but with his past of difficult extubations, even harder intubations, and his overall fragile state, they've decided to postpone pulling his tube and do some conditioning to work up to it. So, they will be changing the settings on his ventilator for a couple hours at a time, a few times a day, to what it would be like on CPAP or BI PAP which is what he'll be on post-extubation. He had a CT scan that came back saying he didn't have any disease lurking in his lungs to be causing his difficulty, but his lungs just don't have a whole lot of space to work in. He did have some fluid around his heart (which we found a couple weeks ago), but it isn't getting any worse and it isn't affecting heart function at this time. He had his MRI (to check for stroke/brain bleeds and to check for brain damage from the resuscitation) and it looked good, except for some extra axial fluid, which seems to not be constricting his brain, so they just plan to watch it.
Trevor and I have had more and more frustration over the little things here, and have looked into transferring hospitals. Unfortunately, there is a requirement that we stay here (or at a bone-marrow transplant center) for 100 days post-transplant. We would have to foot the bill for the move, and Oakley's not stable enough to move right now anyway, so we are just going to stick it out. We did get approval for medical transport on day 100, if Oakley is still in need of hospitalization-to go back to St. Luke's. We have already gotten our receiving doctor in touch with the insurance company to have the green light when February 7th comes.
We have received so much love and support from back home, that we get more and more homesick by the day. It doesn't help that we are so emotionally drained from dealing with the lack of continuity of care plans, but we miss home so much.
We have been so blessed by the people of the Treasure Valley this year. People we know and love, and strangers have reached out to us and given us diapers, gift cards, and words of encouragement. We couldn't ask for a better home to long for, and we can't wait to come back.
The Wallace Family is ringing in the New Year in a quiet hospital room in the Pediatric Intensive Care Unit at Seattle Children's Hospital, and we hope to never do this again. From now on, we want, nay, demand, Martinelli's sparkling cider in hand, and kazoos. It's just turned midnight in Idaho, and we want you all to know we wish nothing but health, happiness, and goodwill for your 2013, and we hope we get the same!

Love and Blessings,
Trevor, Samanatha, and Oakley

Auld Lang Syne my friend.

"For old times." Dear Samanatha of 2011, you have the biggest year of your life ahead of you. Pregnancy is no small feat, I know you're uncomfortable and really wish you could have a glass or two of wine. You're going to make it though. It's good for you to be learning sacrifice, because you're just getting started. This year, you'll feel unimaginable highs and lower lows than you thought you'd ever see, let alone experience. You're strong enough. You won't think you are, you'll feel weak and like you're drowning, but you can do it. Trevor is there with you. Lean on him. He's there for a reason. You married him because he can make you laugh in any circumstance, because you somehow ended up on the same wavelength of thought, and because he can challenge you intellectually. Oh yeah, the whole love thing too. But the smarts, that will come in handy this year. Also, Gangnam style isn't that cool, but you'll be too busy to even realize this fad is going on.
Remember how you wanted to be a doctor when you grew up, then you decided that going to school wasn't fun enough for the end result? Well, you'll be in hospitals more this year than if you had a doctorate. Yeah. You'll sleep in them, eat in them, shower in them, and forget you actually have a home other than the hospital's walls. You won't get paid though. You will be working for something much more important than a paycheck. You will be diligently questing for the health, well-being, and life of your son. You will have to be articulate in your questions and in explaining your hang-ups with things you disagree with. You will need to advocate for yourself when no one else will, and you will need to learn when to listen to others when you are wrong. That's a hard one for us, Sam, but it's an important one.
You will feel like people don't listen to you, and sometimes they aren't listening, but don't give up. You will gain an instinct that you didn't have before, you will need to use your determination in cahoots with this new-found knowledge of what is best for you and yours. Oakley will inherit his bull-headed determination from you. I'm sure this will be trouble down the road, but it's integral for 2012 that he have the piss and vinegar that runs through your veins, and your mother's before yours. I wish I could give you more of a heads up, but I can't. You'll be able to navigate it though. You are Meriwether Lewis, and Trevor can be William Clark.
I would wish you a Happy New Year, but I won't. Instead, I'll wish you godspeed to 2013 and strength, because you just need to hold your breath to get through this.
Love, Samantha of the end of 2012

Merry Christmas Eve

Well, there haven't been any HUGE changes here. Oakley has continued to pee, so he hasn't needed any more dialysis. They removed his peritoneal dialysis catheter this morning. They've started to lower the pressure support on his ventilator as well.
He's still going to be intubated for. Few weeks more, but he's on the upward slope of healing.
His arterial stick line went bad, so they're poking him again. We made them switch back to his heels after coming in to his thumbs and fingers covered in blood...they poked his fingers from the knuckle up, I guess they don't know how to ask endocrinology where it's ok to poke?
His weight has been pretty steady, he was 8.4 kg's this morning after his procedure, and was the same yesterday.
We have been so fortunate this holiday, we've been adoopted by a group of people in Boise and by the NICU folks at Saint Luke's. We have been so overwhelmed with the love and support we continue to experience from home!
My parents and their international students have been in town the last few days, and Trevor and I have had good breaks from the hospital. We went to a huge outlet mall, tried to get into Canada (visa problems stopped us from going all the way in), and we're going to cook up a big Christmas Eve dinner tonight! It's been hard to balance spending tiime with Oakley in the PICU (we're limited to 3 people in his room at a time, including Trevor and I) and spending time with my family while they're here. We're going to spend all day with Oakley tomorrow, we hope to get a picture of him with Santa Claus!
We'll post pictures of Oakley with all his gifts soon, for now he's just trying to sleep, heal, and grow. We love you all and we covet your prayers.
Love,
Samanatha, Trevor, and Oakley
PS, we wish we were home with you all, and can't wait to make up for it double next Christmas!

8 Months Old

Oakley turned 8 months old today! He looks like he's grown, but he's still the same height (66 cm long). His weight is misleading because of the excess fluid that's still on him from the event and the edema; but he's 8.7 kg (19 lbs 2.8 ounces) and he should be closer to 7.3 kg ( 16 lbs 6 ounces).
He didn't have dialysis today; he has done okay with just urinating, but they may have to try giving him a dose of LASIKS (a diuretic) to kind of prompt him to make his goal of being negative by 300 mL's for the day.
They were able to go down on his ventilator settings a little bit today, because the fluid loss has helped make room for his lungs to expand more fully. He did get a culture back that was positive for a bacteria (gram positive cocci) from his peritoneal fluid; but the antibiotics he's already on should fight that off just fine.
All in all, a pretty low-key day, which was so needed! My (Sam) parents are coming in tomorrow night, and it will be so nice to have some respite from our seclusion. They are coming up with the kids for the whole week!
Thanks for all your love and support, keep up the good thoughts and prayers, it seems  to be working!
Love,

the kid's feet are still huge 

The Wallaces

Quick update from my phone

So, Tuesday morning (4:12 am) they ended up starting dialysis on Oakley's new catheter (peritoneal dialysis) that was put in Monday night. They like to give those catheters 2 weeks to heal, but at the bare minimum 24-48 hours of healing time before they use them. The risk for infection was very very high, because the catheter could leak, and bacteria thrive on the dialysis fluid-as it's very sugary. His blood gas showed that Oakley's pH was far too acidic, and didn't think he'd make it 24 hours if they didn't start diuresing though. He had drained over 200 milliliters with the catheter just draining excess peritoneal fluid, but wasn't peeing, so it wasn't enough. Yesterday after morning rounds, Oakley's dialysis had only been draining off about 20-25 milliliters of fluid (outside of what they put it) per hour, and they were concerned that wasn't going to be enough. His pH was still acidic (normal is 7.35-7.45 and his was 7.12) so they wanted to put in a tunnelled catheter up through his right groin-femoral artery.
For those of you who don't know Oakley's vascular background, he has a blood clotting disorder called factor 5 leiden mutation and because of the lines he's had in his body, most of his big access veins and arteries are clotted and unusable. He has a left subclavian clot (so his left shoulder), left iliac vein (the returning blood that compliments his femoral artery) clot, and his right side is currently housing his double lumen Hickman line, whicj goes through his right jugular. This would use his last good spot for lines, and if it clotted off, we'd be screwed. Clotting is a very real danger right now, because his Lovenox (anti-coagulant) had been stopped since Wednesday because of a series of bloody noses, then the ressuscitation and finally, his surgery for putting in his peritoneal catheter.
Trevor and I were pretty hesitant about using his last good artery, and thought they were jumping the gun a little. It hadn't even been 12 hours on his peridialysis and they were unsatisfied and wanting to stick another line in. We were frustrated with a couple other things too (PICU had effectively cut the pulmonology team out of Oakley's consults because they deal primarily with long term issues and not acute injury, the head PICU doc was a jerk and pretty much told me to leave rounds), and ended up setting up a care conference to further discuss the issue.
Between rounds and the care conference, the wound care nurse dropped in and consulted on how to take care of Oakley's junk-see picture from last post- and was looking at his catheter, and urine started dribbling out! He peed 26 grams worth of urine, so they thought his catheter had gone bad. They pulled it, and got another 32, so tey replaced the catheter. He had released 106 grams of pee by the time we had left for the care conference. The doctors seemed less impressed than Trevor and I had been-even though this gave them 5 hours worth of his dialysis output as a freebie. It also meant his kidneys were working a little bit. We left the conference with the compromise to look at Oakley's clotted limbs for line access options and to look into his newfound ability to pee, even just a little. When we got back, a blood gas had been drawn with a pH of 7.21, so he had improved drastically! His CO2 was looking good and his breathing was stable on a lowered pressure.
After fighting for an hour, the fight was nullified for the time being, because he was stable enough to continue his peridialysis.
He was estimated to get about 500 mL's of fluid off in 24 hours of peridialysis, and his urine output was brely significant. At around 5, Oakley's abdomen was starting to turn a little red, and his PD catheter dressing was wet. The changed his dressing, and were watching him. At 8, the nephrologist stopped by, and looked him over. He had the nurse check the leaking fluid for it's dextrose content. It was over 1,000 and Oakley's blood sugar was at 140. The fluid was definately dialysis fluid leaking out. They had a decision to make now; continue diuresing with the leak, inviting infection, they could stop the dialysis and give the catheter time to heal, or they could stop the peridialysis and put in the line and start hemodialysis. They crunched the numbers, and Oakley had given them 585 milliliters of fluid output (thanks urine) in less than 20 hours. They decided to stop the dialysis and let the PD catheter heal for as long as his body can handle. So far, through the night, Oakley's PD catheter has drained over 300 mL's of fluid and his urine out put has been over 400! We haven't rounded or seen a doc yet, but I'm pretty excited! His weight dropped from 9.7 to 8.7-a whole kg! We never thought we'd be excited about weight loss for Oakley, but his starting weight was 7.3, so we're getting back to normalcy much quicker than even the doctors thought could happen!
It's a very real likelihood that he'll have an infection in his peritoneal cavity, his Neutrophils have been acting erratic (they were 5,000 on Saturday, 10,000 Sunday, 21,000 yesterday, and are 4,000 today) and his platelets and hematocrit have dropped, so internal bleeding is likely. We've got such a long road ahead of us, but your prayers are working!

Bah Humbug

So, it's been a while since we've posted. Mostly because there hasn't been any good news, and we don't like to post when it's all depressing stuff. Something happened that we feel everyone should be in the loop on though, so here's a quick recap.
Remember how Oakley was on high-flow oxygen and it didn't work? It made his nuts disappear in a swollen, looking like a water balloon about to burst scrotum. He was working against the oxygen so hard that it sent a bunch of fluid down through the channel where his testicles descended when he was in utero that hadn't fully healed up yet. So, pulmonology looked at him and said that high-flow wasn't a real option for him anymore, and that CPAP would probably be the same story. They started his LASIKS (which is a diuretic-to make him pee and get rid of any extra fluid hanging out that his body didn't need). Being on diuretics can cause your electrolytes to get funky, can cause issues with your kidneys, and the kidneys are responsible for a lot. His kidneys have been giving him high blood pressure for months now, and he  was on 3 or 4 different blood pressure reducing medications. He started to have need for them more and more often, and then his blood gas started to look bad. His CO2 in his blood was higher than they like, and this can be caused by a couple of things. It can be due to difficulty ridding your lungs of the CO2 when you breathe, and it can also be a response to your kidneys not shedding enough bicarb when you pee. Oakley's was assumed to be due to his work of breathing, so his doctors started scrambling, trying to figure out what to do.
His doctors had changed services, so the ones on right now were not present for the jewel bag blow up. They kept pushing for Oakley to go on to high flow, and we kept saying no. He worked against the pressure, and it ended up being worse for him than being on the non-pressurized nasal cannula. They kept pushing for us to go up to PICU, because they wanted to "maybe" intubate him, because that would help his blood gas. I'm all for helping his numbers, but he was physically looking fine. His work of breathing came and went, but he was happy, smiling, and didn't act like he was having much trouble with his breathing.
His oxygenation was looking good as far as his SPO2 monitoring (the oxygenation content of the blood getting to his extremeties), so the regular day to day BMT doctors said they were fine just waiting this all out, but every night when the hospitalists came on duty, they freaked out and wanted to send Oakley upstairs.
Let me clarify why we don't like PICU; only one parent can stay the night at a time. It's not cohesive to family living. It's not comfortable, and there's no semblance of privacy. We cannot eat in Oakley's room in PICU, and we never got to pick Oakley up and cuddle him while he was in PICU before. It sucks. Also, we just got our big, comfortable room back, and we put up our Christmas tree (which wouldn't be allowed in PICU). So we're partial to staying on the SCCA floor, because we get to kind of run the show in Oakley's room.
After 3 nights in a row of complete exhaustion from waking up and telling the hospitalists that Oakley was not going to the PICU because of their discomfort with his breathing (by the way, he was still saturated with oxygen, wasn't having big de-sats or anything), Trevor and I finally agreed to let them do a trial of highflow on the SCCA floor (normally they cannot do high flow on the SCCA floor, but if it's not an emergency or acute event, the rules can be bent) on Thursday. We bargained that they could try him on the high flow at 2 liters of oxygen per minute (he was at 1 on regular cannula and at 98-100% on his SPO2) and that if it didn't work, we could go back to nasal cannula or blow by (which is just a tube that we put by Oakley's face that blows humidified oxygen for him to breathe). Nothing happens quickly here, and even though this deal was hammered out at about 11 am, the high flow didn't get set up until about 5 pm. Pulmonology was notified, and though they disagreed with putting Oakley on high-flow, they were ok with a trial run. He started out at 40% oxygen running at 2 liters per minute. He dropped from 99-100% on his SPO2 down to the high 80's. They let us put the blow by next to him to give him some time to synchronize with the high-flow and try to give it time to work. We gave it a couple of hours, and then pulled the blow by. He was still in the high 80's, so RT (respiratory therapy) bumped his oxygen content up to 46% (not allowed to go that high on the SCCA floor, but oh well.) and told the hospitalist. The hospitalist was worried, came in, saw that he was working MUCH harder to breath with the high-flow, and bumped him up to 3 liters. Trevor and I were upset, told her that wasn't what we discussed with BMT, and we basically got told it was try this or go up to PICU. We shut up, because we really just wanted them to see that we weren't lying about high-flow not working for Oakley, so we figured we better let them see that high flow at any level wasn't going to work.
At 3 liters and 46% oxygen, Oakley was saturating in the low 90's, which is acceptable, but not preferred. He would cough and drop down into the 80's every now and then, and his blood gas had come back unchanged from the day before on nasal cannula and blow by, so they decided to put him up to 4 liters. By 3 am, Trevor and I were done. Oakley was working so much harder to breathe, and his stomach muscles were working all the way down past his naval. He was bowing from side to side with his breathing, and his nostrils were flaring. He was grunting. He was doing everything he could to show us that he was exhausted from just trying to breath. Trevor and I told the hospitalist that we wanted them to stop the high-flow and put him back on the nasal cannula. She told us she wasn't able to do that, but that she could send us up to the PICU. We told her no, we didn't want to go to the PICU, we wanted the high-flow off. She told us she wasn't comfortable doing that, and making that decision, so it would have to wait until the morning, when the BMT team got in. This has been so frustrating for Trevor and I; because the hospitalists are so incapable of doing anything except for writing orders to change the insulin, that we don't see the point in having them. They drive us nuts, because they don't read the chart, and they don't do what they're supposed to. We found out after the fact, that pulmonology (who had a freaking fellow on call) was not receiving the updates they were supposed to receive about them changing his high flow concentration or the increases in the pressures. UGH.
Anyway, we thought Oakley would be able to tough it out for a few more hours. We had just gone to bed, were barely starting to fall asleep, when RT came in to do therapy for Oakley. They give him Albuterol and then use a massager or their hand to pat him and break up anything in his lungs. Trevor was still awake as she started the Albuterol. Oakley started coughing (which causes him to desat) and the RT grabbed the bag to manually oxygenate him. He started puking, and instead of suctioning the vomit out, she continued bagging him, making him inhale his vomit into his lungs. She pushed the code blue button. The nurse came in and started doing chest compressions; at 5:38 he had no pulse of his own and wasn't breathing.
They did CPR, a million people rushed in, they couldn't get him intubated. They got an LMA in (which is a disc that holds the airway open so they can continue to get him oxygen, it's just not as invasive. He still wasn't breathing, so they continued bagging him and pushing epinephrine. He got compressions for a little over a half an hour, and he was finally intubated around 6:15. Oakley had technically died, and was resuscitated.

so swollen

With resuscitation, depending on how long the body goes with inadequate oxygenation, there can be lots of really bad side effects. Brain damage, organ failure or damage, broken ribs, death, all sorts of things you never want associated with your child.
Brain damage was immediately on the radar for Oakley; it can take up to 3 days for brain swelling to have it's full effect. He was responsive Friday morning, flailing his arms and legs with purpose (trying to rip out his tube), and tracking people with his eyes. They wanted him to be less sedated than usual for an intubation, so they could continue to monitor his mental status. His CO2 was over 100 on his blood gas. Friday night, he was starting to swell. His arms and legs were still responsive, but his eyes were barely able to open. His blood gas had dropped significantly, down to the low 50's on his CO2. Saturday morning; 24 hours post event, and he's still neurologically looking fine. His kidneys, however, aren't looking too hot. He's got sediment in his urine, and he's getting to be more and more fluid positive because he's not urinating enough. We can't give him his diuretics, because they're so bad for his kidneys, and they really want his blood pressure to be high enough to give his brain ample blood and avoid brain damage. His blood pressure had dropped tremendously with the cardiac arrest, and was just starting to be at the level that's normal for a baby (not normal for Oakley-still low for him). His blood gas started to rise a little (63 on his CO2) and they don't know why. We still have a roommate, which is weird since he's immuno-suppressed and supposed to be kept far from other children. Our roommate has 3 sisters that don't have leashes, and they're between the ages of 1 1/2 to 4. We asked for a separate room, but they're so full that they're turning other kids from other hospitals away. Also, it's RSV season, and if a single room opens up, they'll put a respiratory case in it. (whatever, they want us to stay away from kids, but they stick us in a room with another kid with siblings-walking disease factories...makes total sense.)
Sunday morning: swelling is awful. He even has pockets of fluid between his scalp and his skull. He is so fluid positive that not only are his hydroceles back in full force, but his penis is starting to follow suite. He had some desaturations, and his blood gas is still higher than it should be (63). Noone knows why, or what to do.
They did a wash in his lungs today, they pushed in 10 cc's of sterile saline, and pulled 6 cc's of junk out of his lung. It was a little bloody, but mostly looked like clear-ish fluid and then a hunk of what looked like snot. No word back on any of his other tests.
So, the good news: Oakley's alive. He wasn't for about half an hour Friday morning, but he's alive right now. He's not out of the woods for brain damage yet, they'll do an MRI toward the end of this week to look and see how everything is working. He looks like a stuffed sausage about to burst it's casing. He can't open his eyes,  his neck is even swollen so he has limited movement. His kidneys aren't looking so good. He has gained a full kilogram since Friday at midnight in fluid weight. His blood pressure had a pretty significant dip today, but is now back up in the therapeutic range. We don't know what to do right now. We don't want to get our hopes up and have them dashed. We thought we'd be outpatient by now, and now we don't even know if he'll be coherent on Christmas morning.

Not the Christmas package we were hoping for...bu dun psh!
The white tube exiting his penis is a catheter.

Now, more than ever, we need prayer. We haven't sacrificed our lives and our sanity for the last (almost) 8 months just to lose our son due to inhaling his own puke. We are angry at this hospital, at the fact that it's supposed to be the 8th best children's hospital in the country-yet we feel that half of the staff is inept. We are working with insurance to see if we would be able to move Oakley to Boise for his post-transplant care because we are just so frustrated with everything. We won't know for a while, but Oakley won't be stable enough for a transport for a few weeks anyway. It's hard to think of the peace, joy, and cheer that are usually such a big part of Christmas for me, since I feel so bitter about what the weekend has brought.
Sorry for having such a sobering blog post. I wish I could include pictures of Oakley on Santa's lap, but I don't think it's going to be happening this year.

Ode to Saint Luke's NICU

Prelude: This is meant to be funny, as well as acknowledge our disdain for having to leave the NICU and all of the great family and friends we made while there. If your name got missed, maybe you should have made it easier for us to rhyme it with something! We really do miss you all, and we love and appreciate you for everything you did for our family. You saved my (Sam) life as well as Oakley's, and we could never thank you enough!

Thank you for choosing Saint Luke's

Where emesis means Oakley pukes.

We wear yellow gowns

and masks over any frowns

because anything but smiles are flukes.

We thought it might have been "Bieber fever,"

and they didn't know what it was either.

What we did know for sure,

was that Oakley wasn't so pure

he liked it rectally when you used the thermo-meter.

Ann Margaret said it was a vagal response

And she said he was "Snarky" more than once.

He got bored after sleeping til noon,

So Kira let him watch some "Epic" cartoons.

Oakley misses his Montana Miranda,

This long without seeing her makes him a sad panda.

Mom tried to get Hannah to become my aunt

but forcing her to marry uncle Zech...she can't

Nichole, my late-night friend, thanks for the books,

and for when you didn't have me, all the check ins and late night looks!
Stanette, Deb, Michal-you were always a ball,
I'll miss you, Saint Luke's NICU, I will miss you all!

I love the quilts you sent for me to snuggle,

not having my CAP girlfriends to cuddle is a struggle.

I do have a window here though,

and a tree that I can watch grow.
It's pure magic, even though I'm a muggle!

Speaking of growing real tall,

Thanks to my Docs, I'm no longer small.
Van Looey, Meyers, and Chrichton,
I needed your help to get fightin'
Thank you for your help one and all!

And Tony, Sherri, Larisa, Maria
I really can't wait to see ya.
I'll get huge and fat,

So big in fact, that

you won't recognize me (cuz I won't have diarrhea!)

I know I didn't cover everyone I'll miss
But I hope that you get the jist...
I miss you all so much,
I hope to touch

on how much you filled my heart with bliss!

Everyday, I realize how awesome we had it in Boise. We miss your continuity of care, the fact that you do care, and how truly wonderful each person that makes the whole of Saint Luke's what it is. We are counting down the days until we get to come back home, until we can see you all again, and until we are again, part of Saint Luke's (with our follow ups-hopefully no more inpatient for a while!)
Thank you for choosing to adopt our family this Christmas, we are amazed at the love we continue to receive from you.
Love,
Trevor, Sam, and Oakley

Christmas Bells are ringing

he's getting so big!

Ding dong, ding dong; Oakley has a hydrocele. I don't think I should post a picture, but hopefully it suffices to say that a hydrocele is when fluid leaks from where the testes descend from the abdomen into the scrotum through the pathway that remains. It's supposed to heal itself, and it is supposed to be painless, but it doesn't look comfortable to me! The doctors believe it was instigated by his highflow oxygen forcing the fluid out of Oakley's guts and downward, so he's off his highflow and on a regular cannula with only 1 liter per minute flowing. He also has some general swelling (adema) that is making the situation look worse. I'm surprised I've made it this far into the blog without lots of joking about balls. I guess I am turning into a real-live grown up! They ran the chimerism tests on day +28 and we got the results yesterday.

biting his lip

Before the final ND attempt; getting a break from tubes

 Everything looks good except his T-cells. Oakley's T-cells are about 75/25 as far as being from his body versus the graft's. All the other cells were about 50/50; with his monocytes being 100% graft! This is awesome news, and they're just going to monitor the T-cells for now. If the T-cells don't follow suite, they might look into repeating the bone marrow transplant, but only if GVHD was becoming an issue or if he lost the ability to produce T-cells. Steps to get outpatient from here are: 1. Gain weight 2. Once weight has been gained, start wearing insulin pump and CGM 3. Respiratory stability: this one's not really as applicable now; I would anticipate that Oakley will be off all respiratory support within a week. 4. All medicine taken orally (other than insulin-obviously) or through ND tube 5. Stretch Goal: Off IV nutrition, and thriving on oral/ND feeds. So, we're getting pretty close.

Trevor and I have our diabetes training this week-which should be a breeze; our nutrition/carb counting class was today, and was supposed to take an hour, but it only lasted 5 minutes because we're so smart. For those of you who don't know; Trevor is type 1 diabetic and has been since he was 9. His younger brother is also diabetic, so is his paternal aunt, and his father was too. We actually are part of a diabetes camp family called Camp Hodia; and they do events all year long; so Oakley will be fortunate to be surrounded by adults who live with the disease and live life without letting diabetes restrict them. Our goal for discharge (and the BMT doctor's) is December 15th. I can't wait! Oakley's ND placement was awful, but is finally over. An ND tube is a feeding tube that goes from the nose to the duodenum (So goes through the stomach, into the top of the small intestine. It's held in the duodenum by the pyloric sphincter, and so there is less chance of the stuff (meds and food) going back up into the stomach and vomited. They wanted it this way so that he wouldn't have any risk of aspirating (inhaling the vomit into his lungs). It took 4 attempts. The first two, they just took the weighted tube with the guide wire and shoved it down 46 or more centimeters. Those didn't go into the duodenum, but just coiled in his stomach. We had an x-ray about 12 hours after each attempt.

doesn't he look so smart?!

The other two attempts were under fluoroscopy (which is a kind of x-ray, and they have contrast on hand to push through the tube to see which organ it goes into. The first one took over an hour, and the doc was getting visibly frustrated. I (Sam) had to help hold Oakley down and was bent over the entire time, getting bile dripped on my arm from the tube's guide wire going in and out. I was so frustrated, that I didn't want them to do a fourth attempt after this epic failure. Trevor volunteered to help hold Oakley down for the 4th attempt. It took an hour again, but this time was way less intense and yet, it wasn't flushing fluid through easily after placement.

The ND 

 We gave it some time, and it finally unkinked and it got to where it needed to be. We went to radiology 5 times last week, and have gone twice in the last 24 hours. I'm pretty sure we could have bought an x-ray machine with all of our visits; but hopefully, we won't need to be going as often any more. Keep us in your prayers to avoid any further hiccups, and to get discharged as soon as possible! We really don't want to spend Christmas in the hospital. There is one benefit to being here this time of year though; visitors bring presents! The Sea-gals (the cheerleaders for the Seahawks) brought build a bear teddy bears this week, and the glasses from Oakley's fit him just right! We couldn't resist letting Oakley dress up a little; we think he looks like a miniature Ralphy from Christmas Story!

It's hard work growing an immune system!

Thanks for your continued emotional, spiritual, and financial support! Love, The Wallaces

Late, but still Thankful

Well, he finally did it! Oakley officially engrafted on Friday, 11/23/2012. He actually got neutrophils the day after my last blog post, which was day 19 after transplant. His numbers went like this:
Day 19: ANC 39
Day 20; ANC 29
Day 21; ANC 231 WBC 2,100
Day 22; ANC 120
Day 23; ANC 857
Day 24; ANC 1,078
All we needed for official engraftment was two days in a row over an ANC of 500; so we didn't just barely scrape by, this kid has done it!
We were on the verge of having to artificially cause Oakley's body to prioritize making neutrophils, with GCSF, or Neupagen, but we didn't have to!
Since he now has an immune system, we are off the antibiotics! We are so close to being outpatient, I can taste it! The steps we need to complete now, are to fatten Oakley up, so that he is able to wear his CGM (Continuous Glucose Monitor) and his insulin pump. We also need to wean him down to taking his meds orally, instead of IV. We also need him to get his oxygen needs figured out. He has needed some extra help for the last few days, primarily while he sleeps. He's been breathing faster than he normally does, and they think he might have a virus of some kind. He has also had some blood in both his stool and his urine, but they aren't too worried about it for right now, because the most common culprits post-transplant aren't huge problems.
We have had a lot to be thankful for the last couple of days. Oakley's gaining weight pretty steadily. He had a big jump last night, he weighed 6.999 kg (15 lbs 6.8 oz) this morning, but yesterday came in at 6.742 kg (14 lb 13.8 oz), so I'm assuming they'll be giving him a diuretic to slough off any water weight. He's still not eating, so all of his calories are via his TPN; and the docs want to keep it that way until his breathing steadies, to make sure we avoid allowing him to aspirate any food.
We got a couple of fall pictures for Thanksgiving, and since I put the tree up, a couple of pictures of Oakley with his first Christmas tree.

Love you all!
Samanatha, Trevor, and Oakley

Monocytes

Sorry I haven't updated; I keep thinking, "He'll have neutrophils tomorrow, so I can post once we have some awesome news," and then it doesn't happen. The doctor was surprised that there aren't any neutrophils yet too. He has monocytes, which are building blocks or "grandparent" cells to neutrophils, but no big guys yet!
He actually had monocytes on day +10; they were obliterated on day +11 because of his final dose of methotrexate (chemo), and has had them again since day +13. He has had over 500 for over 3 days so far...and that's the biggest reason the doctor is surprised they haven't found any neutrophils.

neck fat is starting to come in

He keeps puking, but that seems to be getting a little better. His insulin needs have been bouncing around more than we thought they would, he's down to .145 units of insulin per kg per hour; his usual sweet spot was .18 and his all-time-high was .55, so we're pretty happy about this new found ability to not need so much insulin.
He's also gaining weight like a champ; but no thanks to me. He still hasn't decided he has an appetite, but his TPN seems to be doing the trick anyway. He weighs 6.7 kg (just under the 15 lb mark!) and is getting a double chin, but is still ripped and looks like a body builder.

He had some visitors the other day, they were dressed like pirates, and they came bearing gifts. He got a tubie friend; which is a stuffed animal with tubes, so that it doesn't seem so weird to be the only one with tubes and wires. Oakley got a monkey that is almost as big as he is, and his monkey has a port (which is what Oakley will probably end up with down the road...it's a line that can be removed when not in use, like a thimble-shaped funnel under the skin, with an iv hanging out of it, then you can remove the iv and put one back in pretty easily as well as give injections with much more ease). I wish Oakley could have a port sooner, because with a port, you can be submerged in water, and Oakley still hasn't had a full-immersion tub bath. We have so many firsts still ahead of us, it seems weird that he probably won't fit in the sink by the time we go home to try and give him a sink bath (they make some of the best pictures!), and he still hasn't ever met a dog or touched grass. I am excited for our future, even though I'm a little saddened that so many of the baby stuff will never happen.

He's such a "hoser"

We're still in a tiny room, but it looks like we'll be here for a while. There are several other kiddos on the wing here who got their transplant the same week that Oakley did. We're doing so well, we hope to be outpatient come mid-December. One of Oakley's doctors said that was a reasonable goal. We'll have to be here in Seattle for 100 days post transplant for outpatient care, which is a bummer. I was really hoping we could celebrate my birthday at our house in Boise as a family. February 7th is the earliest we would be able to head home. We'll still be in isolation from large groups and we'll still be limited on contact and be avoiding anyone with a cold, but it will be nice to be in a familiar place, with friends and family nearby.

I had to give Oakley a temporary tattoo to adorn his freshly shaven head; and found this Idaho 4H stick-on from the fair a few years ago, I thought it was pretty funny, the doctors had to make sure they noted it wasn't a fungus when it started to wear off!
We're bummed to be spending Thanksgiving away from everybody; and sorry we're going to miss your birthday Dad (Grandpapasan Davis); but we'll try to make up for it double next year! We have so much to be thankful for, and with kids all around us doing far worse than Oakley, we try to remind ourselves that we could be so much worse for wear. We hope to be posting about Oakley having neutrophils soon!
Love,
Trevor, Samanatha, and Oakley

Hair Schmair, I've got a chemo-hawk now!

The beginning of the hair loss

Che-mo-hawk

So, a few nights ago, Oakley's hair started to fall out. We thought we'd just let it take it's natural course and that way, if it all fell out, it would; and if some of it decided to stick around, we'd let it. That lasted about 2 days. It's like having all the terrible things about having a dog, with none of the positives. In addition, it was getting stuck in his slobber, his eyes, and neck creases. Today, I stopped tolerating it, and took a pair of medical scissors to it. As I was hacking away, Trevor told me to just shave something funny into it. We decided he needed a mo-hawk; but not just any mo-hawk, a chemo-hawk. It's got some sweet steps in it, from the scissors, but it's funny and functional at the same time.
He's finished all but one day of chemo. He had his pre-transplant chemo; which was 5 days of Fluderabine, Treasulfan, and ATG (rabbit ATG, if it matters to you); then his day of rest, his 2nd day of rest (Thanks to Hurricane Sandy) and then his transplant. He has also gotten Methotrexate on days 1, 3, 5, 7, and will get it for the last time on day 11. After three days of being done with all the poison; they said we can start to hope for engraftment and we might get to see neutrophils (white blood cells that are the primary immune workers). We are really hoping for some neutrophils as soon as possible; because then we won't have to worry about him being so susceptible to disease without any defense. At this point, a stinking cold could kill him (it wouldn't-they'd send us up to PICU and we'd be on anti-virals, antibiotics, and anti-fungals until he was cleared) and we're isolated from the world.

With our recent agoraphobia  I've taken my knitting back up. So far, I've knit scarves for Trevor, myself, and Oakley; as well as two hats for Oakley, and a stuffed hedgehog and a stuffed owl. There's a group of older ladies that come to the ward once a week for knitting circle; and they bring donated yarns and knitting needles and they teach people how to knit. I've had a blast with them, and it's a good way to meet some of the other parents without having to feel awkward.

I can't remember if I've written since we landed back down on the SCCA floor-and I'm too lazy to look- so if I didn't mention it; we're back downstairs and out of the PICU. We're in a very small room, but we're happy to be able to function more as a family. We get to snuggle together on our couch, we get to take over a lot more of the care of Oakley, and we get to use the bathroom in the room. I like being down here, even if it is more work and less sleep. In PICU, we could have both left for the night, or for a date, but down here, we have to have someone to watch Oakley; and since he still has no white blood cell counts, it has to be the nurse or a CNA willing to sit for us. We've only left simultaneously one time, this morning, for a doctor's appointment that I had.

my first bloody nose!

I've had chest pains for nearly three years now, and I was referred to the Center for Pain Relief here in Seattle, and they injected steroids into the cartilage that connects my ribs to my sternum today, under ultrasound. They actually found something, but told me my regular doctor would have to follow up on it to tell me what the irregularity was. I'm assuming it's not life-threatening or really serious, since I'm not admitted to the hospital.
Back to Oakley, he's been doing awesome on his road to recovery. His mucositis is very minimal; but he has started puking a lot more often. They've started a schedule of anti-emetics for him, so he's going to be on Reglan and Benadryl and Ativan around the clock to try to save him from puking so much. When he does puke, it comes out his nose and his mouth, and we have these neat little suckers that we can suction out any remainder vomit or any boogers with. Tonight, as I was suctioning his nose out, Oakley decided to help, and VIOLA! He got his first bloody nose! Sorry for the disgusting picture, but I thought it deserved a photo op.

The glue from the EEG didn't help the hair loss situation

No Mom, EEG's are so fun, really...

Oakley's been having more...tremors I suppose you could call them. His legs start to shake, and his whole body stiffens up, and he basically looks kind of like a fish flopping on the ground. He had an EEG to make sure they weren't seizures; and they're not. They're going to test some of his levels to see if they're caused by his malabsorption over his life (B12, zinc, copper). If not, they want to do a lumbar puncture and some MRI tests to look for other things that could be causing them. We obviously hope it's something a vitamin can fix, so the poor kid doesn't have to go through even more tests.
I want to thank you for your support; I know there have been so many out there who've helped us out, and we are so appreciative of the love we are receiving from everyone. It's always nice to feel support when you're far from home.
We're counting down the days until Oakley has some neutrophils-it's the first sign of engraftment of the bone marrow- and we're anxious to be able to share the news when it happens! Thanks again for your prayers, love, and support!
Love,
Trevor, Samanatha, and Oakley

With his hedgehog and his owl

His owl and his matching hat