HOMECOMING

We have been home a little over a week now; and it feels like we've been going nonstop. We put his pump on, he responded as expected, and they let us come home, since they weren't doing much at the hospital that we couldn't do at home. We came home on Saturday, and Trevor and I had decided we didn't want home nursing care during the weekend, because we wanted to have family time without strangers in our home. It went well, we were busy, but able to handle it. Oakley gets meds 11 times a day, plus has an anti-nausea med as needed. On top of that, we have to check his blood sugar every two hours minimum (more if his continuous glucose sensor says he's going high or low), so even though Oakley sleeps through the night, I can't.
We had daytime nursing available, and it didn't work out well for our needs. I am and have always been a head-strong person, and my independence made working with our assigned nurse quite difficult. She had hearing problems, and although she had a cochlear implant, was unable to hear when Oakley's machines and pumps were going off. I have had the anticipation of bonding with Oakley pending for quite sometime, and having a stranger in the room, looming over you, is not conducive to that. She also had some personal issues (hygiene-related) that made her a poor fit for us. So she is no longer with our family. We are working on getting nights covered, so that I can sleep through the night, and things seem to be working better now.
Oakley turns 1 year old this Friday!!! We are so excited to have him at home for this milestone! He's still not allowed to be around children or groups of people, so we'll be celebrating as a family unit, no party. We are excited for the day when he will be able to meet everyone who has been praying for him, giving us moral and financial support, but for now, we are just excited to be able to share that we are finally getting to spend family time together.
Oakley has a G-tube that he is getting continuous feeds through, and he gets a formula called Pediatric Compleat, which is built more on real foods. It has chicken, green beans, carrots, etc. It's great, because he's gaining weight, despite the fact that he's been vomiting quite a bit. It's awful though, because it smells like dog puke...as in, it smells like vomited dog food. He gets car sick, so I've become adept at disassembling his car seat to throw in the wash, and we are working on getting him something to ease his nausea. He's pulled his trach out a few times, but we've put it back in with no problems. All in all, I'm loving being home with him. he seems happy, even if it is because our tv is bigger than the one in the hospital room. We're getting OT once a week, PT once a week, and working on getting night time nursing solidified through the week.
Thank you all so much for your prayers, and your continued support as Oakley continues fighting for normalcy.
I now want to direct your prayers toward another little boy who has IPEX, named Sonny D'Ambrosio. Sonny had his transplant a few weeks after Oakley, but is struggling with allergies to meds, and infections. The terrible thing about being in and out of hospitals is that nasty viruses and bacteria are everywhere (crazy that sick people go to hospitals to get well...) and having an immune-suppressed kid doesn't eliminate that. Oakley picked up CMV and Rotavirus during his time in the hospital, and Sonny has gotten a blood infection, Epstein Barr (mono) and has started feeling pretty crummy lately. He and his family live on the East Coast, and could use any extra prayers you could spare.

Birthday Suit, practicing for Friday!

Last day in the hospital!

Oakley's G-Tube

All of Oakley's gear loaded on his stroller to go home!

Looking out the window on the drive home!

sweet potatoes

11 months!

334 days. Oakley is 11 months old. He will be a whole year old in just 31 days. I can't believe how fast my baby is growing up, and yet this year seems to be full already. He's progressing so quickly now. He sits up for bits at a time, he babbles, he can sign mom, dad, all done, and he can wave. He is becoming so tactile, has to touch everything, and he's started trying to put everything in his mouth too. He loves tv, pictures, mirrors, and things he can make noise with.
As of this morning,  he is 30 inches long, has 7 teeth (he's working on number 8 really hard), has a 44 cm head circumference (17. 32 inches),  4 1/2 inch feet, and he's 8.5 kg (18 lbs, 11.8 oz).  So, for comparison,  he's between the 50th and 75th percentiles for length, between the 5th and 10th for weight, and below the 5th percentile for his head. We stopped putting his helmet on, because it was leaving marks that would last several hours, and it left his right eyelid puffy and red for days, but it seems to be filling out on it's own with positioning.

Sorry about the delay

So, we haven't gotten internet set up at our house yet, so I'm breaking down and posting this from my phone! So much has happened since our last post. Oakley had to get a helmet, because he favored one side and his head got lop-sided, so as of today, he has to wear a head shaping helmet 23 hours a day for the next 3-4 months!
He's gone back and forth on weight gain, he had a lot of diarrhea starting a few weeks ago, and started vomiting on non-Bactrim days (he is now off Bactrim and on a different med that doesn't make him pukey). They tested his poop to see if he was getting enough or too much of his pancreatic enzymes, and to check for some viruses, and his fecal elastase came back normal-so he no longer needs his enzymes (the bone marrow transplant is starting to make some awesome changes in our little boy)! We also found out that he got Rotavirus, which causes diarrhea and sometimes vomiting. His body seems to be doing ok fighting it on it's own right now, so he's not on steroids or antivirals for it. We pray that he continues to be able to fight it without them.
He has been having times of intolerance on his feeds, and since he's off his TPN (total parental nutrition), we really need him to start accepting his food better. They have him on a constant rate of 40-50 ml's per hour through his NG(nasalgastric)tube. When he's at 50, he starts to vomit sometimes, and since his main goal is to gain weight, we don't want him puking. When he does puke, it looks like he might be aspirating (inhaling) some of it. Long term, this is dangerous, because he will be at risk for pneumonia constantly. To better determine if he is aspirating, they mixed grape juice concentrate with his food. He's on Vivonex formula right now, to try to maintain his triglycerides and help him gain weight. So far, he's done very well, only a miniscule amount has been detected in his trach suctionings.
Trevor got a job at Carpet Barn, and it's slow, but he's doing pretty well there. He does seem to be a sickness magnet though, we've been ill off and on since we've been back.
We have tons to do if we're quarantined from Oakley though. Since February 8th, we've torn out all of our carpets and replaced them with vinyl plank flooring, we've scrubbed all the walls and repainted them, we put Killz down on our subfloor before putting down the planks, we replaced our water heater, had disaster cleanup dry 8" of water from our crawl space, cleared out our storage unit, and had a sewer main line break! We've kind of had our hands full. Luckily, we haven't had to do it alone! My cousins helped lay flooring, my grandparents brought their trailer and helped empty the storage unit, they painted and floored and cleaned, my grandpa and dad loaded up the water heater and installed it, then helped tear out carpet, my parents have been over many weekends helping to floor, patch drywall, pull toilets, unplug lines, and tons more! They even brought a bunch of students from Nampa Christian to help paint and clean up rocks! Trevor's cousins came down and fixed the broken pipe that caused the 8" of water, resecured vent ducts, and found and fixed another leaking pipe we didn't even know about! Our brothers helped tear out linoleum and carpet, and pull up wood floors and particle board that was stapled and glued to the subfloor. Rob and Jenn have helped take stuff to the dump, scrubbed walls, rip out carpet, and lend us their shop vac to finish the job.   
We are so happy to be home and surrounded by so many caring family members who've traded their weekends and days off for helping us out.
We should find out Oakley's chimerisms soon, and he'll be 11 months old in just a couple of days, so I promise I'll post again soon!

Oakley can shake it!

Don't actually have time for a real post. We've been going nonstop since we got back. Here are some pics. I'll update for reals soon!

100 days

We made it. We get to go back to Boise. It's nothing like we had pictured it, but it'll work for now.
A lot can happen in 100 days. 6 teeth, hair loss and hair growth, nearing death, and reaching for life. Oakley will be 300 days old in 6 more days. That means over a third of his life has been post-transplant.  It seems weird the way our time is moving.  It seems like I am missing out on his entire baby phase and that he's growing faster than a morning glory on one hand, and then it's as if time is standing still on the other. It's like we're still waiting for the moment that beung a family becomes reality. I still rarely feel like I'm a mom. Yes, I gave birth, and I fight for him every single day, but I'm scared that we missed out in too much of the bonding time that is so crucial to new moms. You know how brand new moms have those nights where they are exhausted, because the baby cries nonstop unless mom is holding them? I've never had one of those. What I have had is sleepless nights because Oakley has decided not to breathe, or because a nurse is visibly terrified of Oakley and his medical needs...but those don't seem like bonding moments to me. Warriors aren't maternal, even if they're fighting for you. That's more what I feel like I've become. I am a mercenary,  ready to strike at a moment's notice. I am a soldier, but my training didn't prepare me. I am a sniper, but I ended up in the thick of battle, not perched above with my sights on the enemy. It's hard to tell who the enemy is from this vantage. I feel blindsided by "allies" and those who were the most reluctant in delivering excellent care have turned into exceptional resources.
I hope so desperately that Boise is the haven I remember. I hope that my mental exhaustion hasn't utopianised it too much. I know we are not headed back to our beloved NICU that became our family and home; but I yearn for the familiarity of the hospital that saved our lives. I beg for the comfort of my region's nourishment and flavor. I need a glass of wine and some mindless gossip with a girlfriend to distract my brain from all the medical terminology that has become my lexicon.

When I wander too far from the paths my feet know
It seems my brain goes into overload
I long for the place where my body leads me home
Where memory drives my steps to my humble abode.
They say "home is where the heart is," and it rings a little true
But I challenge you to find solace when your GPS is all that guides you
Compass roses are exciting, but not very homey
And though I have my loved ones, I still feel so lonely
I say instead that home is where your mind can be at ease
Where your feet guide your body while your mind dreams above the trees

Swing Low

We're coming home!!! Oakley and I (Sam) fly to Boise on Thursday,  February 7th. Trevor will be toting the car and our stuff with help from his stepdad Rob, and his wife Jenn. We are sad to be leaving some of our extended family that we have gotten to see, and sad to leave IKEA,  but we are SO excited for everything else! Oakley is doing great with his trach,  and they will switch it out on Monday. When they do the swap,  I'll be allowed to hold him again! I didn't get to on my birthday,  but I will be making up for it!
Oakley cut his 5th tooth on my birthday,  and he's working on his 6th. He has had some more allergic reactions, so we hope the allergist can see him before we leave to help us figure out what's causing them. The nutritionist measured him yesterday,  and he is 72.5 cm tall now, he has grown 10 cm since we got to Seattle! We're still working on chubbing him up, but at least he's growing!

Tracheostomy, tracheotomy

Oakley had his tracheostomy done today (that's what the actual hole, or stoma, is called) so he now has a tracheotomy (the bypassing of his trachea with a tube in his throat).
He had some granuloma around where his intubation tube was rubbing at his voice box, but they decided it would be best to go ahead with the trach, and give it time to heal as much as possible on its own. He also had some stenosis at his voice box, basically the cartilage ring has some collapse,  making it oblong instead of round.
It's hard to say for sure what all this means, as it was all caused by being intubated for so long. It may mean that he will need the trach for several years, and that it will be very hard for him to come off ventilation support.  Oakley doesn't seem to mind the trach so far...he is just thrilled to have full range of motion with his tongue again!
They're working out the kinks with Boise, and the countdown has begun! 9 more days til home!