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!

This is a post about my hate for Seattle

So, when my parents were here, they kept asking Trevor and I what we wanted to do, where we want to eat, etc. My answer, "I hate this town. I hate the food, so I don't want to pick."
(It was) Not very nice of me, and definitely not productive, but quite telling of my attitude nowadays. My dad, half-jokingly, told me I hate so many things about this place, I should keep a log of all the things I hate so that I don't forget.
I'm not only going to do it, I'm going to try to illustrate it.
Sorry if Seattle is your favorite...
In no particular order:
I hate driving here. There are many reasons for this; city busses, pedestrians, PEDESTRIANS (apparently crosswalks are optional and these people didn't learn to look both ways before stepping out into the street),  bicycles (even in the freaking rain), rain, inept drivers (these are not unique to Seattle though), people park in the street, literally blocking the lane at night and on weekends, really skilled drivers who can cut you off when you have less than a car-length between you and the car in front of you, lack of posted speed limits, and people either drive 10 under or 20 over the speed limit, no in between. This is possibly because this city had the brilliant idea of variable speed limits, which can change at the drop of a pin, so the guy in front of you is following a 50 MPH speed limit, while you are adhering to a 30 or 60.

traffic. pretty sunset, but ugly gridlock.

Also (these are dislikes but not necessarily hates); motorcyclists are required to wear helmets (let those who ride decide!), the seat belt tickets here are way higher than at home (I wear mine anyway, but they even make you buckle up on the shuttle bus here), bicyclists are required to wear helmets (see my motorcycle aside), it's against the law to talk on your cellphone while driving (unless using handsfree-now, I have to divert my eyes much more to initiate using speakerphone for a call than holding my phone whilst driving), and there are homeless people begging at stoplights all the time. Real homeless...like, if you give them a half eaten apple, they'll wipe it off and eat the rest (I didn't do this, but I witnessed it). It's sad. And then there is a toll road that doesn't tell you how much it charges, because they change the cost depending on traffic, time of day, etc. You get a bill in the mail for it, so you don't even find out for weeks!

I'm not a sea-bird, I don't like fish.

yeah, I know Seattle's on the waterfront

I hate the food. I am not usually too picky, but I can't handle this place. Everything is seafood (wonder why, it's not like it's a giant port on the ocean...but still), or vegetarian, or vegan, or pescatarian. I am none of these things. I don't buy organic groceries, because pesticides are lesser than the evil of earwigs to me. I don't think anyone should pay more than $20 for a pizza, but there are pizza places here that are upwards of double that! No one knows what fry sauce is, and there is apparently, no such thing as finger steaks here either. I did not know these were regional foods, and I also thought that Idaho was in the same region anyway...apparently not.

Frosted Flakes, but whole wheat, not corn...because they're healthy

raw pork at the bottom of our food...we found it after we ate.

 We were spoiled in Boise. Our hospital fed nursing moms, because the moms were providing the food for the patient. That is not the case here. I got trays for 3 days, and I did not have any input as to what was brought. To be fair, it was so gross that I wouldn't eat here anyway, but the hassle of leaving the hospital everyday to eat is a hassle, because it means I have to leave Oakley.

Also, this hospital is sugar free...except in the Starbucks. They don't serve regular soda, and the vending machines have "healthier" choices. I prefer diet anyway, just thought it was weird. All the parents complain about the saccharin and phenylalanine on the Cancer floor, because they are all paranoid that their kid is going to end up with...wait, never-mind.

The weather is not great, but I actually do not hate it. I hate the way they drive in it and the way it affects the roads and sidewalks. The only real dissapointment I've had with Seattle weather is that we haven't seen snow yet, and our Christmas was drab because of it. The leaves all stink, because they're everywhere and they are soggy, and home is covered in snow, so I am a teeny bit jealous. However, I would HATE to drive with these folks on icy or snowy roads...so perhaps it is better that the weather has been so mild.

You have to pay for grocery bags. It's stupid, because I don't hate the earth, but I feel like I would be more inclined to use my re-usable shopping bags if it were my idea, and not the city's. It's only 5 or 10 cents a bag, and if I were in Oregon, I would say that it evens out because they don't have sales tax, but the sales tax here is 9 1/2%! They're getting us every which way we turn (toll road pun?)! The bags you receive are then these huge, bulky paper bags that you cannot easily stuff into your purse to re-use later, so you recycle them and pay 10 cents next time too.

I'm not trendy enough for this place

I'm going to go back to the homeless people here for a second, because there are also non-homeless hustlers that seem to be drawn to Trevor in a huge way. He has been stopped on more than one occasion by the SAME guys who want money from him. I love Trevor because he is so personable and talks to anyone. I HATE that Trevor is so personable that he talks to ANYONE, even if it means we are late or miss our bus. Every time that we go downtown, we get stopped (because Trevor cannot walk past someone who strikes up a conversation) and people beg for money. I have gotten to the point where I pull Trevor away while explaining our predicament, and letting them know we don't have money to give them, but I don't like stepping out of my comfort zone and talking to strangers. It's sad, because even if half of them are panhandling swindlers, some of them are very mentally ill, and the sketchy ones usually end up receiving more. Also, because we're so far north, it starts getting dark at 4 pm, so it always seems unsafe!

The rest of my distaste for this place is situational. It is not Seattle's fault for having a hospital that has been incapable of delivering the level of care that I expect, living in a first-world country. It is not Seattle's fault that most of the families sharing the communal living space at the Ronald McDonald house are self-serving and have complexes that lead them to believe that the world owes them something. Thievery is common at RMH because people think they deserve something for nothing, because of the hands they've been dealt. They also do not feel the need to clean up after themselves or their children, they have no qualms about going through our laundry (yeah, Trevor caught a family picking my clothes our of our laundry, and they didn't even apologize when he called them out on it!), and they seem to be irreverent to posted rules.

too many people

Seattle has many things to offer, and if I were on a vacation here, I'm sure I would enjoy it. Being here under my current circumstances, however, do not show the enjoyable side. It's too trendy to be hospitable, and I cannot wait to get back to my land of wide lanes, driveways, garages, and pedestrians who look both ways before crossing the road!

Here we go again

So, we had a crappy week.  Thursday, we were supposed to try extubating, but Oakley got a fever Wednesday night, and wasn't feeling too hot. We lowered the vent settings Thursday morning,  but he couldn't keep up, he desatted and had too much mucus to handle. The tests have come back, and it's all normal flora from the mouth, but is aggravated by his ETT (endo-tracheal tube). We had a care conference where we thought we'd be discussing logistics on getting to Boise, and the doctors had already decided amongst themselves (before we were invited to the conference) that the only way to continue was by giving Oakley a tracheostomy. I felt like they were giving up on trying to heal him, and were not giving him a fair shake on getting his tube out. They said that Oakley couldn't be transported until his airway was stable, so 2 weeks vent free or tracheostomy 7-10 days post-op.
I had to give Oakley another shot, so we extubated Oakley on Friday,  he got scoped on his upper airway, then had to be re-intubated within seconds. Ear Nose and Throat did the scope, trying to look and see if there was anything in his upper airway that was causing him to not be able to successfully extubate.
So, to make a long story short, Oakley gets a tracheostomy tomorrow morning. They will scope the rest of his airway to see if they can find a reason for his inability to be extubated,  and then they will carve a hole in his neck for semi-permanent airway support.
You may wonder why I am so upset at this...it takes much longer to wean off trach support compared to vent support. It bypasses his vocal chords, I haven't heard Oakley's laugh, cry, or coo since December 13th, and the tracheostomy will make that exponentially longer. I hate that we've missed out on so many normal milestones,  and the prospect of not hearing first words for months, even years is a lot to manage. We wanted a second opinion in person from Boise before going through with the trach...but in order to transfer him there safely,  his airway has to be secure. So here we are. More than anything, we want to be in Boise, so we are going against our own wishes for Oakley tomorrow morning. I am so excited to see his smile,  but I miss his voice so much already, I will surely be a wreck.
So we are doing everything in our power to come home as soon as possible.  We love and miss you all.

They let me hold him since I hadn't in weeks,  here we are with all our tubes. Because he has a difficult airway, there has to be two people in the room to transfer him from his bed to my arms, it's quite the ordeal. We won't get to hold him again until his stoma is healed enough to change out the tracheostomy tubing, which can take 5-7 days, so here are our last snuggles for another week.

We've worked so hard on getting that double chin!

And yesterday,  Oakley got a terrible rash with hives, turns out he's probably allergic to strawberries, and is off breastmilk until Wednesday to rule everything else out. Eventually, we will either test it again by having me eat a bunch of strawberries and then nursing him or expressing the milk to see if he gets the terrible rash, or talking with the Allergists to see if they think a stamp test would work on his immuno-suppressed body.

The last of the rash

Last pictures of his un-scathed neck

to be fair, it's not like he's scar-free...but his dialysis catheter scars aren't too bad.

Extubation

JANUARY 24TH:  Well, today was supposed to be the day. They were going to try and pull the breathing tube out, but yesterday he got a fever. They did a bunch of tests to check for infection, and found some gram positive cocci in his lungs (possibly caused by his tube) bacteria and started him on antibiotics.  They did an ERT this morning, and he failed because at 6 cm of water pressure oxygenation,  he had some slight desaturation and lokked like his work of breathing was excessive. I'm mentally exhausted and just want to hold my baby, hear his voice (even if it's a cry), and see his smile with his new teeth.

no more TPN!

January 21st: Yesterday was Oakley's first day without TPN! He has has it since he was born, but yesterday they weaned him off of it!  We are so excited to be making progress on his nutrition, especially because TPN can cause long-term liver problems...hooray Oakley!
His new formula probably won't last long though, because he has been puking when he gets it (but not when he gets breastmilk). The nutritionist isn't back until tomorrow though, so just to clarify the issue, instead of doing 4 hours of breastmilk and then 4 hours of formula, today we will do 8 hours of breastmilk and then 8 of formula.
We changed attending doctors today, so extubation scheduling should come up shortly they said they want to coordinate with ENT,  because they want to look at his upper airway when he is extubated.
Lastly, you may be wondering why there were no footprint pictures in the last post, and there is a reason. Oakley had a big blister on his big toe on his right foot, because the pulse ox, which measures how oxygenated the blood that is circulating is, caused a burn. It is supposed to be moved from site to site every few hours, but it got negleted. I'll do a make-up print when it heals up.


Sorry, I don't know why, but our posts weren't published, this was written 01/21

9 months old!

Hopefully, this will be our last month milestone at Seattle Children's. Our 100 day mark post-transplant is February 7th. We will probably still need hospital care, so we plan on doing a hospital to hospital transfer to Saint Luke's, but since Oakley is so old and big, we won't get to go back to our old friends at the NICU, we will be heading to PICU or the Pediatric floor.
We have had TONS of tests done the last week or so, and are finally getting some results in. Thursday, we had a sigmoidoscopy because Oakley continues to have heme positive stools, and they wanted to check to see if it was being caused by GVHD or if he had intolerance to his food ( they've been fortifying his breastmilk with protein packs and neosure to help give him more calories without giving him more fluid). The results came in this morning and he has super mild GVHD. It's so mild, in fact that they aren't going to treat it...they said it was a 1 on a scale from 1-10. His triglycerides, however, are so high that they can't keep giving him breastmilk for all of his feeds. They are now going to give him medium chain triglycerides more, and progestamil is the highest MCT oil-rich formula available. So, every other feed (4 hours) is breastmilk with progestamil and protein pack, and the alternating feed so straight progestamil.
They also did a CT scan on the 17th, and looked at his lungs. At first, they thought that he had some scar tissue, because what they have been calling atelectasis was still there, but then another radiologist looked at it, as well as his previous scans, and said that he thought it was still just mucous plugging up parts of his lungs. They also did a work of breathing study on him, where they dropped an esophageal balloon probe into his upper airway, and connected it to his ventilator to measure the force he was expelling with each inhale and exhale (in joules). They did this because everyone was assuming he had some sort of muscle weakness that was contributing to his difficulty extubating. They found that he is able to tolerate no pressure support with minimal amounts of exertion. This is AWESOME! It means that despite his scrawny appearance (he's huge compared to his starting weight, I don't know what they're talking about) he has the strength to support breathing, just like any other kid his age. So the plan from here is to give him a day or two more on high pressure supported ventilation, and talk extubation next week. (convenient timing with the holiday...pulmonology and respiratory therapy seemed to think we didn't even need to wait, but oh well. (I'm getting good at being apathetic)
His diabetes is apparently the smartest diabetes in Seattle, because these guys are incapable of figuring out how to get him stable. He had a new nurse on January 14th that didn't fully read his insulin management orders, and because he had previously been stable, was only checking blood sugars every 2 hours. He had a high blood sugar, and she had changed his insulin up, and then waited 2 hours to check him. She was supposed to wait no more than an hour after any changes to recheck his sugar. She actually told me she was going to wait 2 1/2 hours to check it, because she was going to draw blood at that time, and I told her she needed to check it right away. She waited til it was the 2 hour mark anyway, and then when she checked it, he had dropped to 59. We ended up on the over correction roller coaster that night, and Trevor and I spoke with the PICU team and with the patient advocacy care rep to make sure it was written in the orders correctly and with the nurse to ensure it wouldn't happen again (expecting reiteration at pass down). That night (15th) didn't go better. The same nurse checked his sugar at 8 pm and it was 219. His goal range is 100-200, and he's pretty sensitive to changes in his insulin and feeds. The nurse chose to increase is insulin by .01 (the nurses have the ability to titrate the drip without telling the doctors), and then didn't check his blood sugar for, you guessed it, two hours...at 10 pm his blood sugar was 34, and when she rechecked it, it had dropped to 21. Trevor and I were across the street watching tv, and never got a call. We were given a pager, and we've been paged for high blood pressures, which aren't big deals, yet didn't get a page over this. When I got back to the hospital, I was so mad, and I ended up writing up my own order for blood sugar checks. They are now super conservative and are keeping him high, because they don't want to risk it...he has been over 250 all day and was all last night.
Well, Oakley is on the growth charts for weight! He's between the 10 and 25th percentile for weight at 8.2 kg (18 lb 1.24 oz). He is 28 inches long, which puts him between the 25th and 50th percentile, and his head is 17 1/2 inches, which is right at the 25th percentile. His feet have grown to 4 1/2 inches long, and have evened out, so they are the same size now (whew!) and there isn't a growth chart for that , but they sure seem huge to me! It might be an optical illusion though, because they are so narrow compared to normal, chubby baby feet.

Teeth!

Oakley got his two top front teeth! One of them came in on December 29th and the other came in on January 9th. He was extubated Monday, but it didn't go well. It was a little rushed because he had pretty much gotten the tube out with his head thrashing, so it was a little spur of the moment. He wasn't awake for most of the time he was extubated, he ended up having to work too hard (against the BiPAP they had him on) and his blood gasses got worse, so they re-intubated him after only 4 or 5 hours.
It was the first time I've held Oakley since December 13th, and I don't know when I'll get to hold him again. I hate Mondays. It was so hard knowing that I might not get to hold him again for weeks, so I pretty much cried the whole time.
On the bright side, Oakley is the happiest intubated baby you could imagine. He plays, he tries to smile, and he lights up when Trevor and I come near enough for him to scratch us or pull our hair (or beard).
He got a bronchoscopy on Tuesday, and Trevor and I watched. They even gave us a commemorative DVD. It looked good, but they sent off some samples of fluid/mucous from his bronchial tubes. He got over 35 milliliters of fluid put in, and only about 6 sucked out. He's been pretty junky since, but still seems to have a fiery disposition. The only things that have come back from the scope are normal oral flora, but they put him on a low level antibiotic just to be safe.
Here's Oakley's attempt at smiling while he has the tube in. Enjoy.
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Some Pictures to look at!

So, we are still doing "exercises" to get Oakley's lungs and diaphragm ready for extubation. There's no word on when we'll be doing that. We've had some more setbacks lately, but have mostly been due to human error. Two days ago, the insulin that they hung for fluid change was most likely too concentrated. Less than an hour after they hung it, his blood sugar dropped over 100 points. They gave him a shot of sugar (D10), and rechecked in 30 minutes, and it was still dropping. They lowered his insulin, gave more D10 and rechecked, and it was still low, but had creeped up about 10 points. They gave him ANOTHER D10 bolus, and stopped his insulin, and he shot up to the high 100's. They got another syringe of insulin, restarted him, and he was fine. They told us that they have no way of testing the syringe of insulin to see if it was the proper concentration, but that's the only reason anyone (including hospital staff) can think of to explain his hectic evening.
Then last night, less than an hour after his fluid changes, his blood sugar dropped from 200 to 48 (in an hour). It was a nurse Oakley hadn't had before, and she couldn't even figure out what to look for, so as she was calling the Resident, I started looking at his lines to make sure they were intact, and found that his PN (parental nutrition) was clamped off. This means he was getting insulin for an hour, but no sugar (other than in his feeds). I told her, and she told the resident Oakley's blood sugar was low, and got orders to give him D10 and to lower his insulin. (We obviously unclamped the PN too) The nurse was so antsy about the error, that she rechecked about 10 minutes after his D10, and since it was still low, gave him more D10, as well as upping his feeds. Surprise, surprise, they over corrected and he went super high (high 200's to low 300's), so then, they upped his insulin. They didn't just go up a smidge, they doubled the rate it was going at, and even though I expressed my concern that it would again yo-yo, they assured me that as soon as his sugars started to go down into the mid 200's, they'd go back to the previous rate, he ended back down into the 40's.
Through all of this, Oakley is still pretty gunky, and having to get his tube suctioned out every 20-30 minutes, and is getting no rest whatsoever. He was apparently receiving Ativan with the PRN (per Registered Nurse dose) of Dilauded he was getting from his nurse-though I was not advised this. If I had known, I would have told this new nurse that Oakley has a paradoxical reaction to Ativan. That means, when he gets it, instead of calming him down, he goes CRAZY! He thrashes and arches and shakes his head no. But, why would you ask the mom, who is in the room for? What? The free TV? No, she definitely isn't there for you to ask questions or keep informed as to what's going on. Really I was there to pull information like I was pulling teeth. (I later find out that the nurse not only didn't tell the doc on, she didn't chart the reason for the initial low. She was probably nervous that she was going to get into trouble, and became tight-lipped in defense).
So, at 4 or 4:30, there are 8 people in the room, trying to calm Oakley down, because he's ripping out of his restraints, and slapping the trach tube against his mattress, pillows, anything he can.
This is when I find out he's been given 3 doses of Ativan (in all fairness, it shouldn't have been on his PRN approved list anymore) from the nurse, in conjunction with his Dilauded. I also found out that even though he had vomited 3 different times, she had continued to give him Reglan, and was unable to give him anything for nausea. So, what I'm saying is, last night/this morning was fun. Oh yeah, we HAD made progress in his feeds, he was up to 20 mL's per hour of breast milk. They shut off all feeds when the over-correction that caused his super high blood sugar hit the fan. We have to start from the bottom again.
They ended up re-taping his tube, pushing it down a couple of millimeters because it had loosened up a little, and giving him a paralytic muscle relaxer, because it was almost the last thing in the arsenal.
Well, they just hung the fluids for the night, and since they dropped his feeds down, they went up on the sugar in his PN, so his blood sugar is 287 now...couldn't see that coming. Your reward for reading my complaining? Pictures:

Christmas Eve, waiting for Santa!

SANTA!?!

Santa brought him a frog, and woke him up. I don't know if he's happy or not.

New Year's Eve, counting down!

At least we're ringing in the New Year together!

underwhelmed at New Year's Eve. He didn't even watch the fireworks on tv.

They both smell bad, but I love them anyway!

(required) New Year's kiss