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

(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