Sam's hospital escapades

Hey, so in the last post, I referenced my health, and realized many may not be in the loop as to what's been going on with me through the last few months, since Oakley's  been a higher focus with all of his health issues.

First off, delivery went well from my standpoint, I didn't need anything afterward for the pain, but took Ibuprofen for the inflammation. This where I am going to give a little bit of a pain history backstory. In January of 2010, I went to the doctor thinking I had pneumonia. It had hurt to breathe and I had been sick with a bit of a cold for a couple of weeks. When I went in, they couldn't find anything on the x-ray, and put me on antibiotics and pain meds. After a week, the pain was worse, I went back in, and they upped my antibiotics to a z-pack, and gave me something for the pain. Another 2 weeks of pain, and I was referred to a pain specialist. From there, I was treated for everything from a torn muscle in my chest, to a possible rheumatological condition (Ehler's Danlos syndrome), to referred pain from a car accident from when I was 15. I had an MRI, a CT scan, several blood tests, an EKG, a few X-rays, a musculo-skeletal ultrasound, but they found nothing concrete. My doctor finally decided that I had a connective tissue disorder and costal-chondritis, or tears in the cartilage that connects my ribs to my sternum, and doesn't heal in a normal amount of time due to lack of blood flow to the cartilage joints. Because of this, I have had pain managment issues the entire time. When I found out I was pregnant, I was on a cocktail of Naprocen, Nucynta, and an opiod pain patch called Butrans. I dropped all of them on the same day (which I later learned I wasn't supposed to do) and went through about 4 days of withdrawls. I was shaking, cold, sweating, and vomiting. It was the worst thing I'd ever been through, until I had to deal with the pain without meds.

I gave up on meds through my entire pregnancy except for 5 or 10 Norco total, which my OB prescribed in my 3rd trimester. Instead, for therapy, my pain specialist did injections of sugar water into my costo-sternal joints every other week, to elicite an inflammatory response, in hopes that my body would prioritize the area and heal itself. I was in constant pain, always at a 5 or 6 on the pain scale, and often would go higher at night. Because of this, I was on a leave of absence from my job at T-Mobile from July to January. In January, I came back on a part-time basis, because my disability insurance had denied my claim, and we were unable to afford our bills on Trevor's checks alone. It didn't last long. I was unable to even put in the 30 hours a week that I had requested to come back to, and by the first week of February, was back on leave.

After having Oakley, I was going to be able to go back on a pain managment regimen that was supposed to allow me to go back to working full time, and I was anxious to get back to work and feeling like a contributing member of society. After having Oakley, I was a little unsure of how the return to work would go. I contacted my HR department after he was born, to see if I could come back to work before my maternity leave was over, and use the leave after Oakley got to come home from the hospital (thinking he would only be there a month or two). They told  me that wasn't an option, so I took my full maternity leave...I was scheduled to go back to work on June 2nd.

On May 31st, Trevor and I were able to stay in one of the rooming in rooms at the NICU. I was in some pain, and since it was after 10 pm, we went downstairs to the ER to see what was causing it. It was my regular costo-chondritis, but also in my backside of my ribs. The doc examined me, and told me I had a muscle spasm, and prescribed me Naproxen. They didn't have any on hand, so they were going to just send it up to our rooming in room when it came in. Walking back to the NICU, I knew it was worse than just a muscle spasm. I was freaking out, because I could barely inhale without my body jerking and causing me a huge amount of pain. We tried to go to sleep, but I couldn't lay down. Everytime I went to lay down, I couldn't breathe, and I started to panic. I went into a panic attack, and couldn't breathe, felt hot, and couldn't talk because I was too overwhelmed. About an hour after they sent the Naproxen up, I was so out of it that Trevor decided to call the NICU nurses to take me down to the ER. Once there, they shot me full of dilaudid so that I could calm down and talk. When I told them what was going on, they sent me for a chest x-ray and did an EKG. A nurse came in to the room after a while and started hanging antibiotics. I asked her why, and she told me that I had a UTI. I asked her if they found that from the bloodwork they had done, since I hadn't peed in a cup and she stopped and went to double check. When she came back, she told me that the UTI was next door, and that I actually had pneumonia! I told her I'd rather have the UTI, but they sent me home with the diagnosis of bronchial-pneumonia in my left lung, along with a week's prescription of antibiotics and an order to stay out of the NICU for 48 hours. They stuck a nebulizer on me for a dose of break-up-the-crap-in-your-lungs. I was pretty confused about having pneumonia, since I hadn't had a cold or cough  or anything for over 6 months. I finished the antibiotics, and still felt awful, so I went to a doc in the box. I insisted that they do another x-ray, so that I could see this pneumonia for myself. The pneumonia was now in both lungs, not just the left one. He sent me home with another prescription, this time for a different anti-biotic, and a refill in case I still didn't feel up to par after the first course.

By now, we had gotten Oakley's diagnosis, and were planning to come to Seattle Children's, we just didn't know when. With my medical issues, this extended my leave of absence through July. I never ended up coughing, other than after the nebulizer, and still never got a cold. I had two days left on my refilled antibiotic, and was hurting more and more. I had been sleeping upright on the couch for a few nights, and couldn't even get comfortable that way. That night, I had almost passed out, and Oakley's nurse, Nichole, had told me to go down to the ER. I had Trevor come pick me up and take me home, but Trevor took me to the Emergency room again, this time at the hospital that was in Meridian (closer to our house than the hospital Oakley was staying in). They rushed me in (one of the benefits of pain in your chest is that you don't have to wait, you get moved to the front of triage) and did another EKG, and then an x-ray. Both came back normal; no pneumonia this time. The doctor was still concerned about my pain, so he ordered a CT scan. I hadn't gotten anything for the pain up to this point, they were able to do everything with  me being upright. I told them I couldn't lay down, and they tried anyway. I freaked out, was screaming and crying, so they sedated me and did the CT. The doctor came back and told us he was admitting me. I asked what for, and he told me that I had 3 blood clots in my lungs. One smallish one in each lung, and then a large one in my left lung that had actually infarcted, and caused some tissue death. We asked to be transferred to the downtown location, to be closer to Oakley, and I got to go on my first ambulance ride ever. They drew a bunch of bloodwork on me once I was admitted, and found out that I had anti-phospholipid antibodies as well as systemic lupus erythrombosis (which has been debated between docs as to if this is lupus, or just the blood clotting disorder that people with lupus have). I was admitted for 5 days, sentenced to anti-coagulation therapy for life, and was told that I should have never been able to carry a child to term, that I should never get pregnant again, and that Oakley's infarcted placenta was very likely caused by my blood clotting disorder.
Trevor has Factor 5 Leiden mutation, which is a blood clotting disorder, that was passed on to Oakley, and so now, all 3 of us have blood clotting disorders (Oakley has a blood clot in his left shoulder, Trevor had a blood clot in the thalamus region of his brain when he was 14, so we might as well be the blood clot gang). Trevor and I would now be unable to be bone marrow donors to Oakley, so the match would have to be from an unrelated donor. They made me watch a few movies that starred people in their "Golden Years" living on Coumadin (the anti-coagulation drug I'm on). One gentleman gave up riding his bike, and has taken up bridge! Yeah, right. So, they told me I'm not supposed to do anything that could possibly cause bruising. No skiing, riding bicycles, horse-back riding, softball, volleyball, floating the river, sleeping on the ground, wearing high heels, walking up or down stairs, shutting drawers, walking in rooms with doorknobs...yeah, like that is going to work.
Nonetheless, I'm supposed to be super careful, because if I cut myself, I might not stop bleeding. They also recommend I wear a medical alert bracelet, you know, so I can look cool and people will know I'm as fragile as a 70 year old man on blood thinners.
This stint warranted another leave of absence extension, I got released from the hospital on July 2nd. They got me worried about every little thing, and told me if anything seemed off, or if I had any symptoms of anything, that I needed to come in to the ER. My wrist swelled up and my ankle did too, I came in to the ER, they told me I probably have blood clots there, but since I'm already on blood thinners, there's nothing more they could do. After that, I figured that anything that happened was going to be attributed to my PEs (Pulmonary Embolism or Emboli for plural) so there was no point in going in unless I was bleeding out.


an awful picture of me, but I was in so much pain, I didn't even care



I'm on telemonitors, but visiting
Oakley while we're both patients

In August, I started having more and more pain, which I attributed to the PEs. It was in the same area, and I had tons of pain killers that were prescribed to help with the pain from the PEs. I ended up getting a high fever, and throwing up from the pain one night. I called my doctor's office for an emergency appointment, and when I went in, my fever was gone, I was cold, and my fingers and toes were turning blue. She made me pee in a cup, and told me that I had a UTI (I'll take it over pneumonia, even if it never did hurt to pee!) and prescribed more antibiotics. She told me if the pain got worse, if my fever returned, or if I started vomiting again, to go into the ER though. We went across the street to visit Oakley, and an hour into our visit, all three started happening. I went downstairs to the ER, and after my usual EKG and chest x-ray, they admitted me, saying they weren't sure what was necessarily going on, but with my history, they wanted me in the hospital until they found out. The next morning, I got a CT scan with contrast, and we found out I had pylonephritis-basically a kidney infection- and that I was septic. They also found another blood clot, this time in my right iliac vein in my pelvis. They kept me on antibiotics and oxygen (my O2 sats were pretty low) until I was over my fever and breathing through the night without dropping my saturation levels. I got discharged with an order to see my doctor before I went to Seattle, and to make sure I found a doctor in Seattle as soon as possible, so they could get all of my medical records over.

hives from Vanc, breakout from
paper tape

When I went in to the doctor, I ended up seeing a different provider in the office, and she told me that my doctor thought my SLE blood test was a false positive. They said that I would have to wait 6 months and retest, but that it didn't matter. Well, it matters to me. If all these tests are false positives, then we have no idea why I'm clotting (by the way, when I went in to my doc in Seattle, she told me the lump in my vein in my wrist was another blood clot, which I shouldn't be able to get after being on blood thinners-I have developed it in the last month). I would really like to know for sure if Oakley is our last baby, or if I'll get the chance to have a baby in the future (we would have to do in-vitro to avoid passing the defective IPEX gene on) and actually get that bonding experience that Oakley and I missed out on, since I didn't even get to hold him for the first 3 days of his life.

hives from Vanc

So for now, I'm just managing my PT/INR levels (my levels for coagulation time and checking my Coumadin level) and avoiding any bruising or bleeding I've developed allergies to paper tape, Morphine, Vancomycin, and Zithromax in the 10 days I've spent in the hospital.  Poor Trevor has had to deal with his family being in the hospital in different rooms a couple of times now, and I'm trying to take good enough care of myself that he doesn't have to visit two different hospitals!

Sunday special

Haven't posted anything lately, because it's been pretty boring here! Boring's good compared to the hubbub of ICU and apnea spells though. We've been pretty lucky, we had my cousin, Crystal come and stay with Oakley last Monday, and her sister, Melissa, who babysat him on Thursday. It's been nice to have a few hours away from the hospital together. Last night, I went to Megan's going away to college BBQ on the South side of Seattle, and it was great to see so many familiar faces! Thanks for inviting me Wood's kids!

Oakley's goals for the week have been to gain weight, keep steady blood sugars, and not to surprise us.

So far, he's been ok at gaining, but not great. This morning, he was 5.61 kg (which is 12 lbs 5.8 ounces).



Some-bunny's a happy camper



Grandma Mona got me these sweet kicks



He's been pretty steady with his blood sugars, today has had more changes, but the last 2 days have been almost completely uneventful, with no insulin drip changes at all! He's been eating ok, sleeping ok, and we gave him his Mylecon (gas drops, I actually have no idea how to spell them) back, because he'd been crankier than usual, and he picked right up. His CBC (complete blood count) this morning showed that he had 1500 neutrophils, his platelets and hematacrit were ok (doesn't need a transfusion or GCSF/Neupagen) and that he's doing all he can to get on the track for his transplant. He's outgrown most of his socks, so I got to go shopping at Ross the other night and got some more sweet ones...he's in 12-18 month sized socks, but still has a couple of newborn and 0-3 month sized clothes that fit!



I have had several doctor appointments the last couple of weeks to watch my blood clots (I don't know if I've mentioned any of my own health issues that are going on, I'll look back and add a post if not) and my coagulation levels, and have been going through the ringer trying to figure out shuttles and buses to avoid paying out the ears for parking. Thursday, I ended up walking a couple of miles after being frustrated at getting off at the wrong stop. It's been great weather here though, I think it's only rained twice, so I enjoyed the sunshine while I could! I'm dreading the weather change that is inevitable up here. Someone told me that it gets dark at 4 o'clock in the afternoon in the winter time...I am going to have to figure out some way to keep sane and not get deprived of Vitamin D.

We are expecting Trevor's mom and her boyfriend to be coming up this weekend, so it will be nice to have some more time to ourselves to get to explore the city, and find some places that will be good for when Oakley's outpatient and we get to take him out, but have to limit his exposure to people and germs.

I found some pictures that I had taken of the little guy two weeks ago, and thought I'd share them. I've been going through tons of pics for a slideshow that I'm putting together for the thing going on at TGI Fridays coming up in October!

Wednesday, 09/19

5 month footprints

It's Oakley's 5 month mile marker! I can't believe it's been 5 months already. I also think back these 5 months, and think about what normal would have been vs what Oakley's normal is. He's never felt grass, never seen or pet a dog, he's never had a bath in the tub, or the sink. He's always been in a hospital, always has been connected to pumps, machines, and monitors. However, he has always been cared for by some of the most reliable people. He has been loved by so many, and has been spoiled with every cry. We've never had to buy diapers, or wipes. We have had the opportunity to sleep through the night nearly every night since his birth. We haven't had to call the pediatrician, frantic, in the middle of the night to see if a fever warrants an ER visit, or if we're just paranoid new parents.

Happy lil 5 month old

We haven't had to hold him down while he gets his immunizations (yet), and we haven't had to clean poop up off the walls or floors. I am blessed for the amount of support, and loving professionals who are paid to be there for our baby, yet take a personal interest in the well being of Trevor and me. I feel like St Luke's has now saved Oakley's life, my life, and Trevor's life at least once or twice each. We are so happy to be living in the time we are, the technology that will aid Oakley in managing his diabetes, Trevor too. The imaging that is so fast to let us know if something's wrong or if it's a false alarm. Although it sometimes seems we're being tested more than Job, we are also able to see the blessings that have been provided for us to perservere through the storm.

I would like to take a moment to ask for prayer for another little boy with IPEX. His name is Sonny, and I recently found his mom, Nichole, on the internet. We've been able to talk and comiserate and exchange stories and hopes for our little guys. Sonny has some different aspects of the IPEX syndrome, he has been afflicted more with the enteropathy (pathology or disease of the intestine). He is affected with malabsorption and had a spell where he had some blood in his stool. They were fortunate to be able to have him at home until he was to undergo chemo conditioning, as long as he was able to continue to grow and be healthy. He is now at Children's in Massachussetts, where they're trying to get him healthy enough to undergo his transplant, which is slated for October.

So, our little stint up in ICU caused a little hiccup in Oakley's progress. He was supposed to have his transplant moved to October 4th, and now they want to review his case at the beginning of October, and decide from there on when they want to start chemo and do the transplant. We are looking at the end of October if we're lucky.

Mommy's, Oakley's and Daddy's
tootsies!

As far as his current progress, he weighs 5.425 kg (which is about 11 lbs 15.3 ounces) and is 26 3/4 inches tall. So he's between 75 and 90 percentiles for height, below the 5th percentile for weight, and between 10th and 25th percentile for his head circumference (he's at 42 cm or 16 1/2 inches). I wish I was tall and thin! It's not so great on a baby though. His feet are huge, there's no chart for foot length, but I'm sure he'd be off the charts! His feet are now 4 inches long...for perspective, mine are 9 inches long, and Trevor's are 12 1/2 inches!

We've been very lucky to have visitors and family coming and relieving us from hospital duty here and there, we appreciate it so much!
Thanks to everyone who's been helping maintain our sanity, and thank you for your thoughts and prayers, we know we are not going through this alone!
Love,
Trevor, Sam, and Oakley!

Monday, Tuesday...more good news day!

Monday: I slept here on my own next to Oakley, Trevor went to our Ronald McDonald room to sleep on a big bed. I woke up for rounds; Oakley slept through the night-which I didn't expect, since he still wasn't allowed to eat. At rounds, I asked when I would be allowed to feed him, and the doctor said that he wanted to give it another 24 hours (even though he had met the requirements that the doc had set the day before). Neurology came to visit to give us their opinion on the seizures and apnea spells. They told us they weren't sure that the apnea spells were caused by the sub-clinical seizures that showed up on the EEG. They said that he may have had these seizures for a long time, and that they were an incidental finding. They wanted to have another EEG to see if the sub-clinical seizures were still occurring, now that he's been on Keppra for a week.
Still no apnea spells since coming off the CPAP and the nasal cannula, so he's doing great in that department. His blood sugars had an eventful night though. He had been pretty stable for the day, and then, out of nowhere, his blood sugar jumped from 184 to 555. We actually tested three times, the hospital meter said 564, 566, and Trevor's meter read the 555. That's super high, and dangerous. When your blood sugar gets too high, you start spilling ketones, or going into DKA (diabetic keto-acidosis), which means your body starts to break down tissues because your body is so acidic. We started checking his lines, and couldn't find anything that was clamped or leaking. The resident doctor came in and after confirming we hadn't been feeding him maple syrup, wrote an order for a blood test in the lab for his blood sugar.
While waiting for the lab, we noticed the D10 (10% Dextrose) bag that is hung and clamped, so that it's available for a quick bolus if he's low, was getting a little low...but we hadn't needed it for a day or two. The nurse looked at the clamps, and the one closest to Oakley's body was unclamped-probably from him being moved and active- and that the clamp on the top of the line was unclamped too. He had been getting high-sugar content water for an unknown amount of time, and got nearly 1/3 of his bag. The nurse called the resident and let her know, and she ordered for a bolus on his insulin and close supervision and blood sugar checks.
Since this incident, they have taken the D10 bag down, and just have it nearby...not hanging on his tree and not connected to his lines. Good news: It was Bactrim day, but no emesis (puking)!
Tuesday: Oakley was up until 3, and then was awake but quiet from 8 on. His nurse came in to give him his meds at 9, but since Trevor and I were sleeping, she held his meds until we woke up (weird...and not okay). We ended up waking up around 10, and when his nurse came in and told us, we were on guard because she had started off on a bad foot with holding his meds. We talked the doctor into approving feeds for Oakley, but they want to have his zenpep delivered in the beads instead of him swallowing the whole capsule. They had to write an order for it, so we didn't get to feed him until about 5:30 pm. They decided we needed to be educated on how to administer his zenpep (since we've only been doing it for 3 1/2 months), so they called in a nutritionist that works with the kids with CF (cystic fibrosis). That nutritionist is very lucky that I was at my PT/INR (my blood clot test) and wasn't there to give her a piece of my mind. She wanted us to give it to him with applesauce (I want his first food to not be a medical procedure...call me crazy), and told Trevor that we weren't feeding him, it was a procedure to get his zenpep down.

...and Aside...

Trevor here. Now, I rarely get in the way of what and how medical personnel approach their specialty, but this broad was off her rocker. First off, she came in to the room without introducing herself and just started explaining that she was a nutritionist who usually works with the "CF" kids. Oakley doesn't have CF. Never did. She begins to run through her CF pancreatic lipase spiel by stating that all her CF kids love taking their meds with applesauce and even though its not hospital policy, this is what she found has worked for again, her CF kids. (and again, Oakley doesn't have CF.) I stop her here and explain Sam's afore mentioned apprehensive approach to the medical applications of applesauce. This apparently hits her ear like an ice pick. She looks at me like I just punched her in the titty. "Well, your wife is going to have to learn that some things work better than the ways they've been done in the past." Again, I explain the sentimental approach Sam has towards the applesauce in this case. She then decides to pull out the scientific approach and the ugly, dark, brutal side of pancreatic lipase. "First, you should know that if those beads don't get washed down they can..." I finish her sentence..."ulcerate? We know. That's why we always wash them down with atleast 5-10mls of sterile water. We've done it that way ever since he was on Creon before his Zenpep."
"Oh, well then you know the importance of these beads getting to the duodenum for them to start breaking down properly?"
"Right. The GI specialists that prescribed them for him back in Boise said that they actually start to break down in his small intestine, but we always make sure they're washed down well before we even feed him."
"Well, I guess I won't argue it, but please have your wife call me if he has trouble with the beads."
She then handed me the instructions for placing applesauce on the end of a spoon, twirling it to acquire all the beads on the end of the spoon in a med cup, then place in childs mouth. That was her revolutionary procedure, no, the ONLY procedure for giving beads of medicine. I politely accepted it, thanked her for coming and before I was finished wishing her goodbye, she was already out the door. I then immediately sent Sam a text stating, and I quote, "You are so lucky. You would have murdered this lady."

And indeed, she was lucky. I texted her all the above, and it wasn't pretty when she got back. That woman had long since left, but the nurse got the ear full of it. I don't think that woman will be coming back to our room. Ever.

Back to Sam; I finally got to feed Oakley at 5 pm, and I tried without the nipple shield...It worked! For the first time ever, Oakley breastfed directly, and seemed to really like it once he got the hang of it.

Another first, and the best: Oakley laughed today! He was cooing, and smiling, and then he giggled. I was so excited, and Trevor was skeptical that it counted. Later, he laughed again, for a longer amount of time...and he's been laughing all night. Once, he even laughed so much that it scared him and he started to cry.

I'm going to cry, because I am so happy to hear his laugh. I am so lucky that despite the chaos and the pain he is constantly exposed to, he can still find joy.

This shirt he's wearing is so very appropriate to me. It says "Little guy, Big potential." I think of how small he started out, and how far he has come, and how many lives he's already touched. To think he's 5 months old (it's 1:15 am on the 19th up here) now, and to remember back on all he's already accomplished is so astonishing. I thought that I'd have a normal life, and now I realize that even though I haven't gotten the picture perfect life I had imagined, I have been given so much more.



added so you can see how much he's grown.
This pic was taken 07/28, look how big
his hat looks!



I am thankful for every day that I wake up, that Oakley smiles at me, and that Trevor bonds with our son. We have been able to bond with him in a way that we just wouldn't have been able to, because we can devote every waking (and some sleeping) moment to our son. I miss my job. I miss our house and our dog, and our fireplace, but I am blessed to get the opportunity to be there for the first giggle, and many more.

Sunday Funday!

Finally get to see this smile again!

So, Trevor and I spent the night on the one man cot Saturday night...we are not as young as we used to be...and wow do I miss our King sized memory foam mattress! My parents came over at 8 am, and took a million pictures of Oakley. They both held him and snuggled with him, and got to see him smiling and not sedated. He was even taken off the nasal cannula and the tube that went down his nose to vacuum out his stomach acid! My Dad took Trevor and I to the Ronald McDonald house to get some clothes while he played arcade games, then we went and got lunch for us all. Mom stayed with Oakley and got some one on one time with him while we were gone.

They were planning on leaving at 10 am, but it's hard to say goodbye to us! It was so great to see them, and to get some time away from the hospital and breathe fresh air. They left later than they had hoped, but I sent them home with a disc of pics I hadn't had the chance to email them.

Just thought I'd share some funny ears

About an hour after they left, my brother, Zech, called from the Boise Airport. He was coming to Seattle for a business trip (I feel old when I realize my baby brother is old enough to go on a business trip!) and would get in around 6, but didn't have to start any meetings or anything until Monday morning. I drove to his hotel (sort of...I got lost and picked him up on the side of the road after he started walking to meet me) and we started to head to the hospital. I must have been in serious need of sibling time, because I missed my exit...and the next 15 or so. We ended up closer to Canada than the hospital. It gave us a lot of time to catch up though. We got to the hospital, ate some dinner, and Zech and Oakley got some uncle and nephew time.

And some more funny ears!

It was an amazing weekend for us. Oakley got extubated, we got some shopping in and were able to spend a lot of time with my parents, Oakley made it out of the PICU (pediatric intensive care unit), and was off oxygen, and we got to spend an evening with my brother all in one eventful and amazing weekend. I can only hope the rest of the week can match the awesome start.

The doctors think the time in PICU set Oakley back quite a bit. He was 5.35 kg when they weighed him down here on the SCCA (Seattle Cancer Care Alliance-He doesn't have cancer, but they do the bone marrow transplants) floor yesterday. They are going to try to arrange delaying his BMT at least two weeks, which puts at chemo starting on the 11th of October, and transplant on the 18th. We still have to hear from the donor(s) to see if that is a possibility, but that's what we're shooting for.

I'll miss Oakley staring at his tree.

Our tree that was outside the old room

I'll post another update on the happenings of Monday and Tuesday...with pictures from today!

Part 1 of the weekend

Sorry we didn't post sooner! My parents came Friday night from Nampa, and we've been spending all our waking moments with them. They just left, and were way behind schedule...so they're sacrificing tonight's sleep for a few extra hours with us. It was awesome having them here. So, from Friday; Friday night, the doctor on in the ICU told us they were going to try and extubate Oakley earlier than the previous doc had said. He told us that they would wean him down through the night on his oxygen and CPAP and hoped to extubate around 7:30 or 8:00 am, right after shift change. My mom and dad were in town that evening, and we were able to get them into the hospital after visiting hours so they could see him for 10 or 15 minutes. We went out to dinner with them in the University District of Seattle. First, we went to the Thai restaurant that Trevor and I have liked the most. We walked in to the place at 9:30, the sign said they close at 10. As we sat down at a table, the man behind the counter said to us, "We close te'o clock. So sawee, you maybe come back 'nother nigh." We all started to leave, a little baffled that they would ask us to leave, when the restaurant had people seated, and the cooks were all cooking, and they didn't close for half an hour. My mom turned back and went to talk to the man and clarify that we were correct in assuming he wanted us to leave. She asked him why he was having us leave half an hour before they even close; he replied that "we have lot people in here already, we will be cook until te'o clock anyway." My mom then asked, "So, you're telling me that you'll be here, cooking anyway, but you just don't want our business?" and he nodded and said "yes." For your information on future Thai food searches, this restaraunt is called, "Amazing Thai Cuisine" and it really is great food for pretty cheap, but the customer service (or lack thereof) has ensured that we will not be repeat customers any longer. I hopped on my phone to try and find something that was still open, and found another Thai place just a few blocks away. I called them and the owner let me know that they too close at 10. I asked him, if we could make it by 9:45, would he let us in or turn us away. He told me they would let us in, but we'd have to order right away, because the kitchen usually closes at 9:45. We were there, but couldn't find a parking spot, so I had Trevor, my mom and dad hop out of the car while I found a parking place. (I always order the same thing, no matter which Thai place I'm at, so they could order for me, and look at the menu for themselves.) Every stinking spot I found was either a loading/unloading spot for 15 minutes or less or a handicapped spot, so I drove around for quite sometime. I finally found a spot, but after driving around, I had no idea where the restaurant was. I didn't have anything on me, except the keys to the car...no wallet, no cellphone (with GPS-which would have been convenient), nothing. I got lost. I was on the correct street, but didn't know if I should go up or down. I guessed...and guessed wrong. I walked about 4 blocks in the wrong direction until I came to an area that looked familiar...it looked familiar because it was where "The Ave" ended. I turned around and started walking the other way. I kept feeling vulnerable, because the homeless people started to come out. They were setting up for the night to sleep, beg, and navigate lost girls from Idaho to the right area down the street. That's right. I asked several drunken college kids who didn't have any idea where they were, let alone a specific Thai joint (there are about 5 on the Ave). I forced myself to face my fear of crackheads and ask if they knew where Thai65 was. He knew right where it was and told me. I didn't have any money on me, but that was the first time I felt really compelled to give money to someone who had asked if I had any coke. They were very gracious at Thai 65. The owner talked to us for quite some time about having a restaurant here, and how he had to call his mom constantly for advice on how to cook things. He knew we knew a thing or two about Thailand or at least Thai food, because of what my mom ordered and how (I can't do it, so I don't know how to describe it even-all I know is that it's a lot of meat, and a fried egg). We talked to him about his Thai name, and our Thai international students. After we had paid, he left, and brought back some spring rolls and ginger rolls for us to try, on the house. We were all so impressed with the customer service we received, especially so late into the night. We will now order from Thai65 anytime we get Thai food here in Seattle. Saturday: they extubated Oakley! He was still on a nasal cannula and quite irritable from the tube rubbing on his vocal chords all week. He had almost no voice, and the sound he makes while breathing sounds like a very loud cat purring. He has to get suctioned, because all the irritation makes you produce phlegm, which is tough to breathe through. His nurse didn't want us getting him riled up; when he was awake, he cries-producing more phlegm and making it harder to breathe, so she asked us to leave him alone until at least the afternoon. Oh, and I forgot to include that they are very strict, and will only allow 3 people in his ICU room at a time, so while my parents were back there, Trevor or I had to leave...it was kind of a pain anyway. We need very little excuse to go shopping-and my dad jumps at the chance to go to any Asian markets, let alone a whole International District! We went downtown and went shopping. We piled into the Prius and found it, parked the car on a hill, and trekked to the shops. My dad was wanting to find a shop with all of the spices, I think he wanted some garam marsala? We went into a little shop, they all had some weird stuff. Next, we stumbled upon a shop that said tea-tasting and kind of looked in, and the owner told us to come and sit with him for some tea. We sat on driftwood seats at his driftwood table and tasted a bunch of different loose leaf teas. About an hour in, a guy walks in-obviously a regular-and the owner convinces him to join us. (I thought we were almost done, I've had about 20 shot glass sized cups of tea) It just so happened that this guy actually teaches classes about tea. I never had thought about different kinds of teas, or about the history or process of making tea. We learned all kinds of stuff. I ended up getting a tea steeper and an ounce of my favorite of the teas and an ounce of Trevor's favorite. After that, it was time to go back to the car and refeed the meter, as well as drop off our new goodies. We started looking at other shops, and found a food shop that had some crazy stuff...what do you do with a dried sea cucumber? They had some gross stuff, like dried fish and shrimp that my parents got, and I got a few laughs at some of the Chinese herbal medicines that they had. We were starting to get hungry, and after about half an hour we found a place. We had a couple of trays of dimsum, and then got two entrees and were stuffed. It was time to go to the car again, and we were getting bored and cranky, but on the way to our car, there was an alley full of pigeons who had gathered just outside a "pet shop." Now, I put that into quotes because the only thing he had were freshwater fish, and there's no way that place is legal. It had hundreds of fish in each tank, there were probably more fish than water in many of them. It had some really cool koi fish, but it was super narrow, incredibly smelly, and we couldn't even turn around in most of the store to get out. There's no way that meets firecode or healthcode. We suspect that the pigeons were there because they're getting to feast on the dozens of fish he must find dead in his tanks. (Some of his 'tanks' were clear rubbermaid totes with water in them.) We went to University Plaza for some retail therapy after all the ecclectic shopping we'd done. We went to H&M, GAP, the Northface, Storables, and then we got a call.

Oakley in his owl hat, just a few days old

Oakley had done so well on the nasal cannula that he was down to half a liter of oxygen per minute, which is not much at all. He was doing so well, in fact, that they didn't think they needed to monitor him overnight in the ICU, and that he could go back down to the SCCA floor! We were stoked, he was getting moved at 7, so we finished up and went to the hospital. Oakley was in a decent mood, not great, but my parents finally got to spend some time with him and hold him. The room we ended up in is tiny, about the size of our isolation room in Boise, but they put us at the top of the list for a bigger room because we'll be here for the long haul.

Look how far he'd come, this is from the end of June!

Thank you for everything that everyone sent with my parents. I haven't gotten to read the letters from the Nampa Chrisian yet, but I'm excited to. Grandpa, thanks for the pies, Trevor and I are stoked to eat them! We have been so blessed by those around us giving us so much support. Speaking of support, there is an awesome opportunity to help us out coming up next month.

Look how tight his hat is getting! This was clear back on August 5th

TGI Fridays is going to be having a bartender championship, where they battle to see who is the best in the valley, and donate the proceeds to a charity. The are selling tickets to the event, which is October 15th I believe. Seats are $10 and standing room is $5, and they have generously chosen our family as the beneficiaries for this event! So if you're interested in seeing some bottle flipping and fancy pouring, we'd love it if you were able to attend this event. The location will be the Nampa TGI Fridays (by the Costco in Nampa), and you can contact them for tickets starting today.

This was a week and a half ago. His owl hat is too tight, and his Hurley onesie is almost too short, he is making such good progress!

The whole enchilada

Oakley ended up being extubated today! But then he was re-intubated because he couldn't handle it.

although the bag may not inflate, air is still flowing through the mask!

He was slowly weaned off the ventilation today, and they thought he was ready to be extubated...I really wanted it to happen, so I was getting so excited and antsy. He handled the extubation pretty well, but had a lot of mucus and junk in his throat. He did ok when he was calm, but kept coughing to try to clear his throat. His throat was swollen from the tube being down there and irritating it, so they gave him an inhalable anti-inflammatory nebulizer medicine. That seemed to help, but not a lot. He got two doses of that, and they wanted to give him steroids, but had to clear it with the BMT team. They had to move us to a different room, so that a cardiac patient could have the spot (we were adjacent to the CCU in our room, and they filled up). Once we were moved, they started to deep suction Oakley (so they took a tiny tube about the size of a coffee stirrer straw and attached it to a vacuum sucker and stuck it down his throat) to try to clear his airway more. He started to cough, and his O2 saturation dropped from 100 to 58. He was then crying and coughing and trying to breathe, but his airway was too constricted and irritated to get enough oxygen into his system at that point. The ICU doctors decided to re-intubate him because he had dropped so low. They got the go ahead from the BMT team to give him steroids, and the doc that was on (a Frenchie named Francois) said that the new game plan is to give him 48 hours on the ventilation and steroids before trying the extubation again.

After today's extubation, they put him on a mixture of oxygen and helium through a mask (that was too big for his face) to try to assist him in getting his lungs filled with air. Mixing the oxygen with helium makes the oxygen really thin, so that it can pass through the airways more easily.

I'm taking today's setback harder than I expected. My mom and dad are coming up tomorrow and leaving on Sunday, and I was excited for them to get to spend some quality time with Oakley before he goes through chemo and we have to monitor his exposure to people closely. I was also excited to spend some time snuggling my little guy, since I haven't been allowed to since the wee hours of Tuesday morning. I didn't get to see him smile (he was still sedated a bit, and very uncomfortable from having a tube down his throat), and he is NPO (no products orally) and we don't get to give him breastmilk, even through an NG tube.
I miss being important to my baby. While he's in the ICU, they don't really want us staying the night there, and he's kept so sedated that he doesn't realize when we're there or when we're absent from his bedside. I feel selfish for being upset at my loss of pleasure in my baby, instead of being concerned for his breathing ability; but I know he's in good hands and that I can't do anything about his respiratory care.

Quickie update

So Trevor and I woke up in time to get to the hospital for rounds (even early enough to shower and brush our teeth before leaving!) this morning, and it was great. The BMT (bone marrow transplant) team was there with the ICU team, and we are going to have a pretty eventful day, hopefully. First off, Oakley hasn't had ANY apnea spells since last night's (early this morning in the wee hours)  post! Thank the Lord for the answered prayers! This morning, they ran the EEG, and after the first hour of no apnea spells, the neurologists ordered another hour to see if they could catch a spell during the EEG. Well, they didn't. We won't know the results of the EEG until late tonight or early tomorrow, but his breathing is doing so awesome that they reduced the air pressure in his CPAP background air from 14 to 9 this afternoon, and are going to reduce it to 6 this evening if all continues to go well, and then finally, tonight, they might extubate him! This is earlier than we thought, but we are so excited that his apnea spells have diminished! This either means that the seizure medicine is working, or that he's just being Oakley, and having random issues that come and go because he hates to be boring...hopefully the former and not the latter.
Funny thing, well, I thought it was funny, happened with the EEG tech. During rounds, they had decided that we'd keep Oakley on the EEG until he was completely weaned off the ventilation, and extubated, so that if he did have another spell, they'd be able to catch it and see if it was the result of a seizure.
The EEG tech started packing up her equipment after the 2nd hour of the testing, and I stopped her, and told her that they wanted to keep him on the EEG until he was extubated. She replied in her meanest Russian accent, "I do not get order to change eet, I get order from Doctor for two hour ongly, and two hour is over. I go now."
I tried to explain that an order should be pending, and that if she didn't mind waiting a moment, I'd like to have our doctor down here explain. She didn't want to wait, but the doctor just happened to walk in, and I asked her if the plan to keep Oakley  hooked up to the EEG until extubation was still on. She looked over and saw that he had been unhooked and asked the tech to put it back on him, because we wanted to monitor him until he was weaned off the CPAP and all ventilation.
The EEG tech again, in her meanest sounding Russian accent replied, "I do not take order from you. Ongly from nee-urr-ology, and they give order for ongly two hour, I do two hour, I leave. You want more EEG, you call dee doctor and you ask for new order. I ongly take order from dem."
I thought this was hilarious, because I hadn't seen a tech mouth off to a doctor, and I thought she was just being mean to me, but was glad that I wasn't the only person who caught the wrath of her. She was delightfully ornery during the whole process, even stole the nurse's chair when she went to change something on the pump! I got a kick out of it, and hope she doesn't lose her job for a while, because I would like some more of that entertainment!
So, after the EEG tech standoff, the attending doctor told me that it was probably ok, because she doesn't think that Oakley will go apnic again anyway, but they just wanted it just in case. So far, he has kept true to that, even when he was trying to cough (which he can't while intubated, they just suction him as well as they can when he tries) and was choking on his spit, the CPAP didn't have to kick in extra pressure for him.

Aleks turning down the pressure!

Just wanted  to let everyone in on the good news! Trevor went back to Ronald McDonald, and I'm going to catch up on Parenthood now (I missed the new episode in the midst of all this "I'm not going to breathe, I'm Oakley" hubub.

Intubated, day 2

the tube in his nose vacuums out his stomach acid

So today was kind of frustrating. Trevor and I slept through the rounds (when the docs come through and discuss Oakley as a team) and he didn't have the same nurse as yesterday. When I got to the hospital, the nurse told me that they were starting Oakley on anti-seizure medications-which the neurologist told me they weren't going to start yesterday. I asked her why, and without answering my question, she told me she'd call the attending doctor.

The attending told me that the EEG came back, and Oakley had a seizure during it. They had done some more investigative work, and found that seizures can happen as a result of one of his medications. His tacrolimus (which is his immunosuppressant, and all the doctors pronounce it differently...we've heard tack-row-lime-us, tack-rah-lime-us, tack-rah-limb-us, tack-rah-lime-us so far) has a side effect list that rivals War and Peace for length. They don't want to stop it, so they decided to start an anti-seizure med called Keppra.  

Since he was on the ventilation during the EEG, they couldn't tell if the seizure was concurrent with an apnea spell. So tomorrow, they will repeat the EEG until he has an apnea spell, so they can tell if that's what's causing his spells of not breathing. They will be able to tell because they turned down his ventilation to CPAP, so instead of the tube forcing air into him and regulating his breathing, he is breathing on his own, unless he goes for a few seconds without breathing, and then the machine helps him. He's barely above room air oxygen concentration, and he does have extra support when he does breathe, because he's basically breathing through a straw, but he's doing well. He has had 5 apnea spells since they turned him to CPAP at 3 pm. One of the spells included a bradycardia event (that means the lack of breathing affected his heart rhythm), but it's not too worrisome to us, because it was pretty short-lived. He seems much more at ease on the CPAP, he's a control freak.

His blood sugars are still varying pretty good, and they have been changing his rate of insulin infusion quite a bit. He got lower than they like, and they even turned his insulin off a few times. His poor little feet are starting to look like hamburger, they've moved from his heels to his toes and the balls of his feet for poking to get blood. Three of the apnea spells he's had tonight were during blood sugar checks, so I almost wonder if he's holding his breath when they make him mad-and then it registers as him stopping breathing, so the CPAP forces a breath.



His morphine drip-I keep asking for mine, haven't gotten it yet!



his sedative



They still have him sedated pretty heavily, and I doubt he even fully realizes when Trevor or I are here because he's so out of it. He's on a morphine drip because of the pain of being intubated. When we were there today, he kind of started fidgeting, which sucks because they have to keep him tightly swaddled so he won't jerk his tube out. I felt like we were doing more harm than good, so we only stayed 3 or 4 hours today. It's nice to be able to spend some quality time with Trevor. Today we got lost in Seattle and ended up on the other side of town. It was a pretty cool adventure. We found a cheap food stand by the Sound for dinner.



He can't keep his hands out of his mouth when he's got nothing in there-it must be so hard for him not to grab that tube that's in there now!

Well, last night was a tough one. I had been to a doctor's appointment that day, and was gone for much of the afternoon, but when I got back to the hospital, Oakley was playful and happy and had just eaten a little bit from a bottle. Trevor and I ate dinner, and then we all cuddled in on the window seat bed to watch some tv. We had noticed the back of the little guy's head is getting a little bit flat, so we laid Oakley on his tummy while we were there with him. Around 10, I fed him (after he got his Lovenox shot and was a little cranky), and he was scarfing. We have been nursing in different ways, because he was resistant to nursing a couple of weeks ago, so we are trying to make nursing a super comfortable and soothing experience. So, Oakley and I were laying side by side, while I nursed him, and he started acting like he was going to throw up. This is a fairly normal occurence for him, especially on Bactrim days (Bactrim is a med he gets on Mondays and Tuesdays as a prophylactic against PCP pnuemonia). I raised him up, and his lips looked like they were turning blue, and realized he wasn't breathing. I told Trevor, and he called the nurse while I tried to get Oakley breathing again. He started breathing after about 10 seconds, and the nurse came in to check him out. While she was there, he did it again for 10-15 seconds. It was really weird, because he wasn't acting like he was struggling to breathe, he just was acting like he forgot to...and he was super calm, just turning blue. She called another nurse in and they called the doc on call, and they hooked him up to some monitors to watch his heart rate and respirations and O2 saturations (the amount of oxygenated blood getting to his extremities). He was getting pretty mad, because they were checking his blood sugar, and poking him and prodding him to try to figure out why he had done this. We thought he might have sucked his zenpep down his trachea instead of getting it into his stomach, or that he had aspirated some of his food, or even that he was getting acid reflux issues. We put him on a foam wedge, but then he got a hive-like rash. He was given Benadryl to get rid of it. They wanted him to calm down, so they could get a better idea of what was going on. They had me hold him and rock him, and he nuzzled in to try to sleep, the Benadryl was definately kicking in. The nurses started talking and Trevor and I were joking about how Oakley sometimes does inexplicable things, and then they go away. His left leg that keeps swelling up and turning red or purple, his rashes that come and go, in the past he's had random fevers that go pretty quickly, etc.

I noticed he wasn't breathing again, and pulled him away from me to look at him and show the nurses. This time we blew in his face, rubbed his feet, shook his arms, but he still didn't start breathing. They called a code blue, and people rushed in from all over the hospital. They put on an oxygen mask and started pumping air in and out of his lungs manually. He had gone 30-45 seconds that time. Chaos ensued in his room. Respiratory therapists looked him over and poked and prodded, his pupils were checked by 5 different people, the ICU team came and looked him over and over. He was breathing on his own again, but was exhausted. He was breathing heavily and grunting a little, and his head was bobbing with his breaths. Trevor and I just attributed it to the Benadryl and the exhaustion, but they said they'd check him in 2 hours to see if he was stable enough to stay on the transplant floor or if they needed to move him to the ICU until they tested him in the morning.
When they came back, he was breathing pretty normally, but they wanted him to go up to the ICU for the night just to make sure he was going to be ok. Trevor and I were exhausted, and wanted him to be able to stay, so we could get some sleep-he was on monitors now-but they insisted. They don't intubate on the transplant floor, that's something they only do in the emergency room or in the ICU, and they wanted him to be in an accessible place so there wouldn't be chaos if he needed breathing assistance.
We moved up to the 4th floor, giving up our suite-hopefully just for the night- and while the ICU team was admitting him and poking and prodding and examining-he woke up, and stopped breathing again. This time was different than before. He turned very pale, looked off and then went stiff as a board. His arms and legs were straight, and then he arched his back. They thought it was probably a seizure, and they gave him Adovan. They wrestled him down and got a bag on him, to get him breathing again, and decided to have a CT done on his brain immediately, instead of waiting until morning.
As we entered the CT scan room, he stopped breathing again, and they couldn't get him to start again, even after bagging him for a while. They decided to intubate him, which means they pumped him full of pain killers and muscle relaxers, then put a tube down his trachea for a ventilator to pump air in and out of his lungs. The first doctor tried twice (they had to take the bag off his face while they tried), then the second doctor tried twice. I don't know if there's a timeframe in which they have to call a code, but they called another code blue, and kicked Trevor and I out of the room. They sent a social worker to talk to us while they were intubating, and she incorrectly told us they were having to do chest compressions and bagging him while they tried to intubate him. That freaked me out. I asked her if he was dead and they were trying to resessitate him. She didn't seem to know, and Trevor and I  got pretty scared. She came back in and told us they finally got him intubated, after 10 minutes. Instead of talking to her, I went back into the room and asked the doc if they really had done chest compressions, they told me no, his heart had never stopped, they just had trouble intubating him.
With Oakley intubated, and still having episodes, Trevor and I gave in to the realization that we wouldn't be able to keep our huge room on the transplant floor. We went down and packed up our stuff and loaded it into our car. After we got everything out, we had to drop a couple of things off in the ICU, and we wanted to see Oakley and meet his nurse (it was 7 am at this point, time for shift change). They wouldn't let us back there, because they were doing a sterile lumbar puncture, but they did let us know that the CT scan looked good. They were worried he might have a brain bleed or a blood clot, but it was clear. The lumbar puncture was to look for meningitis or encephalitis. Trevor and I went to our room at Ronald McDonald house, and I slept there for the first time in the 16 days we had been here.
We came back this afternoon, and met with the neurologists. They're the ones who will get to decide when Oakley can be extubated (which he needs to be before he can move back to the transplant floor). They did an EEG today, and they want to wait on the results of that before they can make any decisions. They think he may have had a seizure, but that it was likely caused by his blood sugar. They don't want to put him on seizure meds, but if his EEG comes back that there's a problem, then they will. He had an MRI that looked great, so we're really just waiting on the last test. They have kept him sedated the entire time, so he's been out for about 20 hours now. It's so hard to see him all hooked up to tubes and not get to hold him or see him smile. It's like reliving his birth and the first couple of days with him all over again, but it's harder, because now I'm used to being spoiled and getting to see his smile.


the face I'm missing right now



The nurse and I just spoke, and Oakley's been fidgeting and seems uncomfortable, so they're starting him on a morphine drip to keep him further sedated. I am going to now spend the night at Ronald McDonald, and it already feels bizarre.

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