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.