Seattle, days 2-4

Sunday: Trevor and I slept in the window bed that is in Oakley's room. We met all the docs again the next day, and they asked a million questions that we didn't know all the answers to (we thought the answers were in the chart...could they not look there before asking???). We still had Mona and Bill here, so we escaped for a bit to shower, and pick up some groceries for snacks.
Mona and Bill left, after getting us coffees and saying goodbye to Oakley, and we started our permanent residency in Train zone, floor 3. We're supposed to have supervision for Oakley 24/7...which means little to no alone time for Trevor and I. We have to put ourselves on a list for volunteers to sit with him when we have errands to run when neither of us can be there, and neither of us are familiar enough with the area yet to feel comfortable driving very far alone.
Oakley's picc line (the IV that runs up his left leg to his torso, where his medications and fluids go in) looks pretty ratty, we've been babying it so that it lasts. I noticed his leg is purple, and thought I had put his diaper or outfit too tight. I loosened the diaper and changed his outfit just in case.
A few hours later, it's still purple, and his left leg is colder than his right leg. Certain it's not my fault now, I let the nurse know. The nurse looks at it, and calls in the IV team to look at it...they call for an ultrasound. Ultrasound doesn't find anything, but can't look at his whole leg, because of the dressing at the insertion point. Oakley's scheduled for a central line to be put in on Tuesday, so they think he can leave his PICC in until then, and just keep an eye on it.
Monday: scheduled for an ultrasound of his kidneys and blood vessels near his heart for Hickman line placement and because of his high blood pressure. Also on the docket: EKG, echocardiogram, some labs, and his bactrum (which is a prophylactic to avoid some type of pneumonia called PCP, and means barf-o-rama), and some labs. We get him to pee in a cup...twice. The nurses are impressed that they don't have to tape a bag to his junk. They draw some blood from him, and the echo gets done. EKG is rescheduled for tomorrow afternoon, but the echo reveals that his heart muscle wall is larger than it's supposed to be.
Cardiology will be consulted tomorrow. We try giving him his zenpep (pancreatic enzyme he has to take every time he eats) without opening the capsule; it works great the first time, he chokes the second time, the third time the capsule dissolves in his mouth and he ends up swallowing the beads anyway.
His ultrasound reveals that he has a blood clot in his left subclavian vein, so they'll go for the right. They want to start him on blood thinners, but not until after his surgery. They'll do Heparin in a continuous drip, and will probably switch to Lovenox when he's ready to go home.
His central line placement is scheduled for the morning, and they'll do a two for one deal and do a bone marrow aspiration while he's under. We talk to the bone marrow transplant team and to immunology, and they think he should have some extra weight before they do the transplant. They will have the coordinator see if that works for the donor, because they want a head start on graft vs host disease, so they will have a little ground that can be lost in case it starts up.
Tuesday: we have had Oakley NPO (not eating anything orally) since 2 am. He's hungry, tired and cranky. We go to the surgery floor and meet the team who will be putting in the central line and doing the aspiration.
They say they'll try for his right side, because of the clot on the left. Trevor and I are anticipating 2-3 hours of surgery, post-op, and recovery before we get to see him again. We take our dirty laundry to Ronald McDonald and take showers. We get a call from the cheif of surgery (who got called in because the original surgeon assigned to Oakley got called to an emergency surgery) who lets us know that both procedures went really well, and that Oakley would be heading up to his room in about 45 minutes.
They didn't remove the PICC yet, because his fluids are running through that, and they don't get new fluids until about 3 pm. They got the double lumen-which means he has two tubes running in to the vein, so he can have blood drawn at the same time as getting meds, or have meds running at the same time, without having them mix before entering his blood stream. They went in through his jugular, threaded the line in, and have it exiting his body just below his pectoral muscle.


Oakley in the tiniest hospital gown they have!



Fresh from surgery, covered in Betadine

 Check out my new line, Mom!

A nephrologist comes in and tells us they want to look at Oakley, to see why his blood pressure is so high. They do a doppler test on his kidneys, and also let us know they will be evaluating his medications for possible culprits. When she comes in, she has the whole team with her, and they say they would like to start him on a medication to lower his blood pressure, as well as do a radiation test on his kidneys to get a better idea of what exactly is going on.

The nurse comes in later and tells us the Doc on now (the hospitalist) wants to leave in Oakley's PICC because the Heparin isn't compatible with IVIG (intravenous immunoglobulin) which he gets once a month or with the fluids running through the other lumen (line). Trevor and I throw a fit, saying they can just put in an IV the one day a month he needs IVIG, but we don't want to leave a possibly infected line in our son. They remove the PICC.

Oakley is hurting from the surgery, but is getting morphine, which makes him as high as a kite and he's eating better than he has since we got here. He got a rash, but we don't know if it's from the dressing on his central line, or if it's from the chlorohexadine scrub down he got post-op. None of the medical staff seems to be concerned, or even interested, in the rash though.

Trevor and I miss Boise. The food isn't very good here, and we don't get free meals like we did at Saint Luke's. The staff is good, but not as amazing as the NICU staff we're used to. Also, nobody here has even heard of fingersteaks, and they are apparently not available in Seattle. We also feel guilty for even getting housing at Ronald McDonald, since we can apparently shower here at the hospital, and there are laundry facilities here. We sleep at the hospital, and we even have one of the biggest rooms at Seattle Children's (we even have a sunroom to ourselves).

Thanks for your prayers, positive thoughts, and patience (since we're pretty bad at keeping everybody up to date).

Love,

The Wallaces