Week 290: Palm tree in the wind

Greetings from somewhere in the turbulent air over the state of Georgia. I am en route back to Wisconsin after a quick 36 hour vacation in Florida with an old friend of mine who lives in Germany. I’m tremendously grateful to Papa Bear for facilitating this much needed break for me. Although I haven’t spoken to any of the crew yet, it sounds like everyone survived my absence in more or less fine form. 

From up here it feels like thinking back to another world and another life to recall the details about Lemon’s clinic visit on Wednesday morning, but here’s what I can remember. The staff was actually fine with Lemon’s current weight of 45lbs, since that is a gain of about 2lbs since our December visit, and places him in the 59th percentile for  BMI, phew. His pulmonary function tests were also good, or at least they were once we managed to convince him to stop goofing around and actually do the test properly. So, we don’t need to come back for 3 months, at which point it will be June, which is hard to believe. 

Some other tidbits we got were feedback from the GI doctor, who is of course still waiting to see his next round of liver test results. We were told that we’re going to do another liver ultrasound in June, and assuming that the ultrasound plus whatever liver function tests we have by that point look good, he will try to taper the ursodiol and see if we can get off of it. I know Lemon would be happy to see his pill burden go down so that is definitely something to hope for. We also learned that a medicine we used once before, ciproheptidine (an antihistamine and appetite stimulant) can help reduce night time vomiting in other CF kids with g-tubes. We are all about reducing night time vomiting at our house, so we now have a prescription for that on hand to try next time Lemon is sick. Hopefully that will help us prevent him from losing so much weight every time he gets sick. 

And, once again, we failed to get liver labs drawn. We got so far as the check in desk for the lab this time, so closer than we’ve been in a long while. However, they told us it would be at least a 30 minute wait so, rather than wait in the germ-filled waiting room, we took off in the hopes that we will be able to get back there at a less busy time of day. Fingers crossed. Otherwise I think we will just wait until we’re back in the clinic for our scheduled mega visit in June, when we’ll be drawing blood for the whole panel of annual labs anyhow. 

Aside from all these medical updates, I have it on good authority that, during my absence, Lemon advanced from blowfish to clownfish at swimming lessons. So, he should be all ready for summer if and when it arrives!

On a final note, our new washing machine arrived. It is so glorious it is hard to put into words. It may be my new favorite thing. I’m not sure what that says about the current state of my life, but hey. It’s the truth.