Sunday, November 16, 2014

A Tubie No More

pondering life
Oy, time flies. I’ve been saying for weeks that I was at least going to write an entry commemorating his G-tube removal but look – even that now is almost two months past! Yes, it’s true, Calder is now G-tube-free. The event was thankfully uneventful. Shortly after my last entry in August, Calder’s site became quite angry looking, and then the first week of September he contracted a bit of a small cold, so I was a little uncertain what the word would be when we finally got in for our one-month weight check. Since I took him in for a sick visit we wound up just using that weight, which was 18 lbs 12 oz on September 12; Ginny said that was just a little bit shy of what was ideal, but she gave us the green light to take it out. She told us some families preferred to leave it in through cold and flu season in case when (not if, you see) the child got sick and possibly lost his appetite, he could still receive nourishment through the tube. Her opinion was clear. Based on all her past interactions with Kraemer, she said she imagined we would not be one of those families, and she noted that if necessary, we could always put it back in. Not that that was a real reassurance for me – I never want to have to put it back in, not because he gets sick, not because he suddenly develops a stronger oral aversion, not for any reason ever!! Still, because he was getting over a cold we did decided to wait a few days to remove it, mostly because should there be any issues with the site healing, I certainly didn’t want him to have an infection and a cold at the same time. No thanks.
sun-protected. we picked the hottest pumpkin-picking day

Kraemer removed the tube on Monday night, September 22. I was in Belgium for work, so I missed the momentous occasion, but I got to come home to a textbook result (some leak, some get infected, some require surgery, usually when they've been in a longer period of time.) The site healed overnight, mostly, he told me, with no leakage. This scar will definitely be more noticeable than the scar from his heart surgery, but a badge of honor, nonetheless.

rough-housing at the botanical gardens
After my return home, we spent the last week of September interviewing nannies, with the hope that we’d have one picked out and hired by the time we left for Italy on October 3. No dice. Long story short, our dear, wonderful parents took turns watching Calder while we were in Italy, and then Kraemer took over once we’d returned. We took back up with the interviews, and after a couple of hiccups, finally landed a very sweet, competent woman to keep Calder company. I’d put off and put off the interviews in the first place, I think because subconsciously I was really struggling with leaving someone else to raise my child during the day. Perhaps we’ll return to that discussion sometime in the future, but for now, we are so happy to have found Virginia.

Little sicky (ok, this was when he was
sick over the summer, but you feel his
pain, right?!)
To our chagrin, we returned from Italy and from a fabulous Ohio wedding (Jennifer Hunter!!), to a snotty Calder. This time, his being sick was a doozy and really took its toll on all of us. He was sick for over two weeks and even now sometimes has a cough. We went back to nebulizing him multiple times daily with both albuterol and budesonide, and we will now be nebulizing him with the latter throughout the remainder of the season. For several nights I was tortured by his rapid breathing and torn about whether to take him in overnight; even when I know exactly what signs of respiratory distress to look for, rapid breathing is never a comfort. Furthermore, Calder wasn’t eating, he wasn’t sleeping, and neither were we (Kraemer wound up getting really sick, and me sorta sick.) A colleague informed me later that sleeplessness is a side effect of the albuterol, lucky us. I cannot even fathom doing this again this winter. Because of his being sick over the summer and sick to such a degree in early fall, we will be keeping him quarantined to a higher degree than we anticipated. Also, both fortunately and unfortunately (fortunately because I want him to be protected and unfortunately because I wish he did not still qualify as so vulnerable), he qualified for a second year for Synagis, the vaccine for RSV. I heard that it was quite tough to qualify this year (and you may remember from my entries last year that the vaccine is by dosed by weight and obscenely expensive), so we are happy that Calder has this extra oomph of protection.

Once Calder was mostly back in good health, we had a consult with an occupational therapist, who has recommended OT for Calder once a week, as well as an increase in speech therapy, as well as a feeding consult. In general, Calder does a pretty decent job of feeding himself finger foods but could stand to improve his pincer grasp; he is oftentimes mushing food in the vicinity of his mouth rather than placing it directly in, although he gets the job done. The feeding consult was recommended on account of his loss of appetite, or perhaps an increase in his oral aversion, but ultimately, I think the setback mostly came as a result of his sickness. Now about a week or so later, he is eating much better, though still not as consistently or with as much excitement as before. Perhaps the novelty has worn off. If the feeding consult comes to fruition, we’ll find out.  But he is making great strides in physical therapy, taking to his walker with renewed vigor. Cristiane thinks he’ll be walking within 1.5-2 months.

On that note, Kraemer and I both witnessed Calder take at least eight steps today, unassisted. What fun it is to see. Look out, world!

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