Monday, April 25, 2016

Week 140: Adieu

Way back when Papa Bear and I had just gotten engaged and moved into our first apartment together, we adopted two little kittens.  They've been our loyal companions ever since, and have adapted with feline dignity to a variety of big changes in their little world--to the arrival of Lemon, the move to Wisconsin, and the arrival of Lime.  Throughout all of our various ups and downs, they've maintained a steady presence in the background, not demanding much but always being there when the comfort of a warm purring thing was needed.  Denzel, the orange tom, was my cat from the moment he first entered our lives--one of those rewarding cats who are mistrustful of humanity in general except for one specific human upon whom they lavish affection.  .

In the last few weeks I'd noticed that he'd lost a bit of weight, but he seemed to otherwise be his normal self.  I thought maybe his teeth were bothering him--when they'd last been to the vet (OK, 2 years ago), they'd mentioned that he'd had some build-up on them.  With all the absolute mayhem that has been plaguing our house these last weeks/months, I honestly did not have the bandwidth to get him to a vet, but I did get him some canned cat food to supplement the dry food, thinking maybe that would help him get by until I could get him in to have his teeth looked at.  It seemed to work, he liked the canned food a lot and continued to act like his normal self.  Up until Monday, that is, when he started to seem a bit off.  On Tuesday, he seemed pretty miserable, so once we got the kids to bed I took him to a 24 hr vet to be examined.  The vet did some blood tests and we learned that his liver and kidneys were shutting down, and there was really nothing to be done about it except give him an easy way out.  I buried him under a pine tree in our yard on Wednesday morning.  I still keep expecting to see his little orange and white face looking up at me at the breakfast table asking for treats, or to hear the swish of his long tail as he disappears around a corner in advance of an approaching toddler.  My heart aches for him, and for those easy, carefree days when he and his sister first came into our lives.  

We're not by nature a household that gets much time to sit in quiet contemplation of life's events, and Tuesday night was no exception.  Lemon (and to a lesser extent, Lime) are being plagued once again by seasonal allergies.  Lemon's were particularly bad on Tuesday, and he'd been coughing a lot, especially when lying down.  We learned the hard way Tuesday night that lots of coughing and tube feeding are not an especially good combination, so after saying goodbye to the poor cat, Papa Bear and I were also up at around 12:30 comforting a very upset Lemon, stripping off his sheets, PJ,s stuffed animals, sponging things down, starting laundry, and so forth.  Anyhow, lesson learned.  From now on when he's sick we're backing down on both volume and rate on the tube feeds.  We tried doing 2 cans instead of 3, and delivering them at about 2/3 the normal speed, and that stayed down, so we'll stick with that plan in the future when he's coughing.

Wednesday we had a clinic visit.  For the first time in his entire life, I don't actually know how much Lemon weighs--he's got a plaster cast of unknown weight attached to him at the moment.  But, things seem fine so we're following up again in 2 months, when hopefully the cast will be off.

On Friday, we had our first follow-up with orthopedics.  They took a few more x-rays but didn't replace Lemon's cast as I'd hoped--they just took off the ace bandage and put a layer of fiberglass over the plaster.  On Thursday, we have another appointment (because I have infinite time for appointments, so why not?) when they'll remove the cast, take some x-rays without the cast to make sure it's healing well, and then replace the cast.  Tomorrow, we also have an appointment with a GI specialist to talk about Lemon's gastric emptying rate--it doesn't sound like an exciting topic, but Papa Bear and I have suspected for a while that Lemon's stomach empties very slowly, and that may contribute to his lack of appetite.  I'm sure this appointment will just be the prelude to lots more appointments and tests, but hopefully we'll learn something useful at the end of it all.

Lime continues to be a source of great joy through all these various things.  He started crawling this week, although at the moment he can really only manage 2 "strides" before falling on his face.  But, he's very determined, so soon we will have two highly mobile children.  I can't imagine that will do much good for our overall level of sanity, but at least by then it will really be spring.  I decided that at least for this year, I'm calling April part of winter, and that next month, when spring really starts, things will somehow slow down a little!

Monday, April 18, 2016

Week 139: Go for broke

In retrospect, it was quite foolish of me to even mention the word "normal" in last weeks post.  I should have known that mentioning this word does nothing except to inflame the tempers of the arbiters of normalcy, inspiring them to rain down non-normal events to remind you of the error of your ways. 

The week got off to a fine start. I consulted with the nurse practitioner in surgery about the granulation tissue around Lemon's G tube.  We got a prescription for a steroid ointment, and the problem totally cleared up within 48 hours or so.  We also found a good work-around to avoid continuously irritating Lemon's skin with the various tapes and other adhesive products that we were using to secure the tube to his skin.  At the recommendation of a loyal blog reader who is also a pediatrician, I did some research into G tube accessories, for which there seems to be quite a market.  I discovered a company that makes a stretchy cotton belt with holes and a pocket to hold the tube.  It  secures with Velcro--no tape or adhesives required.  Lemon liked it from the moment he saw it, and his skin definitely appreciates a break from the wear and tear, so it rapidly integrated itself into our bedtime routine.  Thanks, loyal reader!

The weather finally turned warm and spring-like here in Madison at the end of the week.  Saturday was our first farmer's market of the year.  Saturday mid-day I headed off to our local nursery to buy two little fruit trees that I've been wanting for our yard, a sour cherry and a quince.  I got them all set up in a big pail of water to rehydrate the roots, and picked out sites to plant them.  Then later in the afternoon, we all went out to play on the swing set.  And Lemon fell off the ladder.  Only from 3 or 4 feet off the ground, over grass, but fall he did.

It was clear immediately afterwards that whatever he'd done hurt.  He cried a lot, and he's a pretty stoic kid in general.  But, after a short rest, he seemed better.  He was still very protective of his arm, but he was behaving pretty normally otherwise, and ate a good dinner.  So, we were thinking maybe we were lucky and got away with a bruise or a sprain.  But, when bath time rolled around and I took off his long-sleeve shirt, I could see how swollen his elbow was, and although he could move his hand, wrist, and shoulder just fine, he wouldn't move the elbow.  Unsure of how to proceed, we called the answering service at his pediatrician's, and the nurse there recommended that we head to the ER.

It was right around bed time, both kids were in PJ's.  But, for better or worse, Lemon is pretty familiar with the hospital and knows that it keeps strange hours.  So, when we pulled him out of bed, put on his shoes, and told him that we were going to the hospital, his only question was whether he would get to watch videos on Daddy's phone, like he did last time we went to the ER.  We got there only to be greeted by name by the same nurse who helped us last time, and shown to the same room.  The doctor who examined Lemon when we arrived guessed that he'd fractured his humerus (a very common injury in toddlers, we've learned), and called for some x-rays.  It as a hopping night in the ER from an orthopedics perspective, and it took a while for the machine to get to us.  Lemon watched videos on Daddy's phone to pass the time.

Finally, the x-ray people got to us, and took some images of Lemon's arm.  These were good enough to confirm the ER doctor's diagnosis, and she paged the orthopedist.  As I mentioned, there was a lot going on in the land of bones that night so it took him a while to show up.  He looked at the existing x-rays and agreed that the humerus was broken, but didn't like the angle of the picture because he couldn't tell if the break went through the growth plate or not.  So he called for some more images.  While waiting for the x-ray team to come back, both kids fell asleep and more or less stayed asleep through all the remaining proceedings.  Eventually the x-ray people came back, and took more pictures at a different angle.  After some delay, the nurse managed to track down the orthopedist, who could now see that, luckily, the growth plate wasn't involved, so Lemon could just get a cast as opposed to surgery and pins.  Unfortunately, the x-ray team had failed to take pictures above and below the break to be sure that nothing else was wrong, so we had to wait for them to come back a third time to take more pictures, and wait further for the doctor to review the third set.  Eventually, sufficient documentation was in place to apply the cast, and we were cleared to go home at around 1:30 a.m.  Lime, upon hearing the letters "a.m." came to the conclusion that it was morning and woke up.  Joy.

The upshot of all this is that Lemon will have to have a cast for something like 8 weeks.  At the moment it's a good old fashioned plaster cast, but I'm taking him on a follow-up appointment to orthopedics on Friday to hopefully get it replaced with a fiberglass cast if the swelling's gone down.  So far he's putting up with the cast pretty well, and I've learned that the bag from a loaf of bread is pretty much exactly the right size to cover a toddler's arm in a cast at bath time.  I sincerely hope none of you need this particular piece of knowledge any time soon, but I'm just putting it out there in case any of you have a "normal" week lurking in your future.


Monday, April 11, 2016

Week 138: Three-quarters full

Amazingly, Lime is now 9 months old and had his 9-month checkup today.  He continues to be a little teapot, short and stout, being 20th percentile for weight but only 6th for height.  It's a charming combination in a young man of his age, though.  Everything checked out fine at the appointment, although we did get some disappointing news.  Our pediatrician, who has been taking care of our family since we moved here to Madison two years ago, is moving away.  Since Lemon's pulmonologist just left last month, that means we've lost the two anchors of his care team here in Madison.  Neither one has a definite replacement yet, either.  I suppose the pediatrician will be easier to replace, although I was very fond of this one--she really cared about both kids, and was very thoughtful about how she guided their care.  I also feel like the timing is really unfortunate--we're losing both of the providers who know Lemon and his history well at the same time, so no one who has that memory will be here to help get a new person up to speed.  Except, of course, yours truly (and Papa Bear).

My love/hate relationship with the G tube continues, although in the spirit of Lime's milestone I'm trying to view the glass as 3/4 full.  We've gotten up to our target of 3 cans of Pediasure 1.5/night with no issues, so that's great.  Lemon continues to have boundless energy and is getting heavier by the day--we have to be mindful about using good lifting technique when picking him up!  But, the wound site is continuing to give us trouble.  He now has some granulation tissue around the tube, which is a very common complication.  It's not a lot yet, but it is definitely painful and bleeds easily.  I sent a message to the surgery nurse looking for advice so we'll see what happens there.  Hopefully they don't have some kind of black mark next to my name for being one of "those" mothers. 

I think that last week was our first more-or-less normal week since sometime in November.  Normal in that Lemon was at respiratory baseline, no one was traveling, no one was in the hospital, and all the childcare arrangements worked the way they were supposed to.  I had forgotten what having all those things happen simultaneously felt like.  I had so much energy that on more than one occasion, I stayed up past 8:30pm reading a magazine.  I baked some bread.  I went running. I voted.  A girl could get used to this!  Papa Bear may need a bit more recovery time.

Monday, April 4, 2016

Week 137: Love/hate

I think it's fair to say that so far I have a love/hate relationship with the G tube.  On the one hand, I love what it's done for Lemon's health.  At our surgery follow-up on Friday we learned that he has gained 4lb since it was placed--that's a half-pound a week, putting him at the 50th percentile for body weight for his age.  By far the highest percentile he's ever achieved, and we haven't even reached our goal of delivering 3 cans of Pediasure 1.5/night (we're close, though, at 2.5). I love how much energy he has now, even when he puts some of that energy towards a category of behaviors that I will refer to as "being 2." I also love that we can give Lemon his liquid medications through the tube.  It's not often as a CF parent that you can take something _off_ the list of medical things your child has to do every day, and thanks to the tube we can tell Lemon that he doesn't have to take the medicines he doesn't like by mouth anymore.   

On the other hand, I hate just about everything else about the G tube.  I hate having one more thing to worry about.  We stopped antibiotics on Thursday, and so far so good, but of course I'm watching like a hawk to see if the infection comes back.  The nurse at our follow-up thought the skin around the tube didn't look totally healed yet, so I'm spending more of my day than I would like cutting little custom dressings to go around the tube, taping them together, and checking to see if they've fallen off yet thanks to Lemon's active lifestyle.  We're always worried about the button snagging on something.  I'm always keeping an eye on the clock during dinner to see if it's time to start pre-digesting the Pediasure yet.  When Lime wakes me up during the night, I'm always checking the clock to see about how long it is until Lemon's feed will be done and I have to get up in the dark to stop the pump and flush the tube.  I know it's a little thing, but I hate how it looks.  I hate how there's a weird plastic device popping out of my otherwise perfect-looking little boy.  I also hate how his skin, like mine, is sensitive to every medical adhesive ever invented and so his stomach is covered in the red marks of adhesives past.   I also hate having an IV pole in his bedroom.  You'd think I'd be used to medical equipment in his room, since there's a lot of it and it's been there a long time, but there's something about the IV pole next to the bed that really gets me.  I'm sure we'll all get used to these things with time, since it's only been two weeks, but I feel like it's occupying a lot of our thoughts right now.

In other news, Lime got his second tooth and is working really hard on a third.
I took Lemon to his first-ever birthday party of a friend from school.  He had a great time.  You will be surprised to learn, based on these photographs, that there were about a dozen other children present at this party.  None of them shared Lemon's intense fascination with the toy space shuttle, however.

With all the weight he's been gaining, Lemon started to outgrow his old clothes, so I went on a little shopping trip for him and came home with his first-ever pair of jeans.  I cannot begin to tell you how excited he is to have jeans "just like Daddy."  I fear that there may be a situation tomorrow morning when he discovers that they are in the laundry basket and not in his drawer...