(yet another) post-op clinic

we went for post-op clinic yesterday, since we're still in the post-op period, and we needed follow-up after our admission. and wow, clinic was interesting. a mixed bag, if you will.

when we got there, i mentioned that asher had just had a chest x-ray the night before in st thomas (oh, yeah. forgot to post that. i took asher to STEGH emerg on tuesday night because of a grey spell and puffiness. turns out his rhythm was acting up, but we came home), but liz came out and said that she wanted asher to have another x-ray done because the report from stegh said there was no pleural effusion, but she could clearly see one. not surprising, since i'd seen his x-ray and I could see it! then she asked if asher was still on the fat-free diet, and i calmly said "yes" and she nodded and sent us downstairs. to x-ray. she didn't banish us or anything. lol

we got back from x-ray and waited for a few minutes to be called in. asher walked around, happily playing with the train table and his own train that he loves. he was wandering around that table for a good 10 minutes, laughing, reaching all over the place... pretty active, actually. (remember this paragraph when you read the next part.)

so, we got called in for vitals and ECG. asher's sats were 91-93% (you'll note, his sats the other day were 97%, so this is markedly decreased now). and his heart rate... ugh. that's all i can say. just... ugh. after all that activity, his heart rate was... low 50s. that's right, an active heart rate about half what his resting HR was pre-fontan. then the ECG, which showed the same issues from the night before at STEGH. i won't go into the details, since i'm sure most of you won't know what i'm talking about, but i'll just say that it didn't look the way they would like it to. sigh.

next, weight and height (and before i continue, my apologies to my non-metric readers. i'm a hospital mom, what can i say? lol). he's 93 cm tall (a little over 3 ft), and weight... 13 kg. somehow, this kid of mine has managed to GAIN weight on a no-fat diet!! wha-?! although i suspect i know why...

then we went in to the room and liz came in. liz sat down and said that she can see a pocket of fluid, which is quite concerning, and his right diaphragm is lower than his left one, which could be from all the fluid before, so we need to make sure asher does a lot of deep breathing, coughing, bubble-blowing to train his lungs to take air down to the bases (air entry to bases is still decreased, btw... for those who understand that sentence). and let me tell you, she was so full of information, spelled out exactly what the problem was and what we need to do and what might happen and what might be causing all this... she was very informative and helpful. then she got up and said that she would go get dr welisch.

who sat down and spoke about the "concerning" pleural effusion (pocket of fluid). we have to keep an eye on this again, since clearly it isn't improving, and this will hinder lung function and all that, so it's a problem.

then she continued.

"the other problem, and it's a much bigger problem, is the bradycardia and juctional escape rhythm that asher has now." and she talked at length about all of this, and she seems to be thinking now that asher will still likely need a pacemaker in the near future. (and fyi... pacemakers are dr welisch's specialty. handy, wouldn't you say?) i said that i assume he will need one, since the hope was that, by stopping the carvedilol (which slows the heart rate) his heart rate would pick up, and it's been a week and a half since we stopped it and there hasn't been a change. she agreed, saying that it definitely would have done something if the beta-blocker was a factor. she is very concerned about these arrhythmia issues, and will be keeping a very close eye on asher now. we're going to have a few holter monitors (24-hour ECGs, basically) over the next little while, beginning next week, to see if there is any improvement.

then she asked...

"does he turn grey?"

i waited till the wave of nausea passed before i answered, "yes. quite often, actually. that was why we were in emerg last night."

"does he get dizzy? has he fainted?"

again, wait for the nausea to pass, then, "he gets dizzy quite a bit, but he hasn't fainted. last night at supper, he was chatting and playing and goofing around, and then suddenly he turned pale, his eyes lost their focus, and he gripped the table with both hands because he was swaying a bit. he didn't seem able to hear when we spoke to him unless we were quite loud, and i suspect everything was black, because i don't think he could actually see anything."

"ok, well, we will keep an eye on this, because this is very concerning, and we will do the holter next week. sometimes these things improve, but they don't always, and often a pacemaker is a good idea in kids once they've had the fontan. so we will see what the holter shows us next week, and we will watch this very carefully."

and then i asked her to call our paeds because she would like some direction for when asher comes to emerg having crashed with a heart rate in the 20s or 30s. (and before you think that can't happen, asher's HR when asleep has dipped into the low 30s, so it's a distinct possibility.) and i asked dr w for some information about arrhythmia so i can learn about it, and she said that she will get me some information for our appointment next week, and she will also give me information about pacemakers, as well, because i should know about that, too.

so there you go. some good stuff, but mostly bad. for those who don't understand all the technical jargon, the gist is this: asher is frighteningly unstable right now, and has two major issues going on that can each cause huge problems on their own, and we're dealing with both at the same time. chylothorax can be fatal when it's not controlled (and asher's seems to be ignoring the diet right now), and then there's the arrhythmia, which is the "much bigger problem." yeah.

so please pray/cross crossables/send healthy vibes for asher. he's not in great shape right now... though would someone please tell him that!!! he hasn't stopped playing or chatting since we came home from toronto!!! LOL