you make my heart sing!!!
Or in Kendall’s case – race out of control. And we have no idea what the wild thing is. We just know it sucks.
In true Kendall fashion – she decided to throw another monkey wrench into my nicely planned SANE week. So usually in the morning if I hear her pulse ox alarm going off, it’s because she is awake and has nothing better to do with herself than either play with her tubey’s or the big red glowing thing on her toe (the pulse ox lead). Usually the glowing toe wins. Messing with the lead makes the machine crazy, so it just starts alarming, and that is usually my signal/alarm to wake up and go get her! So today when that happened, I got out of bed and went to put my eyes in, brush teeth, etc. In essence, i was just kind of taking my time, fully expecting to walk in to her sitting in her crib holding some piece of equipment that should be otherwise attached to her, smiling at her accomplishment. Instead I walked in to the machine flashing a HR number in the 200’s (the highest I saw it get was 217), i don’t even remember what her sat number was (the number that measures the amount of oxygen circulating in her blood – it should be above 95 if she’s awake typically – bad is anything below 90 for the most part for her).
Now in a baby, 217 might not be that high, if, say she was taking a spin cycling class or doing some high impact aerobics for an hour or so. Neither of which was the case. in fact, she was still asleep. And was very very warm. Which is also very unusual for her. She usually prefers to “de-fever” and drop to a nice cool temp of 93-94. I knew something was up, but had NO idea what to even make of this. As a point of reference – I don’t think Kendall’s HR has ever gotten up into the 200’s before – not even in the NICU as a newborn, not even in the PICU after surgery when they were worried about her being “tachy” (fast heartrate) – it was only up into the 180’s at that point. I have seen a few nites of her being 170-180, even a few 190’s – all while sleeping. They usually do preclude SOMETHING – although its very hard to pinpoint how or why or what causes them. So seeing numbers up into the 200’s today definitely had me putting my “Nurse mommy” hat on and trying to think of WHAT to do to stop the rising HR. The alarm is set to go off when her HR hits 190 and stays there through a few cycles (maybe 20-30 seconds)? And it had been going off for a good 15 minutes before I got in there. I KNOW! I feel like a horrible mom. I am thinking i might need to get one of those baby video monitors so i can start seeing what is going on instead of just flying into there every time I hear an alarm going off! Or I should just start sleeping in the room with her…
anyways – she had definitely been dealing with the HR thing for a few minutes by the time i got her downstairs. I didn’t even unhook her from the feeding pump or monitor – i just picked it all up and brought it down with me! Her temporal temp (which isn’t quite as accurate as other methods – but it’s easy and quick to get!) was 100.4 – which is four degrees above her normal of 96.3. So I loaded her up with ibuprofen (because she had gotten 2-3 doses of tylenol through the nite before (about 6 hours from her last dose of the tylenol) – stripped her down, put a few cool rags on her, and even stepped outside with her in the amazingly mild almost springlike morning! none of this was having a big impact on the HR though – it was coming down to the 180s, but going back up within a few minutes. Then I got the brilliant idea to try to make her “bear down” (as if having a BM) by taking her rectal temp. I had read something about it a couple weeks ago when we first started seeing the HR elevations. didn’t know if the rectal temp thing would work or not as she only “responds” to it about half the time, but within half an hour she was down into the 170’s and seemed to not be as symptomatic.
We had about 932 places to be today, so during speech therapy I packed up food into the backpack for her feeding pump (mostly pedialyte as i figured she would need the fluids), attach a regulator to a tank of oxygen without blowing up the house, and charge the pulse ox monitor. All of that equipment then came with us to the eye doctor (a fun three and a half hour shindig that deserves its own post, truly), to occupational therapy, to lunch, to school pick up, to the chiropractor, to dance class drop-off, and finally home, where she got re-connected and went right to bed. It was a crazy day. i am SOOO glad we have the O2 – even though it IS an adjustment and i am sure it was never meant for continuous 24 hour use. i am hopeful that if she doesn’t get another weird fever we will be able to keep her HR down and get her off the O2 tomorrow (at least during the day), and hopefully catch her back up on some good calories tomorrow. She hasn’t been real interested in food for the past couple days, so I have to be creative with getting super-high calorie foods into her during the times she DOES want to eat, simply because she seems right now to not be tolerating a high amount of food into the J-tube (i can’t get her rate above 32 ml’s an hour – an ounce an hour). At that rate, even if she went 24 hour, round the clock feeds – she would only get a little more than 25 ounces. Meaning that she would have 15 ounces to make up orally (about 250 calories). Which isn’t a big deal on MOST days – which we clearly aren’t having a “most” day around here. Or even a “most” week.
So that’s the update for tonite. i know some of you had no idea this was going on – others were waiting for FB updates all day!
We thank you so much for your continued prayers and thoughts! hopefully tomorrow has lots more good news and possibly even an official “over the hump” diagnosis!
oh and in kind of weird/good news for those of you who have seen my dragon eye of ebola the past week – it appears i was either to something embedded in my contacts (which did get changed out today), or i am possibly allergic to the silicone that they are made of (which would at LEAST explain the crizz-azy hivey reaction of a couple weeks ago). Again – i will try to have the eye doc update tomorrow!
see you crazy people on the flip side.