Today was a very busy day for my little girl!
It started out at 6 am when her heartrate skyrocketed for no reason (they expect it to be high after one of her nebulizer treatments or when she is spiking a fever), so that started somewhat of a flurry of activity. They ordered a chest X-ray, an extra neb treatment and two residents had to come check her out. Prior to this, she had had a relatively peaceful, restful night, so that was a huge answer to prayer.
They actually got the X-ray results back quickly (imagine that – a medical system that actually WORKS TOGETHER!!!), discovered that she also has pneumonia on top of the RSV, and came up with a game plan for attacking that. What I love about this place is that its not just doctors making decisions based on paperwork filled out by nurses. They are actually in the rooms, examining the babies for themselves, discussing WHAT they are doing, WHY they are doing it and then, get this, they ASK OUR PERMISSION. I feel like we have been dealing with a medical model based on third world countries, and we are all of a sudden in this place of enlightenment.
Medical Nirvana – oooommmmmmmmmmmmmmm.
Anyways – residents attacked the pneumonia by ordering antibiotics, calling the attending physician for a consult and then all sitting in here while he went through his differential (explaining what was going on and what we were going to do).
During this time, the technician came in to start her sweat test for Cystic Fibrosis. CF has kind of been on the table as a possible diagnosis since we started down this path of, well, life for Kendall! Since the beginning she has not gained weight well, has had noisy breathing, reflux issues, milk protein allergies, etc etc. Something has always been NOT RIGHT with this baby. We know I am a carrier for CF, and Ben went through an initial screening for some of the more common mutations that lead to CF, and was negative. So we assumed/thought we were in the clear. Upon research however, and having multiple medical professionals tell us that she needed a full “workup”, it did seem like there was still a pretty large chance that she could have it. So Dr. A, her main physician, the attending doc who admitted her as a special case from Rush, decided to eliminate the worst culprit first so we could start getting to the root of the real problem.
So praise the Lord – that test came back negative! It’s graded on a number system – if your level is, (and this is not the exact scientific numbers but close enough for government work), say 1-35, its negative, 35-50 is “borderline” and above 50 is positive. SOmething like that. Anyways, her number was 14. So DEFINITELY negative! God knew I needed some STRONG evidence because this has been really weighing on me, just because she does LOOK so symptomatic of CF if you read anything online about it. So having it be SO low was just a huge breath of relief. I actually didn’t believe the first two people who told me it was negative (the geneticist and the genetic fellow) – it only kicked in when her nurse excitedly pulled us aside and told us it was definitely negative! She was so excited FOR us…again I am just overwhelmed at THIS medical model…so different from what I have ever previously experienced.
Anyways – after the sweat test and “rounds” with Dr. Aljedeff, in came the neurologist to do his assessment. He put her through a few manual tests and then sat and talked with us. Basically from this consult we learned that there are two kinds of “floppy kids”: kids who are floppy when they want to be, but boy you better WATCH OUT if you try to do something to them cause they get strong REAL fast! and then there’s kids who are floppy at rest, and then still floppy when you are clearly putting them in distress. Guess which camp our little fighter falls into??? Definitely a fighter! EVeryone who comes in to work on her comments on how strong she is when she starts fighting them – cause she just looks like a sickly scrawny little peanut, and then you go to try to take her blood pressure or insert and IV line and boy do you get a surprise! So that, on top of the fact that apparently I had some hypotonia issues as a newborn but am CLEARLY fine is very encouraging to the neurologist. So he ordered a BUNCH of enzyme tests (through blood urine and stool), and an MRI. The caveat with the MRI order though is that she has to be sedated and they aren’t so much excited about sedating a child who can barely breathe when she’s awake. So that one may be tabled for a few days/weeks depending on how she’s doing. But overall an encouraging visit. He didn’t bring up muscular dystrophy or really any other possible diagnosis that he is looking at, just that he is going to try narrowing down his approach to specific diagnoses based on the blood test results.
Next came the GI doctor to talk about her nutrition and why she isn’t really retaining her calories. They just took a basic history and again deferred to getting results from the bloodwork.Which was semi frustrating because to me the nutrition is one of the BIGGEST pieces of this puzzle. but I can understand needing more info to narrow down what we start attacking. She is still on her NG tube for continuous feedings. In a total show of His timing, it is ironic that I have had a freezer full of breastmilk, but have instead been supplementing kendall with formula, and just continuing to pump and store any extra. No real reason behind this other than i just really wanted a freezer full of milk. It makes me feel good. Well now we know why. My supply has TANKED the past few days between all the stress, the lack of sleep, i am not drinking water like I should, i am not eating that great, and at Rush they wouldn’t bring me a pump that whole first nite and they wouldn’t let me breastfeed her. So i am DESPERATELY trying to re-up my supply to keep up with her current feedings, but in the meantime, Ben is able to bring PLENTY of bottles of frozen liquid gold to keep our baby healthily and happily fed with momma-milk until I can get back up to speed. Isn’t God good?
The next specialist to come in was the geneticist and the genetic fellow. Who was a woman. HA! i slay myself sometimes…
Their consult indicated that she doesn’t appear to be symptomatic externally of any syndromes in particular. Since there is no obvious external characteristic by which they can pinpoint, oh yes, she has “this disease” based on her lip shape or finger length or purple-people eating tendencies, they assume that the problem lies somewhere on the spectrum of her digestive tract. There’s 3 main causes of failure to thrive organically: not enough going in, which they don’t think is the problem because they are confident in my milk supply + supplementation being enough to encourage growth in normal infants. #2 is too much coming out – and again, that’s more like the opposite of her problem. She rarely has any output compared to other infants her age, especially those taking in as much as she does. Which leaves us with #3, something’s wrong metabolically.
So again, more bloodwork and urine/fecal cultures. (I like to say the word fecal. it makes my tongue happy. try it. say fecal out loud. on a side note, my cousin used to use the word feces in lieu of another expletive describing umm you know, feces. It always cracked me up to hear him say it.)
In between all of these doctors and nurses coming in and out to turn off alarms on her monitors, give reports, get histories and do checkups, the respiratory therapists come every three hours to give her nebulizer treatments which she HATES with a passion! I do not know why. When I am all crackly with bronchitis, nothin feels more relieving than a good hit of albuterol. Of course then i bounce off walls for an hour, but the initial hit is glorious. Not so much to Kendall. They added in this lovely little after effect of now pounding on her chest with what amounts to a nerf hammer. It’s good times.
After a full day of tests and doctors and procedures they decided they had to start an IV line to deliver her antibiotics. They blew one vein, one of the few she has left, called a NICU nurse to come do it, got the IV started on the 3rd try, and then had to find a place to draw 8 VIALS of blood from. Now, 8 vials is a lot for an adult. I was convinced they were pulling out easily half of her blood volume. They assured me they were not. There were no veins left to poke except for two that bulge out of her forehead when she is good and mad. Which, after the IV poking, she certainly was. I am not sure what happened next because by that point I had had enough and had to leave the room. I couldnt bear hearing that pitiful little raspy cry anymore. She’s just so worn out. She’s tired of fighting but she has plenty of fight left in her. So they finally get all that blood drawn, we come back in, and they immediately start an Echo (ECG I think) of her heart. Basically an ultrasound to tell us why her heart is working so hard to help her breathe – does that mean the heart is healthy and just working overtime to pull double its weight to help out? or is there something wrong with the heart making it slack off? That took a good half hour to complete.
And then she got to rest. Finally after a FULL day of doctors and horrible things (a rectum catheter?!?! no thank you) that no baby should ever have to endure, my baby girl is resting. An amazing woman from my dad’s church brought me dunkin’ donuts and this awesome little light up toy for Kendall’s crib, which I immediately put in there. She was, for just a few minutes, acting like a normal baby who was mesmerized by the pretty lights and noises.
and then she conked.
I hope she gets to sleep for a few hours now. Inevitably they will come back in to check her vitals, give another nebulizer, poke and listen to her chest some more…but for now she is peaceful. Happily sucking away on the binky while her tummy fills with mommy milk through a tube in her nose and her lungs are filled with good medicated oxygen. She is in a good place.
She is held up by your prayers, that much I know.
You know, last week I taught in Preschool Place at church. It was a last minute change with another teacher, but I know now why I was supposed to teach. Our lessons each week have what we call “Our Special Words for the Day”. We say these special words over and over and over again throughout the lesson, game time, coloring, and singing to get them to really stick with the kids. We say them in our TEXAS loud voices, and our mousy whisper voices. We squeak them high and we belt them out low. And by golly those kids KNOW those special words by the end of our lesson! Last week the lesson was on Jesus healing the blind man, Bartimaeus. And you know why he did it? (these are the special words for this week) – because
“JESUS CAN DO ANYTHING!!!”
Do you believe that? Do you believe in a Jesus who can just as effectively today heal a little girl with a world of issues as he touched that man’s eyes and healed his blindness? I do.
I am claiming these words for her tonite.
Baby Kendall – Jesus can do anything – and I know He can give you rest and healing.
Thank you all for praying. And for watching my other kids and loving them like they’re your own. I know they need it so much. I feel so torn – I can’t be everyone’s mommy all at once for a few more days and that is killing me. But God is holding us together – and you are all the glue he is using. So thank you – for everything. The food, the diapers, the funny emails just because I need to laugh, the positive notes you leave on Facebook and comments here – everything. It all means so much to us.
More updates later.
t and K4 – live from the 2nd floor peds unit. Keepin’ it real homies.