{Breathing Easy}.

Not me, so much. I managed to pick up my own version of ebola virus and can hardly hear, talk or breathe through all the mucus. BUT – my baby is doing much much much better.

This morning was still a struggle. I could not update this morning because she was still so miserable, and watching her be miserable was making me more miserable. But as my brother and his family prayed with me over Kendall last nite, there was a definite peace about the situation. As I laid my hands on her tiny little heaving chest, rattly with the sounds of all that mucus trying to move around, I felt as if Jesus put His hands over mine, and said that He was taking care of it. He knew what her little lungs needed, He has held them in His hands for far longer than they have been in mine. And from that moment on, it seemed as if she was breathing a little easier.

She still had a lot of pain throughout the nite – we never could pinpoint the source of it. Was it her feeds that we had restarted at half strength, half rate? Was it her IV that has been giving her fits and starts since they placed it? Was it more mucus plugging? Probably a combo of all of the above, and, if she feels anything like I do at the moment – just the sheer hell of tons of pressure building up in small sinus cavities. Then this morning she was back to her super lethargic self, not even giving the Respiratory Tech that she loves “fist bumps” like she has done the past couple days. He asked me if she had a fever and I said, no, not that I know of. When I went to feel her, she was indeed burning up. and she had that horrific smell to her of decaying death that usually signals one thing – UTI (urinary tract infection) – her other archnemesis besides pneumonia.

It occurred to me at some point in my semi-sleep (because there is no such thing as REAL sleep in the hospital unless you are the one with a needle stuck in your hand getting the good stuff) – that this was probably not her kidneys so much as it was her bladder. This is not a new pattern for Kendall – she has a history of holding urine for hours on end, then flooding everything in sight. We don’t know why she does it – but it does contribute to her urethral reflux (pee going backwards up into the kidneys), which is what contributes to the overwhelming UTI’s that land her inpatient. Anyways – I started to think that maybe that is what we were dealing with, and smelling her urine this morning just pushed me closer to that theory. And in spite of the fact that i mentioned this to the senior resident at 8 am, suggesting they may want to cath her so we can a.) pull fluid off of her like we need to, and b.) run a UA to see if this is why she is still spiking random fevers – they still managed to not walk in here until 2 pm as if they had just discovered the recipe for penicillin themselves and proclaim “We think we should cath her so we can run a UA. this will also help us maybe pull some of the fluid off of her body and get her breathing easier again.”

Luckily for them, my sudafed overdose was kicking into pretty high gear by that point so i just pinned Kendall down and said “Gitter Done!!!”

After that she got another bath which worked really well to help cool her off even more (than the tylenol suppositories we’ve been having to give), and THEN things really started looking up. Maybe it was that she had peed a lot right before the cath, and then adding in all that they pulled off for that, and she got all new leads put on giving us a little bit better picture of some of her vitals – but we definitely started to see a lot more of KENDALL coming back. And that was a very welcome sign.

rounds with Dr. A were full of a lot of theories but he finally goes, let me break it down for you like I had to do back on your first visit and we had multiple issues going on. so…

1.) She has RSV, this makes her sick, makes her HR elevated, her breathing harder, etc etc.

2.) Her presenting issue was the metabolic acidosis, presumably BECAUSE she was fighting the RSV. this also contributed to the wacky vitals and the work of breathing.

3.) Her ‘man-made’ problems – which is, now in trying to correct #1 &2, we have created another issue which is the fluid overload.

So – issue (except he says it like this = EES-you) number 1 – she is doing ok with. I would expect that she will still be “sick” from that for a while, but nothing that you can’t handle at home. EES-you number two – her bicarb is bouncing back nicely and she is about as perfect as  you can hope for on her metabolic labs. {side note – I didn’t want to point out to him that this was likely due to the fact that all that oxygen is probably making her retain CO2, which is in this case is actually buffering the acidity, but normally isn’t a good thing, plus she is still getting sugar water pumped in, but ok, she has perfect looking labs, i’ll take it}. So those two things aren’t really EES-you’s anymore. EES-you number three though, is still probably complicating the other two, and is right now what is giving us a run for our money, and that is, because she is still fluid positive, she is still having a lot of pressure on her lungs. we are starting IV lasix (strong diuretic to help pull the fluid out of her tissues and run it through her system like it should). referring back to yesterday’s analogy of the freeway with no exits? we are about to open ALL the exits. Because her metabolic labs look so great, and because we feel like her tube feeds are helping to keep her hydrated appropriately, it is worth the risk of possibly pulling too much off, because she’s got a pretty nice reserve available to her still!

now – the one last complication (psshhht – yeah right – this is KENDALL we are talking about here!) – is that at times, her crackliness is decidedly right sided, while the left sounds just about clear. for those who have been reading along for some time, and absorbing all the vast medical knowledge here at TerraTalking University of Faux Med Degrees, you’ll remember that little miss aspiration likes to swallow food into her right lung – giving her “aspiration pneumonias”. Multiple times. An absolutely eye-rolling amount of times. Dr. A isn’t quite ready to call it that yet – this COULD just be that her left airway is collapsed off again, so us hearing “clear sounds” could just be, in fact, because its not doing its job correctly. And, who knows, maybe she just decided to clear off her left side first. The Lasix will help us determine a little better what we are dealing with here though, but i have a feeling that if little missy has in fact swallowed formula into her lungs yet again, we may have no choice but to go NPO for the winter. I hate even breathing life into those words. But if this is what we need to do to help get her better, then we will find ways around it.

So – our discharge criteria, as laid out by Dr. A, and hopefully not effed up in translation by doogie howser, et al:

1.)Wean her oxygen down to 1L. She has to stay above 94% on 1L. She has been staying near 93-95% on 2L most of the day, but is right now at 96% on 2L. Since she looks the absolutely most comfortable and sounds the least congested I have heard her all day, i’m going to let her get a real good nap on this level of support. Hopefully when she wakes up, she will want to sit up and play a little bit again, and we can start pulling that number down. This means that she will likely be hooked up to oxygen for the better part of the days for a while also, just to continue to help her lungs heal from this virus as wholly as possible. Especially if she does have pneumonia again.

2.) We have to wean off the IV fluids and maintain at least half strength continuous feeds. Yes we still have stuff pouring out of her G-tube. Even if I clamp her off while she’s eating, everything is just running right out an hour later still. BUT – it’s mostly just tummy juice, vs. intestine juice like have been getting. This means that while things aren’t fastly flowing forward, they are at least flowing FORWARD again. We think we will make pretty big progress in this area based on how well she has already been responding. it means that she is looking at probably a week or more of continuous feeds all day long again (vs just the evening/night time like before this), but at least she will be HOME!

3.) I have to say that I am comfortable with how she looks, that she is “ok” enough to come home. And truly, I haven’t had that comfort YET. She has just been pulling too many crazy things, and her “good times” are far too short and too long between to tell me that she really has gotten over the hump. BUT – I have been encouraged by things for the last couple hours. I really feel like tonite will be that final push towards the peak of the hill, and then it’s smooth sailing from here.

 

So that’s where things are tonite. Definitely on the upswing.

We thank you for your prayers. Without them i cannot even imagine where we would be. My heart aches for all of our friends who are also struggling through illnesses and pain tonite. I pray  that Jesus upholds all of His special little ones who so desperately need His healing. If you are inclined to also lift them up in prayer with me – think of Avery, Eithene, Pax, Samuel, Riley, Maggie, and Caleigh. i know there are so many others…

Here’s to hoping we have this little mischievous little troublemaker back soon!

Terra

The solution and the problem.

I read some crazy hippie embrace the inner you happy horsecaca quote on Twitter today that went something like “Your problem’s solution is contained therein”. Now this had to have been either a rejected script for Yoda in Star Wars or some cheesey fortune cookie insert Happy Dolla Chow Mein, because it just doesn’t make sense. It’s deep. Existential even. Maybe I’d understand it better if I had special brownies or something…

I digress.K4birthday 031

Anyways  – it made me think about what we are dealing with for Kendall right now, and the medical term for it is (more Latin, watch out) “Chasing our {bleeping} tails.”

Last nite Kendall started to sound very “junky”. (more medical terms!) Now, I am the first to admit that I have thought my kids for SURE had pneumonia cause you can hear them moving mucus around and it sounds like its in their lungs. Her and Kaylen have both  had that for a week. And kendall’s lungs were always “CTA”- clear to auscultation (listening with a stethoscope). So i really haven’t ever worried about pneumonia or anything more sinister than “just a cold”. But last nite she just sounded different, and sure enough, with the stethoscope, you could hear those raspy junky crinkles and crackles indicating that mucus had finally arrived to settle in to her nice cozy little airways. I was worried, sure, but I knew Dr. A would handle it in the morning, and I was feeling about as good as a piece of meat hooked up to a truck bumper and dragged through Death Valley. (I am hoping that I am not getting the ebola virus that seems to have claimed our family as its long lost home). At some point in the nite I hear the NCT come in to do her assessment, and then the lights came on and another nurse comes in.

then I hear a conversation like this:

NCT (nurse care tech – they are like, half-nurses): It’s 39.3

Nurse: Check it with this one.

NCT: It’s 38.9

Nurse: Check the other ear.

NCT: It’s 39.1

Nurse: Take it axillary again.

{long pause because taking an axillary temp is akin to typing out your college term paper on a speak and spell}

NCT: It’s 38.9

At this point I was about to jump out of bed and be like – It’s PROBABLY going to be high no matter where you take it because she is SICK. It was just like some bad Abbott and Costello routine. I don’t know if they took a course in nursing school that said – if you don’t like the first set of results, keep taking them until you hit a magic number that makes you feel better – or if they just really couldn’t believe that a sick kid might actually have a fever…either way. They came over and shook me awake to let me know that she had a fever but that we weren’t going to run cultures (code for – no one wants to try to stick your impossible to stick baby in the middle of the nite because we still aren’t sure why the thermometers keep giving us these high readings, but you go on back to sleep now and don’t worry bout a thing!)

So this morning our new nurse comes in to ask how the nite was, and I relayed my concern about how junky she was and her increased need for oxygen overnite. He was very calm as he explained that yes, RSV can do that to kids’ lungs. I about hit the roof. When, praytell, did these positive flu swab results come in that no one felt the need to pass along to me???? He seemed genuinely shocked that I did not already know this. Trust me, buddy, no one is more shocked than me!

So – at least we had a REASON. And now we have a monster we can attack vs just continuing to cross our fingers and throw Hail Mary’s toward the end zone. Our plan was to “wait for Dr. A to round”…which finally happened around 1:30.  And herein lies the problem (and the solution…ahhhh wise grasshoppa, listen….)

So the SOLUTION to Kendall’s problem (which is a myriad problem as usual) – but the bottom line was that Kendall needed IV fluids on Friday. This would alleviate the dehydration from all the tummy juice she was pouring out of her G-tube, as well as from not tolerating full feeds for about three days before that; it would also help correct any metabolic acidosis she was in (which she tends to get into quickly, as would be expected when your body doesn’t know how to complete its own metabolic cycle), and being well hydrated would allow her heart to not have to work as hard, thereby bringing her HR down to a more acceptable level.

As of last nite, we were waiting to see what 24 hours on the fluids had done, because she was still acting “acidotic”, and (as I have now come to find out), she was indeed both dehydrated and moderately acidotic when we got to the ER on Friday. If her labs had not improved by last nite’s lab time, we were going to have to do some maneuvering to try to add to her fluids what her body wasn’t producing. In a weird twist that can only be designed by an amazing Creator, the byproduct of giving her more oxygen is more CO2 (carbon dioxide), which is exactly what her body needed to help re-buffer her system. So – her labs were looking MUCH better by last nite, but still not “out of the woods” great.

And that brings us to today’s problem, which is kind of caused by the solution – and that is that her kidneys aren’t processing through all those IV fluids. Now we know her kidneys are sometimes “iffy” on good days. She does not have a kidney “defect” (other than the reflux from her bladder to kidneys), but her kidney labs and scans have always had a “slightly abnormal, let’s keep our eye on this” quality to them. however, this virus has managed to rob energy from LOTS of different places to keep things moving (read: keep her alive/not crashed out), and apparently one of the areas that got ransacked was her kidneys. Meanwhile, she is left with a LOT of fluid in her bloodstream that doesn’t have an exit. Picture the Tri-State on a Friday afternoon at 4, and EVERY. SINGLE. EXIT. is under construction. Those cars have to go somewhere. so they start pulling off the road and just going anywhere they will fit. That is what her fluid is doing. She is “third-spacing” it, meaning her tissues are now absorbing all that excess. For a few hours, that was probably an ok thing. she was so dehydrated yesterday that she had lost a little over 2 lbs from our weight check on Wednesday through our dietician, and skin was literally  starting to just hang off of her bones in places. So the plump cheesy poof look was really workin’ for her for a while.

But i remember picking up her hand an hour or so before Dr. A came in and going – holy cow, she K4birthday 007a is PUFFY!!! And sure enough, she is. Now – she is making SOME pee. It’s not a horrifically DIRE situation, yet. BUT – all that extra fluid is definitely putting strain on her lungs. Now, a good healthy set of lungs, might be able to breathe through it all in a few days. Kendall’s lungs which are crapariffic on her best day, and are President of crappylung city when she has, oh, say RSV, you can see where the problem is coming in.

The fluid is both congesting her lungs and causing all her other puffy tissues to press on her lungs. This is making them inefficient at the work they ARE doing, and this is why she is sitting on 2L(liters) of oxygen tonite and still not keeping her sats up, still sounding like a mucus factory, still tiring out after 10 minutes of sitting up and “interacting” – i wouldn’t even call what she is doing playing – its just interacting.

So – you say, ok just turn off the IV fluids and give her something to drink so she pees, right?

Except for two things.

a.) she could never drink enough to make herself fill her bladder without puking it all up first – her gut just doesn’t work that fast.

b.) everything she does drink right now is coming right back out of her G-tube, as are lots of fun colored juices from her J-tube, lower down. Yes folks, things are flowing BACKWARDS. (no not poop. yet. i don’t think….that’s just gross.)

ok three.

c.) even if by some miracle I could just hook her up to the pump and shovel fluids into her via her J-tube, we have a high suspicion that she isn’t actually absorbing a whole lot of fluid through her gut. The suspicion comes from the fact that she had BEEN on near continuous gatorade through the pump for about 24 hours before going to the ER, where she was still pretty dehydrated. (and obviously there are other factors that could have affected that, but the bottom line is, her gut absorption seems to take a nosedive when she gets sick. The end.)

And that brings us back to the top of this tail-chasing cycle, where, if we can’t keep fluids going in, we can’t fight the virus, get her GI tract to work, or stabilize acidosis.

We need fluids, we can’t get rid of fluids, fluids are bad, but we need fluids.

Is anyone else as dizzy as me yet?

So what I know is this: We have turned her IV fluid rate down as we have been able to turn her feeding rate UP. This was HUGE. Typically, it takes me a good two days to get to this point when her gut decides to take a vacation. THAT my friends, is prayers at work. Thank you!

we have taken a chest x-ray (I love that they use the portable machine on the weekends – I hate having to load up in the wheelchair to go down to the ER x-ray room on the weekends). We are actually HOPING that she has pneumonia (I know, have you ever prayed for someone, besides maybe yourself on a really crappy week of work, to HAVE pneumonia?) If her current lung crappiness can be mostly blamed on mucus hanging out in there (pneumonia), then we can reasonably assume that her kidneys haven’t taken as much of a hit as it seems like, plus we can actually throw antibiotics at what is most likely bacterial pneumonia. Again, this leads us back to the whole “will her gut actually absorb and utilize the antibiotics” debate, but right now I’m not gonna go there.

If her chest x-ray is clear….then we have to have some words, Dr. A and me. We will need to come up with a plan to keep her properly hydrated, and yet pull some of the fluid off her body. we have used lasix (a strong diuretic) before when she has had bad lung issues, but she was not dealing with this level of dehydration before. it would not make a whole lot of sense to give her a dehydrating med when she is, well, dehydrated. But we may have to make that choice if her body doesn’t decide to start getting some of the fluid traffic off the freeway. If we have to go this route, and I hate to even breathe life into this, but it may take at LEAST a couple days to find the right balance for her, and would more than likely involve a lot more lab draws (which have become their own special kind of hell because its hard to get to her blood through all that fluid). This is the option I hope we don’t even have to address.

There is also some weight to the theory that she is just really responding super crappily to RSV, but, dr A believes that likely, we are dealing with that in addition to one of the above scenarios. Pneumonia or kidney shutdown – pick your poison.

Pneumonia at least is the devil we know. I can take a kid home with pneumonia. I am not being cavalier about it – its just that we have been down that road before, and pneumonia has a relatively predictable course. It scares me in places i don’t talk about at parties to think about her getting ANOTHER infection , or what this means for how the rest of our winter might go. i’d love to think that this is it. LOVE TO. But I have to be realistic on some level. 

k4b This is life with Kendall.

It means that you sometimes have to miss your specially planned weekend away with a mommy friend, and that the suitcase you packed full of cute things to wear to a nice dinner and shopping on the Mag Mile are now your hospital clothes. It means that you will get down to the WIRE while trying to decide if you are still going to make it out of town for your planned holiday get-togethers. It means that even out of the blue, you might still end up in the hospital when you least expect it. And it means you get to experience life with one of the bravest, most loving, strong and beautiful little girls ever to live. (and her amazing sisters) It means you find the miraculous among the mundane, and you learn how to fit a family of 6, plus friend plus grandparent, into one small hospital room for family time together! (it doesn’t work well, but its the effort that counts right?)

And that’s about all I can say about that tonite.

She is perking up – bit by bit. Sitting up for more than five minutes at a time is still not high on her “to-do” list, but she wants to rip open entire packages of baby wipes, which is a favorite hospital game. That’s a good sign!

Thank you for your prayers – I’ll add an update to this post if we get more news tonite, otherwise, we’ll see where things are in the morning!

Terra

And Kendall Quinn!

Watching Numbers.

I remember about two years ago, this very week, one of our awesome NICU nurses told us to not watch the numbers, but watch Kendall. Ben and I would sit there in her little curtained off area and just focus on that monitor, like we were at the horse races or something.  Numbers MEANT something – they meant she was breathing too fast or not enough, having a good day or a bad day, getting closer to home or stretching endlessly out in front of us.

And while i know so much more about what the numbers mean – I am still here, two years later, watching numbers.

There are number windows open up on my laptop screen – convert Celsius to Fahrenheit, calculate anion gap, what should these numbers be, and what do those numbers have to do with other numbers.

Right now, in the quietest hours of the morning, of really any day in any hospital, i am sitting and watching the numbers on her monitor. Her monitor has lots of pretty colors and squiggly lines, and when the lines are symmetrically squiggly, they are telling us the right numbers. The top line is green – that is her HR (heart rate). This is what brought us here. When Kendall is feeling well/doing well, her sleeping HR is in the 90’s – 110 range. Last nite, her sleeping HR was 190 at the height of her fever spike (if she moved/coughed/cried at all, it would skyrocket up near 230).  Have you ever had a really good cardio workout that left you feeling like your heart was just pumping a mile a minute? Now try sleeping with your heart like that. Not super restful. Tonite her green (HR) number is 142 asleep. It has gone as low as 110 tonite – but that makes the other numbers not real happy. Still, it is a definite improvement.

Her next number is blue – this is another number we watch a lot at home, even though she tends to do very well with this one – her oximetry (amount of oxygen in her blood) number, also referred to as her “sat” (for oxygen “saturation”, how well is oxygen being dispersed throughout her body, or, how well are her lungs doing their job). Earlier this morning, we tried an oxygen wean – where we see if Kendall will keep her numbers looking good on her own, without the extra oxygen. Within about two hours, it was obvious that she could not. Her pulse ox number was 90. For a kid who typically doesn’t dip below 97 even at nite, I knew this was not a good sign. She was asleep when she was doing it though, so I was going to stop watching the numbers and watch HER, to see how she was handling being that low on o2, when all of a sudden she stiffened, arched rigidly, screamed, and alarms started going off loudly all over the place. I heard a nurse come running down the hall (they can see/hear all the alarms on our unit from every nurse’s station), and I glanced quickly at the numbers – HR was 214, sat was 74. I knew it wasn’t a seizure because of how quick the whole episode was, but it sure was scary to watch. kendall essentially “passed out” – not fully, but she went RIGHT to sleep and slept through a lot of activity the next half hour or so- afterwards. But it sure had me glued to the monitors for a while after that! Dr. A’s theory is that it was a mucus plug – as they can be quite painful, and we have seen her have similar smaller episodes since that time. Tonite as we were getting her ready for “bed” (vs just the laying around and drifiting in and out of sleep all day that she has been doing!), we had her oxygen off of her again for about twenty minutes. Of that, she was mostly “asleep” and not being moved for about the last 10. In that ten minutes i watched her ever so slowly creep down from 97 (on the o2) to 85, and then she decided to just hang out there. Not good. So, we quickly got her cranked back up. For those who care, she is on 1L (one liter) of flow.

And even at that, she is struggling to stay around 95%. For a kid who RARELY sees those numbers, I know she is fighting something hard. I am sure it is just this virus. It is just sad to watch her little body struggle so hard to fight a cold, I cannot even imagine if it were anything more sinister than that right now.

And that’s all I wanted to say about that tonite.

thank you so much for the prayers, the thoughts, the offers of help/meals. Maybe if I get a little more sleep tonite I will be able to formulate a plan of some kind, and be able to take you up on some of those offers.

terra

Seventh Verse Same as the First.

I’ll admit that even I am shocked she hit this record. Seven hospital stays in one year. What a way to kick off your third year, hey? Little stay in Hotel LG.

I am sorry if this post comes across as slightly frustrated sounding. I guess that’s cause i am.

See, Kendall has a cold. She has the same cold that Kaylen has had for a week. I would swear on a stack of Korans that this is all they both have. Your basic average common crappy croupy coughy cold. The kind we all get from now until Memorial Day. The kind that most people just deal with, hack up a lung through, and move on.

Not Kendall Quinn. she has been struggling with her breathing (retracting and tugging more than usual, panting for breath at odd times, wheezing more and having her HR at a very uncomfortable high level) for a couple days now. Thank God for our awesome nurse cindy. By some act of God Almighty, she came in on her day off (yesterday) to help us out with Kendall – and we didn’t even know how “sick” she would be. So she was able to see firsthand how Kendall gets when she is starting to slide downhill, and when she came back this morning to a not much improved Kendall, she was able to really help talk me through what we needed to do to help her get better/feel better.

It really has been so amazing to have our nurse around to help us – to help ME – feel better equipped to know when to panic, when to observe, when to be proactive, when to lay low and let Kendall’s body do what it needs. And so that’s where i was yesterday. Even when Kendall was barely conscious after 17 straight hours of sleep. Even when her HR looked like she was running a triathlon {even though she was laying quietly in bed almost asleep}. Even when she started sounding like a mucus factory with a side business of wheezing. Even with all of that – I still was not worried. I knew she likely had the same cold Kaylen had. I knew we had LOTS of support we could give her at home. And I knew lots of people were praying for her. I knew I was praying for her. I knew Jesus was in her room with her, holding and rocking her and restoring her little cells in ways that I cannot even fathom.

But as I laid awake into the wee hours of the morning last nite (I don’t even know when i fell asleep) – hearing her alarms beeping that her heartrate was too high or her sats were dipping too low when she would try to cough through all the junk – then my mind started to work a little overtime. So by this morning, when C was justifiably and very visibly concerned that Kendall had made no improvement and in fact seemed slightly worse, and I knew it was time to make the call to Dr. A, i knew it was the right thing to do.

My message for Dr. A went something like this:

“Dr. A – terra here about Kendall. I am not bringing her to the ER, but i would like you to call in some antibiotics or some steroids to help her breathe better. Again – she is not in distress so I am not going to the ER. Love and hugs – me”

His reply message via his nurse a couple hours later":

“Terra – Dr. A thinks that’s a great idea to have you come in to the ER and get her evaluated. he will happily call in abx or anything else she needs once she’s seen there! See you soon!”

Me: Ummmm – no – exact OPPOSITE of what I asked him!

Nurse: Yeah, he said you’d say that, and I’m supposed to tell you that this is his final answer. Go the ER. We aren’t messing with breathing issues.

Me: @#%()*@#%()*@#%

So – I was kind of content to keep this info to myself (even though Ben had just walked in the door so I could go on my weekend of sanity restoration with a dear friend) – but he walked in to her room where her nurse was holding a very limp, very wheezy, and obviously very hard-heart-working Kendall and declared we were taking her somewhere no matter what.

And wouldn’t you know it – the second we get here, get taken right back to a room, get assessed – she is no longer AS lethargic, her HR is down out of the 190’s, she has a semi-grin on her face…ugh. Her usual routine. She likes to make it seem like I am crazy in front of the docs. But after some extremely difficult to stick and draw labwork, and a (clear) CXR – chest x-ray for pneumonia, and I assume a pretty good albeit slightly fast EKG – they came to take us to a room on 2Tower. at least its in the “new” part of the hospital. All fancy-like rooms that look right on out to the Portillo’s across the street. Much harder to “find” medical supplies here though. They have fancy locks on the doors in these rooms. Probably a good thing given my kleptomania for all things medical  – whether or not we actually USE those items (suction catheters anyone? IV start kits? suture kits?).

I think her official admit diagnosis is “tachycardia” – which means hella fast heartrate. (That’s my translation of Latin.) they have to “swab” her for the viral panel (to confirm that yes indeed, she has a rhinovirus of your garden variety, and hopefully not anything worse than that) – but her initial CBC/bloodwork came back looking “ok” – meaning we don’t think its a bacterial infection at this point.

As we sit here tonite though – with her HR again soaring above 200, and her fever now climbing into what they consider “real fever” range (103 F) – and yes I realize those two go hand in hand – I am hoping we can find an answer and a fix. And a quick one. For her little body, this is a hard fight. She has puffy red eyes that are definitely not sparkly like normal. Her skin is tight and dry and beet red from the effects of having such a rapid rise in her fever. She has one arm taped completely to a board to protect the one precarious line they have been able to start all day. she is hooked to heart leads, O2 probe leads, IV’s, oxygen and drainage bags.

she is very very tired right now, and so very brave. Her tiny little veins in her feet were just attacked and poked 6 times in an attempt to get enough blood to run new cultures in search of the cause of her fever. She is trying to throw up and doesn’t even have the energy to complete that task. I have put her in Jesus’ hands again – and am asking Him to sing His song of peace and calm and cooldown and rest and no-more-pain over her.

She is a fighter this girl. and right now the fight is just about out of her – for tonite at least.

Pray for rest. And strength. And healing.

thank you for just praying.

 

terra

Just some pictures.

Because I can’t seem to find the time to sit down and write a real update – here’s a few pics to tide you over!

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this is last wednesday when she started to go downhill. Hard to tell from the picture but she was just very puffy in her face and eyelids, and all around not a good color. but was such a good girl to lay and get the cannula (for oxygen) on – she must have known she needed it.web5 On thursday she felt a little bit better – trying to be mischievous and get a huge marshmallow out of the pantry. which she licked a little bit and then smeared all over the fridge! Eyes are still puffy, color still kind of off, but she seemed a little bit better.

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Sometimes with all the attention Kendall gets, Kaylen feels a little bit left out. Friday morning she was complaining that her eye hurt really bad, so we taped it up, everyone loved on her and kissed her owies, and what do ya know – ten minutes it was healed up enough to take the gauze off. She has been escalating this kind of behavior lately and I am not quite sure how to best handle it. I want her to understand that I love her and give her attention for things BESIDES medical issues, but then I am wondering how much of it is just normal 2 year old “put a bandaid on every little scrape I get” type of behavior. I am relatively confident it has a little more to do with her sister’s issues than just normal stuff – but, until we figure it out, i’ll just keep taping up random invisible owies and loving on her.

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Clearly on the upswing! Monday afternoon after we got all the nasty swallow study leftovers out, she wanted to play again – a very good sign that discharge is imminent! Don’t be fooled by how “chubby” she might look – that is the result of 5 bags of fluids and not nearly enough pee coming out! Her eyes still have a puffy look to them that is beyond the rest of the facial puffiness – but you know, a cute chubby picture is always nice – even if it’s not real pudge! The black and white wires/stickers are her heart telemetry monitors, the circle on her cheek is a “tendergrip” and holds her oxygen cannula in place when it’s on, and the big circle in the middle of her tummy is her tubey – that is the plastic disc (“bolster”) that sits against her tummy and gets resistance from the balloon blown up inside her tummy – the tube comes out of the middle of that for about 10 inches and ends with a large 3-pronged “port” through which we can access her Gastric tube (in tummy), Jejunal tube (intestines), and “balloon” – how we keep it inflated.

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She got this “monkey” in the ER after her chest x-ray (nothing like convincing kids they deserve a toy after every procedure – this is REALLY going to come back to haunt me with this one!) – but she wasn’t in the mood to play with it when she got it, so in an effort to calm her down I told her a story about a little kitty (because I can make WAY better kitty noises than monkey noises) – and it thereafter became her kitty. She would make her kitty “meow” noise when she wanted it, and all the nurses quickly learned that it was NOT a monkey, but it was instead a kitty. Kendall just loved that they knew who her kitty was and slept with it every nite in the hospital. who would have thought such a little stuffed animal would bring such comfort?

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Feeling better – but still so far to go. I just liked this picture of her for some reason. Maybe its her eyes, or the curly hair. I don’t know.

 

anyways – that’s all I have done for right now. Time to go start getting ready for the big daddy/daughter dance tonite! (well, i don’t have to get ready, but i have to find tights and “high-heel” shoes for the girls….should be fun!)

 

more later!

 

 

terra

2Tower

This is mostly just an “as info” post for me to be able to refer back to as needed about kendall’s {first} hospital stay of ‘10. I had to laugh at myself because I was looking through my calendar yesterday and noticed that under “goals for the month”, I had written: Keep Kendall out of the hospital!

HA! I wrote that in January! I guess I was thinking that since she had gone in last year at this time, making it through February without a stay would be a good push forward. Not thinking that this is clearly smack in the middle of RSV season, spring is still weeks away, and I have really no reason to believe that she is completely out of the woods with all of her “issues”. But it did make me laugh. Guess that’s a nice checkmark in the “epic fail” category for this month’s goals!

Anyways – the decision to admit Kendall came because we do feel like there is no hard evidence that oral antibiotics are really being absorbed and/or utilized in her system. We see a SLIGHT improvement the first day she starts on them, but that is mostly with regard to her gut function. Antibiotics do tend to speed things up on a GI front – and she, with her typically very SLOW moving gut, actually benefits from this for a day or two. But as far as getting any kind of improvement on the respiratory symptoms that we typically need to put her on antibiotics for? Slim to none.

So given how long this current illness has drawn out, and the realization that it could easily be another few very long weeks of worsening respiratory function, it was not too hard to decide to go on up to the floor for some IV fluids, IV antibiotics, and IV steroids. The good stuff! It was actually a very quick process to get admitted up there (it typically takes a couple hours, and then at least an hour or so to wait for a bed). The new Tower rooms (new addition to the hospital that they were building last February when we were there!) – are very nice, much bigger, much more modern and workable for families. We were RIGHT outside the main entrance and by the nurses’ station – so it was a little bit loud for my liking – but its kind of just loud period in a hospital.

As is our usual custom – I tell the nurses where kendall’s best line sites are, and request that they take her to the procedure room while i go ten floors up and get a snack while they are putting her IV in. It is never a pretty process. This time, in spite of how hydrated i thought she was, they still bring her back to me with CLEAR signs that she has been screaming her head off for a good half hour, with bandages in four other spots besides where the IV is taped up and housed with “no-no’s”, and tell me “yeah, we had a little bit of a hard time getting a line started!”  Ya think? Like I couldn’t have guessed that from the other 4 blown sites! Anyways – bottom line is, they got one started. I didn’t hold out much hope for it – it was at the top of her foot right where it connects to her ankle, and she wanted nothing but to stand up in that crib, putting lots of pressure on the “needle” part of the IV.

But we got her started on some good Rocephin (ceftriaxone), Clindamycin, and Solumedrol (methylprednisone). She was on a pretty good loading dose of all of these, which did serve to make her a TEENSY bit wired the first nite (she got about 3 hours total of sleep from Thursday afternoon till Friday evening) – but they seemed to start making a drastic difference in her wheeziness and liquidy breathing. There was WAY too much drama that first nite over her feeds. The residents like to pretend like they are real doctors who can handle any emergency, but in reality, they are  underlings sent there to carry out the orders of the Attendings. The Attendings are who are running the show for most of the kids on the floor. Attendings are direct admitting their kids with specific orders most of the time, whereas residents get to supervise kids who get admitted from their pediatrician or from the ER. Dr. A is Kendall’s attending doctor. He knows us, he knows her, and he knows what needs to happen. So he writes orders for Kendall to get her J-feeds as necessary, at a slow rate. I hand the residents Kendall’s protocol letter for her MMA – which confuses the snot out of them. “But she’s not in metabolic crisis right now! We can’t follow this!!!!” Ok people, use your JUDGEMENT. She has an IV, start fluids. Don’t start the insulin if she isn’t hyperglycemic, don’t start the bicarb if her numbers look fine. It seriously took me till midnite to get them to understand that feeding her was OK with all of us. Then started the drama with the fact that they don’t have kendall’s formula, and why couldn’t we try a different kind, and what if they just sent a security guard to walgreen’s to get some more and are you SURE you don’t have any more that we could use tonite?

So frustrating. They NEVER have her right formula, I always have to call our HHC and beg them to make an after hours delivery so I can feed my child. Anyways – we had 8 ounces of formula, so we gave her that, and decided on pedialyte as a good alternative until the formula could be delivered. So much drama over something so stupid –because we had orders ready for IV dextrose as needed AND we were talking about 2-3 hours of no food at that point at max. Bottom line was – she would be fine if they would just make a decision and start her on SOMETHING. I hate how it’s never simple there. I swear they can act like she is the ONLY kid on the floor with a feeding pump and medical formula.

Anyways – Friday she was still pretty wired from now not sleeping and eating about half what she normally eats. I had to go down to Karissa’s party at school for Valentine’s day, and to shower and pack for the rest of our unknown length of stay. Continued improvement, some napping, but overall good stuff. Friday nite Ben and I switched shifts again, and of course he is no sooner out the door then i notice a huge crazy rash on kendall’s whole leg, and creeping rash on the other leg. No one can figure it out, and everyone just wants to go to bed, but no, we have to call the residents in again. They come up with the BRILLIANT plan to “watch it to see if it spreads, but its probably just contact dermatitis, and since she has had apneas, we can’t give her benadryl, so we just have to hope it goes away on its own”. Excellent. We’ll watch it, thanks. And by the way she is wearing her own clothes from home which have been washed in the same detergent for the past 15 months, so contact dermatitis isn’t really a viable option at this point, but fine we’ll go with that.

We finally get her settled down for the nite, or so i thought, when nurse comes in to prep her for another round of antibiotics, and discovers that the IV is blown. But instead of just making this call on her own, she calls another nurse in to confirm this. They continue to flush the line with saline, which isn’t really going into her veins as much as its just leaking everywhere – and about 4 ounces worth of flushes later, they realize they need to replace the IV. So at 1 am we get everything set back up for an IV change. By 2 she is set with a new IV, we finally have some cortisone cream for the “rash” on her legs, and we are all ready to just get some sleep. It was a long nite!

SAturday morning, Dr. A comes in and says we are going to be good to go within a few hours! We talked about why we needed to have IV abx/steroids at this point, and if that would ever improve, whether or not he felt that IVIG would help some of these recurrent pneumonias/infections, why was she having apneas, and what we could DO about it all. He basically said he doesn’t KNOW what the answers are, because we can’t say for certain which way her system will go with the underlying metabolic issues. He’d like to HOPE that she will grow out of it as her system matures, but then says that other things point to that not necessarily being a sure thing. He can say that he is almost positive her apneas (stop breathing spells) are obstructive in nature, most likely from reflux. He said that at this point her asthma is definitely being aggravated from all the reflux, but that going back on her meds won’t really help it. It was a confusing conversation – in that he knows there’s a problem, but doesn’t really know what or how to help it. I felt very…frustrated. Not so much at him, or even at the situation right then and there – but just by this constant presence of “yes there’s a problem, no, this isn’t normal, no we have no idea what to do about it other than treat symptoms as they crop up”. It frustrates me that we have been tossing around this IVIG thing for MONTHS now, and yet no one has taken the bull by the horns and ruled this in or out as a good option for kendall. No one can say for sure that she has not HAD seizures in the past or will definitely NOT have another seizure if we try to immunize her again.  And why is she still refluxing this bad that it causes her to not breathe well at nite? and why does her heart have to work so hard to keep her oxygenation up? and at what point do we worry about the crazy things her heart does do? And why can’t we ever just get an IV started easy peasy rice and cheezy in her? And WHAT IS GOING TO HAPPEN TO MY BABY!?!?!?!?!

But clearly no one has those answers. And probably never will. So we just adjust to it. Stop asking so many questions and just accept each day with whatever it brings – good or bad.

On our way out of the hospital, while waiting for discharge paperwork, kendall proceeded to throw up an entire bottle’s worth of formula, mixed with blood and mucus. I just about had a meltdown of frustration. She should NOT be able to vomit like that!!! And why was there blood in it? But the residents and the nurses were all too happy to get us out there – she challenges what they know of how babies are supposed to be and act when they are sick, so with a few simple explanations (oh – yeah, the blood is just from how hard she has to work to vomit, and the reason she vomited is because she swallowed a bunch of mucus, yeah that’s it have a great weekend!!!!), we were on our way.

I was glad to be out of there in such a short time, and yet – I feel like we almost have more questions than answers now. And I didn’t expect to get “answers” per se, but I certainly didn’t expect to have MORe questions now!

The bottom line is that while we weren’t advised to take her NPO (nil per oral, not eating by mouth) again, they did tell us to pretty severely restrict the amount of food she is taking by mouth, especially before bedtimes. Feed her in a carseat, or make her eat sitting up only, and make sure she doesn’t lay down for a half hour after meals. In essence – all the advice they give you when  you have a 3 month old baby who has reflux. Not quite sure why we’re still here with a 15 month old…but that’s where the questions come in.

so we are home, and she is sleeping well in her own bed, and the abx and steroids seem to be helping a TON. She is happy and bright eyed again. I don’t feel like I am on high alert level anymore. She gets about a fourth of what she was getting before by bottle/mouth. But she is sleeping without alarms. And breathing without coughing. For the first time since the first week of December! I am so happy that she seems to be GOOD, really and truly good for the first time in so long!

And now to just have her hold on to this goodness till we get through the rest of winter!

i am sorry the end of this post doesn’t make a whole ton of sense – i clearly should have stopped typing about an hour ago and just gone to bed!

I have a whole lot more to type and say though – but not for this post.

Sorry it was pretty rambly. hopefully it will still make sense to me someday when i need to refer back to it.

peace out, my homies.

 

t-crest

if it’s not one thing…

then its probably something worse!!!

I don’t even know if this post will make much sense. I am beyond tired.

We spent the nite, literally THE WHOLE NIGHT in the ER here in town last nite with Kendall Quinn. It started out when we got home from a VERY LONG DAY of driving around – grocery store, therapy, school pick up, dance class for three hours, finally back home – and I changed Kendall’s diaper to get her ready for bed and noticed a disturbing amount of reddish blood in it. It was pretty obviously urine (vs. stool), but I was willing to hope that maybe she had just been in an awkward position and just had the hershey squirts. that were tinged very red. She didn’t have a fever, wasn’t really acting sick (just extremely tired), but still, it was disturbing. Got the other girls ready for bed and continued to check on Kendall (taking her temp) every hour until i was finally ready for bed. Went in to check on her one last time and felt her soaking wet. I thought this could be good (she finally peed and its all normal) or it could be bad (it might have even more blood in it!)Well, it was kind of….worse.

Her tube had come out AGAIN. I grabbed her up and ran to our room to assess the damage and sure enough – tube won’t go back in. Stoma started to close up again and i was NEAR frantic about it but grabbed a thermometer and jammed it into the hole. She was screaming, i was in tears for making her scream and i opened up her diaper and sure enough – more blood. I just held her on the bed and cried with herblog4 for a few minutes till I realized that this wasn’t helping anyone and i had to do something. How can i thank our wonderful friend and neighbor CLC enough? she heard the panic in my voice and came running over to sit with the girls so i could run to the ER with her. Another dear dear friend met me at the ER so that I wouldn’t be alone and I cannot think what I would have done without her keeping me sane and calm and laughing throughout the entire long ordeal. She pulled chairs away from the hacking coughing flu-infested masses into the hallway so we didn’t have to expose kendall further to stuff she just can’t fight off. She made jokes about nurses with me. She claimed to have smuggled smores stuff in with her (but failed to produce when i needed one!), and she made vending machine runs (again empty handed!!!) But between those two – we were able to survive. Ben noticed around midnite that i had left a message on his phone and decided to cut his trip short and head back in the middle of the nite.

LONNNNNGGGG story short – they had to check twice if her tube was in the right place (and I had to replace it myself – they just checked it for me via x-ray, which the tech was unable to read and had to page the radiologist to come to the hospital to read both sets of x-rays). But problem one – tube out of place – check. Problem number two – bloody urine –…..lots of shrugging shoulders. They DID have enough foresight to place a line (IV) almost immediately upon exam, even though it did take four people plus two hours to get one in and started. She had scarred over her one good vein in her right hand, they blew the other good one in her hand, she has too little of veins in her left hand, and they finally called a transport team in (guys) to just come in and jab her without all the cooing and awwwing we were getting from the female nurses! They got it the first heartless try! So she had fluids, bloodwork, and catheter to catch urine to test. It was brutal to hold her down through all that plus the two sets of xrays. And all the while they had no idea what was going on. PLUS the fact that that place is crawling with flu bugs. bottom line – the doc had no idea what was causing the blood in the urine or what to do about it other than give her the fluids, tell us to call her doc first thing this morning, and to please never never bring her back to their ER because she is way too complex for them to handle. At least he was honest! (And then he offered me a job helping out the nursing staff because he said i am one of the most educated and informed patient caregivers he has ever interacted with).

Oddly enough, towards the end of our attempts to figure out what tests we could run (and yes, i was providing direction!), i asked if it could possibly be myoglobinuria (essentially a muscle protein residue that sheds in the urine when your body has started eating through muscle for energy/oxygen). I knew it was a long shot, but i remembered reading something about the reddish brown color of it in urine, and we know she has some kind of muscle/metabolic dysfunction, plus her O2 sats (how well she was retaining oxygen) were just tanked when we first checked in (meaning she was working really hard to try to keep oxygen in her blood). The doctor just shrugged and said – uhhhhh I THINK that would have shown up in her UA (urinalysis)???? Totally not convincing. i really think he didn’t even know what i was talking about because the overall effect was that i was using too big of words for him. (and i realize that this sounds like i thought he was an idiot, which i didn’t. he was truly the first ER doc we’ve ever had who GOT how complicated kendall’s history was, and i loved the care we received from him, truly.)

Anyways. So we walked out at 5:15 am after almost 7 hours in the ER with still no real answers, but at least we could feed her and we knew her kidneys were functioning ok and that she had lots of good fluids on board.

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the pieces fell together more when her doctor from the allergy/immuno clinic called back with the test results from our visit up there a few weeks ago. Basically she isn’t making antibodies to vaccines. So we have just been putting lots and lots of stress on her little system with each vaccine, with no responses from her immune system. she has no immunities to anything. Ok i take that back. she apparently made a trace amount of response to diptheria. So any of you who happen to be sick with diptheria this winter, you’re still welcome to come hang out. All you other riff-raff, you’ll have to knock on the plastic bubble we are hereby constructing around our daughter!!! (Ben says this is all payback for how much we used to laugh at the movie “Bubble Boy”…)

Anyways. A blow for sure, but not one that is completely unexpected. Our next appointment with immunology is not until november 25, but the doctor today who called with the results (kendall’s resident doc) is going to be conferring with the head doc about these results tomorrow. He MAY want to move our appointment up or have us just come in earlier than that given that now we know she is just not protected against much of what is going to be floating around at this time of year, and do we want to wait a month and play roulette with it? He may. I haven’t really thought much about what we should do or what the next step is yet. too tired.

The other good part of the convo with the doc today though is that she had me read back all our labs from last nite and she said it sounds suspiciously like myoglobinuria to her (remember that big word I asked the ER doc about??? yeah, THAT ONE!!!!) So i think that’s the party line for now. Kendall’s body is either attempting to fight off a virus OR its still working overtime from the vax a few weeks ago, but either way, its stressing her body out enough that its started eating its own muscle to stay at baseline. We are just running lots of extra fluids through her tube tonite to keep her hydrated, as that is pretty much all you can do for myoglobinuria. It just points more towards a metabolic disorder of some kind. In fact when the dear darling doctor was talking about myoglobinuria, she said in her little Snow White voice “It sounds like she might have a metabolic disorder!” I tell you it was all i could do to not go “DING DING DING!!! We have a winner! Welcome to PAGE ONE – now try to catch up with the rest of us in Chapter 83 and tell us WHICH ONE!?!?!?!?!”

I swear sometimes all these docs are going to be the reason I end up in the looney bin – and NOt my children as one would think…

But ok – enough rambling for today/tonite/wednesday…it’s just been one long day for too long now.

so that’s what i do and don’t know. more don’t than do.

hopefully i’ll make more sense again tomorrow after a LOOOOOOONNNNGGG nite of catch up sleep!

thanks for reading, praying, thinking of us.

 

love,

terra and the gang

the little things.

Usually I am ok with where Kendall is at. I think sometimes I waffle between thinking of her as a “special needs child”, and thinking of her as just my baby who happens to be a little more medically involved than my others. (It’s a subtle difference, but in my heart, it’s huge).

I have long struggled to watch the beautiful children of my friends who were born weeks and even months after Kendall get to do things that she cannot, experience things that she cannot, move and express themselves in ways that she cannot. While the larger part of me recognizes that each and every baby is different, and each and every milestone is worth of celebration in ANY child, and truly, I AM happy to rejoice with them in the news of their babies walking or saying words or whathaveyou – a small part of me is just the tiniest bit sad.

While I have LOTS of HOPE that Kendall will soon catch up, and while i am SO encouraged by her progress as of late,blog2 it doesn’t make it any easier to see, in real life, the disparities between her and “normal” babies.

It hit me today at church – I went up to check on the nursery and I saw Kendall, sitting in her stroller, looking out at all the other kids walking around, sitting up and playing with toys, interacting. And i could see in her eyes that she SO BADLY wanted to be on that floor. But we don’t have a regular nursery. We set up a few mats and a carpet in the middle of a school room, with hard floors and no soft surfaces. For a baby who is constantly falling backwards with no self-help/stopping skills in place, it could be a pretty painful experience! And I waved at her and she smiled at me and bounced in her happy dance little way, and as i walked down the hallway the tears filled my eyes. How long will she be unable to play with the other kids? How long will I have to watch her sit and watch the others, holding back the tears, being strong for her?

She IS making progress and I am so very grateful for that.blog3 But EVERY SINGLE SKILL that child has, she has gained through the work of FOUR therapists, FOUR days a WEEK of intensive therapy, not including the exercises that I do with her on a daily basis. She has had to work so hard for each and every new skill she gains. She is amazing! She is an inspiration to me on a daily basis for all that she endures with a smile on her face. But that doesn’t make it any easier to realize that even though she is catching up – she still has so far to go.

And yes i do realize that this is a massive pity party post. In the grander scheme of things, we have so very much to be thankful for. And above all, we always have our hope. hope that things will continue to improve. That maybe she WILL really just grow out of all this some day. But somedays it still leaves me feeling a little…..stuck.

Stuck between “normal” and “special needs”.

And maybe it’s just that i am not quite ready to fully deal with the label of “special needs”. I know Dr. Natalie brought it up to us at her four month appointment, over 6 months ago. And i have been at various points of dealing with it over those 6 months. It’s just so hard to know where you fit without a diagnosis.  And truly, I am not sure I want a diagnosis either. I think sometimes ignorance is bliss. I just don’t know that I am prepared to deal with a diagnosis that could hard to accept. I am not even sure exactly what the docs are looking at right at this moment.

so we just continue in our “stuck” phase.

with a baby who LOOKS and ACTS pretty normal, thank God.

3938024099_5981339274 Except that she has a tube in her stomach and stitches holding her esophagus around her stomach.

And she needs twice the amount of a very specialized formula in order to survive each day.

And she cannot have a bowel movement on her own without lots of meds and lots of help from mommy.

And she endures four hours of therapy every week just to try to get her “caught up” with normal baby skills and make sure she doesn’t lose any skills she’s already gained.

And she still wears the same clothes she wore 5 months ago because she hasn’t really gained weight like she should.3940796315_a64cebaac4

And she is still in her infant seat because if I don’t have that then she can’t go to any stores with me because how do you grocery shop when you are pushing a stroller, but can’t put her in the top of the cart because she can’t sit up on her own?

And that she hasn’t made it more than 3 months without being hospitalized, and even less than that without being in the ER and even less than THAT being at one specialists office or another and still NO ONE can figure out why she just isn’t NORMAL…

So that’s where i am at.

 

Most of you just get the shortened version of

“we’re doing good!”

though, when you ask.

so i thought i’d let you know the long version just in case.

We’re good. We are good. Things could be so much worse. And God has had His hand upon us. And we are surrounded by amazing family and friends who lift us up in prayer and gather together to help care for our needs during times of not-so-good.

But sometimes we’re just a little stuck.

When Bad goes to worse

It has been a day.

i am not even sure where to begin with the update so i’ll just give a quick status update and then do my written processing after that…

  • Kendall’s tube is still not back in. The ER doc tried for over an hour to force incrementally larger tubes through the quickly closing stoma, and after a very LONG hour, with blood pouring out of the wound and a very worn out screaming baby, she finally gave up and left one size down from kendall’s button tube in place. She cannot eat through this tube, and has in fact been taken completely off formula for the short term.  If I thought holding her down for a shot or a lab draw or an IV was bad – holding her down to have her organs re-pierced by far exceeds them all.
  • According the ER doc, the chest x-ray and blood gases were “normal”. I’ll believe that when i see the reports in my own hand because clearly, i do not have a healthy “normal” child laying here in the hospital bed now do i? Thank God for Dr. Aljadeff who quickly corrected the ER doc and told her that if kendall was not 100% unequivocally healthy she was getting admitted. That man continues to be Kendall’s angel.
  • Once the ER doc knew kendall was coming upstairs, she pretty much stopped all care. This is when kendall went downhill. No IV’s were placed, no fluids had been given. i finally out of desperation to get SOMETHING into her made 2 ounces of formula and tried to slowly drip it into the tube that is in her stomach. This started the vomiting episodes that are continuing even now. And by vomiting, I mean yes she is actually vomiting up fluids/bile, past the fundo, and on top of anti-nausea meds.
  • By the time we got upstairs to the peds floor (aka our “home away from home”), kendall was a rag doll. Her eyes roll back into her head and she essentially passes out after every time she retches.  It took almost an hour to get an IV in, and another hour past that to get the correct IV fluids sent up from pharmacy. (I swear to you the pharmacy at this hospital must be staffed by lillputians or something because it takes forever and a DAY to get meds sent up in the little pneumatic tubes. You better know five days ago what meds your kid might need and put in a pre-order for them because goodness knows by the time they make it here your child may be dead OR all better on their own! who knows!?!?!) Anyways – ok random vent over.
  • So that’s where we are at tonite.
  • Her breathing on the monitors seems stable – except when she is choking on her vomit and turns blue.  This only happens about 7 times in an hour though so, you know, its all good.
  • We desperately need some pee though! Right now her GI tract seems to have shut down, and it appears that her kidneys are following suit. In about 40 minutes they are going to try to “bolus” fluids into her IV, which will either wake her system up and get it started again, or it will make things worse. If she could pee on her own BEFORE this, it will be more likely to help. If not – well, they aren’t telling me a whole lot about if not.
  • Her little body is very tired, very worn out.
  • Please pray for wisdom for the doctors, for answers and guidance as to how to treat whatever it is we are dealing with.
  • Thank you to everyone who has stepped up to take kids, feed dogs and ensure that church will still run smoothly tomorrow without me.
  • hopefully the morning brings better news.

 

terra

girls summer 09 355

I so *pink puffy heart* the ER…

That i apparently can’t keep myself or my kids away from it.

Just a quick update –

we are headed up to the ER at Lutheran to get a few things checked out for Kendall Quinn.
first – her tube came out at some point last nite. Yesterday afternoon I noticed a lot of reddish chunks coming back out in her “burps”, and then this morning there’s tubey just laying in her onesie! It seems like the balloon burst, and the chunks may have been the first sign that the tube was rubbing around inside her stomach. Without the balloon to hold it in place, it easily slipped out and the stoma (hole) has started to close. I was able to get a very very small tube in there (one of her old NG tubes), but there is no way her regular tube is going back in.
when I called the surgeon for help, he said it could wait till monday and he would dilate it in office and stick it back in. which is all fun and games except that there’s no way I can feed her through this tube because we really can’t check if it’s in her stomach or her intestines. if its in her stomach, great, all’s good. if its in her intestines, she can only tolerate about 1/3 of her normal amount (because your intestines aren’t meant to process food, there’s no acid in your intestines to break it down.) Anyways – so that in and of itself is freaky. Thank God she CAN take some orally – the problem is – everything she drinks plus all her electrolytes and other stomach fluids come pouring back OUT of the opening, leading to possible dehydration even quicker than if she was just not eating or drinking period.
I mentioned to the surgeon that we may end up at LG for observation anyways because of her retracting/weird breathing lately – and he basically acted like i was crazy for not already having her at the ER if she is having trouble breathing.
therein lies the crux.
she is NOT having “trouble” breathing, but some internal process is occurring whereby her body is telling her to breathe harder/deeper in order to remain somewhat stable. So, as i was already inclined to do, i did call Dr. A for his opinion.
in his words – “she goes from 60 to zero so quickly we can’t “wait and see” what’s going on, we need to know NOW”.

so up to the ER we go.
we are running a chest x-ray, some blood gases and other labs to see what’s going on. hopefully they just need to observe her for a little bit and can pop her tubey back in for good measure all right there in the ER.
If ANYTHING shows up on her CXR (xray), she’s getting admitted.

So please pray.

In an ironic twist – tomorrow would have matched our longest time out of the hospital – 86 days.

thanks for praying

t

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