michael jackson died.

kendall pulled her tube out with the balloon intact and we had to actually go to an ER to get it put back in.

kaylen fell off her little push-car, hurt her head, gave us a little scare, and the proceeded to drop a deuce on the carpet in the basement.

and oh yeah, we’re back to indepth cystic fibrosis testing for kendall.

i don’t even know if i can muster up the strength to rehash today’s appointment right now. I go back and forth between numbness about it, and then wanting to just pretend like it didn’t get brought up. The two options we were given today were like bad and worse, and out of those, CF is actually the better one. so the second round of testing began today.

Basically, her GI doctor and her pulmonologist both agree that she is malabsorbing/dumping her food. The main cause of malabsorption is pancreatic insufficiency. The two main causes of PI in kids is cystic fibrosis and an even harder to swallow diagnosis, Shwachman Diamond syndrome.

Now – there is still a chance that is NOT actually having pancreatic insufficiency. Right now no one knows what else could be causing her to be so symptomatic of PI, but there’s a chance its not TRUE pancreas issues. There is also the fact that her newborn screen did come back the second time as normal, the fact that Ben passed an initial carrier screen, and that she did have a very low initial sweat test number all very much in her favor. While i can’t quite wrap my mind around what exactly i feel about all this, I know that God continues to hold us through it all.

I don’t know what to feel or think right now. I don’t know if i feel anxious, or if i am just taking this new wait in stride with the other waits we seem to be perpetually in with kendall. I guess i feel like, right now, it’s probably not worth getting worked up over, since there are still a good amount of “outs”, but its good to have  our way eased into this, that it won’t be such a shock if we do end up going farther down this path.

So ok enough of that.

Today was the culmination of a crazy week. The kind of culmination that makes you realize when you go to stand how very tired your legs are, and you realize that they have the done the hard work of keeping you upright in spite of every instinct you might have to just let them crumple of the weight under which you find yourself operating on a day to day basis. Maybe tomorrow I can wake up and forget about today, for a few days at least.  Just let the thoughts toss around in my sub-conscious for a few days while the conscious part of me gets to pretend like i won’t have to deal with a possible life-threatening, terminal diagnosis for my baby. And maybe, in pretending, it will be true.

But overall, in the big picture, the real life scheme of things – we are blessed.

for the moment, everyone is healthy, and mostly happy. We have birthdays coming up to celebrate, family coming in to town to help celebrate, and beautiful weather to enjoy it all in. Really nothing to complain about.  so we won’t !

next post – the grisly details about kendall yanking her tube out last friday, better than an IV injection of caffeine for getting my heart racing!!! THAT was fun times!!

speaking of caffeine….i am soooo tired. i should go to bed. i can’t wait to re-read this rambly post in the morning and laugh at how little sense it all makes!

t

All day today I have been looking at the clock and thinking “one week ago at exactly this time we were getting called that they had finished the muscle biopsy”, “one week ago at this time we raided the vending machines”, “one week ago at this time they were wheeling her into her PICU room and I got my first look at her”…it’s weird. In some ways it has been the longest week of my life, and in others, eh, just another “normal” week in our ever-chaotic version of normal.

So we got officially discharged late Thursday afternoon and enjoyed a great weekend at home. We had our block party and a church=wide outing to a minor league baseball game on Saturday in some of the worst humidity we’ve had in a year. But we packed kendall into her stroller with ice packs and icy cold wet rags all around her to keep her cool and off we went! We really tried to limit how long she was outdoors total all day, keep her in the shade, switched her to straight pedialyte (vs. formula) for most of the day – and it seemed to have worked like a charm! No meltdowns, no puking, no hospital visits!

And we’ve just been adjusting to life with her new attachment! It’s not that much different than the NG she used to be on – it’s still NON-STOP feedings…..ugggghhhhh. Constantly pushing the IV pole around the house with us or packing the bag up special to fit in her little backpack, knowing the stupid pump is going to alarm at least 823 times while we are out (it’s always awesome when it goes off in a totally quiet place like church!), packing extra “supplies” into her diaper bag that aren’t normally in babies’ diaper bags (extra pedialyte, extra tubes, a stethoscope, syringes, and gauze pads) – but other than that, it’s life as normal! We were given really little to no training on what to do to care for this tube; just “DO NOT let this tube move for a week, keep her on continuous feeds, and take her right to ER if it comes out.” Seriously? I need a LITTLE more to go on here, geniuses! so when I called to make her follow up visit I was given the SOONEST appointment time of July 14th. Yeah, not so much. I have a kid oozing green stuff out of a hole in her stomach. “Oh, well how about tomorrow afternoon?” says the chipper receptionist. Awesome. No idea why that one didn’t pop up the first time, but maybe you have a special “oozing green stuff” appointment list that we got bumped to with the magic words. I am hoping we get a much better idea of what we should and should not be dealing with tomorrow.

To my knowledge, they will not make her totally NPO (nil per oral in Latin, nothing by mouth in plain ol’ English). She should be able to start having a few bottle feeds throughout the day as soon as she is past some unknown timeline of post op status. That’s good – retain some sense of normalcy out of this situation for her! We are waiting on the results of the intestinal and rectal biopsies before we can proceed much further with that though, as hopefully those results will give us some answers about why she can’t digest food right (based on what is coming out the other end), why it takes so long to come out the other end, why it hurts so much, etc etc. Things they are looking for are specific allergies (to all proteins, or to all sugars, for instance), enzyme deficiencies, metabolic insufficiencies, etc. Will one of these things be THE CAUSE of all the other problems? No telling.

my personal feeling is that the muscle biopsy will be the most telling, but that is a good 3-6 months out. No idea why. That’s just what it takes. And that’s if we are one of the lucky ones who get a quick turn around. There are families who have waited upwards of 10-12 months for their results. Now there is a chance that we could get some preliminary findings on that one within about 2 months, but I am not crossing my fingers. For now, I think keeping her out of the hospital and eliminating a major cause of her pneumonias is enough for me. The big answers will come, someday. For right now we will focus on keeping her tube in place (it currently gets bolstered with about 300 gauze pads and a half a roll of surgical tape), not freaking out over seeing stomach contents coming back out the hole the tube is in, and coming to terms with what i will see when her bandages are finally removed. I think the hardest thing (and i KNOW this is strange and weird, but it’s mine to own) – will be seeing her “new” belly button. I saw in the operation pics we got from the intern who went into surgery with her that her belly button was their main point of entry and was basically exploded open. So she has a new man made belly button, and it replaces the one that was the bond she and I once shared. It was her very first connection to me, and the very last thing to be separated between us. And now hers is altered, shifted, forever changed. It will be different and not mine and I want to pout about it for a little while so keep the “oh my gosh that is the weirdest thing i have ever heard” comments firmly in your heads for a few more weeks at least. Then we can all look back and laugh together about how mental i am.

So that’s the big update. Nothing totally exciting to report, and i think that’s probably a good thing!

I am sitting out on the porch right now typing this – on one of those quintessential summer evenings – the humidity is still hovering somewhere around 200% so it feels very warm out here, you can hear the hum of the neighbors’ air conditioning units all around you, the bugs are attacking the computer screen and my legs, and you just know – IT’S SUMMER. I love nights like this. I want to remember to take advantage of them more this summer. It’s the first summer in a while that I haven’t been growing a child! I hope to make the most of it! 

Like this morning’s adventure of blowing up and filling the little pool for the girls. They loved it by the way. Had to drag them in kicking and screaming at 2 pm to force some cold air on them for a while! I am glad they are enjoying the weather outside though. We sat out there making up games to play with a few coins and some plastic cups, and when i finally did have to start having one ear inside and one still outside, they mysteriously kept needing to put more water in….I have no idea how two little skinny kids can displace 23 gallons of water in a matter of two hours but they did!

so this is what I hope our summer days are made of – sitting at home and melting in the heat. no more hospitals or surgeries.

my bronchitis is finally feeling better (and i actually finished a whole course of antibiotics for once!!! Go me!), and my hip that was horribly out of place all last week is finally starting to loosen up (after two chiropractic adjustments and LOTS of ibuprofen). I hope to be completely on the mend from the horrible effects of hospital couch sleeping for almost two weeks within the next few days.

thanks for all the continued prayers and help. you are all an amazing support to us, friends and family alike.

peace out.

terra

We made it to the other side of surgery.

we survived a nite of hellish pain (on kendall’s part) that i wouldn’t wish on my worst enemy. At one point she had four doses of morphine stacked on top of each other and it wasn’t even close to touching the pain. her throat was ripped up from being intubated so she had this pitiful raspy cry, and huge puffy eyes that she couldn’t even open and all the meds to paralyze her were still in effect so she was just laying there screaming, heartrate going through the roof, and i thought i was for sure going to lose it.

i have never ever in my life wanted so badly to take the pain away from one of my babies. i was pleading with God to please please just give her rest and give ME the pain, let ME be the one moaning. After about two hours of chaos she finally got on top of the pain, barely, around midnite, and then we just had to be super-vigilant to bring the meds in every 1.5 hours. Around 5:30 this morning she actually was able to stretch to 2.5 hours, which was a good sign. And then this morning at 11, Dr. A walked in and I saw the first hint of my baby, when she gave him the littlest smile, all she could muster at that point. Ben came shortly after that, and that got a little bigger smile, and by just before noon we heard the most beautiful sound in the world – her little giggle.

it was a rough nite. I feel beat up – and i didn’t even endure 5 hours of horrific surgery! she is one amazing strong little trooper. I could not be MORE proud to be her momma. She is truly an inspiration to me for how brave she is. She amazes me more every day.

And finally, finally, we were able to start giving her real FOOD again. I about threw a med student through the window when he told me for about the 893rd time “but she’s on IV fluids!” ARRRRRGGGHHHH!!!! IDIOT! Yes the fluids are keeping her alive, thank you very much for that, Einstein. IV fluids ARE NOT FOOD. But if you’d like, i’ll go ahead and hook you up to a few IV’s and then take EVERYTHING else away from you – and three days later you tell me how you feel, ok? Good. Deal. Now ST*U (if you don’t know don’t ask) – and send in a REAL doctor who can get my baby some food!

Thank the good lord above for his grace and mercy because i did NOT actually go that ballistic on him, I was much calmer, but i did have to explain to him that IV fluids were not true nutrition and that after almost 3 days of no nutrition in a child who is BARELY above the failure to thrive diagnosis, we need to be a bit more proactive in coming up with plan B. So she got pedialyte started at a very slow rate into her new “tubey” about an hour ago, and is finally resting peacefully.

she is still in PICU, but is being transferred to “floor care” which means she still shares a nurse with only one other patient, but the regular floor doctors can handle her care and transition her back to her regular room sometime today, assuming all goes well with her feeds this afternoon. Barring any RANDOM events (which i truly don’t put past kendall!), we should be back here tonite, and talking about discharge tomorrow afternoon i believe. she did have to have ANOTHER chest x-ray run this morning as she sounds ridiculously junky – so fingers crossed that its just a lot of leftover fluid that pooled during her surgery and isn’t growing another pneumonia. I really think i might have a teeny break from reality if that happens. I’m just sayin’, consider yourselves warned.

So that’s the big update for today. She survived. She’s amazing. She is going to have one HECK of a story to share someday. The scar on the back of her leg looks like a lightning bolt and we told her this morning that if she wants, she can get one tattooed over the scar. She didn’t jump at the thought, but you know, i think it will grow on her.

and now we just wait – pray, hope that her feeds continue to go in with no problem.

at least the end of this stay seems to be in sight.

Soon we’ll be back to THIS baby, and better. I can’t WAIT to see how  much better she feels now that we’ve been able to give her so much support!

your prayers are, as always, so very appreciated.

T

Three procedures are complete – muscle biopsy, G-tube placement, and fundoplication. they are finishing up her intestinal biopsies and she will be brought up. I am so relieved that she has made it through this far.

apparently her IV DID kink RIGHT as they were doing the first med to knock her out. So – wide awake still – they had to replace the IV. Leave it to Kendall!

I am still so nervous I can barely type  -b ut thank God for a wonderful child life intern who went with our daughter to surgery and took pics for us. Most of them are probably a little too graphic for here (I , of course, am fascinated by them), but here’s one to let you know – she’s still our smiley happy girl! (ok so she isn’t exactly all grins and giggles here, she is sucking on her tongue as her top teeth are bugging her – insult to injury right? but still – not too shabby for a starving scared baby!)

Thanks for praying.

us.

 I knew this would happen though. My actual guess for her surgery time was 12:15, and now its looking like she is scheduled for 1:15. So i wasn’t too far off. And it allowed Ben and I to be able to run and fill up on Dunkin Donuts and McDonalds so it was a good thing. She is resting now. i really think she does know that something is up – everyone just is acting so differently around her, I think she gets that we’re all waiting for SOMETHING.

But we got our baby belly pictures and put her Jesus is watching over me pajamas on her (thanks Auntie Becca and Uncle Josh) and now we wait some more.

She is hyperkalemic right now (yes i just like to use big medical words). It means she has a lot of potassium in her blood which isn’t necessarily a good thing. We had to switch out IV’s. She got to go be the star of the nurse’s station for a while – so she loved that! I am personally starting the countdown to see if this IV can last till she makes it in – it has about three pounds of tape holding it in. we all want the surgery team to have to deal with her instead of poking her YET AGAIN today. She got 6 am blood draws in preparation for surgery – that was a hella fun time fo shizz. THREE PEOPLE to hold one 14 lb baby in place! Boy was she pissed!

I also have a slight fear at her anesthesia reaction today. so pray that I am able to communicate clearly with the anesthesiologist and that we don’t have to go to PICU for any extended time (which has been tossed out as a possibility.)

that is all i have for right now. I know some of you only check here, others check only facebook, so i am cross posting there.

Thanks for the continued prayers.

terra

I have a love/hate, push/pull, attract/repel relationship with NORMAL.

My whole life I have tried my very hardest to not be NORMAL, average, plain jane, blend in with the crowd, follow the sheeple. Not that I am not, by many people’s standards, some semblance of normal, but in my own mind, I’m doing things my own way, and they aren’t always NORMAL.

And yet I find myself suddenly driven by this desire to have a NORMAL baby. It has truly only very recently occurred to me that she is not, in fact, as normal as I have led myself to believe. She does not eat normally, she does not sleep normally, she doesn’t poop normally, nor does she play normally.  It’s not normal to have to break the seal on the baby’s bottle for her every three or four gulps so that she doesn’t choke. It’s not normal to have a 4 times a day daily med regimen. It’s not normal that I know all the back staff elevators and can tell nurses where to find things when we’re inpatient because I know the routine so well. It’s not normal that we have to have a PICU resuscitations specialist follow us around to our procedures with a large backpack containing life-saving devices because my child has been labelled “high aspiration risk”. It’s not normal that Kendall has not met any normal baby milestones, but she can now hold her own nebulizer mask and knows to hold her arm still when they are switching out IV tubes. No 7 month old should know that. It’s not normal that Karissa’s favorite thing to do is to give her baby an IV and flush it with a saline syringe (with real equipment). This is not normal. Our lives are not normal.

it’s just not normal.

And i am THIS CLOSE to having one of those fits that 3 year olds are so prone to throwing, where they are flung on the ground and kicking and screaming and their faces are red from howling and tears streak down their face and they are yelling at the top of their lungs “ ITS NOT FAIRRRRRRR!!!!!!!!!!!” That is how i feel today. It’s not fair. It’s not fair to Kendall and its not fair to the girls and its not fair to Ben and its not fair to ME. Its not fair and it sucks. and i want to color on walls with a huge black crayon and just SCRIBBLE my anger and frustration out and step back and look at the handiwork of my little fit and say – there, I feel better now. Except I know I probably won’t. Ok maybe a little teensy bit.

But after i have that fit, I will still have to get up and face the fact that RIGHT NOW, life is not normal. But tomorrow we could be one step closer to that.

Kendall goes in for surgery at 10 am tomorrow morning to have a procedure called a Nissen fundoplication, a gastrotomy tube for feedings placed, and multiple site biopsies taken. At least I have had a few days to adjust to the fact that she will be having this. But now its real. She’s on “the schedule”. Papers have been signed. Pedialyte has been started, feeds have been stopped. My baby’s smooth, if slightly distended, belly will no longer be the same tomorrow. They will be wrapping the top of her stomach around the bottom of her esophagus in and effort to keep food IN her tummy and OUT of her airway and lungs. She will have a little button placed directly through the skin into her tummy through which food will be pumped so as to lessen her aspiration (swallowing food into her lungs) from above. They will be taking biopsies from various places in her intestines in an effort to find out why she reacts to EVERYTHING we have tried to feed her except this protein free elemental formual, why she continues to have GI bleeds, why she has such a hard time passing stool on her own without the help of 3 medicines, 2 probiotics, and daily suppositories. they will be taking a biopsy of her thigh muscle to send off for analyzation of her hypotonia, as that is playing a key part in not only her inability to meet milestones (roll over, sit up, bear weight, etc.), but her inability to swallow correctly, digest correctly, pass stool correctly, breathe correctly. The muscle biopsy will look for a possible muscular dystrophy or myopathy, as well as certain kinds of metabolic breakdowns/deficiencies to see if that gives us more of a clue about WHY we have such a non-normal child!

I am anxious now, on this side of surgery. I know she will wake up tomorrow in a lot of pain. I know we will have a rough few weeks of adjusting to a new way of eating, sleeping, playing. I know that these procedures are not without complications. But i have to keep looking ahead. I have to look ahead to the week school starts, and have a large degree of hope that we will NOT be inpatient again that week. I have to hope that her lungs will have a chance to fully recover without a daily bath in stomach contents and acid. I have to hope that she will begin to be able to use her energy for LIVING instead of just staying above baseline. I have to hope these things because thinking about the huge decision I have had to make for her now just crushes me.

So baby k – someday when you read this, know that I did what I thought was best for you at the time. With all the information I have, in my head and in my heart, I will hand you over to a nurse to go have your insides transformed. I will pray that Jesus sits in that room with you, singing songs of peace and love and comfort over your little body, and guiding the hands of the surgeon. I will take pictures of your smooth unscarred little belly today and hope that someday, you will have your baby belly back with no buttons sticking out of it. I will send you off with a wish that this is our last stay in the hospital for a long long long time. Tonite I will sing your favorite songs to you as you drift to sleep and hope that they stick in your head when you are off in anesthesia=induced dreamland tomorrow. Please know that I have learned every medical thing I could in the past few months/weeks, i have pored over internet medical articles, asked other moms, called every doctor and nurse I know and bugged them for their opinions – and it comes down to this – we make this decision today to save your life. You have done SO GOOD, baby, learning to eat and breathe at the same time. In spite of all your sicknesses and uphill battles with weak muscles and low energy, you have finally started packing on some real baby chub. But I know its a hard job. I know it wears you out to finish a whole bottle and get the calories you need to be able to do it all again in a couple hours. I know your body is getting tired. You did a great job getting yourself strong enough to handle this surgery. And now we can give you the support that you need. We can stop your poor lungs from being damaged by further pneumonias so that SOME DAY, someday soon, you will be able to run and play with your sisters in the yard. SOME DAY you will be able to enjoy your first taste of Coke, and Portillo’s chocolate cake. SOME DAY you will look back at this, and wonder what I thought was such a big deal. I can just see you rolling your eyes at me now, thinking “geez mom, I’m ok. you don’t have to cry about it!”

But until that wonderful day comes, little one, hold on. Be strong. I am making this sign for your crib tonite and praying it over you:

The God of all Grace, who called you to His eternal glory in Jesus Christ, after you have suffered a little while, WILL HIMSELF restore you, and make you

STRONG – firm and steadfast.  (1Peter5:10)

Thank you to all of you who have so faithfully prayed for my baby for these past months – I know your prayers will cover us tomorrow and the next few days as well. Thank you to those of you who let me cry on your shoulders today, and let my guard down, and just be real – even if that means I am scared to death and more nervous than I have ever been in my life.

We will update the blog and/or facebook as soon as we know how it all went. Please feel free to email or call or send me a carrier pigeon message. In some way, answering questions helps. I do not know how long we will be in the hospital after tomorrow. For those who have asked – we have childcare mostly taken care of through Wednesday. Thursday and Friday are still up in the air, both for us and for what we will need for the other 3. For those who have asked, we are up at Lutheran General Children’s in Park Ridge. If you drive like Ben and I, it’s only about a 45 minute drive when other idiotic drivers are not clogging up the roadways at 4 pm on a Friday afternoon.

I hear Kaylen waking up now, so its time to head back up to the hospital to switch shifts with Ben. Leave a note for Kendall – I read all the comments and verses and prayers to her when its time for bed. today is her 7 month birthday too. What an awesome way to spend ANY kind of birthday, right? Being “prepped” for surgery. Always a good time!

Thanks so much to all of you – for the support, friendship, love, and prayers.

Attitude Check time.

terra

The weather’s bound to change!

Or the situation as the case may be.

Sure enough, as soon as I hit publish on my last whiney post, in walks Ben, who drove for almost 4 hours (round trip) to come be with me and kendall when he got my text about our craptapular morning. that helped immensely. The next good thing was that a surgeon came to talk to us. I can’t really do all the details of that conversation justice here, but the summation is that for the first time in a long time i felt like someone was LISTENING to me talk about Kendall’s issues, and was actually filtering this info through his medical degree and coming up with a GOOD PLAN to combat some of what we are dealing with. 

The only problem is – he has to go through the GI who is attending Kendall’s case here. Who is very…conservative to say the least. But he comes in a few minutes after surgeon left, says he talked to surgeon and here’s our plan:

Tomorrow she will have her flexible sigmoidoscopy AND an EGD (esophahogastroduodonemy) study. Basically a camera will go from the bottom up and a camera will go from the top down, and get a mostly full picture at what’s going on with Kendall’s GI tract. Some biopsies will be taken from these scopes, and a full report on the condition of her tract will take a few weeks, but right now we are trying to rule out a few acute (possibly needing emergency action) issues (again this is all as best as i understand it from how it was explained to me). Basically we are looking to rule out Hirschprungs Disease ( a condition where part of her lower colon is either missing the correct nerve cells, or completely atrophied to the point of not working correctly), or a malrotation or intusussepcion (blockage) of the upper intestines. If any of these things are seen, my knowledge is that they will schedule corrective surgery relatively quickly.

If those things are able to be ruled out, then we start moving towards Procedure B. (procedure sounds less scary than surgery). This will involve the placing of a G-tube for permanent help with supplementing her feeds, a Nissen fundoplication to reduce her reflux/aspiration (this involves wrapping the lower part of her esophagus around her stomach so that she can no longer burp, puke, or reflux), taking deeper intestinal biopsies and finally doing a muscle biopsy of her thigh muscle.

Right now, there is a good chance that if all goes well tomorrow afternoon, she will stay here over the weekend and have procedure B on Monday, and we could possibly be home by Tuesday. All of Mondays procedures should be laparoscopic, so lots less invasion.

As scary as some of it sounds, I walked away from that meeting with the surgeon almost GIDDY with relief that i think we’re finally being heard, and someone finally has a plan in place to deal with some of these bad cycles kendall keeps going through.

so that’s where we are tonite.

they took her back to put her IV in already so that she isn’t such a hard stick in the morning after we’ve had to turn her feeds off and she starts to dehydrate a little again. seeing her with the IV back in kind of made it all seem real. like we’re really and finally moving FORWARD toward answers for her.

she had a great day today, finally slept pretty restfully for the first time in a long time.

so see? things really can change around here with the wind.

thanks for the prayers and thoughts after this mornings craziness. 

I am sure that i will be updating to distract myself tomorrow as we wait for Procedure A to begin. It starts at 1 pm supposedly…I wo’nt be shocked if we are still waiting to get taken back at 2. But you never know, maybe it will actually be on time tomorrow!

and….

i’m spent.

peace to you - 

terra

Consider yourselves duly warned, and feel free to just shut your browser window now, because i am sure this will not be pretty.

Today has just sucked.

It started at 1 am with Kendall dropping her sats suddenly in the middle of a pretty good sleep, and when i got to her bedside she was exploding diarrhea out of one end while violently vomiting out of the other, and choking on it. Bodily fluids are everywhere, i have no glasses on (so am blind as a bat and relatively useless) and i can’t find the nurse call button. Luckily she saw kendall’s numbers drop like a lead balloon and came pretty quickly. It was so gross I didn’t even know where to begin once we got all the vomit cleared from her airway. So it took two of us an hour to get everything stripped, cleaned, bed remade, everything hooked back up and her back to sleep. So  I was JUSt about to go to sleep when the nurse came back in to tell me that Kendall WAS scheduled for a barium enema at 9 am. Good, so if the stars aligned that meant i could possibly get 5 hours of sleep, (sleep being a deceiving word in the hospital, meaning a more loose form of napping while lying supine on a hard foam cushion).

So this morning at 6 am the parade of gung-ho residents and med students starts. EVERYONE wants a new complete history. EVERYONE wants to know what tests have been done. I can barely form coherent thoughts at this point but i think i managed to convey to all of them that we don’t KNOW what’s wrong with kendall, that’s THEIR job to figure out, and thus far very little testing has been done, hence my child sitting in the bed right there in front of you. In between all of these people coming in, a nurse comes in with Tamiflu for Kendall. This is the flu medication that is currently being used to treat swine flu. Umm, thanks but yeah my child does NOT have swine flu. At least not now, at least that we know about. Good to know you’re on top of your charts though and didn’t maybe mix up my child’s meds with someone elses!!! Always a reassuring feeling.

So at 7 they turn off Kendall’s feeds, she takes a small nap now that her tummy is getting a break finally, and by 9:30, after two more residents have told me that Kendall’s preliminary results are back from her enema (ummm, again, please check your chart because either they took some other poor unsuspecting child back for a barium enema, or you are reading the wrong report because SHE HASN’T HAD ONE YET!!!!!), I go out to ask the nurse to please call transport and see what the hold up is. Yes she’s still scheduled, they’re just running behind. I want to scream at someone that I know the way to radiology and could walk with kendall in my arms, holding her chart, AND be blindfolded and still get to radiology because we are there so fricking much!

So we get there and they are prepping kendall for the procedure and they ask when her last rectal stimulation was (and if those very words don’t send shivers down your spine then check your pulse!) – to which I replied that she received a suppository yesterday, as she does every day, because she doesn’t poop on her own, HENCE THE NEED FOR THIS TEST. I do not understand why crap does not get written down and then dispersed to important persons in this hospital! Anyways, they stop the prep and say, “oh this test can’t be done until 72 hours post-stimulation”. WHAT???? why did no one tell us that? why did the doc who ordered the stupid test not tell us that? He even DID a rectal examination!!!! I burst into tears. 7 long months of waiting for someone to finally start ordering tests for kendall, and now they can’t do it. Which means we either go home with no answers, or we wait till tomorrow to do this preliminary test, wait for the results to come back late friday afternoon, wait over the weekend because NOTHING happens on weekends here, and then HOPE we can get into an OR on Monday to do the full scope of testing that needs to be done. 

I am just spent. I am out of money, out of clothes, out of ways to try to keep kendall happy, out of hope, out of luck, and most of all, out of coke. And things just always seem worse when you don’t have a good cold coke to help you cope.

But at least she is sleeping right now. And for that I am grateful.

I don’t know WHY this admission has turned into such a fiasco. But I do hold firm to the belief that God does have us where He wants us, he is just asking me to be patient enough to fully lean on HIm, to trust that His ways are higher than my ways. I don’t HAVE to understand this, I don’t HAVE to know all the answers –  I just have to believe in the One who does. I have to believe that there is a greater purpose here because otherwise it is just too frustrating to cope with.

I miss the girls so badly i tear up just thinking about it. This is no way to spend a summer vacation. Sure they are having fun with their Memaw, and hardly even notice that I am gone because of all the “special privileges” they are talking my poor mother into (riding bikes around the block, getting special treats at the store, and having daddy’s ice cream drumsticks for breakfast among them), but its not the same. It’s not what i WANTED for them. I wanted to finally have our act together enough to enjoy our zoo membership, and instead I am now going to have to time errands and everything around the humidity so that kendall isn’t exposed to too much outside air. I wanted to have time to get all my stuff for work at the church organized, and that is also falling by the wayside. All my best laid plans….

so I have to find something else I can do while we’re here on lockup for a few days. I have a few ideas brewing in my head but am not sure yet how to flesh them out here.

But we are here for a reason.

frustrations and all.

there IS a reason.

Thank you for your prayers, and for reading this far if you have. I’ll try to have a happier post up to replace this one soon. But for now, these are my thoughts and feelings and emotions, so up they go.

peace out, for a little while at least.

Is the drive I think. Driving away from home, towards the hospital. Leaving half of my heart at home with the three who are so excited to see me, thinking i am home for good with kendall, and driving towards the other part of my heart, laying in her hospital crib, yanking her tube out for the 28029th time today. little stinker. lest you think poor baby kendall is lolling around being a sick baby, she will now display for you the fact that she is NOT as sick as her inpatient status would lead you to otherwise believe.

Today she has managed to puke JUST enough to concern her docs, but not enough to get her on IV nutrition as threatened last nite. YAY! 

she has also seriously pulled her NG out 5 times. In less than 24 hours. this was SUCH a better idea when she was totally hypotonic and had no therapy! now that we are encouraging her to use her arms, pull them to midline, grab objects – well, hey, who are WE to get upset when she does all of that with her oh so convenient to grab and yank tube right there on her face???? The problem is, she just looks SO DARN CUTE when she is sitting there holding a tube spraying formula all over herself like –  ”look mom! you do’nt have to worry anymore, i got this annoying thing out of my nose ALL BY MYSELF!!!! aren’t you proud???”

She also ripped the nebulizer tube away from her respiratory therapist and put it into her mouth all by herself and held it there till the meds were gone – it was seriously cute. and if i seriously could find my camera battery charger i could show you a seriously cute picture of her doing it! but i can’t. so that will have to wait.

So all in all  - just another exciting day here at our home away from home.

I did get to go home and get my phone and laptop chargers at least. take a shower in something that i can actually fit my whole body into instead of the “SPACIOUS PRIVATE SHOWERS” in each patients room here. by spacious i am assuming they mean, hey, if you are anorexic and/or under the height of 4 feet, you should be good to go!” if you’ve ever seen the will ferrell movie “elf”, you know the scene where he is all cramped up in a shower, splashing water on himself? that’s what the showers here are like. If you think ahead and don’t mind a four day wait, they can also put you on a list to get into the parent’s apartments they have here. where you can take a shower in a real shower. maybe i’ll put my name down now, and by the time kendall decides to have another full body meltdown, it will be my turn!

sorry. i am using humor, or attempting humor, to distract me from the fact that i think i have ebola virus of the optic nerve, ben is still in WI for work, my other three children aren’t with me, and i am not with them, and i am probably coming home with a child back on tube feeds indefinitely. but i have to keep telling myself, its not a step backwards. its just a step. just one step in kendall’s journey.  I know we are here for a reason. i begged and pleaded with God to only let us come inpatient if it meant answers. So i have to believe that SOMETHING will come out of this stay. 

She does get to go have an actual imaging study tomorrow. and boy does it sound like a hootin’ hollerin’ good time – a barium enema. Not to be confused with a barium swallow study – no, no. this time they’ll shove the barium UP the exit-hole and see what happens to it. how they come up with these tests is really beyond me. but if it tells us more about why kendall cannot seem to regulate her own GI tract, then great. so we’ll have that fun test bright and early thursday morning. We are still waiting to hear if they can coordinate an OR for us to have a few other imaging tests done while we’re inpatient here on Friday, vs waiting till next thursday and doing it outpatient (as was already planned, just not for as much testing as we are now looking at trying to order). i am VERY grateful that at least this GI is finally listening to us when we are saying ” LOOK INSIDE THIS CHILD PLEASE!!!!” Playing “pin the meds on the baby” isn’t working for her anymore, and I’d REALLY like to break this 2.5 month streak between hospital stays at some point in her first year of life. If we could just have SOME kind of prognosis about who/what/when/where/why she is still struggling with her dysphagia (not swallowing right), and food allergies (to completely hypoallergenic elemental foods), and then throwing up most of what she eats (in spite of 4 or 5 different meds to stop that), then we’ll be good. i do’nt need to have a written in stone answer handed down from Mt. Sinai (although that might come in handy!), i just need to have at least a dartboard to start throwing darts at. Right now I feel like we’re just throwing a bunch of darts up in the air while being blindfolded.

I can pinpoint that its clearly exposure to heat and humidity making her go all rag-doll like and stop functioning from a GI standpoint. the question is WHY. sure we all get affected by the heat to some degree, but you don’t just see a bunch of people puking their guts out laying around on their driveways because it got a little humid outside. So something in kendall’s makeup has her just a little too sensitive to it all. Her system is working just a little too hard to try to maintain a baseline. And i just need to know what is the plan to try to support her. Cause it just really isn’t going to work out for me to run her up here for a tune-up every two weeks. there has to be a better way.

But we can only take it one step at a time, so that’s what we’ll do. Starting tomorrow morning.

sorry to be so rambly – apparently my starbucks induced hyperactivity just came to a screeching halt!

i’ll post more tomorrow when we know something.

terra

Kendall was only 13 days away from her longest “not in the hospital” streak ever.

And it ended today.

She is doing pretty good right now. She isn’t in distress,she  is breathing on her own, no oxygen. But she is just…..something. She is choking on her bottles, and then puking up most of what she chokes down. Then she spends about 2 hours breathing really raspily and “junky”, and then she’s fine for an hour before starting the process all over again. This morning I was just very panicky over it, and that was exacerbated when i called her ped for assurance that i was overreacting and she said we needed to go to ER immediately for a stat chest Xray. Nice. Not quite the direction I was looking to head.

So i called Dr. A for a second opinion, and he said, put her NG tube back in, and get here immediately.

So we did.

And here we are.

And they are poking my child and inserting tubes into her and she is screaming and i can’t touch her.

But i think we are in the best place for her. for right now. this is so hard hearing her screams and knowing this is what she needs…this is the hardest part of being kendall’s mom. i am fighting back the tears but i have to be strong for her for just a few more minutes. she has had all her vials of blood drawn, gotten her first breathing treatment, and now we just have to fight through getting her tube dropped and then its time for sleep. they don’t have her exact formula though so we have to go back on the neocate for tonite, which we know will make her break out in hives and possibly have a little respiratory distress. if the tube feeding doesn’t work to get her more hydrated she is going to Iv fluids. that will be way too much fun to handle, having them place an IV.

so tonite i don’t have much to say, other than we covet your prayers. maybe this admission will bring us closer to answers. maybe this time we’ll have a name for this mystery THING that plagues her.

wow – she’s really pissed off.

hopefully she sleeps finally.

hopefully the pharmacy sends up benadryl soon.

and if anyone has a spare mac charger and/or iphone/ipod charger they want to swing on by LG, let me know!!!

me