Better known as “breathing”. Taking a breath. Having oxygen exchanged for carbon dioxide in your lungs.
you take for granted that all of this AMAZING stuff happens when you inhale and then exhale – indeed, how often do you stop and even have to focus on inhaling or exhaling? (Assuming that you aren’t currently suffering from a cold/sinus/allergy/asthma type illness, that is). I mean really – do you KNOW how awesome it is that things work RIGHT most of the time??? I didn’t – and still really don’t get all of it. But I have learned enough to know that when one small part of this process is interrupted, it can definitely start causing a lot of big wreckage further down the line. This is kind of where we are at with Miss KQ.
My thoughts are a little scattered on this all tonite – probably because there is just SO much to sort through and try to process and turn into understandable info. Basically – she is doing “ok” – as in she isn’t in any kind of downward spiral at the moment. She is playing and laughing and learning new things every day. For all intents and purposes, she seems like a normal healthy baby from the outside. Unfortunately, you can’t always judge a book by its cover though – and you can’t always judge a Kendall by her few good daytime hours. Starting last week – almost exactly one week off of antibiotics, 10 days after being in the hospital for her last respiratory illness, she started up with MORE cold symptoms. And while I was about 97% sure it was (is) just your basic average common cold – it REALLY started taking a toll on her little body. What does that mean exactly? Well – it started with something so small that probably no one else would ever have noticed it – but it just seemed so ODD to me – her right eye was purple-y and swollen. It was really noticeable in pictures that day, and I could not think of any reason why she would have a black eye – she hadn’t banged it, there wasn’t really a bruise there – it was just the shadow of the puffiness. The next day it was the other eye that looked the same way, and that nite her pulse ox alarm kept going off because her HR was in the 190’s (while she was in supposedly deep sleep). She was satting well (keeping her oxygen saturation number up), so I just raised the parameter on the alarms and tried to get some sleep myself. The next day she started in with the respiratory symptoms and that’s how i knew everything else was just signs of her body trying to fight something.
when she is getting sick, she does pretty much what you would expect: her nose starts running and doesn’t seem to stop, she gets cranky, she sleeps a lot more, she coughs, she doesn’t want to eat. AND she does things that you wouldn’t expect: her runny nose looks eerily like it MIGHT be her formula regurgitating up and out her nose, she goes completely rain-man cranky over the craziest little things (changing her diaper, giving her too many pieces of cereal on her tray, putting shoes on/taking shoes off, take your pick), she goes from sleeping 17-19 hours a day to 20-22 hours a day, her cough often makes her gag/retch/vomit, and not eating means that the little food she is taking in orally causes major choking episodes, the food that goes into her tube either comes back up or causes tummy pain, so it has to be diluted with pedialyte or changed over to straight pedialyte. All of this combines then to make more problems in that she then will either be peeing out too much fluid (and thereby looking more puny/bony), or she is retaining water and not peeing for the whole day (making her look nice and chubby, except it’s all just water puffiness!). We were supposed to follow up with nephrology last year after her Feb/March admissions – but got so sidetracked by all her GI issues that kidney issues took a back seat. We know that there is SOME dysfunction going on in there (as evidenced by every set of labs we draw on this kid), but aren’t sure how it all ties in with the metabolic stuff. I am hopeful that our marathon of appts next week can help us get some direction in this area.
So anyways – that is kind of what is going on for the last week – nothing that by itself is horrible, life-threatening, or ER worthy – but it is an overall picture of many processes not quite working the way they are intended to, and me feeling like I don’t know which hole in the dam to plug first, or really, how to even go about plugging dam holes in the first place! By Thursday she was vomiting bile, having a lot of bile and pressure come spewing out her g and j tubes, having the high heart rates but without the good sats, and was just a sick baby. i spent Wednesday nite and Thursday nite on “ER watch”, where I am making plans B-G about how to get her to the ER, which ER, what to do with the girls, etc. – and so by Friday I knew that if i didn’t call and talk to SOMEONE, that I would be regretting it by 4 am Saturday morning when i was once again on ER watch! So I called Margie, Dr. A’s dear long-suffering nurse and left a message something to the effect of ” Hi Margie! i am only calling cause it’s Friday and we all know how kendall likes to get sick on the weekends! So if i call, then she’ll be fine, and if i don’t call then she’ll be sick so I am calling! here’s what she’s been doing – I know Dr. A isn’t even in the office today, so there, I called, you know, we will see you on Monday for our regular appt!” She called me back about 3 hours later and told me that oxygen would be delivered that afternoon. She had paged Dr. A, told him what i told her, and he said enough is enough – she needs the support.
Sure enough – that evening, Ben and I were officially “oxygen therapy” trained on how to use an oxygen concentrator and portable oxygen pumps for Kendall. I guess i was thinking that Dr. A meant “at nite, if she is having a hard time with sats and/or her heart rate, then turn it on super low, only going up if she isn’t responding”. I knew it would help keep us out of the ER for the weekend, but really thought we might get in to his office on Monday for our appointment (which was just our post-hospital follow up) and that he would say that she didn’t really NEED it, and we could send it back. I think Ben thought even less than that. Kendall HATES the nasal cannula (well she hates anything on her face or hands, all the time, any time) – we found it around her neck after an hour of trying to get her to sleep with it – so we took it off and just prayed that she would be ok without it. Tried to not give it another thought.
Until today’s appointment.
Basically I came out of the office today with four main takeaways:
1.) The oxygen is needed. She needs it to support her overall energy levels, to boost her breathing, to help the metabolic processes that are being disrupted by either the MMA or just her current illness. Bottom line from the big man: “I ordered it for a reason – and that is not to just sit around your house. Use it on her, use it liberally, and HELP her get better and stronger.” Ok! Point taken!
2.) Her lung issues/recurrent colds are more than likely caused by aspiration. either from above (when she is attempting to swallow) or from below (when she is vomiting/retching as a reaction to who knows what – metabolic stress? reflux? pluto not being a planet anymore? take your pick!). WHERE it’s coming from isn’t really the issue. We’ve done what we can to stop it from coming UP (the fundo surgery and now j-tube feeds), so we need to look at eliminating it being aspirated (swallowed into the lungs) from above. which means taking her “NPO” (no more bottles, possibly no more food by mouth). He is willing to wait a week to enact “PLAN A” – which is that her video swallow/follow-thru test next week in milwaukee shows that she IS aspirating, and her GI will direct the orders to go NPO.
3.) Plan B would be that the test “appears” normal (meaning that she doesn’t directly aspirate or reflux the food during the 20 minutes of the test) – but we decide to do a 2-3 month trial of making her NPO on our own (with the blessing of all of her doctors), to see if we don’t see improvement in her lung issues. Dr. A is pretty confident that either way – Plan A or Plan B – that we are dealing with an aspiration issue here, but that if we take her NPO for a year or two, it will protect her lung tissue from any further damage (and is hopeful that because she is so young that any damage she DOES have right now can be undone because lung tissue is still regenerating at such a fast pace the first 3 years of life), it will eliminate these seemingly non-stop respiratory illnesses she is dealing with, and will allow her to build her strength and coordination up to be able to re-learn how to properly eat/swallow/chew without needing the Heimlich once a day (at least!). It sounds like an awesome theory. But I know it would be devastating to her (and us) to have to take her NPO. she LOVES eating. loves it. loves the taste, loves being with us at the table, loves the social interactiong of it – everything. It would be very hard to deal with. BUT – like Dr. A pointed out – at least we have SOMETHING we can try. Many kids do’nt even have a Plan A OR a Plan B. So I know I should be thankful that we can at least TRY this.
4.) the last part of our conversation was about the fact that, while he feels the chances are slim, there IS still a chance that this could just be her baseline – that the hypotonia (muscle weakness) in her trunk/accessory muscles (used for breathing), in the smooth muscle of her diaphragm and lungs – that its just TOO much for her body to ever be able to really breathe/cough/function right. Her heart might be more of a culprit here (again – hypotonia affects the muscles – heart being mostly muscle). There are a few other darker paths that we may need to go down if we get to Plan C – but for right now – we are very hopeful that one of the first two plans will help get Kendall on a good path. One without a lot of food on it – but a good path nonetheless!
So that’s what I am working through tonite. I am sorry if it doesn’t make much sense. It got a LOT later while I was trying to finish this up…
and I still have a good 30 minutes of tube attaching, cannula taping, food preparing and machine priming ahead of me…..
Hoping that tonite you are all inhaling and exhaling without much ado. Thank God for that awesome ability the next time you think about it.
Peace out.
t
And no i am not talking about basketball.
I am talking about the insane kind of mad you go when you have cleaned up a 2 year old’s mess-making chaos at LEAST 828 times in the past 6 hours, and you haven’t changed out of your own pajamas all day, and doing one task leads to 7 others, which require you to look in 23 different places for the one thing you need to complete the 5th item, and then you find something ELSE to add to your list of things to do while you are still trying to JUST BREATHE and start your day.
THAT kind of madness.
The kind that can only come on the heels of a very long winter. With still a few weeks left to go before any kind of real relief is in sight. I am sure you have all been there. Or maybe ARE there still. I am sure I will snap out of it soon. i hate feeling this way. I am sure my family hates me feeling this way even more! But such is the circle of life. It is this growing underneath the ground, waiting for the right time to become a new little shoot of green poking up through the dead brown grass around you. It is the pains of trying to push through the hardened earth that has protected you all winter, and reach for the warmer sun.
I am just tired I think.
But hey, if I can make it to midnight tonite, it will be a WHOle week since we have been in the ER or a doctor’s office. So I’ll take that! I am still having bad pains every once in a while, but I can’t attach them to specific meals, so i don’t even know if it’s more gall bladder or more ulcerish (the two things they are tossing out as possible explanations for all the craziness of last week). Either way – I am just ready for it to all be gone. Ready for normalcy in our life (wait did I just say that out loud?!?!? What does that even mean????) Ready for the warmth (at least in a relative sense) of spring days. Ready to get out of the house and into the yard and back into enjoying life OutSide.
There is really nothing new to report aside from that. We survived Kealey’s birthday party with a few of her school friends (I couldn’t handle more than a handful of 8 year olds running around here with makeup on and dancing to miley cyrus tunes!!!!) – I was so glad to see her really soaking up the awesomeness of a day JUST for her! She totally got the short end of the stick last year with Kendall being discharged ON her birthday with the PICC – so Ben and I were zombies until the 2nd week of March, and then 10 days later Kendall was back in the hospital! We went to see a movie with a couple of her friends from the neighborhood last year – but I know it wasn’t the same as having her own real birthday party. So I tried to make it up to her this year. And I think it worked! I will have pics in a future post I promise!
So that’s where we are on this first day of March. Ready to shed this winter. Looking forward to a good spring, to newness, and mostly to sunshine and warmth. I would love by some miracle to be able to go somewhere for the girls’ spring break – somewhere warm as long as I’m dreaming! But I think we might have to settle for the relative warmth of the end of March as compared to the beginning of March!
We have a couple long days in Milwaukee coming up in a couple weeks – 4 appts in two days so far – but I haven’t finished making phone calls yet to see if we can cram even more into our two days!!! Kendall is doing good – we just need to figure out where this random “reverse pressure” seems to be coming from in her gut (meaning when we try to plug in her venting/draining tube, pressure from her stomach is popping it right back off, making it very hard to then be able to get the air/pressure out!), and then just some general check-up and wellbeing questions with her complex care team and genetics.
We also had a chance to finally get some “1 year” pics of her! i mean, ok so she’s closer to 16 months now, but really, who’s counting?!?!?! As soon as I get my hands on some of them (my darling sister is editing them, well, she will be as soon as her computer gets fixed….) i will post them here for all to enjoy!
More Whiney Boringness headed your way tomorrow!
mele kalike’maka.
terra
8 years ago today was the last day I walked around as just me.
How could I have known then all that becoming a mommy would do to me, would mean to me, would change me?
I sat in my little office trying to ignore the discomfort of the escalating pains building in muscles I didn’t think still existed. Focused on getting all my work done because somehow i just “knew”, without really knowing, that life was going to change in the next 24 hours. I drove home happily blaring songs on my radio, in my cool cherry red jeep grand cherokee. I watched a television show that I wanted to watch. I ate ice cream for dinner just because that’s what I felt like eating. I didn’t sleep a wink because the “cramps” (aka to the experienced mother as “contractions”) were getting so bad.
I walked into the room we had so lovingly prepared, still not knowing if my baby was a boy or a girl, and touched all the adorable teeny tiny little things that were for this squirmy painful thing inside my hugely expanded belly. I remember spending two hours doing my hair that morning. I don’t remember why it took so long, nor why it was so gol-danged important that I had to do it, but oh the luxury!
And that was pretty much the last time in the past 8 years, that I have HAD such a luxury! That evening I became a mommy. I found out what it was to have a part of you forever torn from your heart and walking around on this earth, open to any injury or wound from careless words, horrible viruses, and idiotic people. I became who i really am today. Of course I didn’t know then that I would possess the strength to endure four long painful labors (ok three long ones, and one crazy quick one), that i would have the endurance to go weeks on end with next to no real sleep while my babies adjusted to life outside the protection of my womb, the patience to teach a wriggly little human being how to eat, and how to sit up, and how to use the toilet and how to tie their shoes and how to do somersaults and how to color with the outside shading and how to write their name.
i had no idea of all that I had inside of me on this day 8 years ago.
I thought it was just a baby. Possibly a kitten. But pretty sure a baby.
And i ended up finding out it was so much more.
Sometimes I miss that girl I was before February 27, 2002. I miss the carefreeness of being able to have my schedule affect me and only me. I miss the fact that my hips used to be in the original position that God put them in. I REALLY miss being able to fit into normal sized bras/jeans/etc. I miss a number on the scale that I am unlikely to ever see again in this lifetime. I miss the brain cells/capacity for memory that i had. But i still catch glimpses of her every now and then.
when we turn on crazy hannah montana songs and dance around together, me and my baby girls, while we are cleaning up 387 polly pocket pieces and ground-in pop tart.
when we sometimes have ice cream for dinner, just because that’s all we feel like eating.
when i see my little girls laugh so hard they throw their heads back and let loose an obnoxiously loud fit of contagious laughter.
when i see my baby girl hitching up her jeans from falling off her too skinny little body and hoist her backpack onto her thin little shoulders (sad, she’ll never have the shoulders for most dresses…), and board a bus that has held some scary moment for her in the past all by herself.
when I see the determination in the eyes of my littlest brave toaster, setting her mind to figuring out how to make her muscles work together to get over to that toy she so badly wants to play with.
when i see them all together – loving each other, helping each other, sticking together on the nites when it’s been a long hard week and everyone is tired – i see how far I have come.
So today I’ll raise a glass (of McD’s coke – some things never change) – to me. To celebrate the me that once was, and the me that i have become. And to all the moms out there, who never realized just how much becoming a mom would change you, and yet are making the changes every day.
bottoms up.
Terra
I tell you – it is always somethin’ around here.
I will try to do a real update tomorrow, or very soon.
Between last week’s ER visit for the hives (me), Kendall’s random day of violent retching/body trying to digest her tube on Saturday, and another day in the ER for stupid abdominal pains of unknown etiology (me again), it has just been a week around here.
Besides realizing that I have a serious love of the narcotic medicine Dilaudid, nothing spectacular has come of any of our random medical issues. Luckily – everything else has been smooth sailing.
So after I try to sleep tonite (because the half a glass of hot chocolate i tried to consume two hours ago is still causing me enough pain to swear off hot chocolate for at least a year) – i will attempt to do a real update.
Thank you so much for all of you who are praying continually for us.
ONE of these days – i will have not updated simply because our life is so boring it would bore me to tears to write about it.
keep on keepin’ on.
terra
(A friend posted this on her FB a few days back, and in reading it, I was moved to tears. Some days I am able to just go about life with Kendall as if its all totally normal, and other days I am overwhelmed. I know that I do not go on without the grace and strength of my Lord Jesus Christ, and the support and help and love and gallons of milk and cans of coke and fun little gift cards and notes from all of you. so thank you. And because I am sure I will be yelled at without this – GO GET YOUR KLEENEX!!!)
Written by: Lori Borgman Columnist and Speaker
My friend is expecting her first child. People keep asking what she wants. She smiles demurely, shakes her head and gives the answer mothers have given throughout the ages of time. She says it doesn’t matter whether it’s a boy or a girl. She just wants it to have ten fingers and ten toes. Of course, that’s what she says. That’s what mothers have always said. Mothers lie.
Truth be told, every mother wants a whole lot more. Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin.
Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly. Every mother wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two). Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that
are the envy of the entire ballet class. Call it greed if you want, but we mothers want what we want.Some mothers get babies with something more. Some mothers get babies with conditions they can’t pronounce, a spine that didn’t fuse, a missing chromosome or a palette that didn’t close. Most of those mothers can remember the time, the place, the shoes they were wearing and the color of the walls in the small,suffocating room where the doctor uttered the words that took their breath away. It felt like recess in the fourth grade when you didn’t see the kick ball coming and it knocked the wind clean out of you.
Some mothers leave the hospital with a healthy bundle, then, months, even years later, take him in for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of devastating news. It can’t be possible! That doesn’t run in our family. Can this really be happening in our lifetime? I am a woman who watches the Olympics for the sheer thrill of seeing finely sculpted bodies. It’s not a lust thing; it’s a wondrous thing. The athletes appear as specimens without flaw – rippling muscles with nary an ounce of flab or fat, virtual powerhouses of strength with lungs and limbs working in perfect harmony. Then the athlete walks over to a tote bag, rustles
through the contents and pulls out an inhaler.As I’ve told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echo cardiogram, there’s no such thing as a perfect body. Everybody will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, medication or surgery. The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it. Frankly, sometimes you mothers scare me. How you lift that child in and out of a wheelchair 20 times a day. How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundred specialists yammering in your ear. I wonder how you endure the clichés and the platitudes, well-intentioned souls explaining how God is at work when you’ve occasionally questioned if God is on strike. I even wonder how you endure schmaltzy pieces like this one — saluting you, painting you as hero and saint, when you know you’re ordinary. You snap, you bark, you bite. You didn’t volunteer for this. You didn’t jump up and down in the motherhood line yelling, “Choose me, God! Choose me! I’ve got what it takes.”
You’re a woman who doesn’t have time to step back and put things in perspective, so, please, let me do it for you. From where I sit, you’re way ahead of the pack. You’ve developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule. You can be warm and tender one minute, and when circumstances require intense and aggressive the next. You are the mother, advocate and protector of a child with a disability. You’re a neighbor, a friend, a stranger I pass at the mall. You’re the woman I sit next to at church, my cousin and my sister-in-law. You’re a woman who wanted ten fingers and ten toes, and got something more.
You’re a wonder.
So today, on this day of love, I post this in honor of all the beautiful moms I know of Special Needs Children. To all the moms who have guided me on my journey through the maze of therapy, adaptive equipment, tube craziness, med changes, specialists’ lingo and the emotional chaos of adapting day by day. To all the moms who have helped me become the mom I am today – my own mommy, my grandma(s), my mother-in-law, my mommy friends, and just my own good buddies who have been there through all the ups and downs. Call this a “hallmark holiday” if you will – but I KNOW what it’s really about.
It’s about getting a chance to celebrate the fact that LOVE is what gets you through the tough times, and rejoices with you in the really good ones.
I love you all.
happy hearts day.
T
Really – do you even realize how wonderful of a place home is until you are away from it for a few days? That familiar smell of the fabric softener when you open the garage door, the way my pillowcase smells, ben’s shampoo in the bathroom. How very comfortable it is to sleep in a bed, with a real pillow made of cotton instead of plastic hypoallergenic material.
I thank God that this was a short stay for Kendall. For those who are not aware, let’s see if i can catch you all up. I should have blogged more last week. Or at all – but who’s counting, really? Anyways – so starting last Sunday, Kendall started showing signs of getting either this same cold/virusy thing BACK that she has fought since December, or a new one, that looked eerily similar to what we’d been dealing with. Sounded similar too – with the real junky liquidy breathing, increased nite coughing, puffy eyes, and the crazy amounts of snot pouring out of her face. She did her sleep all day, and all nite, gig on Sunday and Monday, and her therapist on Tuesday even put in her notes “Kendall was extremely tired during her session today”. By Tuesday afternoon I had just a weird feeling – like something was making me feel like my alert level should be heightened, but it wasn’t anything specific that I could put my finger on. I tried to convince myself it was just because of next week’s “anniversary” of going into the hospital and kind of starting this crazy medical journey we’ve been on. But the feeling would just not go away. Wednesday was a somewhat busy day, and we didn’t come home from our running around till 6:30 pm. I put Kendall immediately to bed at that time with her pulse ox monitor on, feeling relieved that we had made it in to the chiropractor and that maybe now Kendall’s body would have more ability to fight off this junk she was dealing with.
Kendall’s pulse ox alarms started going off about 8 that nite, and continued to alarm at least once an hour right up until I went to bed around 11:30. Sometimes she alarms because her O2 “sats” are dropping – meaning the saturation level of oxygen in her blood has dropped to a level we don’t want to see (low 90’s is what her pulm doesn’t want her to get down to), and sometimes it alarms because her heart is working a little too hard to KEEP those sats up. This is actually an appropriate response to have, and isn’t so much an “alarm-worthy” event, except when her heart is working that hard for most of the nite. The alarms aren’t there so much to tell us that something is going way wrong as much as to tell us that something is happening that we should keep our eye on. So when I started hearing a lot more alarms than usual (typically I might get one or two a nite that resolve themselves within a minute or two), I admit that my already heightened alarm level was close to being raised ANOTHER level! For her first few alarms after I went to bed, i was getting up and going in and watching the monitors, and I could hear her breathing from the doorway with all her congestion, so I’d just keep my eye on her to see what she was doing. They were mostly all kind of “combo” alarms, where her sats were in the low 90’s, with a pretty high HR to pull her back up. She would kind of pick herself back up within a couple minutes, and while she was breathing a little faster than I would have expected for nite time, I was pretty sure it was just due to all the congestion. Her body seemed to be doing all the right things to handle the hardness of breathing she was working through. So by 4 am when I heard yet ANOTHER alarm, I thought, ok, she’ll pull out of it. But it kept alarming, much longer than any of the others typically alarm for. I went to her room, saw the numbers and went into full out panic mode. She was at 77 for her o2 sat, with a HR of 65. Her normal is 97% o2 sat with a HR in the 110-120 range. This alarm was for a BAD reason. I went over to her, could not hear her breathing like I had all nite, could not FEEL her back moving (indicating she was breathing), and she was freezing cold. I started patting her back and calling her name thinking she maybe just needed to wake up and take a big breath, but that wasn’t helping, so I flipped her over and she was just a rag doll. I was whacking her on her chest, rubbing her sternum, calling her name, praying for the numbers to jump back up, trying to slap her cheeks a little – ANYTHING to get her to wake up, to breathe, to bring those numbers up and make the alarms stop. I have no idea how i made it through those few minutes which felt like forever but was probably only 2-3 minutes. I somehow thought to try squeezing her toenail beds with my fingernails (clearly I watched way too much “ER”), and I am not even sure that that is right thing to do – but it worked along with everything else, and she took a big gasp inhale and I could tell she was awake. It still took a few more minutes to get the alarms to stop going off and bring her numbers back up to an acceptable range, so I just held her up for a few minutes until i knew she was kind of over the hump. I about took her monitor off and put it on myself because I am SURE my own heartrate was well into the 200’s!!! i was just so panicked because i didn’t know if i should leave her and go call 911, and Ben wasn’t here so I couldn’t call him and it just seemed like I needed to stay with her. It scared me pretty badly. I think I only went back to sleep after that out of sheer exhaustion – but I was up again within an hour for more alarms. none as bad as that 4 am one though. Once i thought the offices would be open, i started calling her team. Complex Care was the first to call me back (since we had already had a phone call set up anyways about some of the HR issues I had already been seeing and her tube site looking so nasty) – and her NP (nurse practitioner) suggested that I call her pulmo (Dr. A) to get his thoughts. So I talked with Margie the nurse at his office and she seemed relatively alarmed at the numbers also and said i would probably need to bring her in. Of course a few hours removed, and seeing her up and smiling and happy to be eating her cereals, I thought, ok maybe I am over-reacting. Hearing both of those nurses be as concerned as they were was a definite reality check. I was NOT looking forward to having go up to LG (the hospital), but if Dr. A did want to see her, of course i would, crazy as it is to have to find arrangements for karissa, kaylen and then both girls after school. And sure enough, the call comes back less than a half hour later – she needs to come in.
Ben was somehow able to rearrange some meetings and drive from milwaukee to meet us at the appt, and thank God that he was. We get there and go to check in and the receptionist tells us we need to go immediately to radiology for a CXR (chest x-ray). Seriously. I could probably set up a CXR by myself in my sleep by now this kid has had so many of these. Strap her in to high chair, wrap her with wide velcro strap, wrap her with lead apron, get my lead apron on, hold her hands above her head without her dislocating her shoulder (this is not easy given her unstable large joints and her absolute Rain-Man-ness about being touched or pinned down against her will), wait till she takes a big inhale after holding her breath screaming, take picture. Turn big chair sideways and repeat.
From that moment on she started to get more and more and more wheezy and junky and I am just beating her chest and back trying to get her to cough up SOME of this junk because I know if Dr. A hears all that it’s a one way ticket to the floor. And clearly that was all to no avail because when he comes in and examines her and we go over all that has happened since our last visit for pneumonia three weeks ago – he says “well, she’s a very borderline situation. My preference would be to admit (except he says it like this – aD-meet) her, but I will leave it up to you. We can try to continue treating this at home, but i will be honest, we are looking at at least a few more weeks of this. Or we can put her in for a few days, get her full of IV antibiotics and steroids, and start to beat this sooner than later. But i will give you a few minutes to think about it.” i looked at Ben and he says “put her in. It’s time to just get her the help she needs and get her OVER this thing already”. So at least the decision wasn’t really ever in my hands. I hated having to be in that position. It truly could not have come at a worse time. Friday I had to be the room mom for Karissa’s Valentines Party, Saturday was the girls’ first big all day dance competition, and Sunday we had a big meeting at church that I still had about 4924 things left to do on.
But I think it was the right decision to make. I knew I could not take another event like Wednesday nite again. I knew that I had been on “orange alert” for a reason, and that this was my chance to calm down a little, try to get a hold of what is going on with her.
So in record time, we were heading up to the NEW peds floor – I made Dr. A request a tower room for us. It’s the little things in life, you know? Fancy new rooms, with cool disco lights, TONS of space for all the pumps and crap we have to have for kendall (because God forbid they put the IV pump on the same pole as the feeding pump, and don’t forget the pulse ox machine) – we used to trip over ourselves in the old rooms. Although I will say they were a little quieter. And a LOT easier to ummmm….smuggle contraband items into. If you know my penchant for kleptomania of medical items, you’ll know what means! 
But it was nice to have a view of real life out the window, and to know that we weren’t there for a long drawn out stay with no answers. It’s still not fun to have to be inpatient at all, but at least this time was kind of on OUR terms, not some crazy out of control medical situation which no one knows how to handle or calm down.
So that’s what happened on Thursday. I’ll post about the actual stay itself in another post.
peace out.
T
Tags: Kendall, metabolic disorder
They just took Kendall back – Ben went with her to deal with the pain/screaming/flailing because I just didn’t feel up to it today. I can’t see that look in her eyes today as they try to hold her still to insert a long thin tube through her stoma and down into her intestines. So Ben will be the strong one while I sit out here and work my own intestines into knots over hoping that she doesn’t freak out too badly.
Will update more when we know more!
of milk that is.
Yesterday afternoon I had a virtual milk parade on my front porch.
My fridge went from nearly empty – to nearly overflowing. That could be because Kaylen helped me put things away so everything is crammed onto the one shelf she can reach…but who’s counting, really? FIVE gallons of milk we have now. FIVE. Just in case you ever wonder if God really does hear your prayers – He does. So be careful what you are really and truly seeking. Because yesterday morning my prayer was – God please just let me be able to go get some milk today. And it’s not that I couldn’t have afforded a gallon or two of just milk. I don’t want you all to think we are completely destitute! But the thought of dragging them all out to the store with Kaylen fighting yet another crappy coughy cold, Kendall who is constantly in one therapy or another OR recuperating with a nap from all the therapy, dealing with the coats and the cold and all that – for just some milk? Yeah – it was THAT overwhelming.
So just to show me that not only could He provide the gallon of milk I need, but above and beyond what I could ask for – He sent five gallons. From a few different people. And cheese sticks. And Coke. And lasagna. And so many other good things that I do’nt even know how to put it into words except PRAISE GOD from whom ALL blessings flow! And with the blessings were also flowing my tears – so very touched by the generosity poured out upon us by so many of you.
and it was as if each and every one of those gallons of milk was like a great big huge HUG from God – reminding me that He does indeed care about the tiny AND large details of our lives. It may not always SEEM so, but that doesn’t make it less true. He cares about us. All of us. You, me, our babies, our husbands, our parents…he loves each of us so much. I don’t know WHY He chose to bless us like He did last nite. I do not feel very much worthy of it any more than so many others I know. I cannot fathom how or why He does what He does. But I can be grateful. And humbled. And I am.
And I think that’s about all I can say about that right now. Thank you seems so inadequate, as I so often feel in the face of generosity like this. And yet, to those of you who were the hands and feet of God yesterday with all that you brought to fill up our fridge – I hope you hear how very very very thankful I am for what you have done. It was more than just food for the bellies of my babies, it was food for our very soul. I wish I would have taken a picture of the girls’ eyes when they came home from their dance class to see all the milk we had in the fridge (and the coke!) – and I was able to tell them – GOD will always take care of us. He does it in little ways and He does it in big ways. And we prayed and thanked God for all the people who had helped us with our milk, and prayed for people who needed milk still. And it restored some much needed “spring” to the winter of my soul – the part of me that was just too worn out to even form coherent prayers for all that is on my heart and mind these days. That’s the kind of thing you just cannot put a price tag on. Restoring hope. And faith.
So thank you. For the big hugs that came in jugs. And for the prayers that keep us going just as much as food does. And for just being here to read about the craziness of our days.
Raisin’ a can (of nice cold coke!) to all my homies –
T
I’m going to be pretty honest with you all today – and probably with myself too if I think about it.
But today I am just kind of hanging on. Not because of anything in particular, or even a bunch of “bad” things piled up. But just because it’s been a long winter and today marks 2 straight months of sickness in our house/for Kendall, and last year on 2/2 was the day that Kendall was officially diagnosed as Failure to Thrive and we started this journey. So like I was saying, its just been a really long….year. And today I just feel done. I’d like to buy a vowel please – and can that vowel be located on a warm tropical island where no children are allowed and nothing medical ever happens and you magically lose 85 lbs when you land there? Yes, that vowel. That’s the one I’d like to buy, Pat.
This is part of the “done-ness”. Our fridge looks like this. Pretty empty. I mean sure, we have some basics – a few eggs, some
country crock, one tube of crescent rolls, a big bowl of ceviche i made while the fridge was dying, kendall’s medicine, one thing of gatorade and some pedialyte, and a tub of playdough. Which is supposedly edible. and pumpkin flavored! No coke though. Maybe that is what depresses me! I am honestly shocked to find how much of our day revolves around food that comes out of the fridge. No peanut butter and jelly sandwiches, cause we had to toss the jelly out. No cereal cause we have no milk. Is this getting whiney? Sorry. I just am shocked at the amount of money we had to pay to fix this fridge, the amount of food we had to toss out, and the amount of STENCH still emanating from it in spite of being bleached and scrubbed and doused with baking soda. In a word – it sucks.
And honestly – I have no idea how I am going to get it filled back up again. Payday is a few weeks away still. I don’t even know how to go about making a list of what I need again besides the obvious basics (see above!) But you know what? I believe in a God who knows exactly how it will get filled back up again. I believe that God DOES care about my crappy stinky fridge, just as much as he cares about my myriad other problems, and YOUr myriad other problems – big and small.
This blanket reminds me of that.
See, I was handed this blanket in a bag from a friend a couple weeks ago at church. The note inside was from a dear sweet girl who reads this blog. She lives with her family in Mexico. She knit this blanket for Kendall as she prayed for her for the past few months. And I look at this blanket every day and I think – wow. Someone was PRAYING for us – each and every one of those hard days back then. And I know that every day, someone else is praying for us, even when we feel like we do’nt have the strength around here to pray for ourselves. And we are NEVER alone. We will NEVER be forsaken or forgotten or truly go hungry because our fridge broke down.
Thank you SO much to the wonderful person who knit this blanket – I don’t have your permission to post your name here, so I won’t. But you know who you are, and I cannot express to you what your act of generosity meant to me. Even down to the detail that the colors you chose are quite possibly my own personal favorite color combo ever…your blanket is like a very personalized note from heaven that no matter how crappy my day may be, or feel like, I don’t really have to endure it alone. And somehow, that makes it a little easier to deal with. So thank you – from the bottom of my heart. When it’s not being photographed, this blanket is in Kendall’s bed, where I tell her the story of where it came from and what it means on a near daily basis.
so that’s where things are tonite. I am putting them in God’s hands. Because, well, mind are kind of full. And kind of tired of carrying everything. I am just very very tired. Even as I sit here, I myself still can’t breathe at 100%, and I can hear two, possibly three, different babies hacking up a lung upstairs. Again. Or still. Six more weeks of winter – I hope we all survive!
I really am sorry for the debbie downer tone of this post. But I just thought I needed to kind of lay it out there. Life isn’t always sunshine and roses. In fact, it rarely is. But i can say that tomorrow will be better simply because I have FAITH that it will. I have FAITH that as big as my problems can sometimes be, they are never too big for the God I believe in, the God who can send a perfectly colored blanket to revive a winter-weary soul at just the right time. You gotta be willing to accept some of the bad, so that you can really truly appreciate just how good the good is.
Tomorrow will be all about the good, I promise.
He’s got the whole world, In His Hands,
He’s got the little bitty babies, In His Hands,
He’s got my stinky empty refrigerator, In His Hands -
He’s got the Whole World In His Hands.
peace in the middle east -
T
Tags: Kendall