I should have posted this yesterday when it was all more fresh on my mind.  But I was pretty much the walking dead all day yesterday due to exhaustion, so maybe it wouldn’t have made much sense.

Anyways – we did NOT come home Friday as expected. Right before discharge was ordered Kendall started just freaking out in pain, screaming and writhing and just acting like something was going horribly wrong inside. They ordered an abdominal X-ray STAT (no literally, they said that to me. We all know how much I like repeating it…) – And it came back as “Possible Ileus or Possible Gas.” Please be kidding me. You can’t tell me whether my child’s intestines are paralyzed OR if she just needs to fart really bad?!?!?! I mean, we aren’t talking about something like, oh she may or may not have a slightly cracked bone – it’s literally life or death if they pick wrong.  Their plan was to give her a suppository, and if she pooped then voila, gas gone, problem solved, go home and enjoy. So we gave it to her, one hour later she finally pooped, and proceeded to have an even worse episode of pain/screaming than before. So then they were really confused. Jo-
Jo the idiot resident doctor ACTUALLY HAD THE CAJONES to suggest to me that I try placing a warm blanket on Kendall’s tummy and turning the lights out to see if that helped her calm down.  I am appalled that she paid thousands of dollars for a medical degree to learn that. Thanks doc. That’s actually called “Mothering 101” and guess what – I TOOK THAT CLASS 7 years ago. I told her to please leave our room and come back when she had more information to give me that didn’t involve environmental issues which were NOT the cause of her pain. I was so ticked. I just wanted someone to look me in the eye and tell me unequivocally that it was just gas, and that her intestines would NOT explode suddenly in the middle of the nite. No one could tell me that. Not even the head of pediatric radiology. So we spent another nite, another morning of poking and prodding. Jo-Jo Resident came back in with the BRAINSTORM of an idea to test her for a UTI or an ear infection. My response this time? “That’s good analytical thinking, JoJo, but do’nt you think that the IV ANTIBIOTICS she’s been on for a week would have killed BOTH of those things?” Dejectedly, she admitted that they would and went back out to her drawing board to come up with more genius ideas. Lucky for her, it was the end of her shift. She’ll do great in a pediatric practice with ONLY first time moms who have ZERO common sense for themselves. I think her official practice name should be “Dr. Obvious” – we like to state it in case you can’t see it.

Anyhoo.

Dr. A finally came in that afternoon, looked me in the eye and TOLD ME it was for sure just gas, but went over her from head to toe anyways to rule out other issues. They were taking her vitals at the time, and we noticed she had lost almost a whole pound from her highest weight that week, or ever actually. She had been JUST about to tip the scales into 11 pounds on Wednesday, and was back down to 10 lbs 2 oz on Saturday. This is in spite of adding the fat to her diet. Even Dr. A looked the slightest bit defeated. I definitely felt that way. He pulled me into the hallway to discuss transferring her to one of the Children’s hospitals downtown where they have Excellent GI (gastroenterology) programs, to try to figure out her nutritional deficiencies/issues. I said that I felt she needed a REALLY GOOD GI workup, but that right now we needed a break from the hospital, a break from the testing, the not sleeping, the idiot residents. So he agreed. (Not to mention that we cannot handle paying another “ambulance transport” bill at $45/mile that insurance decides to not cover. That was fun. From her last trip to the hospital. Aurora to Park Ridge. You do the math. Not pretty.)

So that’s where we left things. We were handed discharge papers and meds to go home on within 2 hours of that conversation. It was amazing.

And instead of going home I decided it would be fun to drive up to Milwaukee on the nite we were predicted to get a TON of snow, to go see my family for an early Easter. Ben took Kendall straight home from the hospital, and the girls and I drove up. It was a great visit with the family, I was so craving real human interaction that EVERYTHING was just hilarious to me.Then again, I do have the awesomest funniest family ever. My uncle’s new “quit smoking program” is sure to be a great hit. The steel toed boots should work wonders! Anyways – it was all good until we decided to head home and it decided to start DUMPING snow on the greater milwaukee area. There was 3 inches of snow on the freeway, which is just crazy – we were all trying to stay in the same tracks just following the car ahead of us cause it was a virtual whiteout.

All that to say, I crashed into bed Saturday nite right before midnite and was dead to the world from catching up on a week’s worth of “hospital sleep” until sometime Sunday afternoon. I had no idea what day it was or who i was or where I was when I woke up. And i could still use about two more nites like that!

Kendall continues to have tummy issues. She is clearly in pain for the majority of the day. I am at my wit’s end trying to figure out how to help her or what the problem could even begin to be. But I do feel like we are close to finding the root of her problems. Or at least a very large part of the puzzle. I spent the afternoon on the phone with a lot of nurse’s at specialists offices, so I should have a better game plan tomorrow as to what the next step is. I waver back and forth between thinking we’ll end up inpatient again for more testing/nutrition pumping for Kendall, and then thinking maybe this new doctor will just have all this awesome diagnostic/imaging equipment in her office and we’ll get it all done in a matter of hours all at once. A girl can dream, right?

So anyways – sorry to be so incoherent tonite. My mind never stops working over Kendall’s issues, how to help her, trying to figure her out and FIND something and FIX her. Topping it all off, Ben finally told me that my silver kitty did go to the big catnip field in the sky after a really quick but painful sickness he has been dealing with for a couple weeks. I didn’t think I would cry as hard as I did because I knew he was sick, like bad sick, and I had actually been hoping the end would come soon for him – but apparently all the pent up emotions from this crazy past week were too much and I just broke down sobbing. Why can’t kitties just live forever in perfect health? Why can’t we figure out how to help babies gain weight and eat normally without tubes in their nose and stomachs?

and yet I know that asking why is futile. It just is what it is. As kealey pointed out to her sister in that voice that only older sisters can perfect -

“{You get what you get and you don’t get upset}”.

Darn skippy.

Your prayers are so appreciated and needed tonite. Pray that Kendall gets some relief from this tummy pain, and that we can get in with the RIGHT doctor VERY soon to start figuring out WHY she has it. Pray that she leaves her NG tube alone for at least a few days. I have had to drop it down her nose a record 8 times in the last three days. Not good for a kid who is recovering from the rhinovirus/pneumonia. I am sure this isn’t helping matters and yet I have no idea how much more tape I can layer on her face without ripping off every last layer of skin she has left.

there is so much more to pray for – my grandma who suffered a bad fall last week and is recovering from that; the little girl on kealey’s bus who was recently diagnosed with bone cancer and is undergoing aggressive treatment currently; just for all the sickness and sadness in our world. We all need Jesus.

I pray that all of you have a great night/morning/tuesday.

Thanks for praying and writing and helping out with the girls and bringing meals and all you are all doing to help us get through this crazy time in life!

 

terra

YAY! discharge orders are in process for us! We’ll be home tonite in our own beds! Showering in my own full size shower, using 2-ply toilet paper again, eating non-starchy REAL FOOD! I cannot wait!

Her pneumonia improved drastically from Monday, probably due to the horse doses of antibiotics, steroids, and nebulizer meds – but whatever – she can breathe now so we’re headed home! Once again we have no clear answers. Her immune levels are “borderline”, but nothing drastic enough to make them say THIS is the problem. Her protein levels are “borderline”, but not enough to make them say – ok we found it! I think at least we are headed in the right direction. Up until today, her weight was steadily climbing. For no reason she has lost a couple ounces again, but this is kind of just how it is with Kendall. No definable pattern, other than a completely unpredictable pattern!

I think I am becoming more ok with not having an answer. My biggest struggle right now is accepting that we may just have a lot of inpatient stays while Kendall gets every virus and bug floating in the air. i want them to FIX THAT. Promise me it won’t happen, tell me she’ll be able to fight off a cold like a normal kid, i don’t even care if its completely false hope at this point – but i want a doctor to look me in the eye and say, no, i don’t believe we’ll see her back here for a LOOOOOOOOONNNNGGG time, if ever. Dr. Aljadeff couldn’t tell me that this morning. He said, in his wonderful almost impossible to understand accent, “Vell. Ve jooost haf to be VEEEEDDDDY carefool vis dis child.” (Translation: we just have to be very careful with this child.) Real world translation: Yeah you’ll more than likely be inpatient again next time she gets a bad upper respiratory infection of any kind –but we’re going to do our darndest to make sure that isn’t for at least a few months.

I guess I can take that.

i guess I’ll have to.

I should start packing. But I hate the waiting game you play when you’re waiting for discharge papers. Its a lot of hurry up and wait. I think that when I first told Ben i would just surprise the girls by coming home by myself, I wasn’t clearly thinking of how the logistics of this would work. I have 2 suitcases, a diaper bag, a pillow, 2 or 3 bags of all her medical stuff, and oh yeah, the baby. No car seat, no stroller, and my car is parked across the street. I have no idea how cold it is outside, but I am betting it isn’t near the 60 degrees it was when we walked in on Monday morning, so I have no coat or covering for either of us. So… I should maybe do some planning on that end.

But i’ll leave you with this bit of encouragement.

It’s a little shaky, sorry. I was doing the best I could to support a floppy baby AND film at the same time. You get the picture. She’s getting stronger by the day. Get a little therapy in this kid and she’ll take off.

Have a wonderful Friday and weekend – thanks for praying!

Today has been just a day. Kendall is very irritable  so when I am not trying to calm her back down and get her asleep/happy, i am trying to restore some sense of calm to my frazzled nerves. Her pneumonia seems to be improving from a clinical standpoint – she isn’t working so hard to breathe anymore, the coughing fits are spacing out, she is doing well on her steroids and antibiotics. So again, short term, she is doing good. She definitely gets tired towards the end of the day and is definitely still dependent on the breathing treatments since she starts huffin’ and puffin’ right before its time for them to come in again, but compared to monday – huge improvements.

Longer term – we still look for answers. Dr. Aljadeff called Infectious Diseases in again to look at WHY does she keep catching every bug under the sun and WHY does it attack her lungs every time? – and Neurology is back in the picture to take another look at the hypotonia – which they had hoped would have improved in the month since we’ve been here with her NG nutrition. So we started this morning bright and early with a blood draw at 6 am. I was actually quite impressed with myself and my “patient advocate” abilities for Kendall – I told the tech that if he would just take the time to get a good poke, and didn’t SQUEEZE the blood out, she should be cooperative. And sure enough – he got it all right away and Kendall never made so much as a whimper – just sucked on that big ol’ green binky and stared at him the whole time! It was about 6 vials of blood today so that was pretty good! All I know that they are running at this point is an ACL carnitine for muscle myopathy (I am just putting together words I hear, I have no idea what that actually means), and then a bunch of IgA, IgE, blah blah blah tests to see how many, if any, immunities Kendall has on her own. They are worried that these tests may still come back normal, which i guess is a bad thing because that still won’t give them any answers – it just means she may still have a lot of my antibodies in her system. To which I say – well dang, if this child has been THIS sick, THIS MANY TIMES, even WITH my immunities – she is in for a world of hurt once those antibodies are gone! I am sure I am not contributing too much to her, seeing as I myself seem to be not the bastion of health around our house…

but anyways. That’s where we are today. Lots of blood drawn, and no answers to match. Seems to be the story of our lives here in the hospital. She is also on restrictions because she has Entero/Rhinovirus. They are not at all sure if this is the cause of her pneumonia, or if she caught a secondary viral infection due to the weakened state with the pneumonia. And then it brings up the question of – ok what caused the pneumonia. At this point they are thinking it is aspiration pneumonia, meaning she is still aspirating even with the NG tube. This all contributes to frustrating the piss out of me because it just seems like we can’t give this kid a break. She has all these odds stacked against her, and then we just keep adding more to the stack. And still we have no answers as to how to help her get a leg up to get over this pile of craziness. So instead of sitting here and fuming in my frustration, i’ll share with you some of what I am learning!

First Lesson: How to get a baby to sleep in the hospital  And yes, I am that bored that I  pictures of myself getting her ready for bed last nite.

 

 

 

 

 

 

sdgtsd

 

 

 

 

 

 

And that is what I do with my nights. I don’t have four of them to tuck in, I only have one, so I can take a half an hour to get the process done. I sometimes wonder if I’ll ever remember what “regular” life is like – because I am so accustomed to the monotony of hospital life, and the chaos of a special needs child even when I am at home. some days I am just so tired I wonder if I’ll ever be untired again.

And since I have hard drive space again – here’s some pics of the boo-boo and the others.

I got sick of all the nurses referring to her as a boy, so I stuck the bow on her head. Like its my fault they don’t have any cutesy pink hospital pajamas in size “shrinky dink”. SHe’S A GIRL!!!!! That mess of gauze in the foreground is her IV taped and padded and stuck to a backer board covering her whole arm.

This is actually from last hospital stay – our last day. She was so ready to go home.

Another one from today – her eyes looked so amazingly blue i was trying to capture them on film and just couldn’t get the crappy hospital lighting to cooperate.

The Kealey look. I hear ALL THE TIME how much she looks like Kealey – which I kind of see, nowhere else as much as in this picture. She looks like she is ready to just stand up and yell at us all about how she REALLY feels about eating through a tube in her nose and sitting here in a hospital bed all day. Someday soon she will give us a piece of her mind. and I’ll gladly take it.

A happy sissy getting to hold her baby sissy today during a quick visit. Somedays I stop and think about how crazy our lives are at this stage, and how well my babies are holding up to it. How does that old saying go – What doesn’t kill you makes you stronger? Our family will be nice and strong by the end of all this. We could not do it without the support of our family, church family, friends, neighbors and Lord Jesus Christ.

Oh how I miss those cheeks of my chunkaroo. This picture makes me smile on a daily basis.

Ok the picture thing isn’t helping me…

I am tired and it is bath time for Kendall and then time for bed if she’s cooperative…

Terra

Check, getcha records, let’s begin.

And if you can complete the words to that phrase – you must have been a teenager in the 90’s!!! Cuz – WHOOMP – there it is.

Now that you’re all happily humming along – here’s why we’re “back again”…

Back in the familiar confines of the hospital.

we went for Kendall’s regularly scheduled check-up today with Dr. Aljadeff. Now I knew she was fighting something since she started getting that rattle at the back of her throat with a little cough on Friday nite –but it wasn’t until Sunday night, when Ben and I literally took shifts holding her upright and giving her nebu treatments, that I thought, you know, this just isn’t normal for a baby to be working this hard to breathe. So i tried to quell the panic, will her to breathe and make it through the night, and just hold on till we saw Dr. A before gettin’ all crazy-like about everything. And sure enough, as soon as Dr. A took a listen to her lungs, he immediately said he was sending her over (as in across the bridge that connects his clinic to the children’s hospital). I am SO grateful that my mom decided to come meet us for lunch today and then to go to the appointment with me. Between all the craziness of carrying a baby, the diaper bag, her feeding bag, my purse bag, her purse, the baby carrier – we looked like Lucy and Ethel just trying to get from point A to point B! It was a crazy afternoon and lots of running around – but we finally got here, got settled, got IV’s started – and you know, in this really WEIRD way, it felt like we were “home” again. Like, ok, I know this routine, I can deal with this. The nurse at the dr’s office even asked me if I knew we were going to be admitted because I was so calm about the news. After our giddiness on Friday at not being admitted, you would think I would take it even harder today –but in my heart I KNEW there was no way we could survive another night like Sunday night.

even now as I type this, after 3 doses of antibiotic, a dose of steroids, and 2 breathing treatments, her alarms keep going off. I can see her little chest rising and falling beneath the blankets. She took a 5 hour nap today after checking in. She is tired. And so I know this is the place she needs to be, for right now at least. I just pray that they will find something on some test somewhere that will tell us WHY her lungs keep getting these infections. They took a chest X-ray before we had a room here on the peds floor today, and Dr. A did come in to tell us it was a “significant bacterial pneumonia”. What that means exactly I am not sure, except something about the word significant doesn’t sound all cuddly and happy. They also swabbed her for RSV which means contact isolation again until we get the results back.  i just want her to be HEALTHY! I just want her to know that life isn’t always about getting tubes stuck in random places in your body, and that it IS possible to have a pain free day and enjoy the sunshine every now and again, and that most babies actually enjoy life and sleep in a regular bed laying down and eat with their mouths. I want her to experience all of that.

I am just sad tonite. Sad, a little relieved that at least we have a doctor who takes action, missing my babies again, trying to not think about how many days it will be this time.

And darn it I forgot to bring my cokes and candy stash to the hospital when I was packing. Sure i had EVERYTHING all ready to go on Friday – put that all away on Saturday and was caught totally by surprise tonite when I went home to pack.

oh well. The good Lord knows i really don’t NEED that twix bar I am craving.

i just really really really want it.

Sweet. i also forgot contact solution so I have to use saline IV locks to hopefully keep my contacts from drying out tonite. Ahhh the misadventures of a tired mom in the hospital.

Thanks for praying for my baby.

T

Yes that is PAYING, not praying. Although we do pray for fat around here too (me to lose it, Kendall to find it, etc.)

I am SO SORRY I didn’t update on Friday as I intended to. Ben and I were literally SO giddy that we didn’t have to check in inpatient to the hospital with Kendall that I think we just spent the entire afternoon laughing at nothing and everything!

The update: Kendall was losing weight due to something that I can’t believe has an actual name: Dumping Syndrome. You can click on my handy link there for a more medical explanation, but essentially, her system couldn’t handle the extra calories we were trying to give her, so instead of processing a little of it, it decided to just forgo processing ANY of it, and was, essentially, dumping all of her food directly into her intestines without processing/digesting it. Neat. Cause, you know, this kid can totally be ok without processing food! I mean come on! Talk about insult to injury! Dr. Natalie took one look at the stool sample we brought, checked her weight again (it was down a few ounces), and immediately starting re-calculating her caloric intake/rate/flow. Ok seriously. When I repeated 8th grade math for the THIRD TIME in tenth grade I swore I would just get a job in which math was in no way involved when I grew up. And for the most part I have been able to hold true to that (if you don’t count the fact that I had to create multi-million dollar budgets using government funds for my previous life as a consultant…besides that) – and now this? I have to know kcal’s per ounce per hour? what the heck is a kcal even?

Anyways – we think we have it pinpointed. So we take her calories back down to regular formula mixing, and now we get to go BUY a BOTTLE of FAT at the pharmacy and add that to her formula. Honestly. I have to battle insurance to get them to pay for my daughter’s fat. Add that to my list of “things I never thought I’d have to do as a mom”.  Of course we have to finish her little trial of regular formula first (and by regular I mean, its still her uber expensive stuff, just not doubled up in the amount I have to mix with water) – to make sure her system can “re-adjust” to processing food without stressing her out. It really makes you aware of just HOW AMAZING your body is, that God made all this stuff just WORK in your system, without you having to think about it. And yet we HAVE to think about it with Kendall. I have truly never cheered over a diaper like I did after her first poopy diaper on the new formula plan. It was almost NORMAL looking!!! I know that’s crazy – but it was just such a confirmation that it seemed to be WORKING – and so quickly too! And I firmly believe that is due to all the prayer this little girl has lifted up on her behalf every day.

So tomorrow we go in to the lab at o’dark thirty to have blood drawn to send to University of Chicago neurogenetics program where they will run a “microarray” test to see if there are any variants, defects, deletions or mutations on Kendall’s chromosomes that make up her DNA. To see if some miniscule mistake was made when her ATCG was being multiplied before I even had a clue she was growing that got repeated and duplicated on every single cell of her body. To see if these mutations are the cause of her weakness, her digestive issues, her unique challenges. This process will take 3-4 weeks and may or may not hold any answers for us. If nothing else, it will add Kendall’s info to a database where maybe someday, they WILL start to have answers, and help, for kids like her. Dr. Natalie feels pretty strongly about doing the test, so much so that she called the head dr. at this program specifically to present Kendall’s case to her last week. Again, I continue to be amazed at the tenacity with which Dr. Natalie is fighting for Kendall.

And lastly, we discussed on Friday the fact that this latest little setback just bumps up the need for Kendall to get the G-tube surgery, vs. remaining on the NG for some indeterminate amount of time. Dr. Natalie was going to call Dr. Aljadeff to discuss her concerns and get “his blessing” of sorts on going forward with the surgery if it should become a necessity while Dr. Aljadeff is going out of the country. We meet with Dr. Aljadeff tomorrow for a regularly scheduled appointment, so hopefully he has processed her info and has a game plan for us. I can tell the tube is really starting to bug her more as she is almost constantly sneezing now when she’s awake and just sounds more congested. I feel so torn in that I want her to be free of that tube, and yet I am not excited about another procedure for her, one which would more than likely involve an inpatient stay and another adjustment to eating… Ugh. some days I am just DONE with this whole little experiment and want to just go back to life like it was. But we can’t and you can’t cry over spilled milk so you just pick up and move on and keep plowing forward, taking each new challenge as it comes.

So that’s our update for now. She IS recovering from her “dumping syndrome”. She is sleeping ok at night. She is growing in her own miniscule way. She is learning new things little by little. – she’s just on her own timeline. So we’ll try to adjust our crazy lives to her timeline and enjoy each second for what it brings.

Thanks so much for your prayers. They continue to lift us up on the days and in the times when we need it the most.

I wish upon you all a large serving of sunshine and warmth today. it is OFFICIALLY spring now, right? so I hope you get to enjoy a little taste of it today, no matter where you are.

terra

Last month on this day we underwent about 25 tests, procedures and blood draws for Kendall up in the hospital. It was a brutally long day, but a day that gave us direction, hope, and even a few answers.

and today, I feel like we’re back at square one.

Yesterday her home health nurse came for her weekly visit, went to weigh Kendall and said she was 10 lbs 3 oz an I was like ” WHAT?!?!? do it again!” After arguing with darling nurse about the fact that she weighed 10′8 LAST week, nurse checked notes, realizes I am right, resets scale and weighs her again. Same results, a 5.5 ounce LOSS. I was immediately saddened for my baby girl – because even though we’re talking different scales – she was 10′10 at Dr. Natalie’s office on tuesday. Something is clearly going wrong. I’d LIKE to believe that maybe nursey-poo was just delusional yesterday. That maybe her scale really is off in some wacky way. But besides the weight, she was also worried about Kendall’s bloated tummy and visible rib cage. Enough so that she immediately called Dr. Natalie’s office, spoke with her nurse, and is having us go in to her office today. The first appt. time we were given was 3:30. Then nurse called back and bumped us to 1. Then physician’s assistant to Dr. Natalie calls back and says “Dr. Natalie is trying to leave rounds early tomorrow and wil all us as soon as she is heading to the office. She wants you to meet her here as soon as she gets here.” At least they’re taking it seriously!

So we (ben and I) spent the rest of the afternoon in a semi-funk. I guess this is the “one step back” part of the old “Two steps forward one step back” adage. It just really sucks. (sorry mom and grandma.) I made the marvelous mistake of reading about babies who have missed low blood sugars last nite before bed and spent almost the entire nite up and checking on her and praying for her. I know that in reality there isn’t anything outwardly different about her than the night before – but i still couldn’t shut my brain off to the crazyness of the situation. So I am up early this morning, contemplating what I need to go in armed with for our appointment with the doc. What info can I put together that will help us narrow down the picture and FIND THE PROBLEM. What is my plan B if Dr. Natalie sends us inpatient – and what if it’s inpatient up at LG again vs. Rush? Lots going through my mind. My head hurts from carrying around these constant deep thoughts, this constant “Dr. House”-like differential playing through my brain at all hours of the day, and even some of the night.

But for right now, the house is quiet. I can hear the Kaylenator wanting to try to wake up, and I just heard the stupid cat knock over a vase of flowers on the kitchen table, and a few neighbors are starting their morning commutes – but it is mostly just me in the dim early morning light click clacking away on the keys, trying to make sense of what today may or may not hold.

We would so value your prayers today. I know Dr. Natalie will make the best decision for my baby – but I know she will also need the clearest picture from me about what is going on. Pray that we can start working toward a real ANSWER for Kendall, and getting her the help she so desperately needs.

I think today’s going to be a great day though. I just have no idea where I’ll end it at!

I hope you all have a wonderful Friday!

thanks for reading and praying.

 

terra

“When all you gotta keep is strong, move along like I know you do” – Tyson Ritter

 

It’s from a song. A song I love to blare out the radio speakers and sing along to at the top of my lungs. And that’s how today feels. Like we’re movin’ along. I cannot tell you the encouragement I have received over the weekend from those of you who just let me know you’re reading and praying, from the cards and gifts (thanks Aunt Margie and Grandma Marge!), from just amazing little (and big) ways that God continues to reassure us that HE is in control, HE is guiding our paths, and Kendall is so very loved by Him and His ultimate plan.

She appears to be feeling better today. No puking in almost two days. I hesitate to write that even because that almost always triggers another pukefest – it’s like she knows I wrote it down! We have had to take her feeding rates WAY down to accomplish this, so I worry if this will affect her weight gain at all, but overall I feel like we are doing the right thing FOR HER right now.

Tomorrow we go to her new pediatrician for the first visit. I had scheduled the visit over a week ago, and the nurse called me today to say that Dr. Natalie wanted to be sure she had extra time with us so could we come in at a different time. I thought that was nice, and am excited that Dr. Natalie will actually want to get the FULL picture of what is going on with Kendall and help us manage and track her progress through all of the specialists/therapists/etc. Maybe she’ll even help us get some formula samples! Still no word from insurance on that issue – they have told our home health care company (who supplies all our feeding tube/medical supplies) that they will give us a determination in 4-6 weeks. I heard that and was all “Um no. How about 4-6 minutes? It’s a simple question with a simple answer. Is it medically necessary? Yes. Got it? good.” But the bimbo blonde I got on the phone at the insurance co. on Friday afternoon was just SO not helpful, so I’ll have to call and hope I get someone with at least the IQ of a rock today. Hope.

But overall – my spirits have definitely been lifted and revived this weekend. Awesome awesome time of worship at church yesterday. Praising God for His blessings in spite of the chaos. Thanking God for friends who know just what I need to hear, just when I need to hear it. Feeling hopeful that spring WILL be here soon, and that this awesome weather isn’t just a tease!

More details on the formula thing later.

Thank you for praying.

Terra

and its not even half over yet!

We started out this morning with Kendall’s Early Intervention Intake Meeting. I met with a coordinator to discuss Kendall’s medical history, my concerns for her, and why her doctors were concerned enough to refer her to the EI program (its the free state program that provides therapy and assistance to kids with delays and disabilities. Karissa went through EI to get her speech therapy and get all caught up.) Anyways – our coordinator is pulling together what is called “the full team”  – meaning that it seems like Kendall has or will have delays across the board and needs a full range of supportive services. While i am so grateful that we have access to all the help she needs, its just more confirmation that she will, for the foreseeable future, be a “special needs” baby.

We have those assessments on the 24th of this month, and then any recommended therapies and services will begin within ten days of that meeting. That will be right in line with her dysphagia therapy/Vitastim starting on the 1st of April. My new goal is to have this child off of her feeding tube and able to taste her own first birthday cake. It might be a lofty goal, but for now it is mine to hold on to.

So after the EI meeting, Kendall’s home nurse came. I had been very concerned about the fact that Kendall has been puking and having horrible diarrhea since Monday. i mean HORRIBLE. Kaylen had reflux, I have dealt with the laundry problems that baby reflux can cause. Kendall’s issues were like reflux times ten! it was just horrific to watch it coming out of every orifice in her face, and then to see her just lay there completely wasted from the effort of throwing up with such force. She hasn’t been the happy baby we did get glimpses of last week, and that was sad to me. So today when the nurse came I was NOT going to let her leave until I had some kind of answer or direction about what to do about this. She went over the rate/flow on kendall’s pump with me and was actually shocked that we had been able to get Kendall’s rate up so high, as it seemed like a VERY large amount for a baby her size. (we had gone up that high per her doctor’s orders). It was good to have my gut feeling confirmed, that we were just putting too much food into her stomach. So – back down we go. Again, not hugely disheartening in itself, but just enough to add to my already disheartened state from the EI meeting, that we’re backing farther AWAY from the goal of having Kendall eating like a “normal” baby.

It’s hard to explain without pictures (and i have them, I just can’t open them up onto this computer which is on its last legs and dying a slow painful death), but basically, Kendall’s pump determines how much she eats, and how fast she eats it. She is getting ALMOST the same amount as a normal 4 month old would eat (she gets 3 1/2 ounces every four hours) – but where it would take a baby drinking from a bottle say, 20-30 minutes to finish that bottle or to breastfeed to get that amount, it takes Kendall 3 and a half hours. And while i myself sometimes feel like I am eating ALL DAY LONG, Kendall actually IS! I mean really, folks, this kid has it so good! So while we HAD gotten her up to eating her “bottle” in right at about 3 hours, with an hour break, we are having to go back to the slower rate of 3 1/2 to 3 3/4 hours to eat her meal. Today she hasn’t thrown up ONCE though, so i feel confident that we are at a good place with her feeds. The main goal is to keep packin’ the calories on, right? however that has to happen, and right now it has to happen SLOW and STEADY.

But it’s hard. I wanted to have a little breakdown in the kitchen today, while I had Kendall strapped to me in the MeiTai sling, pushing her IV pole with the pump and bag of milk on it around the kitchen so I could get lunch for Kaylen and Karissa. Kaylen just wanted to be picked up and held, but my hands were FULL. Steadying Kendall, helping her hold her binky in (cause her mouth muscles still aren’t strong enough to suck on it strongly enough to keep it in by herself), holding the FOOD, pushing the pole with one foot, trying to answer Karissa’s INCESSANT talking and non-stop questions…and this is all when Ben is still in town, and I know I will get a break at nite. How is it going to be when he has to go back to travelling? I know that not every day will be this hard. Kaylen won’t always be tired beyond functioning, Kendall wo’nt always need to be held, Karissa won’t ALWAYS want to talk to me. So in spite of the chaos I just try to hang on to a shred of sanity and hold these moments dear.

I am just about at the point of not being able to watch “Baby Story” or “bringing Home Baby” anymore on TLC cause it is so sad to me to see the happy healthy babies, so chubby. Or see the moms able to still breastfeed their happy little chubby babies. I finally had to give it up last week – it was just killing me to try to find enough time to pump and do all the extra things required to try to keep my milk supply up. chances are very good that she will not even be ABLE to try a PO feed (from a bottle) for a few more months, during a time when I would normally be starting to wean anyways. So why make things that much harder on myself? and yet, its still sad to me.  I don’t think I was ready to give it up for her, for the one who needed that amazing mommy-milk the most. But she needs a functioning mommy right now even more than she needs my milk, so that’s what I have to do. My arms ache to hold her like that just one more time though. I think I haven’t really grieved for all that’s been lost here with my baby. The “normalcy” of her infancy, or the possibility that it may never be normal again. Because i find myself breaking down in tears at the most random of times over the most random of circumstances.

So we keep moving forward. Hoping that one day soon we’ll have a breakthrough, or an answer. Knowing that somewhere in all of this God is working for His purpose, His glory. Trusting that in spite of my shortcomings as a human and a mother and a wife, that my family will all be ok. Relying on the amazing support and help of our friends and family around us.

Good news – we THINK we have all the pieces in place for the formula to be covered by insurance. I am waiting on a phone call back from our home health coordinator, but it is VERY hopeful at this point thanks to a LOT of help from Dr. A’s wonderful nurse, Margie. i’ll post an update if we get it approved today! Thanks so much to you all for praying for this issue specifically!

 

t

Or Get Busy Dyin’.

If you have known me for any amount of time or have read the blog for more than a few posts, you will know that this is one of my favorite all time movies/books – The Shawshank Redemption. Ben and I happened to catch the last 15 minutes of this movie the other night, and I was reminded again of why I love it so much. The poetic prose, the way the theme of hope weaves through the movie, the wonderfully soothing voice of Morgan Freeman’s narration – and this final scene which pulls it all together. It starts out with the quote that I love – Get busy livin’, or get busy dyin’.

And for some reason, after i of course broke down in tears watching the final scenes, it filled me with a renewed sense of resolve to get my baby better. To live our life again, with whatever inconveniences and medical procedures that may entail. To hope for the best, and keep moving forward. That is the best medicine for my baby, my family, myself. Time to get busy livin’.

We made a few trips out yesterday – to MOPS steering team meeting and then to small group last nite. She got her PICC line pulled yesterday (by a healthy nurse – yay!), had a horrific round of reflux which left her limply laying on her side trying to catch her breath again, smiled and played and moved her arms towards objects by herself and all in all had a very full day! we got Early Intervention assessments started, made a small step of progress towards the insurance formula issue, and just had a basically normal day. I hope we have more of those.

*to answer a few questions i have received via comments and email: a.) yes we have been assigned an insurance case manager. She can’t really help with the formula thing until we get a doctor to call in. Once that happens, she will ride shotgun on it to ensure that it goes through. Our home health care company is doing most of the stuff she would normally be doing anyways, so we are doubly covered. Now to just get a doctor who knows the full story AND has ten minutes to call in to our benefits line! (did anyone sleep at a holiday inn express last nite and wants to pretend to be a doctor?!?!? Anyone? Bueller?)

b.)THIS is why the insurance covering formula is so important. That amount right there will feed Kendall for slightly more than a week. We have to mix her formula at almost double strength to boost the calories up enough to keep her gaining weight (which she IS doing! Hurray!) Huge thank you to our new friend Gayle, who had a large case delivered to our house from the company yesterday! Such an answer to prayer!

Then came night time – where the pump was going all wonky so her feedings got messed up, which made her tummy hurt so she was crank-o-matic, then kealey started puking over the side of the bunk bed, narrowly missing puking on her sister who has the unfortunate placement of being on the bottom bunk. Then Ben started feeling sick (well, i guess he’s been feeling that for a couple days now actually) – all in all, not a fun night. Thank God for Ben getting most of the pukage stuff cause I just could not have handled that! So i pulled early morning duty with the baby and a cranky Kaylen, waiting for our wonderful dear chiropractor/friend to come to our house to adjust Kendall so that all her other therapies can work even better and faster on her little system.

We have always had our whole family receive chiropractic care and I firmly believe that is part of what kept Kendall from being even worse than she presented with at the hospital. i am struck by how very lucky we were to be sent to Children’s, and to become one of Dr. Aljadeff’s pet projects (he is continuing to lead her “team” and be her main specialist, in spite of the fact that he is a CF/pulmonology doc). I have found a message board for parents of kids with hypotonia, and all its various entailments, and I am stunned at how many of them are at 3-6 month out waits for MRI’s, bloodwork, specialist visits – JUST to get to the level of answers that we were able to receive in one “badda-bing, badda-boom” visit to the hospital. God is definitely protecting over Kendall, and in spite of how crazy hellish it seemed last week with the non-stop testing, I am so very grateful that we were at where we were at, and that we were able to at least clear through some bad stuff.

It remains to be seen where we go from here. and some days that is easier to swallow (ha! no pun intended… you know, cause kendall can’t swallow….nevermind…) than others. Knowing that she will not even be able to attempt bottle feeds until mid-May is saddening. Feeling like i will never be able to stay on top of all the follow-up specialist appointments, and therapy appointments, and insurance issues – that is overwhelming. Knowing that so many people want to help and yet I feel like I do’nt even know where to begin asking for help – that is frustrating. I know I am learning a lesson here, somewhere, someway. I just can’t quite see what it is.

don’t get me wrong though – I am not morose, or overly sad. I am not even throwing a pity party with myself as the guest of honor! I am just …..processing. Out loud. Well, on paper. Or screen. Whatever. You know what i mean.

But things aren’t that bad overall. Someday we’ll have more answers. Someday my baby will be caught up, and my days won’t be overtaken by her care. But someday can’t come until we get through TOday. So TODAY i will get busy livin’.

a huge wonderful thank you to everyone who has brought or sent meals or other help. i am overwhelmed with each new update Robyn gives me about our continued care and help from so many of you. The cards and emails and comments of encouragement mean so very much. Someday i’ll figure out a way to properly thank all of you.

i hope it is a gloriouslyrelaxing weekend for all of you. I pray that you are all lifted up in blessing this weekend, somehow, in some way. May health be heaped upon your household and GO TO BED EARLY tonite!

Is it just me or is anyone else in absolutely NO position to lose an extra hour of sleep tonite????

Amen.

And because these two things have been annoying me since YESTERDAY – I bring you two tips to help your McDonald’s Drive Thru experience go even smoother. These are for the clearly uninitiated, of whom line seemed to be full of yesterday as I was trying to order lunch:

1.) The “2 car lengths” safety buffer DOES NOT APPLY when in the drive thru line. You are permitted, in fact, ENCOURAGED to go ahead and pull up near the bumper of the car in front of you. When you decide to keep 2 car lengths between you and the car ahead of you – the system fails. No one behind you can pull up to the speaker, pay Or get their food in the timely manner the drive-thru was designed for.  so PULL UP please!!!

2.) The handy little drive-up trash cans are NOT your personal car clean out stations. You make a SLIGHT pause to toss some READY trash into it (say, to empty your cupholder out so you have room for the two large sweet teas you just ordered), NOT to sit there for five minutes cleaning out your entire car. When you do this, no one behind you can leave the line, and again, the system fails. There are PLENTY of car washes around the metro area. Please find one, park, and THEN clean out your car.

Thank you for attending Lesson One on Drive Thru Etiquette. I, the drive thru master, will bring you further lessons as we progress into springtime; when drive-thru’s become notoriously clogged by uninitiated drivers who, in a spontaneous moment, decide they want to get some food to go and eat it in the park. Fear not, though, I am here to help guide you through how to PROPERLY place an order and keep the line moving.

 

Ok I feel better getting that off my chest.

(See? the terratalking you’ve come to love and enjoy is still here….buried under medical minutiae. It will soon emerge full force again!)

Ok back to my attempt at closing out this post – I hope you all have a wonderful weekend.

Peace out – and keep the hope.

Terra