More Info.

Probably more than you will WANT to know, as you’ll get my own personal opinions of vaccines, but since i can think a little more clearly today, here goes.

PERSONAL view of vaccinations

First – let me say that I don’t intend this to turn into a debate about them. It’s a personal choice and one that I hope people make after doing their own research. I did only a little bit of research before having Kealey, but we were luckily on the West Coast still at that point, where, in our experience, our doctors were ENTIRELY more laid back about things than here in the midwest. SO – whatever your choice, great. This is just how our family has done it.

For the most part, I have no problem with most vaccines. They are a part of childhood in the US, and i think that most of what we get vaccinated against is not prevalent anymore BECAUSE of the vaccines. So for kids who are healthy and strong and can handle them, I think they’re a GREAT thing. They provide herd immunization not only for kids, but also for the adults that interact with them on a daily basis. It works. My first three were all vaccinated just about on time. Like I said, our WA and CA doctors were very laid back  – “ oh you want to delay this one today?> great call us when you’re ready, or we’ll just catch her up on her next visit.” So if I was still reading up on one or two of the recommended vax, we’d just wait. if i felt like kealey was just slightly under the weather, we’d wait. we delayed the MMR till she was 2. Karissa – due to her issues, was also on a slightly delayed schedule, but, being here in the midwest, I had to really do some convincing of the docs that this was the appropriate route. Once she seemed healthier and more stable, we caught her up and all was well. Not a big deal. Same thing with Kaylen. She was constantly with the ear infections her first year so she had more than a few catch up shot days, which did cause minor reactions, but nothing that i coudln’t deal with.

We have gotten chiropractic care for our entire family since we moved here to IL, before karissa was even born. Our chiro, God bless him, is VERY anti-vax. They’re all poisons, made with fetal tissue and battery acid, completely unnecessary and more harm than good, etc etc etc. Now while I am pretty sure they’re not the HEALTHIEST thing, i think I fall somewhere in the middle. I think some of what gets put out is just lots of drug company propaganda/money making, as evidenced by docs who are all too willing to push certain vaccines without much backup. (Again, this is JUST MY PERSONAL EXPERIENCE.) But – whatever the case, we always take our kids to get adjustments right after they get any vaccines, so that their bodies can be in optimal condition to be able to absorb the titers of whatever vaccine they just received, fight if off appropriately, and let their bodies do their jobs to store those antibodies till they’re needed. For the older three – this has been a good way of doing it. Sure they still get the occasional sicknesses, and they all have some slight reactions to the vaccines (crankiness, tiredness, fevers) in SPITE of the propaganda  paperwork the nurses give you that swear that NEVER happens. Whatever. It is what it is and we just deal with it for a few days.

So in general – I am not Anti-Vaccination (Vax), nor am I necessarily gung-ho PRO-vaccination. I believe in the concept of vaccinations, just not always the execution of that concept the way that our country has accepted it. There are more than a few vax that I personally feel are complete bunk, but i’ll keep those opinions to myself since that’s all they are – MY opinions. anyways – this has been a good course for our family for the past 7 years.

THEN along comes Kendall. With more issues than months in her life, and throwing ALL my parenting wisdom out the door. She was in the blog2 NICU still for her first set of vaccinations, and I can honestly not say whether she had reactions or not. Things weren’t normal for her, that’s for sure, but its hard to know which was the horse and which was the cart there. At her 2 month check up was when she turned into exorcist child when they gave her the vaccinations, and that’s when her bad downward spiral began. So at 4 months, we did just one shot (I BELIEVE it was just the Hib at that time as well, single vax, not combo) and sure enough, a week later she was back in the hospital with pneumonia. 6 months, we held off on vaccinations because she was again dealing with pneumonia (but just not inpatient for that one! YAY!). At her 9 month check she got the Prevnar (for pneumonia and lots of sepsis infections, which she dealt with this past spring) and the DTaP, combo’d because that’s the most effective one against Pertussis (whooping cough), which IS actually coming back around in IL this season, and we felt like it would be good if she had SOME protection against it. And please believe, nurses don’t just walk in the room and administer shots without a LOT of discussion from me. I ask lots of questions specifically about the pro’s and con’s of vaccinating vs. NOt vaccinating, in KENDALL’s situation. We discuss things about her history and overall status before doing anything. It’s not something that is done lightly by any means.  I was a little hesitant to give her two shots at her 9 month check (which was at the end of August), but she HAD been in a pretty good run of health/weight gain/stamina, so i thought it was ok. And sure enough within three weeks of that, she was inpatient. I get that it MAY be all circumstantial, highly coincidental, all of that, with regard to going inpatient after every round of vax. However, given what we are also seeing on the bloodwork, and the fact that she does appear to be constantly fighting SOMETHING, this is what is raising the red flags to her immunologist.

blog1 The discussion yesterday about giving her the one vax again was not short. It was a good discussion though, in that i felt like Dr. R was REALLY hearing me out, and that we were having a two-sided conversation. We went back and forth about the benefits of vaxing her right then and there. But in the end, the plan he laid out was one I could not argue with. She just IS stuck between a rock and a hard place. She has a good chance of growing out of this issue, as a lot of kids do. However, in the absence of any real protection against MANY viruses and infections, it could be a scary winter. We need to balance projected growth out of this problem with the fact that she needs to make it TO that point alive in order for that to be helpful. I think if we had dealt with ear infections, colds, croup, that kind of thing last winter, Dr. R might not be so keyed up to fix the problem. What we dealt with though were very bad, life-threatening infections. Her body bypasses the ability to keep the infection at bay in just her ears, or just her sinuses, and lets it go right to its favorite warm incubation spot – her lungs. She more than likely always had secondary infections along with her pneumonias – but clearly we were more worried about the pneumonia/breathing issues than the ear infection. And the horse antibiotics she got put on killed everything. And then the fact that she would always improve SO WELL on antibiotics, and start crashing again the day she finished each course also played into the entire history Dr. R was looking at when outlining his plan of attack.

so that’s why I consented to the vax yesterday.

Not because I just blindly go into each appt accepting whatever the doc says will be best. not because I am a huge fan of either vaccinations OR inpatient stays. And certainly not because I like to torture Kendall. We try to make very informed and researched decisions when it comes to all the girls and their medical issues, and no decision is ever just lightly jumped into.

So – now that that’s all off my chest!

ummm what else did i have to blog about today…

Oh – Dr. Terra’s personal (completely unmedical) version of IvIg. This is JUST what I understand from reading the helpful medical documentation on google and from a few other online sources. Basically, it would involve going to the hospital monthly, getting an IV started, and staying hooked up for a few hours for the globulin product to be infused. I guess it can cause quite a few reactions, so sometimes there’s some pre-treatment (Iv benadryl or other anti-histamines), and then a period of observation afterwards for the first few especially. It is a blood product, so in some ways it is similar to a blood transfusion. But it’s not whole blood, nor is it medication. It is somehow a conglommeration of thousands of antibodies taken from different donors and combined into one product. That could be WAY off, but in essence, that’s what is happening.  {UPDATE! I found a better link – read this!} Since Kendall’s body can’t make antibodies, she would be getting them from other sources. Which is why its a monthly therapy. And it would last for a couple years, until, hopefully, her own body can kick in and start creating its own antibodies, a.k.a. – using what she makes!

Today definitely feels like fall. So glad I stopped by Yankee Candle for my new fall tarts! they definitely make it seem/smell/feel more autumny. *today my house smells like Macintosh spice! the girls were all excited that I had baked cookies….uhhhhh….no, sorry – just a tart burning!*

Ben came home early today and we were able to go have lunch – which was all fun and enjoyable till Kendall started choking on…who knows what – her own saliva? Reflux? something anyways, and then Kaylen peed her pants and clearly her diaper was at capacity because it created a nice little puddle on the floor. So we had to cut our fun little date short and speed home. C’est la vie.

And now we are deep into the throes of afterschool homework and snacks before getting ready for Awana’s tonite. And I am freezing in spite of the fact that we succumbed and turned our heat on today. I think Kendall’s waking temp of 94.5 kind of pushed us in that direction. She is now back up to her normal of 97! So the hawklike watching continues. Thus far her stomach seems to be holding up , which is usually the first sign of something going wrong. She is refluxing a lot more today, and then choking on it, but that could be just tiredness, not a harbinger of worse things to come. I hope. Thanks for the prayers and thoughts you are sending on Kendall’s behalf! I think getting through the next three or so days without massive reactions will be HUGE!

Ok the guilt over not having baked goods ready and warm from the oven for my girls is getting to me so I am off to try to retroactively have some!

Have a happy Thursday!!!



An overdue thank you


Yes I am just coming up with mindless drivel for the sole purpose of making all the little numbers in October light up with a post for that day.


YOU are an astute observer if you caught on to that! Someday I’ll have a prize to give you when you figure things out like this. For now you just get my congratulations!!!



Trying to think of how last Tuesday was…

oh it was the day we drove up to Milwaukee! It was a fun day. I was so looking forward to getting Kendall her new stroller. Met my mom for lunch when we exchanged Kaylen, and she bought her a new dolly and stroller set. I tell you, i have never seen a child more addicted to baby doll strollers than Kaylen. At least she’ll be easy to buy for for Christmas!

Last Tuesday, as we do whenever we have early morning appointments at Children’s Milwaukee (CHW for short) – we stayed at my grandma/aunt’s house. I love going there. It’s like, the constant home I never had. My family has lived in that house for gosh, almost as long as i can remember. I remember their old house, but they are the vague cloudy memories of early childhood full of random snippets. It has been a constant for many years – so many easter egg hunts, thanksgiving meals, birthday parties and random Sunday afternoon family gatherings held in those walls. And i love going back – not just because of the oh-so-warm and amazing welcome we receive each time, but just because it represents the strength of  the constant, the unchanging.

It also helps that my grandma, God bless her, still makes me  my favorite comfort foods. Oatmeal for breakfast and creamy tomato soup with grilled cheese sandwiches for lunch. You know how sometimes, when you’re the mom, and you’re the one who is always taking care of everyone else, making the lunches, doing the laundry,august 2009 048 cleaning up the same messes 83 times a day – and sometimes you just want to crawl into bed and have someone ELSE take care of YOU?  – that’s my grandma. Between her, my aunt and other wonderful cousins, i barely have to lift a finger. And it’s so amazing to have that kind of support at the end of long days in doctor’s offices, often on the outer edges of some hard to process info.

So I guess this post is dedicated to them. We could not have made it this far in the journey without your help, support and prayers, dear family. Thank you – words are not sufficient to express our love and gratitude, but thank you.

And while i wish it was for different circumstances – we love being able to see you more often now. And we cherish each and every trip up there.

So we’ll see you in a few more weeks!



How do you say thank you?

Why haven’t we come up with better words in the English language to encompass the kind of extreme gratitude we feel for people who make huge sacrifices to help you out, who show you the utmost level of compassion and love, for those times when a mere “thank you” is woefully inadequate?

Because I’d love to say those words to a few people. They know who they are. their sacrifices and gifts have allowed us to get the stroller that we need, and the carseat that we’ll need when/if she ever grows big enough to be out of her infant one!

in an act of humility and generosity that I can hardly do justice to in words, we were handed the exact amount it would cost for these needed items, and i am at a loss about how to graciously receive this amazing blessing. Feeling inadequate to receive such a thing. Not sure how to just accept it and not be plotting ways to pay it back or fully express my gratitude. someday we will be in a position to pay it forward though, and i know that is one of the best thank you’s that can be given.

This isn’t a complete post. Just a lot of random thoughts that are jumbling around in my mind. And an example of part of this amazing journey we are on. Amazing for the people who have come alongside us, and the things we have seen, and the hope we have and continue to hold on to. i’ll come back to this, once i’ve processed through it all a little more.

it is no less amazing though, for my inability to coherently express my gratitude or feelings. so thank you, to those of you who were part of this amazing gift. you have touched our lives in a way we can’t even put into words.

the little things.

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

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

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

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

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

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

Stuck between “normal” and “special needs”.

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

so we just continue in our “stuck” phase.

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

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

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

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

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

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

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

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

So that’s where i am at.


Most of you just get the shortened version of

“we’re doing good!”

though, when you ask.

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

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

But sometimes we’re just a little stuck.

A good day

All around, actually, it’s been a pretty good week. Little hectic, but, you know, I think that’s kind of par for the course here in our little world. right now I am sitting at the kitchen table, enjoying the nice even light coming through our back door, listening to the sounds of NOTHING, and just trying to breathe in and breathe out for a while.

Occupational therapy was fun yesterday. It was our first visit to the studio, since our other therapists all come to our house (Praise God for EI services from the state!!!). We finally got in with this place, where Kendall will be working on some of her fine motor skills (like learning to pick up small things, play with toys on her own, build upper body strength, etc.) Except that instead of therapy being about Kendall, it turned into crazy carnival day for Kaylen. If you’ve ever had opportunity to work with kids with autism or know a little about some of the therapies they use for them, this was a HUGE sensory experience room – swings hanging from the ceiling, large therapy balls all over, gymnastic mats of various shapes and sizes all across the floor, and a little trampoline with handles. Kaylen about went apopleptic when she saw it all. Oh and all the toys. If you’ve seen Kaylen in action, you know she just DOES. NOT. STOP.  Ever. For Anything. She lives at a speed of about 10 on a scale of 10. She kicked it into high gear in that room – i swear she was like a cartoon version of herself, all over that room. She kept yelling out – mommy i swing! mommy i jump! mommy hook at da toys!

somehow the therapist and I were able to actually do stuff with Kendall, who was in a GREAT mood and oh so willing to perform like a superstar! The therapist was shocked. The only report she had was the intake eval we did back in April, when Kendall was recovering from her second bout of pneumonia and did little more than lay there like a lump of goo. It was so nice to hear someone be SO excited about her progress, happy with the amazing little things she CAN do. (Vs. the residents or other docs who ask if she’s crawling or sitting independently or walking. Um no. We’re kind of more excited that she’s realized she HAS hands, we’re still working on getting her to use them together! Check back in a few months for the rest of that stuff!)

But anyways – it was good stuff. Of course right after we get done with that, kendall is back to rag dolling it, and starts in with her junky coughing fits and has the energy of a slug. We had a few errands to run, and by the time we got home she was absolutely wasted! Two albuterol nebs later, she still sounded like a freight train when she breathed, but she wasn’t laboring to breathe. Her temperature actually went DOWN in response to all this to 96! This kid is just so WERID! She slept all nite though, and even though I FROZE, she seemed to get some relief from the coughing finally when i had the windows cracked open. She’s still real low-key today. It’s been about 11 days of her having this crappy cough with no other real symptoms to speak of so I am not sure what’s going on with it. It doesn’t seem to be getting worse, but it’s certainly not getting better anytime quick! I hope she is able to keep fighting whatever it is because i am pretty sure they’ll think i am officially crazy if i have to take her back up to LG anytime soon! Keep your fingers crossed and prayers going!

And so today I am just – being.

Being content.

Being happy.

Being caffeinated with a nice caramel macchiato. (thanks laura for the new addiction!)

Being excited about the fall season, and all the fun things it brings.

Now to just kick it into high gear for myself and dig out the fall decorations and research pumpkin patch farms!

And since these two don’t get much airtime – some pics. They’re growing up so fast. Glad i got to capture a few moments in time – playing dressup in the creek with their sister from another mother. Hope they always hold on to this innocent time.

2sis Innes Sept 172 copy


girls blog

so she can grow…

Her body just isn’t sure what to do with the growth hormone!

That was the jist of today’s appointment in milwaukee with the endocrinologist. Genetics referred us to endo because they were afraid we were looking at a disease which would limit her growth hormone, and hence the failure to thrive we’re still dealing with. BUT – it appears that that is not the case. Her body is making growth hormone, but it’s just not converting it into usable growth. This is, again, due to her “MALNUTRITION”. So essentially we found again today that she is malnourished because she is malnourished. Plain and simple!

duh! why didn’t WE think of that????

Seriously though – it was a good appointment. It is reassuring that kendall appears to have no hormonal issues related to her growth problems, and that once we do resolve some of the GI/nutrition issues, things should start kicking in. And really – things are getting better on this front. She doesn’t LOOK tiny or growth deficient in any way really, and for that I am grateful. She looks pretty good and normal in clothes. Her bony little birthday suit is another story, but luckily that’s not what most people look at her and see.

She is doing so so so good this week. It is exciting to see her looking and acting so healthy, so normal! She has her horrible junky cough still, and her typical low grade fever, and now has a nice lime=green shade of snot pouring out her nose. I am praying that her body is in a good enough place to finish fighting this one off on her own. She is hangin’ tough so far, but no telling how much longer she’ll have to do it to kick this little bug.

the other news out of today’s appointment was that her issues of last weekend landing us inpatient were definitely related to dehydration and liver function. It appears that whatever metabolic process is burning through her food is also quickly burning through the fluids she takes in (which we do know is almost double what her body SHOULD need for her height/weight/age). Days when she throws her low-grade fever in eat through that even faster. So she is most likely living near the edge of “dehydration”. Meaning that 6 hours off her tube is detrimental, as we saw. When her body gets stressed like that, she doesn’t have the energy stores to stabilize things, so we see multi-system organ failure begin to set in, like we did last weekend.

Bottom line, her liver appears to need the most energy to remain functioning right now – and that’s part of why her liver labs were all over the place last month, including the one looking for tumors. it all definitely fits a few pieces of the puzzle together, but we still don’t have a lot of answers about why this is happening or how to prevent it altogether. We were given a nice little glucometer and instructions on how to use it and when to test. This may not keep us out of the hospital, but hopefully this gives us a little more peace of mind to know when to call the doc, when to go to the ER, and when we maybe just need to dump her full of pedialyte.

Lots of info to take in and absorb, but overall a pretty good appointment. Good in the sense that i walked away from it feeling like i had a few more answers, some good direction, and faith that once again, we are in the right hands at last. I know her docs are all working TOGETHER, as a team, to bring things together. Info gets shared between departments, and they all want to HELP kendall get better.

So – sorry – i am sure this is short and disjointed…maybe tomorrow i can fix it. i had to get some details down though before i lost them all to sleep tonite!


more to come later…

thanks for all the prayers for kendall and I as we were driving to heckandgone today!



When Bad goes to worse

It has been a day.

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

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



girls summer 09 355

I so *pink puffy heart* the ER…

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

Just a quick update –

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

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

So please pray.

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

thanks for praying


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