Hurricane Kaylen.

Downgraded from a Hurricane to just a Tropical Depression yesterday morning after her surgery recovery began to overwhelm her tired little system.IMG_3333

In case you aren’t a fan of Terra Talking on Facebook (and if you’re not, why aren’t you? click over there to the right – you can “like” it from right here on the blog!!!!) – then you may not know that we have spent the last day and a half in the big house with Kaylen, getting her rehydrated, giving her some IV pain meds, helping her airway do its job and keep her oxygen saturations up. She was a very very very sick little girl yesterday afternoon, and I was a very very very frustrated momma since I felt like the ER doc was missing the point that sitting there crossing our fingers and wishing on fallen stars that she would just sit up and tell us she was all better was highly unlikely to happen.

Finally after sitting there for 6 hours and literally dumping two bags of IV fluids into her with extra dextrose to try to bring up her low sugars, the doc realized it was a losing battle and admitted her for more IV fluids and pain meds. By that point she was already on the oxygen as well in order to try to keep her sats (oxygen saturation in the blood) up to an acceptable level. (Typically you should be around 99-100% oxygen saturation – and Kaylen usually is the few times I’ve checked her at home. Kendall’s orders from her pulmo are to stay above 94% or keep her symptom free – and Kaylen was sitting around 85-86, not waking up, and not responding to me moving her position, beating on her chest, or sitting her up.) From that point things continued to be not well – but we got up to the floor, and this doctor was MUCH more on top of things.

They ordered a chest x-ray because Kaylen’s symptoms were consistent with pneumonia, and she had decreased/rough sounds on her right side. The thought was that she was in early stage pneumonia, possibly induced by the intubation during surgery. All of that makes a lot of sense – but it didn’t make the nite any easier trying to deal with her horrible coughing spasms that were happening every few minutes. It was a very long, somewhat scary nite as at one point they bumped her up to 2L (two liters) of oxygen support and her sats were still in the lower-mid 90’s. Now I know that for some “medically compromised” kiddos, these numbers aren’t bad – but with my healthy little hurricane – I felt lost. I am not used to having to worry about her like this, and I didn’t know where/how/when to advocate and when to let her body just do its own fighting. Luckily our night nurse was very proactive and very helpful in keeping the fever under control, getting the tremors induced by spiking fevers to stop, and getting kaylen comfortable enough to at least “rest” in between coughing fits. They cranked up the fluids, stayed steady with IV ibuprofen, and we “woke up” this morning with a much happier and more engaged Kaylen.

IMG_3335 Over the course of today we have been able to turn the oxygen down and she is actually right now on room air. Sats are dropping again as she is trying to nap, but nothing that is super worrisome and we can’t manage at home with a hit of O2 here and there as needed. She has trialed a couple hours off of IV fluids, and with a LOT of convincing we were able to get her to take her oral pain meds (a huge part of being able to go home – she has to be able to take all of her pain meds by mouth and have the pain stay controlled enough to eat and drink). A good friend brought up some “rescue fluids” – a McD’s coke for me and a strawberry banana smoothie from mcD’s for Kaylen – and boy did that help perk her up. She sat there and nursed that thing for a good hour – and I think that is when we started to see more of the Hurricane come back.

So she’s had a good day of making good forward strides – but still isn’t quite where I’d like to see her before I take her home. I would absolutely hate to have a repeat and have to bring her back. The team here is all really great, very supportive, very knowledgeable about “kids”, and we are in good hands. I wish they weren’t so cavalier about her oxygen levels because I think all we are making her do is burn up the IV hydration by trying to breathe faster in order to oxygenate herself better. And they are hesitant to pull any labs to pinpoint a direction because as the doctor says “they WILL be all messed up – she just had a pretty major surgery”. And we can’t do a flu swab (viral panel) because it will very likely cause bleeding in that very sore area, and it may or may not even yield useful info. All of this I understand and agree with from a medical point of view. But from my momma point of view, I just want her fixed. I want there to be some THING we can do to speed up the healing, or to relieve all of her discomfort. I want to not have to pin her down with my knee and force her jaws open to get her to take her meds and a few sips of water by mouth. I really want to not have to bring her back here in a couple days if this doesn’t get better. I want her to be able to sleep without busting into a major coughing spasm or have me have to beat on her chest to get her to wake up enough to take a breath/break up the mucus.

I just want to be home, with my whole family. I want to sleep for five straight days. I want the backs of my eyes to stop feeling like they are being stabbed by alien toothpicks.

I’m too tired to write coherently at the moment, and Kaylen is now satting in the low 80’s and having a hard time waking up. So i’m probably gonna have to go find someone’s shins to kick since there are (blessedly) no doogie’s here in this hospital.

peace out party people. Thank you all so much for the messages/emails/texts of love and prayers and support. For those who have asked – I think we are almost out of coke at home. I’ll have to double check with Ben! But if you are one of the ones who said you would be at the store and will be swinging by our house at some point – a 12 pack would hit the spot. And trust me when i say i will need the caffeine to survive the next week.

I’ll update you all when I know more!

 

terra.

Recuperating.

Slowly but surely – we are in a state of recuperation here.

Ben is home and still has a pretty puffy hand, but is recuperating from the effects of “sleeping” on a hospital bed for two nites, and fighting a nasty infection. Kaylen is definitely attempting to recuperate from her surgery yesterday. I am recuperating from…life. the big girls are recuperating from once again having their lives and schedules thrown upside down, and kendall is just truckin’ along!

image Poor Kaylen – I mean, i knew it was going to be rough. but having head knowledge of how much pain your child will be in, and actually trying to hold and comfort a baby who has NO IDEA why everything hurts so badly and just wants you to fix it are two polarly opposite concepts. She is understandably in a lot of pain from having her extra-large tonsils and large adenoids removed. I was actually shocked as i looked in there for the first time post-op – it was just so HUGE in there without all that swollen nasty tissue! Poor baby – she must have been hurting for so long for as big as they were.

So anyways, our day today has been spent trying to convince a hurting 4 year old that drinking something – anything – will not hurt that bad and will help her feel better. I’m not sure if this is true – but they tell me this is what i am supposed to do, so I do it. It is heartbreaking to watch her fight to get down the teeniest amounts of water or juice, and to talk longingly about when she can eat food again. I’m not kidding, this is the kid who usually has had three meals before I’ve even made my first cup of coffee for the day. she eats non-frigging-stop. Snack QUEEN. I am sure she feels hungry – but knows she just cannot get it down right now. As long as we can stay on top of keeping her hydrated, I think we will be doing good. But even that, I’m questioning right now. She had MAYBE 6 total ounces of fluid today, and most of that she had to work at to get it down, and then fought for a while retching after she did finally get it down. She still has a teeny fever even after taking the tylenol/codeine combo, which she is getting every four hours on the dot, which is also very hard to get into her because she is NOt interested in swallowing anything.

At this point, it will be awesome if we can muddle through this without having to go back in for some IV fluids. I feel so bad for her though….no good solutions – just gotta push through.

So push through we will!

We got a lot of fun stuff coming up this weekend (and even more fun stuff NEXT weekend with the Hope For Kendall benefit!!!) and I want EVERYONE to be there and be happy and be healthy.

 

Thanks for stopping by~

 

terra.

Relief. Or maybe not.

JUST as I was about to sit down and blog about Kaylen’s surgery scheduled for tomorrow morning to have her tonsils and adenoids removed, the pre-op nurse called to tell me that the head anesthesiologist was not comfortable with our family history (Kendall’s history!) of anesthesia reactions, so he would not allow her procedure to be done at their facility. (basically if they use the wrong mix of medications, kendall ends up in the PICU not wanting to breathe on her own and her body goes into metabolic-disco mode trying to stabilize itself. It ain’t pretty. Luckily CHW now has a two inch thick file on what NOT to use, and they have her down to a science.) turns out that kaylen’s procedures (and karissa’s a couple weeks ago) were NOT at CHW, so they don’t have the family history in the record.

there are so many paths of frustration that I could spout about regarding this that I hardly know jan12-104 where to start. The fact that I tried to point out to her doctor last week that I’d like more info regarding how long she would be under so we could make better decisions about her anesthesia – or the fact that I asked the nurse if the surgery center would be equipped to handle the anesthesia issues we have run into in the past (and was told absolutely!), or the fact that ANY TIME I bring up a concern about anesthesia and that I’m not trying to be a psycho about it, but I’d really prefer to never have to watch another kid go through what i’ve watched kendall go through ever again, I am somehow the crazy one. Until a real anesthesiologist reviews the notes. And then all of a sudden its a fricking five alarm fire again.

But at the end of the day, I am grateful that they ARE taking the concerns seriously, and that Kaylen will be very protected during her procedure. I just hope it is soon – SOOONNNNNN do you hear me?!?!?!? The 3-4 nightly wakings from her, the flopping around in pain from her legs and arms and belly and throat and head, the behavior issues that are becoming more and more out of control – it is wearing on us all. I would never have guessed the extent of the problems that “sleep issues” could cause – not only to the one with the sleep issues, but to the entire family. Having had the light at the end of that tunnel in very clear view made me realize just how desperately needed this surgery is – and how very high my hopes are on it “fixing” everything.

and I just now am realizing that I think I have only briefly touched on Kaylen’s issues here on the blog. You might have picked up a few more if you are on Facebook and hear my complaints there. I’ll have to do another “sleep” series on just her issues because I want to document her journey too – in case it helps other families like ours, at their wit’s end trying to deal with a child who is out of their minds and out of control because they NEVER EVER EVER sleep. We have run the gamut of trying to deal with things that normally inhibit sleep in preschoolers – she sleeps in a darkened room, there is a white noise effect from a fan, she doesn’t have toys in her room, etc etc etc. Then we found the magical Sleep O’s and while they ARE still magical and help her GET to sleep, she cannot STAY asleep. I did not connect the horrific daytime behaviors to the increasing LACK of night time sleep for a few months – again because there are a lot of variables in Kaylen’s environment – a sick sibling, a distracted mommy focused on the sick sibling, the nurses in and out of the house, lack of one on one attention – all of which have been and continue to be addressed, with mostly negative results. Like the more one on one time we try to give her, the more she is acting out.

I am too worn out at the moment to fully rehash her behaviors – and blessedly, she manages to keep herself together for the most part in public so most of you will never have to witness one of the crazy meltdowns. But trust me – they are horrible. It drains my energy on a daily basis. It stresses out the other girls. Ben and I feel like we are tag-team-wrestling trying to deal with her when he is home. It’s brutal.

and right now, the best theory is that it’s all because of the sleep apnea caused by her super-sized tonsils and adenoids. It makes sense – it kind of nicely ties up all the issues she deals with – the behaviors, the muscle/joint aches and pains, the tantrums – all of it COULD be due to sleep apnea. What we don’t understand (yet) is why her tonsils/adenoids got so big so fast without recurrent infections. It could be a horse and cart type of process. And we probably really won’t ever know. We do know that the major issue right now is opening her airway back up so she can hopefully breathe better at nite. After that we will be scheduling a sleep study to see if there is still any remaining apnea, and doing more in-depth allergy testing so we can be assured that she is on the right medications for that.

Source: piccsy.com via Terra on Pinterest

 

anyways. we will find out tomorrow morning where and when the surgery will be rescheduled for. I know that Dr. K’s nurse felt horrible about the mixup, so she is going to try her best to still get Kaylen in sometime this week or early next at one of the hospitals. Please pray its very soon – for ALL of our sanity! (and for the sake of my K-cup stash. i got four boxes for Christmas. they are almost all gone. I am pretty sure if i had bloodwork done right now the levels would read “French Vanilla – 7.8, Extra bold – 3.4, caffein-ophils – 98%”. with a side of Coke mixed in. And if you are lucky enough to get sleep at nite – i mean the real, good, deep kind you get in when you get to sleep more than 2 straight hours at a time without being JOLTED awake by some urgent need for a tums or ibuprofen or lip grease or to pick out the outfit du jour for the next three days right then and there at 3:24 am – then please please please enjoy a few minutes of that deliciousness for us!

I’ll keep you all updated. Cause i know you’re hanging at the edge of your seats and stuff.

 

At least we know that things WILL get better! Eventually. They always do! They might change and look different than what you’d hope for or expect. But they always get better.

ok before I start re-pinning my entire pinterest collection here in an effort to  make myself feel better, i’ll wrap this up.

Maybe if you’re REALLYYYYY lucky I will be so hopped up on endorphins after dance class tonite that I will post a happy/funny blog!!!

See you all on the flip side.

 

T-crest Out.

Atkinson General – Part 2.

Just a shade under a month later!

So I think i still have to catch up on my medical issues and Kaylens – we’ll start with the Hurricane.

Kaylen

where to begin with this one? Her issues, like Karissa’s stem from early infancy, when she was diagnosed with GERD (reflux disease) and was put on medications at 2 weeks old. The meds helped her finally DSC_7188-1 be “happy” enough to not scream 24/7, and we thought we were good. But she also, like Karissa, started in with horrid ear infections at around 2 months old, and by the time she was 7 months old, the ENT said tubes weren’t really NOT an option, so she had those placed a few weeks after that appointment. She still got ear infections a lot, but they were pretty easily handled with some antibiotics. We went back and forth in this way until she was about 2 years old (a few months after kendall was born), and the ear tubes were being pushed out by more infections, and the grossest foulest stuff was just leaking out of her ears every nite. Tubes were removed so her eardrums could heal up, and we found out at that time that her vocal chords were very ripped up (raw) from the continued reflux. Anyways – she has always been a hot mess of ENT issues – from her sinuses getting infected, to ears infected, to croup with every cold she gets.

So when she got yet another fall virus cold (I call it the school special – its just the regular crap kids bring home from school – bad enough to make kids feel kinda gross, but not bad enough to go running to the doctor for) – I didn’t think much of it when she was sinusy/stuffy/complaining about her usual maladies of ear/nose/throat pains! Until after it was “cleared up”. And randomly one day she was showing me something in her mouth (I know – the glamorous life of being a mom – viewing your childs pre-masticated food) and I noticed two large meatball looking things in her mouth. I went to get the little light, tilted her chin back and was horrified when i looked in there – they were GINOURMOUS!!! I had no idea what they were, but i suspected her tonsils. Having a nurse in your house all day can be a good thing because she was able to see in there too and confirm that it did indeed look to be tonsillitis. So back to the ENT we went – except her doctor was completely booked, so we had to see the PA (assistant doctor) – who told us that every single thing we have noticed about kaylen’s “bad days” fits with apnea. 

She could see the tonsils and the adenoid tissues were extremely swollen, and that it was unusual for them to be that large with no “active” infection. she had cleared the school special about 3 weeks before this appointment  and didn’t appear to have any other viral infection going on – so she was stumped as to why they were so large.  But the bottom line from that appointment is that we are meeting with the ENT on January 18th as followup, and more than likely will be discussing a “T and A” procedure (tonsillectomy/adenoidectomy – getting tonsils and adenoids taken out).  The PA put her on amoxicillin to take care of any lingering bacteria that may be harbored in there as a “hidden” cause of the swelling and some Flonase (snorted steroids) to help reduce the inflammation also.

We didn’t get a whole lot of info from the PA about the apnea – it was just kind of tossed out there as the reason sheIMG_2725 is having so many behavioral issues, problems sleeping every nite,  leg cramps, throat pains, etc. The ENT has brought up sleep studies for both Kaylen and Karissa in the past – but due to all of Kendall’s issues, it just hasn’t been high on my priority list to deal with scheduling and carrying out and then fighting insurance to get sleep studies scheduled. Kaylen does fit an apnea profile to a T – and based on the fact that it sounds like a freight train some nites in K2 and K3’s room with both of them snoring – I’m assuming they both have some apnea. Not sure there’s much that can be done about it beyond removing Kaylen’s tonsils/adenoids and hoping Karissa’s dont get big. I just want to have my happy Hurricane Kaylen back! Things got worse AFTER we started the amoxicillin – and she ended up requiring oxygenated nebulizer treatments to keep her croup under control. It was horrid because she kept getting so panicky when her airway felt tight/swollen, so she would cry more, which woudl make it worse and it was tough to stay on top of that swelling. Of course this all happened the week before christmas and Ben was out of town most of that week – so it’s probably no wonder that my heart was never calming down (we’ll get to my issues in a minute!). So tired just thinking about trying to survive those nites!
We did end up completing one course of antibiotics and are on a different antibiotic for round 2 now – and things seem to finally be settling down with her. She still doesn’t sleep well at all, and has ensuing meltdowns all day long because of it – and its still very draining to hear the nonstop complaints of throat/ear/head/leg pains and feel helpless to do much about it beyond dose her up with more ibuprofen – but hopefully the dr has some more good ideas when we meet with him in a few weeks.

ME and my issues.

Probably too broad a topic to cover in just one post, or even one blog, but i’ll try to narrow it down to just the recent physical cardiac issues! If you are on facebook as my friend (which you totally can be! i love friends!) – but you may have heard me whining as of late about my heart hurting, its rhythm wonkiness, being in the ER one Saturday nite – all cause my heart had gotten into some funky pattern of non-rhythmic beating and it was driving me INSANE. (that’s not a good description – it was obviously in a rhythm of some kind because otherwise i would not be here typing – but it FELT like some kind of weird dubstep song rhythm vs a regular – ba-bum, ba-bum, ba-bum.) It started after a bikram class – so of course everyone assumed that it was because the yoga class was too hard, i was working too hard, whathaveyou.

The problem with that theory though is that I have this kind of weird rhythm a LOT. But it usually goes away within a few seconds/minutes/hours. I’ve had it do this as long as I can remember, since early childhood. It seems to correlate with times when “lung stuff” was happening, so I always blamed it on my crappy asthma. No doctor has ever mentioned it – and the times it was the worst – the last trimester of every pregnancy – it would occur during times when it was “normal” to have an elevated HR, higher blood pressures, shortness of breath, chest pains from having your organs crunched up, etc. So while the yoga may have been a part of why my heart was working hard and started doing whatever its doing right now, it wasn’t the yoga’s fault!  It’s never really been more than a fleeting annoyance, and I never thought – i should get this checked out, i might be having heart problems.

I still didn’t think that the night I went to the ER – but I was tired of being hounded by two very dear friends via instant message, and my beautiful cousin Kirstyn who works in a cardiac unit as a nurse that I should probably be checked out. At that point, it had been about 36 hours of the crazy rhythm, and it was starting to get pretty painful because when i have these extra “beats”, it feels like my heart is being forcefully jerked out of place. By the time I went in i was feeling pretty beat up and like I had been training for a marathon. Luckily since we do have enough medical equipment here  to handle pretty much any emergency, I hooked myself up to the pulse ox machine for a few minutes, saw that i was pretty tachycardic and that it got worse with any slight movement, and so I went in. I think I made the right call as within 4 minutes of getting there I was struggling to stay conscious and thoughtphoto (2) I was going to pass out right there in triage. They did an EKG and a chest X-ray pretty quickly, got IV fluids running, had a doctor in pretty quick – it’s kind of a blur. I do remember him telling me that he didn’t think I was having or had had a heart attack (i love when Captain Obvious shows up!) but that he was worried about a pulmonary embolism because of my wicked cough. (In case you haven’t ever been around me in person in the winter, I do tend to sound like Typhoid Mary when I cough, I can clear out entire restaurant areas pretty quick sounding like I’ve brought the ebola plague with me. It’s my special talent.)

So they did some testing for that, while I played around with the rate the IV fluids were running in at – because clearly the nurse didn’t understand that 50cc/hr was not fast enough, I set it to run a LOT faster than that. And then I sat and watched myself on the monitors, and could see that my weird jerkings were correlating with strings of PVC’s (extra beats). PVCs are a rather “benign” finding on heart monitors typically, so I was put much more at ease that I was just having a bad run of PVCs, and when the fluids got on board I would be magically fine. I discussed this with the doctor, who agreed with my assessment since the clotting test came back negative for the PE, and they let me go.

Except they didn’t stop. So then I had to actually call my family doctor (i know – trust me, its shocking that I even have someone I can call a family doctor since my typical MO is to call “dr. urgent care”). I was really glad I went in to talk with him though because he could still feel the PVCs in my pulses, and listened to me saying that it wasn’t having the PVCs that bothered me, it was that they weren’t stopping like they normally do. By the time I saw him I was on day 4 of this nonstop jerking/painful shortness of breath feeling like the crap got kicked out of me stupidity. My plan going in was to ask him to just shock me with the paddles and hope that fixed it. Instead he sent me for an echo and to get hooked up to a cardiac event monitor. Awesomesauce.

They are still happening. They still suck. i still feel like crap. I’ll do a whole post devoted to my awesome new accessory. Cause it needs its own pictures.

 

and that’s what’s happening here on Atkinson General. As the world turns. in the days of our lives.

Nonstop drama I tell you!

I’ve gotta post about something besides medical stuff now. It makes my brain hurt!

 

thanks for reading and catching up on us! i will do a proper Christmasy post soon – this one is being backdated!

Leave a comment if you notice anything different about the blog!

 

love you all~

 

peace out.

T.

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