The big talk...

(simple. pure. serenity. home.)
(The view from my parent's front yard)

Serenity is not freedom from the storm, but peace amid the storm...

What a super mad-busy day we had today. We arrived at the hospital at 11 a.m. and didn't leave until 3:40 p.m. and all this so she could have 2 doctor's appointments, an x-ray, and labs. I ended up canceling PT in order to accomplish all this so that was sorta a bummer as Alana had been looking forward to getting into the water.

Tomorrow McDr will call with the results of all that hub-bub and let us know if anything needs to be looked at further. We did the usual CRP, Sed rate, CBC, etc. but also added profiles for lactate, pyruvate, glucose, and a couple of other mito specific markers (for lack of a better word). Her x-ray was iffy to me. The streaking looked better and I didn't see anything that screamed bad, but I did see a lot of hazy areas. The side angle the whole lung looks hazy, but who knows when it comes to Alana's lungs.


Last night we, Larry & I, had a meeting with McDr to make sure we are all on the same page with Alana and how she's being cared for, what the thoughts on her immediate future are, and just all those things that I don't like to think about. It wasn't much in the way of surprises. She has dramatically progressed in the not a good way manner. She has many systems involved that cannot be ignored or even put on the back burner anymore, and yada-yada. It was hard to talk about, hard to hear in black and white but much needed. McDr has some hopes for starting her on the mito cocktail but is waiting to do so until she hears back from the doc's in Cincy (because she needs to see if they want to see Alana "as is" or with a powerhouse of vitamins on board that *could* change things). She did tell us though that if we didn't advocate for Alana as much as we have and keep things as good for her as we have she'd been in a very, very bad way, more so than she already is. She did tell us that she worries each time Alana get's sick now that it's going to be the one that she doesn't recover from. Her baseline changes each time she get's sick and we can never seem to get it back to where it was before. Like I said, nothing we already didn't know or see happening but to hear them laid down like that sucks.


So here's all this talk about mito...I am sure you didn't notice at all right? I am going to try and explain this as good as I can so here goes. The full reports on the muscle biopsy came back a bit ago and it showed things that are consistent with mitochondrial disease, somewhat. Dr. H in Seattle wanted to run another round of testing and 1 thing came back better, 2 came back the same as the original testing. So clear-cut answer? Of freakin' course not. So again, where does that leave things? It leaves them like everything else...confusing. So what we are doing now is that Alana is participating in a mitochondrial testing study that's going on at Seattle Childrens. I mentioned that Dr. H asked permission to include her when we were down there, but now she's in it to win it. The testing is looking for unknown (as of now) variants of mito in children who test borderline or atypical with traditional methods but clearly present with mito. Sooooo--based on all this, from what we know now it appears that Alana has an unknown variant of mitochondrial dysfunction. No one yet is willing to make that "official" call on her paperwork because once it's there, it is THERE but she is now being treated as such. I know that it's hard to understand how it can be and not be at the same time, but I think it boils down to this: Alana presents like a typical mitochondrial patient. She has progressed at an alarming rate over the last 2 years and is continuing to progress. She has multiple systems involved and new systems joining the party at a frightening clip. Nothing else has ever fit her like this does.

Larry and I had started to come to terms with this when the first round of testing came back a few months ago. When the rest started to come back and more talking was done and more thinking back to the start of this and how things have gone we started to come to a scary realization that this might be it. Now we are waiting for them to do what they always do--tell us it's not it. That sadly has not happened yet.

I think that's enough to digest for tonight. As always there's been more fun around here then a barrel of monkeys could provide but I'll give you a hint..Alana was chewing on her O2 tubing, it was yanked on by accident and because her teeth are weak and have no enamel on them to keep them OK, a tooth came out with said cord. Talked to the dentist and from her x-ray a month or so back dentist said, yep, that tooth had another good year before it was suppose to come out but it should be fine, she will be toothless there for an extra long time now.

Weeeeee!! Can I get off this ride now?

PS: On Friday Alana goes in for a change from this long tube to a Mic-Key button and also a brain MRI (don't ask). Will post after she's in.

(she's so a pissy teenager sometimes)

So done with this verse...

Well the good news, the okay news, or the bad news?

Let's start with the okay news; the meeting to slap the PIA woman we were dealing with went well. Not great, not bad, just well. She will at least (so she says) respect my place as Alana's mother and NOT give me any more shyt about the fact that we do not have a clear-cut diagnosis for Alana (in regards to the overall picture). McDr has already told this woman that that does not negate a single thing that is going on with Alana. We ended up coming to an agreement that:

1. I do, not only legally, but on the because-I'm-her-freaking-mother, have full access to any information (that's done on paper) about Alana and she cannot deny me that.

2. She will no longer question us if we say something. Alana's care is not up for debate! Either take care of her of step the hell outta the way so someone else can.

3. The mediator that we had help us with this, Larry and I, and the "woman", will now be having biweekly meetings, only 20 minutes or so, to make sure we are all stil on the same page.

So like I said, it was okay.

On to the good news. McDr has been talking with Dr. Y (Cincy) and they'd like us to come back and have another round with the whole team. We've been aware that we were going to need to do this soon anyway but now that it's in the works it's kinda scary. How can that be good news? Well Cincy strongly believes in a team approach to care and even though we have McDr who, in my opinion is the greatest thing since sliced bread, having a pulmonologist, neurologist, gastro, immunologist, etc. all working together as 1 cohesive unit is great. McDr will be the leader of this band so that is even better. Dr. D that we work with here will still be our right hand man so that's icing! I don't know when we are going to go, I've requested not until March-ish so will let you know when I know.

Alright so I have some shocking news to share with you...I know it's going to be a huge surprise and all so here goes...remember how I told you she was getting sick?

Ear infection and pneumonia. Her g-tube is completely irritated again and we are back to caking medicine on it. She's gained NO weight in the 3 months that she's had the tube itself and we have to go back on Wed. to see if we can head to my parents house for Thanksgiving. There's no use crying over spilled milk right? It seems that this fall has been hard on even children with no underlying issues but really?! Didn't we just sing this song and dance a month ago?!?

It's a reindeer mama...

Okay so not to be a whiner here, but I think she's getting an ear infection. Argh! She came up to me a bit ago saying that her ear was hurting her and like I said, shes been off anyway. Good thing McDr called today and we talked for awhile and she said (before any mention of ear pain) that she wanted to see her and get some labs done that Dr. Hahn (Seattle) wanted so on Friday we will go ahead and go in.

We've been dealing with a lot of peeling piggys :/ It's happened to her since birth but it still hurts to the point that she won't walk on her feet. We've tried OTC remedy's, 'script ones, etc. and nothing helps until they've completely skinned themselves and start to regrow. This usually coincides with other strange things like her need to have a lot of sugar to get moving. I am not talking about candy but more along the lines of woke up screaming>Larry and I restraining her>forcing her mouth open>dumping juice into it and then from there we do it again until she swallows it and it takes about 60 seconds for her to calm down and realize that she's alright. Then she will guzzle the juice down and be a completely different child than she was 10 minutes ago. ???? Anyone care to pipe up with an answer 'cause we've got none!



Both my brother and my mother are really sick with some wicked stomach virus crap that is going around and I have banned them from my house. My mom lives 90 minutes away so that's not a big deal and my brother lives 45 minutes away but still, unless they are in Hazmat suits they are banned until further notice. Larry thinks I am crazy...I happen to disagree, I think I am perfectly sane.

Tomorrow morning we are going to go and lay a smack down on some woman who thinks she knows our daughter better then we do and even better than McDr. This has been an ongoing battle that we've been dealing with and the proverbial straw was broken today and I am not sure what she thinks she is doing. McDr is frustrated with this person and I am thinking how much jail time I'd have to spend if I just did the V8 commercial to her forehead along with a heaping of "here's your sign" but again...Larry thinks I am crazy. If you've ever had a child or loved one with any sort of malfunctioning system then you know what I am talking about in this lady--she thinks that things are ALWAYS by the book and things ALWAYS follow a set path. She clearly is not a member of the "A" team.

Moving on...



I was taking some pictures of what it means to live in Alaska and some of Alana outside (in 0 weather. And yes, schools here go outside until it's -10..m i n u s 10) and as we go to leave when what to my wandering eyes should appear, a moose making a traffic jam with nary a care. (OOO I can totally quit my day job and be poet) so we got some nice shots of a pretty typical day around these parts, wildlife and all.






You all in the "lower 48" remember my frozen toes and cold fingers at -3 (current temp) when you are enjoying your +60s and 70s!!

1, 2, skip a few...months that is...

It does really feel like that to me at least. This month, well actually last month, zoomed by at super speed. Things are holding steady here though. We had a wonderful birthday party, and yes, I was surprised with some gifts of my own as well! We had fun making our pumpkins this year although Noelani was being grouchy and wouldn't let me get any photos of her (I did sneak some but won't post them so she doesn't have a tissy-fit).


Alana's party was rocking and she was a skeleton-bat-girl and she was amazing. She did great overall and Noelani and Shaylin looked wonderful! Shaylin was a "glamor" witch and Noelani was a nerd. The funny thing with Alana was that she was actually an x-ray, not a skeleton. Go figure, my radioactive girl wanted to be an x-ray!

Halloween was a bit of a bust as Alana didn't feel well and then as we go to leave Shaylin threw up on the front porch...wonder-freaking-full lol. It was such a comedy of errors that I was ready to just go and hide under the bed myself. But being the fantastic parents that we were we went ahead and took them for a quick 30 minute trip to get some candy and at least try and have fun. It worked and they did have fun so all was right in the world of candy land. For Shaylin it seemed to be something she ate because she was fine later on that night and from then on. Alana has been in a perpetual state of unrest lately. Not bad but not good either. Confusing is more like it but again, if that wasn't the case around here then things would really be messed up right!

She is adjusting to her feeds, slowly. McDr cranked her down even more, she's now at 78 mL/hour for 2 hours. Oh and she is also on a pump now in order to do that. We had been pushing her 4 ounces via a bolus feed but she was having so much pain with that we had to come up with a better plan. We then tried 118 mL/hour and that still was hurting her so here we are. She's uncomfortable to some degree but it's better so we are going to try and just hand onto this and see if she can work through it.


We did also have her 6 year check up and even though we knew that she was FTT (failure to thrive) and was struggling with her height as well but here's the break down: On November 4 2008 she was 45.4 pounds and 42 inches tall. On November 3 2009 she was 43.8 pounds and 43 inches tall. Now if she was a 18 year old that might not be a cause for concern but being 5-6 it's a huge bummer. It's all good though, this is why she has a feeding tube now--we've just got to figure out her GI system and we should be golden!


There's been more going on, isn't there always, but for tonight I am going to wrap it up. On I will go over the rest of her appointment and what's been going on at PT & OT (increase hypotonia) and what we are doing in preparation for her care conference and what the deal-eo with the mitochondrial testing is. No I didn't forget to tell you about it, I've just been keeping it close for right now until we have some information we've been waiting on. I am getting sidetracked though so let me stop while I am ahead!

I'd also like to thank Rattles for her kind words and warm heart. She has honored Alana's site with an award and I wanted to sincerely thank her for that. She herself is an amazing young woman struggling with what life has challenged her with and she's doing this all with grace and laughter.

It's been so long...

Okay--tried to upload the post and the pictures tonight but blogger is being a pain in the arse so I will upload tomorrow! *grumble*

Buckle your seat belts...

'cause this is going to be a long one. So yes, we are alive around here, crazy, but alive none the less. Noelani is fine and by all accounts so far our house has been spared anymore outbreaks of H1N1.

We have had a LOT going on, here's the synopsis before I go into details; Noelani turned 14, Alana had a delayed gastric emptying scan, Alana's new 'chair' came in, Alana's new chair was not put together properly so she almost went out of it head-over-feet, Alana's tube stopped working and started causing a lot of pain, Alana started walking weird, Alana's autonomic system has decided it no longer wants to play nice, Alana had a g-tube barium study done, Alana asks me "Why do I sleep more than anyone mommy?" and the most important, most amazing thing is happening next week...Alana turns 6.

Did I mention that Noelani turned 14?!? Wow...how'd that happen? Here in Alaska that means she is old enough to drive now (with an adult) and she is studying to get her permit. She is so smart, beautiful and caring that it shocks me how all those things can fit into one package. She had a wonderful birthday and I think she got everything that she wanted, which wasn't even much. We had a family party and it was great to have everyone over to share with. She is such a young woman now that it makes me sad, yes sad, to watch her grow up so fast. I am also happy and awed by the fact that she is such a young woman.

*sigh*

Moving on to Alana...We had to do the DGE scan to see if that was causing the back-up of her tube. We've still been unable to get more than 4-5 ounces into it and that's taking awhile all in itself. It started with it just backing up and not moving anymore down the gravity feed, then it moved into pain and screaming with her asking/begging us to stop putting things into it. The thought was that she may have delayed emptying of her stomach and by us pushing things into it it was causing her stomach to be over inflated, i.e. stuffed. I've not gotten back the official results of it yet, just that our doc sent it out to be read by the GI and he has yet to respond to it. Go figure.



Super-duper cool is that fact that her chair came in. Not so super-duper cool is that the DME didn't put the straps on correctly and when she fell asleep in it the first time she tipped over (like she does all the time due to the hypotonia) and if little miss Shaylin wasn't paying attention she would have landed on her head in the store. I had questioned the straps when we picked it up and was told that it was suppose to be that way and once she was in it fully and all the buckles tightened down she'd be fine. Again, lesson learned...ppl who deal with medical things all day long can be the dumbest ppl to ask medical questions. As I am walking out of the store, trying to get all the pieces of the straps off the ground ('cause the are now completely falling apart as she's thrashing b/c we had to wake her up) I am telling the receptionist at the DME "I DON'T CARE THAT _____ IS BUSY, PUT HER ON THE PHONE NOW!!" and then calmly try to explain to her that the straps are NOT alright and that they are going to fix them first thing in the morning.



Whew. When I get home I am telling Larry this and he brings it inside and we start looking through the owners manual and going online trying to find pictures of how the straps are suppose to look. Low and behold they are not on right, you are shocked I am sure, and it takes us 2 hours and pulling apart the chassis and fixing all the straps. Woudln't you know it once they were on right she was golden! She could no longer get out and was comfortable. Now that that is fixed though it is all that we'd hoped it would be. It fits her great, she loves the tilt feature and her feet are braced in a comfortable position. It weighs a bit but it is so worth it! She picked out the colors and says it reminds her of spring so all is good.




Moving onto the next few issues all in one ball o'wax. We kept trying to push fluids through her g-tube and then we no longer could. We'd get 1/2 her meds in and then she'd be doubled over crying in pain and begging us to not touch it again. McDr is seeing her almost every other day at this point b/c we are still working on clearing the pneumonia and sinus infection and she tries to palpate her stomach and that brings on an autonomic bump with flushing, eye drooping, temp. dysregulation, etc. and she, McDr, decides that she will call Dr. Dipstick and ask him what we should be doing. Dr. Dipstick agrees that this is not right at all and now wants to check the placement of the tube, the tube itself, and her stomach in general again.



Today Alana had the g-tube barium study done and there's good news and not so good news to report there. The good news is that it is not the tube itself and it doesn't appear to be her stomach either. The not so good news is that after they were done with pushing the barium in (20 mL) they wanted to flush it with some water and the fun began. By this point they had turned off the machine and were all done, nurse was just pushing the water and I was getting my stuff done while telling them that 20 mL is usually fine, it's once you get to the 3-4 ounce that it starts to be a problem. As I am telling her this she is still slowly pushing the water and I notice that Alana is no longer talking but withering on the table and flushed. Now she starts to moan and say it hurts please stop. The nurse turns back on the machine and takes another look and whatever it "is" appears to be something to do with the small intestine. We couldn't do anymore b/c there was no order for a "small bowel follow through" so they took what they could picture wise and instructed me to call our doc and have them write an order for that, the small bowel thing, so we can see what about her small intestines is causing her pain. Round and round the mulberry bush the monkey chased the weasel...

Wrapping up here; pt has been hard. She had to stop 25 minutes early today and as the PT said, she was done 10 minutes into the session. We are hoping it's because her core is so out of whack but she is walking very odd. Alana's gait has never been a big noticeable problem, sure she falls down a lot and runs into things but it's mostly due to her proprioceptive problems vs. her gait. Well now she is having major gait issues. It's hard to describe but she's throwing her feet out, left, right, left, right, and walking like she's trying to completely flatten her foot down without using her heel. She is so incredibly fatigued that even after taking a 3 hour nap after pt she is yawning beside me and it's only 5:30.

I wish I could answer the question that she asked me...how I wish I could not only answer it, but make it better and not so. In the meantime though I am going to celebrate and grant her her wish that she be a princess bat for her birthday and we are going to play games and have pumpkin cupcakes and laugh and sing and be ever so grateful that Alana will be 6 in Tuesday.


P.S. If you saw "Alaska State Troopers" on NatGeo you have seen my dad!

The promised update...

See, I didn't forget to update =) I can report that I am working my way back from my trip to the land of pity and woe's-me. That's a vacation I have been taking a lot lately and I am not sure why. I know that sounds dumb, the I am not sure why part, but still that's no reason to be getting all helpless and crap. But enough about me, moving on to "pumpkin" (her new official name is "pumpkin" and she will only answer to it, or so we've been told).

We are on plan b and she's on 2 antibiotics now. We didn't see any improvement by Friday so that's that. The good news though, she's not much worse; right now she's more pale and drawn then she is coughing. She's been pretty low-key for the last few days, which is to be expected I suppose. She's been having short, 5-10 minutes, bursts of energy every few hours and is up and wanting to play a board game or color.



She did have OT this morning (OT comes to the house) and they worked on massage and getting her to breathe better. I don't know if I have ever mentioned it but Alana does not breathe properly. Big surprise there I know, but combine inefficient breathing patterns and lung disease and on a regular day that leads to issues, throw in some pneumonia and you've got yourself a tricky situation. It was very relaxing for her I think, not to much movement aside from switching from back to belly, and a lot of massaging of her back and rib cage to engage the diaphragm (Alana 95% of the time does not use her diaphragm to breathe).

So overall we are home so that's the great news. I'd love to report that she's all better or at least on the mend but she's not there yet. Tomorrow is another day though and as long as she's not getting high fevers, coughing worse, or having overall anymore difficulties, then we can continue to remain at home. We are still not getting formula into her g-tube and I have only been able to get around 3-4 ounces of water into her plus her meds. It's at least 3-4 ounces more than she'd be getting if left to her own devices though.



I'll post again soon, sooner if anything changes either way. Thanks again, and again for all of your prayers, words of encouragement, and support; it truly means more than you will ever know.

Pack your bags...

Sorry there won't be any pictures with tonight's posting. To be honest I wasn't even sure I was going to post anything at all. It's funny in a morbid way though, I have not been posting much on purpose and then the reason why I haven't been posting was posted in another blog, Eithene's, a little bit ago...If you have nothing nice to say don't say anything at all. It's something my mother used to tell me all the time. And yes, I mean all the time 'cause lord knows I had a mouth on me! It seems that there is a universal feeling of helplessness going around right now.

You know I like to mix up the good vs. bad news and which one I deliver first so here goes the good news tonight, the one that makes me breathe a sigh of relief, Noelani is recovered =) She went back to school on Friday and aside from a small cough she's golden. It was a very tough 4 days with the fevers but she pulled through it and no one *knock on wood* has shown any signs of contracting H1N1.

This is going to be short and sour. We are still having many problems with Alana's g-tube not working. We are only getting in about 4 ounces of water and her meds. On top of that she started coughing really bad over the weekend and was generally not feeling well. We tried to come up with a better plan on the g-tube and keeping her hydrated but nothing seems to be working. Today she needed to go into see McDr (on McDr's day off none the less) and the hope was that it was a small viral infection, the catch term of the decade, possibly in her sinuses. While this didn't account for why she was needing her O2 turned up it was a start. From there it was decided to do a sinus, chest, and abdominal x-ray.

I don't have a lot to say at this point for a few reasons, 1 is stated above, 2 my head hurts, and 3...please see #1 again.

Alana has a sinus infection, ear infection, walking pneumonia, and here's the kicker...her GI system is STILL completely backed up.

I promise to post more in the next day or so. I know that I left some of you hanging but I just am having a hard time dealing with these issues. I feel like I am failing her. Now see, this is where I have to stop because the self-doubt and pity party will get out of control and there's no helping it.

Till next time

If it walks like a piggy and oinks like a piggy...

Last night around 8 p.m. I had to take Noelani into the ER b/c she had a fever of 104.2, could barely swallow, coughing, body aches, etc. After we made it into the quarantine room and she was swabbed it confirmed what we feared and what the doctor told me he thought it was...H1N1.

We made it home around 11 p.m. and shes was miserable even with the med's on board. It was a very, very long night between her and Alana so any hopes of getting sleep are gone. Bye-bye sleep, it was nice to know you!

Thank god for my moms friends; 1 brought dinner over and the other brought over bread, milk, eggs, and speggati O's so neither Larry nor I had to leave them. They even risked contamination by hugging us lol.

*sigh* don't expect much from me for the next few days though, it's the first time I've been by the computer for the most part today and I don't think it's going to get much better for awhile.

Hey...guess what...

Just wanted to do a quick update...

WE ARE H-O-M-E NOW!

She's able to be managed at home now so here we be. She's still in a lot of pain BUT her BP is better, still on the high side but better, and same with her pulse. Lungs still have sticky-to-themselves issues but she is able to hold her sats up just fine. We are trying the thing we knew was going to come, managed care. There's no way around it anymore and even though it's hard to accept, this is how it needs to be, we can "manage" her care at home now.

We have to check in on Monday or sooner if anything goes south. Tonight we will do a feed, we've been giving her stomach time to rest & reduce some of the swelling and pain, so hopefully it will go smoothly. We are only going to do 60 mL so not to much at all. Later tonight or tomorrow morning I will post some new pictures so until them...

Nothing much to say...

Maybe tomorrow...

No new news to report really. Stopped the g-tube medication b/c her belly was so swollen and distended that McDr could barely touch it. Lungs are holding their own still (great news) now we just need the GI system to fall in suite. Her BP is still high but getting better so McDr said to look at the trend and that's what's more important; the fact that it's going down. Also her pulse is following this trend as well.



The x-ray still showed a good amount of stool and I am waiting on the GI gal to come in and talk about it. I know tonight we are going back to seni. & m.o.m. so we will see if those will help get her to a good place.

Again, maybe tomorrow...

Not tonight honey...

So we are still in la-la land. In the spirit of keeping this short and sweet tonight here's the short version:

1. The labs look good, in fact her B12 is on the tippy top of the high side so check one thing off the list. Her CRP was 1 point away from the high range, but again, not to uncommon with Alana so we are just leaving that at that. Check.

2. The chest x-ray was unchanged so that's both a good and bad thing. Good 'cause it's not worse, bad because she still has sticky-to-themselves lungs. The thing that trumps all of this and makes it a positive is that she's been able to keep her sats up and aside from a lot of coughing and a scratchy voice I think she's able to hold her own in that area--for now. Check, Check.


3. Her GI system refuses to cooperate. It is moving things, but not like it should. We are on the 2nd jug of Golytely, almost half way through it in fact. It's causing her to be swollen and uncomfortable and we keep having to turn it down, turn it up, turn it down, turn it up due to all of the issues it's causing. Not checked.

So, here I was thinking that 1 thing would not keep us here but gee, so much for that. It's also a little two-fold to be honest, her blood pressure has been high again all day today; 136/76. Her BP is usually a lot lower, even with all the things we deal with with Alana, high BP is not one of those.


What's left to do is finish cleaning out her GI system, have an abdominal x-ray, do a regular feed, and keep her BP within normal limits. Here's to tomorrow...



PS: Usually don't ask for things like this but there is another little girl, her name is Eithene, and her mom and I have talked about how she and Alana have a lot of similar issues, 1 main one being undiagnosed (for the most part) with the added bonus of "probable this, and probable that". Anyway--she's got a wicked infection and it really needs to get under control. I know that there are a lot of people out there praying for Alana so maybe while you are doing that you might send a few to Eithene in Mass.

Another day...

This is what she said when she woke up this morning; "Mommy, are we still in the hospital?", "Yes chicken-butt we are still here". The morning started early around here, like 1 a.m. early. She was desatting again last night and was 2.75 ltrs for her O2 needs and then that gave away to a 4 a.m. wake up call for the bathroom. The medication finally started to work and it took about an hour to get things done and her back to bed. From there McDr came in at 7 a.m. so at this point I gave up on sleeping any longer.



As of this morning not only did her right lower lung sound worse, well actually no sounds, but the left lower lung as well! This prompted the outlook of another chest x-ray (the girl is radio-active I swear), labs to check her CBC, electrolytes, CRP, etc. and if we can get her to pee a clean catch. McDr feels that not only are we dealing with the surgery and her lungs but we may be dealing with something viral on top of it all. Tomorrow morning we will get all the goodies from these tests but the good news is, drum roll please, that she's been down to 1 ltr since noon and has been able to stay about 92% for her saturation's! It's not great, and her RR is at 37 right now as I type this, but it's a start in the right direction.



Tomorrow she will probably have yet another x-ray, this time of her abdomen to check and see how the clean out goes. After 40 hours we are starting to see good results and good lord would I love to be using her g-tube for FOOD and not laxative. She's barley drinking, and eating is very minimal. I want to put this tube to use for the reason she has it!

So our goals for tomorrow/go home are:
1. Lungs need to sound stable enough to go home, i.e. no more 2 ltr desats, good movement, better x-ray.
2. GI system needs to be sparkely clean and ready to accept her g-tube feeds.
3. Labs need to be good with no signs of infection/electrolyte imbalance, etc.

Now a lot of these things can and are open to overall wellness so we will go from there. If 2 out of 3 are good then we go, if 1 out of 3 are good then we stay.

I am beyond tired, hence the reason for no update yesterday as I fell asleep before I had a chance to. I am feeling positive that she is on the mend, at least for now, so let's just keep that going in the right direction. We know that things with Alana are never going to be the same as they were even a year ago and this has been and is hard to accept. I think one thing this admission has taught me is nothing with her is ever going to be easy-peasy-japanasy but that's what makes her so special!


*Wrote this last night but the server was having issues at the hospital, I will update again later when all the answers come back for these things*

And the beat goes on and on...

So we are still in la-la land, aka Childrens, but that's alright. First the pain is much,much better. She's still guarding and very uncomfortable if the tube is touched, but she is moving around now and wanting to get up and move about the room. Today she managed to walk down the hallway to the art room and paint a wooden puppy but it certainly took a lot out of her. That's when her fever started to climb again as well as what we are dealing with now, high blood pressure. She then promptly fell asleep and while she was sleeping her face swelled up, turned bright red, had the pallor around her mouth and nose, and her whole body felt uncomfortable. Her site is healing nicely but she is incredibly distended from lack of "moving things along" so that's adding to her pain/uncomfortableness/swollen belly. Tomorrow we will be discussing what to do about this b/c she's 'gained' almost 2 pounds due to blockage. Just freaking peachy.

As for this morning her cough was worse again so they ordered another x-ray to make sure things are going in the right direction. At first the doc on call thought (when I told him) that she was coughing a lot more that it was a good thing, that she was opening that section of lung that is stuck together, as he was leaving the room she had another coughing fit (he had not heard the cough) and walked right back over, listened to her, saw her gasping for air (with O2 on) and then said "What is that?!". At this point I just shrugged because if he had been listening to me he'd have known THAT is what she had been doing all night. Needless to say he said maybe you can leave tomorrow but in the meantime we need another chest x-ray. It's still not back yet :/ so dunno what the deal is.

Her heart rate decided last night that it had had enough of being a speed demon and then took the pace of a Moped and we had a fun filled night of alarms from that! The nurse manually counted out her respiratory rate and it was in fact 10...this from the kid who lungs like to march to their own beat therefore she rolls at about 25-45. Needless to say it was yet again, another long night.

All in all though things seem to be on the mend. I am not sure what to make of her BP, RR, HR, fever, or facial swelling but at least I am not the only idiot in the club right now. We have a bunch of doctors right there with us!

PS: Remember those old TLC commercials about Merlot and Email not mixing? Well last night, yesterday nights post could be the same token...stress from a long day/night and Blogging might not mix! Sorry for the dour mood of it all, this "stuff" has just taken a bit of a toll this time.

And the beat goes on...

So I know I was going to tell you all the things that were messed up yesterday but if I do that then I won't get to the update. On that note--here's the update.

Last night was very difficult and frustrating. She was running a fever most of the night and struggling to get any decent breaths. She did sleep finally and that helped enormously. This morning she was unwilling to get up and was very sore so we just took it slow all the way around. By noon she was drinking apple juice and was able to sit up on her own. We then set out to walk about 2 minutes down the hall and oh boy that was fun. She was so sore and unsteady that it was upsetting to see her even try. She did try, and she did make it, and she was okay.

The rest of the day was a lot of the same, tears, smiles, sitting up, sitting down, etc. By 5 p.m. she was able to eat some apple sauce and then she worked up to some mashed potatoes and that was enough for her. Tomorrow it sounds like we are going to try and start a feed through her new tube and see how it goes. I know the cleaning of it and rotation of it 2x today was torture. This had been by far the most painful thing she's ever had done. Yes, worse then her lung biopsy and chest tube.

Moving on though. The fevers have been waxing and waning today and we are in the waxing part right now. Yesterday was a lot of the high respiratory rate as well as the high heart rate, well tonight it is the opposite. Both those rates, RR & HR are scary low tonight. They've already called the doctor and there's really nothing we can do about it at this point besides keep a close eye on her. She is sleeping, soundly at that, so that's good news.

I don't know what tomorrow will bring, going home? Staying? Feeding? It all depends on if they think she can be managed at home I suppose. It's something that brings me no joy, no sense of security, that we are to the point that her set of kooky medical things are things that are okay to go home with. Things that no other "typical" child would be allowed to go home dealing with are things that we must. I know it's late, and I know that I should be in bed instead of typing this and having yet again another weak moment but it just is. It just really sucks.

Tomorrow will be better than today and tomorrow will also mean she's another day healed.

Post surgery...

Sorry I didn't update earlier today but it's not been a good day around here. I am going to keep this one short, sweet and to the point and will give a more detailed account tomorrow.

The surgery went okay, not great, just okay. First they had to place the tube completely different than where they'd shown us and marked it. :( It's way closer to her ribs and completely mid-line but what can you do.

During the procedure she bled more then she should have from the site, enough that they drew labs to check clotting time but I haven't received word on those yet.

When she was brought up to her room (and we got to see her for the first time) she was taped up (IV, GTube, etc.) in BOTH tapes she's allergic too. After how things had already gone that morning, again more on that later, I was steaming and ended up getting the shift supervisor involved.

Within a few hours she was screaming in pain and then we started to have a lot of lung issues and for me to say Alana was having lung issues means that it was bad. We now know that she had a small section of her lungs get stuck together/co

llapse onto itself, therefore she's just shy of 3 ltrs of O2, not getting above 95, RR over 40-50, and miserable. After the stat x-ray this all came to light why she was having such issues so I just don't know. They hope by tomorrow she will be able to reinflate that area if we can get her pain under control and get her up and moving.

They've started bolus IV fluids b/c she's getting dehydrated so that's a whole nother round of fun.

She also has a fever close to 102 so we are just riding this all out and hoping it's just Alana being Alana and it's going to get better tomorrow.

I will update more tomorrow but for right now I am beyond tired/angry/scared/sick of hearing that she's a complex child and that some of these things are expected.

It's all about the hair...

So we made it through the first week of school for Alana. Aside from the face + foot = smooching, the daily trips to the nurses office due to very cautious school staff (I am NOT complaining-better safe then sorry!), tears due to music class (just way to much noise and moving around), I think she's made it through the week relatively unscathed. We had a lot of carry over this weekend though, fevers, a major, major melt-down when OT was trying to get her to cooperate on Saturday morning, and a significant lack of eating and drinking.

Although none of this was expected it has still been a rough few days but hey, we go ahead and decide that because she showed some signs of perking up on Sunday night we'd go ahead and skip out on Monday and take the girls to the state fair. We are brainiacs I tell ya! There are those windows of insight that you only get AFTER you have done something pure genius and can sit back smugly and look out that window and gloat about how you tricked the man, how you pulled a fast one. This was not one of those times. *grin* IT did go well, the girls DID immensely enjoy it (well they did until Shaylin discovered that they toy that you get after paying $5 at a game is a P.O.S and breaks on the way home), and Alana has paid for it all day today. I am still glad that we went, and even though I am still going to be going to bed early tonight to try and recover some lost sleep from Alana's restless night, it was worth it.

On the medical front not a lot has changed. She wasn't able to go to school today because like I said, she's having a rough time since last night and the fever finally has started to ebb so that's great news. She did have to go in for another x-ray this morning and an impromptu meeting with the GI nurse at noon so that killed another 2 hours of the day right there. Unfortunately those things that I've been doing to try and help her in that area are not working and she's been experiencing a lot of pain in her stomach and back area. The x-ray showed that she hasn't made much progress, not much at all :-/ so we are now going to be "hitting it from the top", i.e. something really nasty that I've been told fruit punch loaded with sugar will help hide the taste of. Great. Now she's going to be hurting, mad at me for making her drink something nasty, and running around the house like she's on crack. Just great.



We check back in on Tuesday with GI and then again of course on Thursday (the 10th) for pre-op. Taking this picture of her this weekend really reminded me why we are doing this. The whole thing is making my head hurt so moving on. Backtracking though, Thursday (the 10th) is the big neurologist appointment so just pray. Just pray that even if it's not good new's it's an answer that we can move forward (?) with.

Here's a then and now for you as well--this was last year at the fair, within days of each other exactly 1 year ago. So many things change, not so many things change.

Yes, that is the same jacket that she wore last year. Normally not a big deal, Noelani is wearing the same winter jacket although Shaylin is not. I'd have hoped though from 4.10 to 5.10 (years.months) she would have outgrown something!