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.