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!