I hate to be so descriptive

Well, not really....that smell, the one I keep saying is coming from my fair child's mouth/nose. The smell that I can only compare to like a dead critter smell, sorry...but it's true. It's normal. That is truly disturbing to me. It doesn't seem possible that a living breathing person should have that emminating from their body. ugh.



Puking continues and since I started this post last night, today I'm feeling freshly discouraged. I should not complain, there are so many "worse" things that could be happening, but my goodness, she does need nutrition to be able to heal and grow and get healthy. I cannot understand why we are having this never ending pukefest. Is this a part of chromosome problems and why does it happen in waves??? I'm so burdened. A day has not gone by since mid march that she has not puked at every bolus feeding. I want to cry, I want to be upset, I want to lash out.....ITS NOT FAIR FOR HER. Hasn't she been through enough. She's GOT to be tired and I know I am. I'm not talking spit up here, I'm talking full on vomit til its gone.



On a slightly less depressing note....she is having so much fun today throwing new bags of socks all around the living room. What a nut.

No pain meds, you know the good ones...

We officially ran out of pain meds for Lillian last night. I gave her the last dose at like two or three this morning. The smell is still there. I did call the surgeon today just to check if that was normal and am waiting to hear back. She seems to be doing well overall except for the dreaded feeds. Ugh....it wears me down, seriously, I cannot even imagine the toll it has on her. I hate to puke...I cannot imagine puking EVERY SINGLE time I ate. blech

Interesting enough, got a letter in the mail today from Riley surgery notifying me that her surgeon would be out of town the week following her surgery and if that concerned us we should call their office to reschedule....are you kidding me??? I took this opportunity to call and tell them we were no longer in need of their service.

She is completely obsessed with going outside. She thinks she should be out there if anyone is out there. Let me tell you how much that annoys the girls. They have a little tolerance for messing with her outside, but it quickly runs into "their" time. I took little missy for a walk today and we went to see the goats, but they were not in the field. (friendliest bunch of goats you've ever seen)

Another new experience today, Lillian pulled the Wizard of Oz DVD out of a box and kept shaking it at me and pointing to the TV. I put it in, quite shocked bc she is really not too much a tv watcher. She did get interested in it, as much as a two year old is anyway. Then tonight, she did it to me again...I said are you serious??? She shook her head yes at me very slowly several times as if to say, did I stutter??? It was funny.

I spoke to a friend who is a speech path today and she told me that most kids have to have multiple surgeries on the palate....UGH.....that was depressing information. Sometimes I wish they would just tell us these things up front so I'm aware of it. So it doesn't feel like a bomb landing on me. I have felt like that many times with her. For instance, the time she had blood come out of her trach...I was buggin'. When I called they were like so nonchalant, oh yeah, that's normal. Don't you think you might ought to tell a parent, that someday blood may come out of her trach...it's not a big deal, it's expected...do they tell you that in training....NOOOOOOO.

I feel heavy hearted today. One day at a time...

hmmm

I'd like to say things are going fabulous, but they are not, don't get me wrong she's not horrible or anything, or maybe I just don't know what's "normal".

It has become evident that pain medicine only holds her through the night for about four hours. Every night she wakens just before three crying and usually bleeding and it takes me a good hour to get her back to sleep. Her feedings are going HORR-IBLE. Yesterday, I just went straight to pedialyte. Today, we are trying to cut down her volume and slowly slowly slowly work back up. The smell coming from her is atrocious, Matt says it's my bionic nose.....but the kids smell it too. Oh, well, vomit + blood + mouth bacteria= nasty nasty smell. What should I expect. Holla back if you have ANY experience in this avenue. Any long lasting crying/coughing/vomiting causes bleeding. We assume this is from the existing hole. I was going to show the drawings on here, but I can't seem to find what I did with them.

So, the hospital experience....I couldn't really give you any specifics of comparisons, except they validate parking...lol. The nurses we had experience with were extremely kind. There were difference with treatments and such and I think they are a little farther along on computerized charting. They had alot more going on in the evening hours for kids and you NEVER see that at Riley. We had a child life specialist come see her in the evening hours. And, have I mentioned that I enjoyed not talking to this student and that student and so on and so on. When I told them what formula Lillian was on, they didn't blink an eye....(Riley had some trouble with that and they are the ones who ordered it for her) They had her meds, oral nexium (which I was told is not available at Riley) The only bad thing I can really come up with, is they weren't very quick to call lights. I mean they answered right away, but sometimes it would take some time for the nurse to come. That will be on my survey as the only negative. I'm not sure, but I think all their rooms are private. WITH Bathrooms! It will be interesting to see how things evolve as we explore this new environment. ANY time a lead came off or a monitor alarmed they called into the room. This was nice but did become annoying at times. Though I don't know that it's altogether a negative experience. Parents are also able to purchase meal tickets in the gift shop and are able to get items off the "munch mobile" when it comes to the floors. They were also ready/willing and able when I wanted someone to sit with her a minute to get some lunch. (she's an onery girl taking out her IV and pulling off her splints, a bad thing when you want nothing in her mouth) Bottom line, I'm happy and feeling more confident each day in our decision.

I'm a sick woman....

Ok, I should officially be considered MOTY bc I thought it was funny how my child reacted when placed on versed...and sickest yet, I'm posting it for everyone to see. I'll apologize now because I am not smart enough to get it turned the right way...it was a cell phone video. This video is still not as funny as she was in the beginning. She was smiling and seeing the purple elephants....FUNNY.

This is a picture of her....

This is what you see when you come off the elevator and I didn't realize it (probably bc I was a nervous wreck and I only had two hours sleep) but the pastor pointed out her name on the board.


To give a brief synopsis, I did like the hospital, I felt the doctor was extremely caring. I liked not having to deal with 10 different residents/students before we actually got down to brass tacs. Don't get me wrong, it was different...a lot different from a nursing care standpoint....but I'm very comfortable moving her care there. She was in a private room in a quite quad and all the nurses were very caring. I feel we are and have made the right decisions. Now, the road to decannulation begins!!!

Today, Lillian has been pretty fussy off and on, but overall doing well.

Thank you for continued prayer and support!!

There's no place like home

We've clicked our ruby slippers and we're home and happy. Last night about midnight she really woke up and was acting much better. Today, she is almost back to herself. You can tell it hurts her to cough...imagine that. This is also the first time she's experienced barfing without it coming up her nose. She is acting very tired, I think she might just have over done it a little today...

The nurse came in the morning and removed her dressing, which wasn't terribly pleasant, but not as bad as I thought it would be. She has some bleeding afterward but not too much. They wanted us to stay for the day to make sure no more started. The doctor was so concerned, he came back and made a special visit to see her today bc he said he just couldn't get her off his mind. His nurse also called every two hours to check on her.

She, of course, charmed EVERYONE today.

There is more to tell, but I've literally only been home about half an hour. I'll post more later and also share our versed video and a drawing for some understanding of the hole in her mouth.

Today was my Grandma's funeral that I was not able to attend and I just need some time to process and grieve, but I think that is on the backburner for the time. Thank you for all your comments and ecspecially your prayers!!!

P-day

Oh my goodness. It has been a difficult day. The surgery went pretty well as expected. Her ears looked fine too. They were not able to close the entire palate, so there is a small whole inside under sewn tissue (diificult to explain) that is oozing. She came up from surgery, swollen like I was not expecting. She is in a great deal of pain and was bleeding quite a bit more than anticipated. The doctor would like to keep her as calm and pain controlled as possible.

PTL this surgery is done, but oh, my poor baby is miserable.

I will tell you, I did allow them to give her versed to calm her before taking her back and friends, that was darn right hilarious. She was definitely trippin'. I will have a video to come....

We wound up having to be here even earlier than we expected so I got a grand total of two and half hours sleep. It is a little scary to be here since they aren't familiar with her, but so far I think she is in capable hands.

I feel it will be a long night. Thank you for your continued prayers and support.

T minus 1 to P-day

Tomorrow is the big day. Today we make a trip to the Ped. to make sure she is all clear from a respiratory status. Much left to do to prepare. I probably won't be able to post again until I return home.

To complicate things just a tiny bit, my Grandmother passed away Sunday morning, please pray for our family. This was a very unexpected loss and will be hard on the family.

One day and the steps to decannulation begin. My nerves are shot.