Woo hoo

Thank you prayer warriors. Lillian is finally fever free. We went back tot he doctor today and he said things looked and sounded good. She is still pukey, but such is life. She still has a really wretched cough, but definitely much better. We are going back on prevacid to see if that helps anything. She has a swallow study wednesday and follow up with the plastic surgeon thursday.

I wonder if they think I'm unstable

Lillian kept me up all night with coughing, vomiting and fever. Literally she threw up like every hour. So not pleasant. Today, we are back from the good old pediatrics office. Lillian got to meet a new doctor today and she really liked her. Poor Dr. Taylor, she is so mean to him. He was on vacation so she got someone we haven't had the opportunity to meet. I loved her, she was awesome! Dr. I decided to give her a rocephin shot. I love rocephin shots. I don't love that she has to get them, but they are so much more effective for Lillian than any oral/gt med. Dr. I says that something else has got to be going on for her to be running a fever for 11 straight days. I agree. (sometimes you feel like a nut job going in there so frequently, it doesn't help that I'm totally sleep deprived and mentally exhausted from seeing her suffer. ) Course, I prove my instability by having a break down, nothing like making that good first impression, huh? We go back Monday for another shot and hopefully we do not make it into the dreadful hospital before this is all said and done. Thanks for praying and keep them coming. Still in the woods we are.

See, that's what happens

It has not been a good day. Vomiting is back and very very fussy. Stupid virus.

I will not say it

Yesterday's post just had to be written, although I desperately wanted to share information about our long day in KY, I needed to get that off my chest first. Lillian saw two specialists Monday, ENT and pulmonology. First just let me say I got lost a few times in parking garages and buildings...although it is pretty easy to find where you are going in a car, it's difficult to figure out where you are supposed to park and such. So after finding myself in a completely wrong building, I finally got to her ENT doctor 15 minutes late. It was a ZOO in that place. All the time I'm sitting there thinking UGH all these people and their germs and she's already sick and I'm sick and we're spreading our germs. *shaking head* Again, it's wondering whether or not you are making the right choices. sidebar- non-parents should never pass judgement on parents bc sometimes you just don't know what to do. having children does not make you perfect. Anyway, we waited for what seemed like eternity, almost an hour and finally met the Dr. She was extremely nice. Really liked her. She said the tubes looked good and if they didn't fall out in three years, well then they'd need to be replaced. News to me. I thought they had to be changed every year. She was enthusiastic about getting her started on the decannulation process and was glad we would be seeing the pulmonologist later that day. That the two of them would work together on the process. They also scheduled her for a feeding study to see if she aspirates. That ought to be interesting. We were finished there in just enough time to reach the other doctor with five minutes to spare. Things were going fairly smooth until it was determined that she needed a breathing treatment. Well, I don't know why, but she cried pitifully though the whole thing. I don't know if it was because she was tired, hungry, or just feeling bad, but it was awful. They did use a different sort of mask too, it was not a pleasant ordeal. It was very strange to be talking about her to people who knew nothing of her history. There was A LOT to share. Needless to say, they have her on a totally different medication regimen to prevent going into the hospital, which has seemed to be really good. They also want her on prophylaxis tobramycin nebs---amen for that. They asked me about sputum cultures and I said, they don't do those at Riley and get this, she asked me why----now doesn't that just make you laugh??? I told her the reasoning I've been given and she just shook her head( this is the NP). So after a lengthy discussion the doctor came in. The quietest most mild mannered man. Very approachable. He was so soft spoken, I felt like I had to really listen to hear every thing he was saying. Bottom line....they are coordinating with ENT to get a flexible and hard bronch done to check the airways. I'm supposed to get her scheduled with the sleep disorder center for a sleep study. He ordered a cap for her trach and once she is over this illness, we are supposed to start capping her trach. He would like to see if she gets through everything ok, hopeful to be decannulated by November. This means upcoming hospitalizations and lots of trips to KY. Her swallow study is scheduled for Sept 3, we follow up with plastics on Sept 4, and I sitll need to call and schedule the sleep study. I've just been hoping to start feeling better so I have a clear head. It was an eventful, exhausting day. Scary. Exciting and scary all at the same time.

As for my title, I will not say she woke up without a you know what and she might be feeling you know what. She has tricked me every other day by appearing to be getting over you know what. So I'll leave it at that. Know what I mean?

Dear Virus, Infection, or whatever you are...

Please exit the body of my child. She is frail and weak and is tired of having a fever. She needs to keep her food in her tummy, she wants to feel better. She would like the body racking coughing to cease. You have managed to have her on any and all medication to prevent her from going into the hospital, you have been on an 8+ day rampage on her and she's tired. You have weasled your way into her sisters and her mother and none of them care for it either. They can better handle your wicked tyraid but it tends to make everyone grumpy, weak, and just generally unpleasant. You have managed to drop Lillian's weight a whole pound in a very short time....you have made her Mom question every decision she has made regarding what to do. Please make haste and leave this household. You have inflicted your damages and we need reprieve.

Notsomuch

Is she better, well, she tried to trick me yesterday, acting all happy and playful and aside from giving her treatments every 3 1/2 hours, she seemed to be doing quite well. (did I say treatments that frequent?? shhhh, noone has to know but us) Today-AWFUL-back to puking quite badly, fever has returned with avengence, and basically laying around pretty listless. Now, if we examine the history of the sweet little princess, she does tank and this would be right aroudn the right time. Her sats are still ok, 93-95 while sleeping and I just keep floating on the bubble of should i take or should I not. I did start her on tobramycin treatments as well, which has cleared up secretions from green to white. I think the good news is her cough is very productive. At least that junk is coming out. Monday we are supposed to go down to KY for the pulmonologist...good timing, right? I do believe tonight I will continue doing treatments through the night to help her have a better morning.

In total, now, since Lillian has been sick, every one of the girls are sinus-y and not feeling great. School has only been in session for a 7 days and here we go. *sighs*

Inquiring Minds want to know

Lillian is extremely ill today. She was up all night and finally slept for about two hours from 4-6am. She has vomited nonstop and is running a high fever. I was able to get 75cc of pedialyte into her a couple hours ago. It has been a really rough night and day.

To clarify a cockelburr...I grew up in the country, and when the dogs got out into the woods they would sometimes come back with these prickly puffy things stuck in their coats. Some could be small, but others would be larger than a grape. You really had to work to get them out of their coats. We always called the burrs. Matt, however, calls them cockelburrs. Not sure if it is a real word, but that is what I was trying to describe, I know, not a very pretty picture, but now you have a better understanding of what is coming out of her or trying to anyway....

It is obvious that her stomach is causing her quite a bit of pain and there is absolutely nothing I can do for her. I pray this is a 24 hour thing and she is coming around the corner on this thing. UGH.

Home Health Agencies and update

Ok, if you are not interested in reading the psychotic rampage of this mother, you may want to skip to the next paragraph. We have been having troubles with our supplier of Lillian's medical supplies. I ordered apnea monitor patches for her two weeks ago and still have not received them, and being told every day that they would be here the next day. Long story short...they want me to strap her into the emergency straps of the monitor....I'm sorry, you'd just have to see that to understand it.....not going to happen...at any rate, once again...people who have no clue what it is like to care for a special needs child. It is very incomprehensible for me to grasp the mentality of these people. People who are pushing papers and have no clue what your child's life is like. Treating your child as if they are not a person, but a mere inanimate object. Of course, it's not Praxairs fault (the supplier) and it's not Clarian's fault (the micromanager) according to both companies. GRRRRRRRRRRRR

Lillian was running a bit of a fever this morning but seems to be doing well for the rest of the day. I took her to the doctor yesterday bc she ran a fever all day and acted miserable, but nothing showing up on exam. She is currently still napping. Her feedings have still not been going too well, and pardon the frankness, but her poops are looking like cockelburrs as Matt likes to say. My sister pointed out today that perhaps she may be teething....that had not even crossed my mind, but perhaps the culprit of the recurrent fever. Hmmm, maybe baby. I'm supposed to be giving her enemas every night to make sure everything is nice and soft and keeps moving.

She was so cute today laying in my bed on my pillow teasing me that she was in my spot. Too funny. She also dragged her Dad's guitar into the living room and played that for awhile. I'm sure he would not approve, but what he doesn't know won't hurt him, right? LOL.

Kentucky and a Puke Fest

We are back from the Kentucky cardiologist...who was FABULOUS. Superbly nice man. Did her echo himself, which I really liked. He said he didn't see any evidence of the VSD...wahoo---however.......there is another hole, that we have NEVER been told about, that 50 % of kids have. He says that one is still open and if it doesn't close they can do it in the cath lab. He said it should be by the time she is 3. He said overall she looks great from a heart standpoint and he would see her again in a year.

Now for the interesting part of the day....the kids have been in charge of taking all Lillian's bags to the car, for some time, and of course they are also very anxious to be in the car and waiting. Well, we were roughly 20 minutes away from the house when I looked back and found that noone had grabbed her suction.....I had to do a uturn on the interstate, go back home, so basically blew my time frame all to pieces. Get home, find out they didn't get the suction or the trach bag......the two most important items that we must have. Of course, MOTY didn't check bc this is a routine that we have had for a long time. Despite that we get back on the road and on the destination. We get off on our exit and I'm needing gas, running late and not sure where the road is that I was expecting to turn on. So this nice man gives me directions and as I'm standing there pumping gas, the guy wearing his big baggy shorts and ghetto shirt comes walking by and checking me out. Now, I'm not one to think men look at me. AT ALL. But it is difficult to ignore someone who is walkign right beside you and gooning at you. Anyway, I ignore him...BUT as he walks back by his is muttering things at me under his breath...flashing his big old gold teeth smile at me and I believe talking about my "fine you know what as I'm pumping my gas" you can guess it---make the rhyme. I was NEVER so anxious to get in my car and get out of dodge. He backed his car up behind me.....*shivers* yuck.

On our way home, Lillian puked most of the way....but that is par for the course. Thankfully she is good to go from a heart standpoint and we see them again in a year.

In 12 days we head back to pulmonary and ENT.

Lather, Rinse, Repeat...

This is how I feel sometimes....this post is probably going to be very similar to my last. Lillian continues to struggle with vomiting......AND constipation. I've decided this is her life and that is how things will be. As long as she doesn't start losing weight and looking sickly I'm just trying to go with the flow. The one troubling thing was, typically her night drips go undisturbed...however, this last week or so, she has been vomiting in her bed as well. Nothing like having to roll your baby all over the place and get her changed bed changed, settled back down...sure vomit fest is finished.....every.single.night. Makes for tons of laundry too, albeit a minor issue. Not complaining...just trying to explain. So, the vicious cycle continues with the constipation...so unpleasant. I think it is the worst feeling to be so helpless to do all that you can and still not be able to help your child. She also has had an ear draining, which if you've followed you know, goes hand in hand with the vomiting. Things have been moderately better today, but it seems to be a daily change, one better day, one horrible day. This has also halted feeding attempts which we were trying to accomplish, but oh well....

In other news, she is continuing to learn new signs and the big sisters treat her like a trained monkey getting her to do any and everything she will copy. It is cute, but you know kids, they continually make her do things over and over again and typically things that will not improve her communication skills at all...lol, can't seem to bridge the gap to them....

She is no longer receiving PT because no therapist in this county wants to take her case. Not really sure why other than the fact that they would only be with us until November. I've been told it's bc noone has openings....so I'm trying to not focus on the negative and hope we don't lose ground. Still feeling pretty confident that I don't want her to attend public school at age 3 due to the germ factor...but time will tell. Lots of new things coming up this month.

So that is how Lillian's world is turning these days.