Wednesday, December 30, 2009
Tuesday, December 29, 2009
We have been busy enjoying the holiday (I will post Christmas later) and have been doing the busy holiday things, since I was so behind because of the hospital stay and sick kids...but....the packages are almost all sent (just 2 left to address and tape up) and the Christmas cards are almost all done.
Thursday, December 24, 2009
She is doing well at home, though I think her sleeping habits are a therapists worst nightmare! But this is very typical for Aubrey asleep or awake:)
She is facinated with herself in the mirror and loves talking to herself, though I think that she was confused at first with who this girl with the new face accessories was:)
We love the new cow jammies that Grandma Olson sent us this week...
but they were a little big and as you can see, between the big jammies and all the cords in her bed, she had some issues. (Quick take pictures...then save baby:)
Isn't it in the parent/baby handbook that you shouldn't even put blankets in their beds at night to keep them safe?!?! Kind of seems odd to then hook them up and hope they stay safe:)
Grandma Smith sent us some new leggings to keep us warm while we continue with all the cords.
As you can see, Aubrey goes with the flow and is just as content as she always was. She is such a good patient and takes it all in stride. We are so thankful that she is home for Christmas and are thankful for all of the wonderful doctors who take care of her. We are very blessed in that department and appreciate all the love and care that they give to both Aubrey and us.
Thursday, December 17, 2009
Tuesday, December 15, 2009
Monday, December 14, 2009
10 Things we aren't enjoying at the hospital
10)The height of the crib (ok for tall guys--not ok for short mamas)
9)Handicap bathrooms (same as the crib-great for tall people-annoying for short:)
8)Therapists come every three hours--even at night
7)Nurse brings med by the clock, not when it is convienient for the baby (example-not when she is SLEEPING)
6)We might as well be in the Northern Blizzard right now, our room is so COLD at night
5)Food takes 45 minutes to get here and is sometimes a little soggy;(
4)Repeatedly being stuck by needles
2)Only being able to go about 5 feet from your bed
And the Number 1 thing we aren't enjoying at the hospital:
We are away from Daddy and the Big Girls:(
Top 10 things that we are enjoying about our hospital stay:
10) Someone else gets to change the linens.
9)Someone comes to clean and take out the trash EVERY day!
8)Someone else is making breakfast, lunch and dinner for us AND doing the dishes.
7)The nurses and respiratory therapists are AWSOME and we have actually had some of the same nurses several days in a row as apposed to new people every day. (here she is with the percussor, she likes to help, but it vibrates and they use it on her chest and back to help break up the "goop".
He is going to do one last chest x-ray to be sure that she doesn't have a problem area of mucus in her lungs. He is working on setting us up with home oxygen again, and will release us with frequent office visits, until she is off. For those of you who remember post surgery, we had a GIGANTIC oxygen tank at home and tiny ones for going to office visits. I shuttered to think that would be the case again and he assured me that we would work something else out, since I can't possibly keep her in one room at all times again. He is aiming for tomorrow sometime.
This gives me great hope and joy! God is so good! It will be nice to at least be home under one roof again. Once I know the details I will pass them along. Thankyou for all of your continued help and prayers.
Sunday, December 13, 2009
Dr. Rembecki was here this afternoon and was surprised that she hadn't had more improvement, but is pushing forward. Her fiesty nature is giving everyone a joyful challange! She basically needs to get some coughing to get it broken up and out or laughing or bouncing around and moving a bit more.
So...they have determined what therapies are working the best and we will stick with those, but also added more! But it's ok, cause the new ones are kind of fun. After breathing treatments, they usually do this thing where they thump her on the back and chest. I helps to break up the mucus. I will do that randomly during the day and the therapist will now use a new device that is about as big as a donut and vibrates. It was like a mini massage for Aubrey and surprisingly, she LOVED it.
We have also been granted a portable oxygen tank to take walks. Aubrey either sits on my lap or on the floor to play or in her bed...not a lot of movement which is what she needs to help get her over this. We are allowed to "bounce" up and down through the halls as much as we want. There aren't many patients up by us, so we spent 20 minutes this afternoon walking the halls. It is such a colorful and wonderful pediatric place, I'll have to post some pictures of it sometime.
She has seemed really perky and back to herself today, so I am hopeful that this is a turning point...but we are cautiously taking it one day at a time. We are being patient with the time table that God has set before us with Aubrey. He is ultimately in control and has a plan for us...we are just waiting for it all the unfold.
Thank you to everyone who has offered to help us out again. We are humbled by your willingness to cook and babysit etc. We are taking a lot of things one day at a time, but I know that someone is setting up meals for Woody this week and he is playing it by ear as far as babysitting. Kate, as of bedtime tonight, is still running a 102 fever. We don't want to expose her to anyone elses family. Woody is heading to the pediatritian tomorrow to have her checked.
We will keep you posted on the night and anything new tomorrow. We don't have any idea how long we will be here. They have gotten most of her cultures and labs back and all are negative, so another thing to be grateful for. They are still waiting on a couple. I do know that he won't be in to see her again until tomorrow afternoon, so another late update tomorrow unless something big changes.
Saturday, December 12, 2009
The only bad part is that the tape is actually on her hair! I wasn't watching when we put it on and so we weren't careful. I may let the nurses be he bad guys and pull that off when the time comes. I am really tired of being the bad guy and helping to hold her down etc.
Tonight at dinner, her numbers were almost near 100% and so Stephanie lowered it, and lowered it, and lowered it and even turned it off for 20 minutes, but Aubrey started dipping when she got tired, so they set it at .1! Which is like nothing, but Aubrey, our little addict, just has to have something. I am guessing that they will bump it up a little more as the night goes on since she gets into such a deep sleep sometimes, but we shall see. I am not being too hopeful, as we have been down this road before with her.
I have had lots of comments about the Baby Legs. Here is the actual website: www.babylegs.com. I got the pink ones for $4 on ebay (including shipping) but splurged for $7 at Target to get the cow ones. If you are crafty, and have the time, you can buy ladies knee high socks, cut the toes off and hem them to make them even cheaper. I just didn't have the time and thought that these were good deals. I didn't know that they would get so much use though already and am wishing that I had more right now.
Woody has been just the best. He is tackling day to day life with the big girls and also doing laundry and carting it back and forth to me and Aubrey. He is so wonderful. When she was in the hospital for surgery, I was still pumping, so we took turns each night. That gave us each a break from each situation and time to refresh with the other kid (s). So this has been a little harder on us in that aspect. And it is hard to get on the same page, when Woody and I don't get to see each other either.
We got a professional sitter for Aubrey tomorrow night (thank you Christy - who volunteers to sit with babies at the children's hospital on Wednesdays). That way I can go home and be with Woody for a bit and tuck my other kids in and grab what I need for the next couple days. Woody will have a little help tomorrow, so that he can go to the grocery store and restock by himself.
We appreciate all the prayer and love and support that we have been given from both those that are far and near. It makes all the difference to know that we aren't in it alone. Of course we are never alone. Our Lord is always near and that is the ultimate comfort, but it is nice to have physical help too! May the Lord continue to give the doctors guidance, the nurses skill and Aubrey healing.
Her chest x-ray (he added that one at 7am today) came back as well. He brought me printed copies of all her x-rays and that was really cool! Anyway, the hazy appearance and streaking that he saw on Tuesday and Thursday and now Saturday appear to be moving, meaning that the "goop" in her lungs is just that..."goop" and moving (hopefully on the way out:)
Her blood work came back looking good. We are still waiting on some other tests that will determine what kind of virus she might have or if it is the flu or just the common cold. That's right...it could be just a cold.
Something new that he told us (and I am trying to remember exactly what he said) is that children with Down syndrome have 30% less air sacs in thier lungs. So when she gets sick, she has less reserve to compensate for all the goop and mucus that settle in her lungs.
So what we do know about her is that she has some "goop" in her lungs. (yes, that was his word:) Our goal is to get it out. So he is changing up her respiratory therapy to include de-mucousing her! It is not a lot of fun for anyone, but it seems to be working. We started this new treatment and she seems much better this afternoon.
We talked about her oxygen intake being all over the board and settled on this: Whenever she gets upset and has a "procedure" done and is screaming and yelling, her oxygen needs go up for quite a while afterwards. (She was at 3 yesterday afternoon and .5 this morning after a quiet night of sleep and few procedures). When she gets upset, she is moving the mucus around and clogging more/different areas in her lungs. Our goal is to try and stay calm! (I wanted to say, yeah right!)
So we are 1) degooping 2) staying calm and rested 3) staying on top of oxygen needs. All of this should translate to a steady oxygen level and we will go to weaning from there.
We talked about her future in the cold and flu season (I did not ask about her long term needs, but will tomorrow as we begin to know more). We will develope a good lung maintenance plan and at the first sign of trouble we will see Dr. Rembecki. I probably waited too long and the goop got so far out of hand that we ended up here. That doesn't mean that we will never end up in the hospital again, but her chances would be better. He also suggested that we go "into hiding" again, to help keep her from getting sick. She has been so blessed with health, that it is easy to forget that we need to be hypervigilant with germs.
Today is going much better and we are thankful. Thank you all, for your continued prayers and well wishes. We are blessed to have all of you in her life and keeping us strong.
Friday, December 11, 2009
Aubrey wasn't sure what to make of her new bars.
Last night, you will recall we had her at .2 liters of oxygen. We did take her off it for a bit, but she couldn't stay above 90 and they felt that she needed to be on it. Over night, she actually went up on her intake to .7 liters. They didn't suction her nose all night, likely leading to the problem. Her iv came out last night. They were only keeping a low fluid on it, so keep it "alive" in case they needed it and to administer meds, so now her meds are all oral (not fun for me:( And if they need an iv again, they will have to stick her again.
Today, we had to keep her there and wondered what was going on. Very reminiscent of our time in the hospital last January, where her lungs took us up and down daily and we never knew what we would be doing. Her pulminologist (now Rembecki, because he is on call this weekend, but a partner of Walter) came around lunch and we had a lengthy conversation about her hospital/lung history and in the end came up with a new plan.
They are going to change her respiratory therapy. They are going to do two different nebulizer treatments, alternating every two hours for 3 treatments and then every three hours. She is also getting 2 different nose sprays.
They did and ekg and an echo that they sent over to Aubrey's cardiologist to compare with the ones that were just done in October. They want to rule out any heart involvement. They also sent some lung "goop" and nose "goop" to the lab for a look under the microscope. In the morning they will repeat some blood work and redo the RSV and flu tests.
He also ordered acidophiles to be put into her food twice a day to help her fight any infection she might have and then ordered diaper cream to be used. If any test comes back where they put her on antibiotics, she will likely get diarhea and he wanted to start protecting her tush now! (can you tell he has 5 kids--always thinking ahead)
I get the feeling that they are really puzzled that she isn't running a fever. Anyway, all the testing and changes today, made for very short naps or no naps and she spent so much time screaming and crying (those of you who know her wouldn't have known she could do that:) that she just passed out from exhaustion at 9pm. I am hoping that she will sleep through most everything tonight, since she has been, but she is not too happy with anyone coming near her and I have a feeling that if they wake her up, she will have a fit.
We are hanging in there, but are planning on being here for awhile. She is on 2 liters of oxygen right now. We aren't even thinking of weaning, just wanting to find answers for what is going on. Dr. Rembecki has theories, and is hoping to confirm them.
Thursday, December 10, 2009
She was on 2 liters of oxygen yesterday, but we got her down to .2 overnight. We were hoping to get her off of it today and then have a monitored (no oxygen)night to be able to go home tomorrow. However, we have been unsuccessful in our attempts to get her off and she has required a little more while sleeping. So we will continued to try and wean her.
She has been moved to a different room, just down the hall. She has a new pulse oxy monitor that is soooooooooooo sensative to her movements that she is all over the board and hard to have a good read, meaning that it keeps beeping because it thinks her stats are dropping. So that will be a little frustrating tonight. It is also not hooked up to the nursing station, so anytime she dips and needs adjusting, I will have to call to the nurses to come down. I am hoping to work some magic today and get her off the oxygen tonight.
"Super Dad" has been holding down the fort at home with the girls and stopped by today, so I could go home for a bit and take a shower. He is awsome and I am so thankful to have such a good hubby to take care of my other girls.
Kate is now running a fever and Alice and Ella are under the weather as well, so we are all looking forward to a restful weekend of healing.
We will let you know as we know more...
Thank you for your continued prayers. Pray for her to continue gaining "lung strength" so that she can be taken off the oxygen and head home.
Wednesday, December 9, 2009
Wanted to thank everyone out there that has used the "Baby Legs". After so many sightings, I got Aubrey a pair for Christmas, grabbed them from under the tree yesterday and have been using them here. They are such a blessing. I just slipped them on over her iv and her pulse ox and haven't had to worry a bit about her messing with anything and they are keeping her legs warm, but allowing everyone to do their job and get at what they need. Thank you, thank you, thank you.
Tuesday, December 8, 2009
So he said it was time for her to head to the hospital...
We are at Presbyterian Hospital of Plano (or Texas Health Resourses of Plano). We will be here at the least until Thursday. She is on oxygen and an iv of steroids. They did a chest xray and think that she has either "bronchitis" or "walking pneumonia". Course of treatment is the same for both. Doctor Walter will be in tomorrow morning and may have some additional information for us. Woody was here this afternoon when all the results came in. I just got back and she is resting peacefully.
Please pray that she heals quickly and that we remain patient with her and our other children. It is such a busy time of year and maybe this is God's way of saying, "Slow down and remember what is MOST important." Everything else will wait, but her health is most important right now and so we will focus back on the family and put our faith in God as the ultimate healer.
Thanks to Christy for babysitting today in a pinch:) I was so glad to not have to juggle three kids at the hospital.
I will update you as we know more. Woody is home with the big girls and I will remain at the hospital tonight. It brings back a lot of memories for us, but I feel like we are a little more calm now, since it isn't surgery and we know what all the numbers and beeps are for. But it will be more challenging since there are no grandmas or aunt here and Aubrey is likely better at pulling out ivs 10 months later:)
Saturday, December 5, 2009
We did get pictures with the less popular "Frosty" and "Rudolph".
And Ebenezer Scrooge
They actually shut down the entire square to cars and had local merchants set up outside handing out tattoos and candy canes and drink coozies and stuff. So the girls had a bag full of stuff at the end.
We waited in line for the balloon artist. It took like 20 minutes for him to make 5 things because he was making really hard penguins and such. People were leaving the line it was taking so long. I tried to talk the girls into easy ones, so we could get going. Did I mention it was SOOOOOOOO COLD! And Aubrey, who had been sleeping in the stroller/carseat, was now awake and not happy that she was tucked away in the stroller. ( I forgot her hat and mittens, so not dressed to be out on such a night). So I asked the guy for "easy" choices. Ella picked a 30 second sword. Kate picked a 3 minute lady bug! Oh well. Alice really wanted the 5 minute penguin and decided to go without since she couldn't have what she wanted!
We didn't even stay for the tree lighting since we were all so cold! We high tailed it home for some hot chocolate (always served with marshmallows) and some dinner. I'm sure that every chance we get in the next few weeks we will drive by and see the light/music display and their eyes will light up over the beauty of it all. I love this time of year, when simple, twinkling lights, make them all so happy:) Even Aubrey really seemed to enjoy the lights.
Friday, December 4, 2009
After you are done "being brave", you get to pick out something from "The Tooth Box". Aubrey loved standing by that thing. Ella picked a ring that says "I LOVE MY DENTIST", but she told Aubrey she couldn't pick anything until she got some teeth to be counted and cleaned!
Wednesday, December 2, 2009
Ella had just come down and I said, "Ella, look outside. " "Mommy, what is it?" "You know what that is!" "SNOW!" She could hardly believe it either. "Mommy, it is so beautiful and soft and fluffy!"
"Wait a minute...you mean I gotta wear this big ol' sweatshirt and slippers all day! And when we go outside, I gotta wear a hat and mittens! I DON'T LIKE THE SNOW!"
It sure does help get us in the mood for Christmas though. By lunch now the snow has turned back into rain and is all melted, but it was a Winter Wonderland here in Dallas this morning:)