Happy New Year

A happy and healthy new year to everyone!

This is my favorite part of the day and a good look for the new year. I love these days when Aubrey gets a morning bath and she is all clean and fresh. No crusty or sticky anything, neatly combed hair, no sticky tabs or tab residue on her face or legs and NO CORDS. Warm fuzzy jammies and all day to play! It is a good thing! (And then we hook her up again:( And we hope that this will be what we see mostly in 2010! It is the blank slate of a new year, a fresh start.

We are still working on healthy...Aubrey's fever finally broke last night, so we have avoided the call to Dr. Rembecki's today at least and further testing. She is still pretty under the weather, but at least with the fever gone, she has a little more energy and is eating a bit more.
Kate and Alice got to stay up last night to ring in the new year (at 11:00--we watch it in New York). They crafted for a couple hours, thank you Auntie Sarah and Uncle Buddy, Livy, Carley and Lucas, for all the crafting supplies! After which they cozied up together in the Lazy Boy to listen to the bands play and then the ball drop. They were a little disappointed that what they saw was it!
We are enjoying a relaxing jammie day and working on the 750 piece puzzle that Kate got from my Dad. We are thankful that Aubrey is not into crawling yet, so that we can leave it out on our coffee table until it is done.
One last relaxing day of vacation before the rat race of school and appointments and errands begin next week!

New Germs:(

So...Aubrey woke up this morning with a fever and a very snotty nose. (I did take a picture, but will spare the world of the giant snot:) It was a good thing we had an appointment, because I would have had to call and try to make one this morning if we hadn't.

So the good new is that her lungs sounded better today than last week, so we will wait on a chest x-ray. But her cultures from last week show a bacterial infection, so she is fighting something new now which is probably why she has stalled a bit on getting rid of the oxygen and really bouncing back. They did a repeat flu and rsv test, both were negative, and then did some other "snot swab" tests and we will see if those reveal anything new.

So he put her on antibiotics and upped her nebulizer treatments to 5x a day again. If her fever is not gone by Friday, we are to call the office and they will consider another x-ray and possibly a bronchyoscope, a camera procedure. My understanding is that most of the time the germs in your nose are the same as those in your lungs...but not always. Since all of her nose cultures have come back negative, they would need to take a look at her lungs to see what is going on there that they can't figure out.

Woody basically sanitized her entire room right down to cleaning the carpet and wiping down the bars on her crib and dresser. A slight cough for us is such a new germ for her, that it just takes over in her. So we just have to try and keep all possible germs away until she can get on top of this thing. I am hoping that things will be better once the big girls go back to school next week and she can just kick this thing. Keeping Ella's grubby hands off Aubrey is much easier than keeping three sets of hands off of her! We are really gonna buckle down this week though and get her over it, I hope. I would rather her live in a bubble (her clean room) for a weekend, than drag this out any longer.

We will keep you posted.

Doctors Visits

First things first...cute Christmas picture...then the update:)

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.

Aubrey went to her 15 month "well child" visit yesterday. She is officially 14lbs 15oz and 26.5inches long. She is following her curve and is proportional, which are the most important things:) We talked about her recent "medical history" and gave the nurse her new list of meds. But it always feels like there isn't much else to say, but keep plugging along and do what you are doing. She looks good.

We explained the crackling of goop that was still there the week before and he confirmed that there is still some noise there, but he didn't really have a base line of goop to compare it too. So I toyed with calling the pulminologist and then decided to let it go.

She got the second H1N1 shot and we were on our way. With the fourth kid, maybe they think that I still have brain cells and remember what to watch for with the shot or the fact that she already had one and did fine. Whatever it was, they didn't tell me what to watch for and we actually could have used that information...

Oh, and Alice had her ears checked and she has an ear infection! So later that afternoon, Alice and I went to run some errands and pick up her new medicine and came home to a big surprise. Aubrey had slept for 4 hours and woke up screaming and with fever. I panicked!!! And mentally I was packing my bags to go back to the hospital. She was 100.5 (.5 below go back to hospital number we were given on discharge) and her breath was fast and she was just laying on Woody's chest with her eyes just glassed over:(

Woody always keeps his calm though and we got her some applesauce and all her meds (including Tylenol) and nebulizer and got her hooked up for the night. And he called our dear pediatrician at home. I am such a nervous nelly now and I kept checking on her every 10 minutes, but she seemed to rebound after the Tylenol and finally settled down to sleep and was fine the rest of the night. The good doctor called this morning during breakfast to check up on her (did we ever mention how much we appreciate him...well we do...he is one of our biggest blessings!).

This afternoon the Pulminologist called to check on Aubrey (did we ever mention how much we like them too:) and it seems that the x-ray that we took last week...showed now improvement over the one we had taken 7 days earlier, right before leaving the hospital:( She is slowly improving, but I think more than anything, they just want to keep a close eye on her to make sure that she is actually going forward and not stalled out in her healing...so we will go in tomorrow for a check up and will probably go for another x-ray. She is doing much better with her oxygen this week, almost never except when sleeping, and even then she isn't needing much to keep her stats up. We are hopeful that that is a sign of improvement and her lungs will sound better and look better too.

We will let you know what we find out tomorrow. Pray for a healthy new year at our house:) We can cram in a few more things in the next two days, but come Friday, I want all healthy reports:)

Rachel

Updates

So here is an update on how Aubrey is doing, I know it is long, since I am a little behind on posts. We went to see the pulminologist on Tuesday to have a recheck. He just laughed again, because Aubrey doesn't follow the book on anything! He said that he could still hear some "goop" in her right upper and middle lung. 4 days of mucomyst at home should have been enough...sigh...but they weren't. We have moved to a SYMPTOM schedule instead of a DAYS schedule. Meaning we will do the mucomyst nebulizers until she stops coughing during the treatment. He feels that once she is able to get over that part and get all the goop out, she will be able to completely come off of the oxygen. We have successfully been able to wean her during the days, but continue to use it at night (if she keeps it on) and whenever we are away from the house.

We will still have to keep her pretty isolated until she has fully recovered, but will just have to be SUPER GERMAPHOBIC after that. She will keep doing at least two nebulizer treatments through out the season. But mostly it will be just keeping tabs on how she does. We will keep the oxygen for at least two weeks after she is done with it, since she doesn't follow the book and may relapse. We will keep the pulse/oxygen monitor for a couple months, to do frequent checks. It could be that her oxygen levels dropping is her sign that she is sick versus a runny nose or cough. So we will try it, but won't really know until she gets sick again, but hopefully it will enable us to catch her cold earlier and avoid hospital stays. If that is her sign, we will likely keep the machine.

He ordered another chest x-ray, just to keep tabs on her since she is not a "typical-follow the book" patient:) I had wanted to get pictures of this to show you what they do for her. They have this little table with a hole in the bottom and a bicycle seat for her. Then I hold her arms up and they have this plastic "tube" with hinges in the front and back and it goes around her and secures in the back. This keeps her still and positioned just right for a good x-ray. (She doesn't like it too much:) For her, they can actually tell how straight she was because of the ties they used internally during her surgery. It is kind of neat to see her x-rays.

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:)

Here is Aubrey playing with some of her new equipment. The large tan thing is an oxygen compressor. Instead of having tanks, like in January, we have this and it compresses the oxygen in the air to deliver to her. It is pretty cool how it works, but I'm sure when all is said and done, we will need "white noise" in her room, because the machine is not really quiet.

More sleeping flexability.
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.

(as for the other girls: Ella finally got over the fevers on Sunday and we are just treating that nasty infection now, Kate's pinkeye is cleared up...but she gave it to Alice and Aubrey first! So now we just line them up in the morning for the eye drops and antibiotices!) We are hoping for a clean, healthy start to the new year!

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Discharge and Recovery

I know everyone is wondering how we are doing, so here it is...

We found out Tuesday morning that Dr. Rembecki was making arrangements for us to go home. I am glad that I had the good sense to ask that our prescriptions be called in so they would be ready when we left the hospital and we wouldn't have to fool around at the pharmacy:) (I'll get to how wrong I was later)

I had an appointment at 2, so our good friend Christy came to "babysit" again. After my appointment, I tried to pick up the prescriptions, but they only had three of the seven! (Would have been nice of them to call and tell me that in the morning, so that I could have tried to get them someplace else!) So I got what I could and headed back to the hospital. I asked the nurse if she knew where I could get the last couple. She suggested the pharmacy downstairs! Why didn't I think of that! How easy that would have been!

So we checked out of the hospital. Christy was wonderful enough to help me downstairs and waited with crying Aubrey, while I went to the pharmacy to get her stuff. Pharmacy had ONE! And they didn't have the actual presciption, so I waited while she called the doctor to get all the information and then prepare the drug. We were finally on our way out to the car with a stroller full of stuff, crying baby, oxygen tank (at least it has a wheely cart) and two bags of drugs. (we will pick up the final script tomorrow)

It would have been so lovely just to get home, but we had to stop at Dr. Rembecki's office to get her synagis shot (her appointment had been that morning). Unfortunately, the people who give those, leave at 4:00pm (something he failed to mention), but they were gracious enough to let us in and after sitting for 45 minutes (in a sterile room though) we were granted the last shot of the day.

We got home about 6:00 and quick grabbed some dinner before her next treatment at 7:00. We were so unorganized and had to get the big oxygen tank and everything set up still. By 9:30, we were exhausted and went to bed. The last two days have been more of the same. Ella (3) has been running 103-105.8 fevers, so I have been splitting my time between the two of them trying to make everyone happy and meet their needs. Ella having been to see Dr. Dan today is still no better tonight, so will probably be going back to see him tomorrow.

Aubrey's Plan:

We are doing 5 breathing treatments a day, every 4 hours ( he so graciously said that we could skip the 3am one!) We are alternating between two different nebulizer treatments. 3x a day we do xopenex and pulmicort, which is what we had done for maintinence. 2x a day we do a 3% saline solution first and then do a second nebulizer of xopenex and mucomist (it smells like rotten eggs). This one we follow with the Cardio Pulmiary Therapy--CPT, which involves patting on her lungs with a little pink "cup". She is still taking her regular med for the small leakage she still has as well as, a steroid for a couple days, prevacid to keep her tummy from getting upset, 3 different nasal sprays, mylacon drops (because apparently her x-ray shows that she has pretty bad gas or as he put it "a man burp in there", and she is on oxygen... and has a pulse ox monitor...

We are able to wean her of the oxygen as she tolerates it during the day, but are to keep her on it at night until we see him in the office next week. Let me tell you how this is going...She takes it off her nose at night and keeps her stats up just fine. She leaves it on all day long, and can't keep her stats up! She doesn't do anything by the book! Her progress is slow and steady, but she is keeping her numbers higher than she was at the hospital and her stats don't tank when we do her treatments like they used to...slow and steady...patience...We will know more next week about our maintenance plan to keep her healthy and what we need to do at the first signs that she is sick. Her immune system is weak and all indications are that she will have troubles every time she is sick. God has blessed us with a wonderful team of doctors to take care of her at all times and we are gracious for them. We continue to have confidence in their abilities to make good choices and suggestions for her health.

She is happy to be home and so are we. We could do without the equipment, but it will be gone soon enough. We are so thankful once again for all of the continued prayers for strength and health, as well as those who are looking out for our "tummy health":) Meals are certainly not necessary, but sure are appreciated at the end of these long days.

Home:)

Just a quick note, that we were discharged this afternoon and are setting up and getting organized at home. I forgot how much work it is to come home and set everything up again. Will post more tomorrow.

Rachel and Aubrey