Another Step

What started as a simple cough for Squeaker turned into wheezing. Not uncommon for her. I just started adding albuterol to her morning treatment. It kept the wheezing at bay and Squeaker seemed to be getting better. Then on February 8th Squeaker had oral surgery.

Trey and Squeaker cuddling after surgery

Surgery went fine, she had her two top front teeth removed due to decay. 18 months (she got teeth at 6 months) of antibiotics, breathing treatments and overnight drinking caused some serious tooth problems. But after 1hr and 10 minutes Squeaker had two teeth pulled, about 4 fillings put in, a full cleaning, and teeth sealed. She was a trooper and did great. The anesthesiologist noticed excess mucus in Squeaker's nose and throat. He warned me she could be getting a cold.

Guess what showed up the next day? That's right a cold! By Monday breathing for Squeaker was not the easiest. Call the Pulmonologist and they started her on oral steroids and a high dose antibiotic. Today we had to go to down to Birmingham to see the Pulmonolgist because Squeaker wasn't getting better.

The appointment was good and bad. Lets go good first
Good- Oxygen levels fine, Temperature fine, Squeaker is a little taller (34 inches), and it's just a cold. We just have to stick to it and she'll be fine.
Bad- It's never fun to just wait out a virus, Squeaker caught a very tough cold while taking a prophylactic antibiotic, and lastly she has lost nearly a pound in the last week. At the time of surgery Squeaker was 24lbs in just her pjs. Today she is down to 23lbs 3oz. Ouch

What does this all mean?? In a couple weeks we start IgA therapy. (please note the price listed on the website is not our out of pocket cost) In basic terms they take human plasma, separate several parts, sterilize it and put it in an IV bag. Then it is infused into my little girl to help boost and fill in the holes of her immune system. Hopefully this will stop her from getting so sick. If your body isn't overdrive maybe she can keep and put on some weight.

So another step into working to get our little girl healthy for the long term.

pH Probe

This is an old copy for some new friends to see. 

Looking back it is almost surreal. I hardly know what happened when; if it wasn’t for the record keeping I’d probably be clueless. But I’m getting ahead of myself.

walking around at night

Monday we drove down to Birmingham, it was a nice sunny day. After admission and check in we were ready for the pH probe. Anyone who knows Squeaker, should know she HATES medical professionals. I swear she can smell it in people. And then they whip out a stethoscope oh by golly you have a screaming baby. By the time we got up to the GI Lab Squeaker was already pretty upset. First she had to have arm braces put on that kept her from bending her elbows to get to her face. Next she was strapped down to the table. As much as she kicks and screams I would rather have her strapped down than try to hold her. The probe was then fed through her nose and down her esophagus stopping right above the sphincter. A quick x-ray to verify position, and an adjustment of the probe it was securely taped down. The test had begun. The short lived upside was Squeaker could now eat. It had been nearly 4 hours.
It was a short lived upside because of the arm braces. Squeaker could not hold her bottle; it was too short for her to get at. And of course being the stubborn child she is me feeding her was out of the question. So during the 45 minutes that she was allowed to eat Squeaker managed a mere 1.5oz of milk. Yes I said 45 minutes allowed to eat. That precious 45 minutes would only come every four hours until the test was done. And those would be the only time she could eat or drink.  As if having a tube down your nose isn’t tough enough, arm braces and eating restrictions are now in the mix. Poor baby.
Oh and then there was the record keeping. I had to track when every eating time started and ended. Also what time she was sitting/standing up while she was awake, laying down while awake (all clothing and diaper changes), and the same ideas for sleeping, what time she would burp, cough, vomit or have pain. If the paperwork was not with you it can be very hard to remember when things happened.
In between eating times we’d go for walks in the main lobby. There was people playing Christmas music most of the day, wonderful decorations. And of course the stairs, the nice long stair case that was about three stories high. That was a lot of fun to watch Squeaker go up and down them. Remember she couldn’t bend her arms. So it was something to see.  She would get tired after about 30-45 minutes of play. So we head up to our room.
Even though we were on the fourth floor our windows looked at the tops of other buildings. But with a TV/DVD combo Veggie Tales were easy to fill in the time gaps. It also gave time for mommy cuddles too. During meal times we could take of one arm brace to let her eat but we had to watch like hawks to make sure that the probe didn’t get pulled at.

I swear the pack weighed as much as she did.

The overnight… well that just stunk. Squeaker is used to getting bottles to go to sleep and when she stirs in pain we would give her a bottle to help soothe her. If you had reflux in the middle of the night wouldn’t you want something to drink?? But I couldn’t give her anything. So we walked….walked… and we sang as we walked… and walked (anyone get the random reference?).  In total I spent around 3 and 3.5 hours walking the halls of the hospital keeping Squeaker calm and sleeping as much as possible. Finally around 5:30 is when I laid down to sleep, with Squeaker propped up in my arms. I woke up around 8 and Squeaker woke up about 8:30 am, Squeaker was done!!!! She was hungry, tired, sore, and probably angry. She screamed and cried until it was time to eat at 9:30. Once she got her milk she was happier. Then eggs, cherrios, and strawberries were gobbled up. In the middle of breakfast we got a call from the lab. They had someone coming in for a test at 11am. It would take over two hours. So they had decided that they were going to come early to take the probe out. YAY!!!!!!!!!!!!!!!!!!!!!
Probe was out and we were discharged by 11am.
Dr. King (the Gastroenterologist) did stop by a couple of times. And unless for some odd reason Rayne’s test comes back with a perfectly neutral pH level of 7 he will be sending her in for surgery since we don’t have another other medical options. But this test lets us know what to expect of the surgery. If Squeaker’s levels are BELOW 4 (highly acidic) a lot of the time then surgery will be a practical cure. If she is in the 4-5 Surgery is still call for but we can only expect it to be say 80% effective. So she may need mild meds to help out. But either way it would be a great improvement from the current situation.
The other reason for the test is for the surgeon. Dr. King believes that surgery (especially this one) is more of an art than a procedure. So he only likes to use the best available, who requires this test. In the long run I’d rather suffer for a day and get the best then just take any ‘just let me cut’ doctor.
Having mom there was awesome. A complete life saver, I didn’t have a clue what to expect this time around so she helped me figure out where everything was and who we needed to ask for certain things.  So during surgery if I’m there by myself well I’ll know what to do. She was there to let me know I could do this oh and she put up with me snapping at her when I was just past exhausted.
During our stay as hard as it was I felt so blessed the entire time. At check in the girl in front of me was 17 and battling Cystic Fibrosis. In our wing there was a little girl 7 years old that was brought down that day in near critical condition with Juvenile Diabetes. She also had a 5 week old little brother that had the flu. That poor mom was having a very hard day. Then of course the next wing over was for restricted access cancer patients. Sure life can be hard with Squeaker but boy are we blessed. She is such a wonderful little girl with a great spirit and attitude. Heavenly Father has entrusted me with His daughter and I have to treat her like the princess that she is.

Update: Rayne passed and did not need surgery a scope showed another issue entirely. 

Food Storage to the Rescue

So the last couple days have proved the importance of food storage to me. As a Mormon I was raised with food storage and taught the benefits of always having a little extra on hand. Even in AmeriCorps where all my meals were provided my roommate and I kept a few snacks, microwave meals, and drinks in our room. So of course the older and more space I've had the more food storage I've tried to keep.

A few months back while trying to buy the high calorie snacks for Squeaker I started really getting into couponing. Squeaker really preferred the name brand items and would eat more of them. So with coupons and sales I was able to keep the foods she liked in the house. Once I got a handle on it I started saving 30%-50% on our grocery bill. So I started putting money into our food storage building.  We acquired a couple of shelving units from Lowes. Then we spray painted them some wonderfully bright colors since I don't have a closet or basement to hid them in. Once they were painted, and built I filled them with food.

This picture is actually a few months old but it gives you an idea of how much you can store on these shelves. Recently I've even put more food on there. I would take a new picture but today one shelf and it's contents were moved to the new house. I also have a small freezer as part of our food storage system. It's a major part of what I can store. I can store meat, pizza, frozen juice. All sorts of fun things.

Now how it has saved us recently. Firstly was yesterday our water was unexpectedly shut off. Our complex didn't realize our building was on the water line that was being fixed so they we didn't get a notice. Because we had food storage and water storage we did just fine. Plenty of food that didn't need water and what we did need water for we had a about 4 gallons on hand. So no water from 9-4 was not a big deal.

Then today hit. ACK!!!! There was a mess up in payroll and our gross pay was a little less than half. So once you took out taxes, insurance, FSA, and other things we ended up with one tenth of our normal take home deposited into our account. Someone made a big boo boo, but even by notifying them today it will be next week at the earliest before we get the rest of our check. But guess what I don't have to buy food. :) YAY!!!

What about milk you ask? Well we had 1/2 a gallon of whole milk (that what we drink). And no that won't last a week. So I took my Dry Nonfat Milk and reconstituted half a gallon and mixed it with my whole milk. Now it's like 2% milk WAHOO! Much better than skim in my opinion. Then when that runs out I'll make more Nonfat Milk and add the Half and Half I keep on hand for ice cream making. So I have enough to make nearly two gallons on milk.

I have pizza already in the freezer for pizza night, everything I need for my fabulous tuna casserole, and Lasagna. Plus I have salmon, chicken, ground beef, hamburger helpers, other skillet meals. Lots of pasta, soup, mac and cheese and hot dogs. Oh and lets not forget frozen/canned veggies and fruits. I will need eggs and bread soon but there is a store in town where I can get each of those items for about $1 each. I have a few dollars in change just for situations like this.

So with a little planning and keeping things on hand that we eat I don't have to worry about food. Bills maybe late but my family wont starve and in the grand scheme of things that's far more important.

Dinner Tonight

Burger Sandwiches and Homemade French Fries

Burger Sandwich

--Sandwich Bread

--Burger Patti

--Tomatoes

--Letucce

--Mayonaise

--Cheese

Honestly it's just a burger how ever you want it on regular sandwich bread. Here are my reasons for choosing sandwich bread. 1) I had it on hand. 2) They are not as tall so it's easier for little hands to hold 3) Cheaper.

Homemade French Fries

--Potatoes

--Aluminum Foil

--Cooking Spray

--Baking Sheet

--Salt and Pepper

Preheat oven to 350 F

Wash your potatoes, peal if desired (I don't). Then cut the potatoes in the desired shape. I use the Pampered Chef Fry Cutter. In my opinion if you use it more than once it is well worth the price. 

On your baking sheet lay down the aluminum foil and spray with cooking spray. You don't have to use the foil it just makes for a much easier clean up. Once your baking sheet is ready to go place your potato slices on in a single layer. Lightly salt and pepper. Put baking sheet in preheated oven. Set timer for 10 minutes. After 10 minutes increase heat to 450, turn fries, and bake another 10 minutes. 

The same process works for sweet potatoes to make sweet potato fries, which are yummy with cinnamon instead of salt and pepper.