Monday, March 10, 2008

A Whole Lot of DRAMA

It has been one CRAZY month!! Don't feel like any of you have to read it all. I just was getting things all jumbled together, so I had to write everything down. Here's the breakdown of all that transpired:

Feb. 1-3: Pax and I flew down to AZ for my Grandpa's 80th Birthday party. We had fun seeing a ton of family, and I left Paxton with my mom to handle for the next 2 weeks so I could get packed.

Feb. 7: Justin's 29th Birthday! Kaybri had doctor appointments, so Justin took the day off and after we went to her appt. we dropped Kaybri off at his parents and we got to go to dinner and a movie. Fun!

Feb. 10: Kaybri's 3rd Birthday! We celebrated birthdays before Paxton left, but I did keep a couple of gifts out for her to open on her birthday. We had a fun day relaxing and doing whatever Kaybri wanted. (Really what we do everyday!)

Feb. 13: Load up the u-haul. It started snowing, and never stopped! The few inches that were predicted for Tooele turned into about 2 Feet!!! I'm pretty sure we picked the worst days to move!! We left that night to go to Justin's parents in Pleasant Grove and stay the night with them, since our house was totally empty. It was a scary drive, but we were totally blessed and all made it safely to their house. There were a lot of wrecks on the way and tons of people pulled off on the side of the road. We were listening to the radio on the way and they just kept saying if you are on the roads to get off and go stay in a motel or find a friend to stay with. Roads were closed and it was taking people 4-6 hours to get from Salt Lake to Lehi/Eagle Mountain areas. I can not believe how lucky we were because it probably only took us an 1 1/2 hour. The next morning on the news it said I-80 was closed for big vehicles, so we totally would've been stuck in Tooele if we didn't leave that night. Tooele schools were also closed for the only the 2nd time in 40 years! Craziness!!

Feb. 14: We spent a very romantic valentines day by driving. :) The storm we had in Utah followed us to Flagstaff, and we had a lot more very tense, 'are we going to die?' situations.

Feb. 15: We made it to Thatcher! Hallelujah! Our plan was to stay with Cory and Dawn while we got the apartment in order.

Feb. 16: Boys unloaded the u-haul. We were pleasantly surprised with our little boy! We didn't think we would get him for a couple more days, but my mom, dad, and grandma brought him early! It was so hard/weird to not see him for 2 weeks. We missed him so much! He looked bigger/fatter! He must of hit a growth spurt, because he was popping out of his shirts and his pants are too short. That night Paxton started getting sick. He had a fever, a runny nose, a cough, and he walked around sounding like a wheezing old man. The next few nights we didn't get much sleep, but by Wednesday (the 20th) he was doing a little bit better.

Feb. 19-20: Justin was in Phoenix for training.

Feb. 21: Justin's 1st day at his job in Safford. Kaybri got in our bed early in the morning and she was getting sick with whatever Paxton had. I thought 'oh well, good thing I scheduled a doctor appointment for Pax today; I'll just get Kaybri checked too', but that is when the real drama of our life began. Kaybri started having a seizure a little after 4 a.m. We had to give her some medicine to stop it. It helped slow her seizure down, but didn't stop it, so after 15 minutes we started getting ready to go to the ER. I called my sister to come over and stay with Paxton (Dawn and Cory had left on Wednesday to go to Phoenix). Right before we got in the car, Kaybri vomited and then it looked like her seizure kind of stopped. We got to the hospital and decided her seizure stopped (25 min seizure), and since we have done the ER thing many times and all they really try to do is stop the seizure and then after that poke and monitor her, we decided to go back and let her get some more sleep and then take her to the doctor in the morning. Well, I was still pretty worried because she didn't come out of the seizure like she normally does. She usually takes a deep breath or cries or something, but she didn't do anything. She was sleeping, but kept holding her breath off and on and having little twitches. By about 9 a.m. I tried to wake her up and she opened her eyes and looked at me, and then her eyes rolled to the side and her tongue started to click. I could tell she was starting to have a seizure and then it looked like she went back to sleep. I tried to wake her up again and the same thing happened. This happened a 3rd time, and then I called Justin to tell him we needed to go to the ER. Who knows if she had been going in and out of seizures since the first one at 4. We arrived at the ER and she was having seizures pretty much non-stop for about 45 minutes. Although the ER staff were very nice, I don't know if they were very sure what to do. Any other time we have gone to the ER they are trying to get the seizure stopped as quickly as possible to prevent brain damage, and they were asking me questions like "So, is this pretty typical how she usually looks after a seizure?"
Me: "well no, you see she is having a seizure right now, STILL!"
And then the question, "What do you they usually do for her when you take her to the ER?"
Me: "Well, they give her Ativan? through an IV and that usually stops the seizure."
Doc.: "ok, well I'm going to call up to Phoenix and talk to some of my team mates to see what they say."

Kaybri was still not breathing good and her oxygen kept getting down to 60 (normal is between 92-100). Doctor comes back and says I think we'll give her some Ativan. They give it to her, and her seizure instantly stops. I was just thinking, think we could've given it to her 30 minutes ago and stopped this whole thing. I kept my cool though and stayed calm during the whole ordeal, amazingly. I was frustrated, but they were nice and were trying at least; you can't expect people to know everything, right?

Kaybri was now totally knocked out and sleeping and breathing good. She had about 104 degree fever, her test for RSV came back negative, but her chest x-ray showed pneumonia. So they were trying to get her fever to come down and they started her on antibiotics. They also still wanted to life flight her out to a doctor that could check her out better. They tried Tucson and Phoenix Children's Hospital because they're closer, but due to all the sick kiddos they didn't have any beds available. So we went to St. Josephs Hospital in Phoenix. This actually turned out to be a good thing, because I remember when I was researching where to go for doctors before we moved that St. Josephs looked like a good hospital with good specialists but I was undecided because the Barrow Neurological Institute looked really good too. Well, we fly to the hospital and it turns out that the Barrow is a part of St. Joes! That worked out good, huh!

Anyway, Kaybri was in the PICU from Thursday(21st) to Monday(25th). Since they have more experience working with sick kids, they wanted to do another RSV test. It came back positive, so they then did another chest x-ray and decided she probably didn't have pneumonia, it was just RSV. She was one sick little girl. She could barely open her eyes and she said very, very few words for about a week. We were wondering if there was brain damage from all of the seizures, but they did an EEG and it showed everything to be a little slow but totally normal considering all of the drugs that she was on, her sickness, and she was still recovering from the seizures. They also did a MRI and the doctor said the brain looked really good, but the was a small subdural? hemorrhage (a bleed) on the right side, where they did surgery last October. They thought the bleed was either from a recent fall, or they thought that it was possibly not a bleed but an infection which would require emergency surgery. Well, they kept a really close eye on her to make sure she could move her neck/head around and wasn't too stiff. As of now they think that it is probably just from the surgery and will do a repeat MRI in 4-6 months.

We stayed the rest of the week in Phoenix and came home on Saturday(March 1st). We wanted to stay close to the hospital because she still wasn't back to normal and she also had some follow-up appointments and another MRI scheduled for later in the week (which didn't happen for even longer, complicated reasons). Justin also had training the entire week in Phoenix, which was quite convenient. Oh yeah, he also got sick for the whole week with what Kaybri and Paxton had. And Paxton got picked up by my mom and Joni while we were in Phoenix. Poor guy, we only saw him 4 days out of the month of February. However, I think it was harder on us than on him! It didn't faze him at all.

March 3-11: We get PAX back! yay! Brother and sister were super excited to be reunited! Kaybri started becoming more herself and we had a lot of fun being all together again. We were actually able to move into our apartment and relax for a bit.

March 12-13: Justin had a meeting in Phoenix the next day, and I wanted to go do some shopping so we decided to head up Wednesday evening. We stopped in Globe to grab a bite to eat, and as we were about to leave, Kaybri had a seizure. It was one day short of being 3 weeks since her last one, and we were so grateful for that time to let her body adjust and actually start to be "normal" again. She had been having about 4 seizures a week before this point, so 3 weeks really was incredible. We couldn't get the seizure to stop, so we headed to the ER. It stopped around 45 minutes. We thought she was fine and that she would recover on her own like she usually does. But the ER doctor thought she needed to be seen by specialists, and so the next thing I know they came in and said they have a helicopter outside waiting for us to go to St. Joe's. So yes, Kaybri and I took another ride in the helicopter. It wasn't as scary as the first time, but still nerve wracking. Kaybri did recover fine and they discharged us the next afternoon.

March 20-23: Kaybri had been doing really well, and then she had another seizure while she and I were out shopping. After about 10-15 minutes the drugs I had given her still weren't having an affect on her, so we went to the ER again... This time they got it to stop in about 35 minutes, and she was sleeping pretty good afterwards. We were just waiting on her bloodwork to come back and then they were going to let us go home. Well, her lab came back normal except one number, and it was totally off the charts, so they thought it was a mistake and took some more blood to re-test it. It came back super high again. It was an Alkaline/Phosphate level, and the normal high-range is about 300. With kids its fairly normal to be high, but her level was over 4,000! The test is checking things dealing with bones, liver, and kidneys. There were no more hopes of going back home, the doc wanted us to see her specialists right away. We were life flighted out at 3:30 a.m. to St. Joe's ER because all of the pediatric beds were full.

We got into a normal room later the next day, and they did the usual take some more blood, get an IV in her, and watch her. They also took some x-rays of all of her long bones, etc. The x-rays got read on Sunday and they are 95% sure they look fine (waiting on the expert radiologist to take a look at them). The bloodwork that is supposed to check what areas of the body have ellivated Alkaline/phos levels didn't get done and they had to re-do it on Sunday and it will take a few days to get back. So basically, we still don't really know anything, just that she has a crazy high number that the doctors have no idea what from, a totally different issues than the seizures. They let us go home on Sunday, so we didn't have an Easter bunny at our house. The Easter bunny did come visit Kaybri at the hospital though and he gave her a basket of goodies. She kept calling him "Rabbit". And Paxton got to be spoiled by Aunt JoJo, Uncle Tristan, Grammie, and Papa. What more could a little boy ask for. He loved it!

We are all back at home, healthy, happy, and a little tired. I think I have worked on this post probably 10 times. I always got interrupted and would have to save it for later, and then something major would happen that I would want to include. I hope I am not depressing anyone by telling all of our hospital visits. Justin said I shouldn't write everything (which I couldn't) because it makes it sound like we have it really bad. And we totally don't. Through all of these trials there have been tremendous blessings and a lot of learning.

Oh, yeah...The House Situation: Feb. 29th our house was finally listed. We were waiting on things to get fixed. We had a super, super horrible wind storm come through in January. We had winds around 100 mph, and as you can imagine it did some damage. We had a window broken, holes in the siding of the house, and lots of shingles blown off. With the help of insurance we were able to replace an entire side of our house's siding, get the window replaced, and a put a brand new roof on. Within a week we had accepted an offer and it was under contract. We were incredibly surprised and excited, but a few days later it fell through because of their credit. So, it is back on the market! We are currently living in a pretty small apartment that Justin's parents own. 2 bedrooms, a kitchen and a bathroom. It's an adjustment, but we're grateful that it's available and it has helped us out a bunch.