Not too much to report...

Just thought I'd give an update before I get some sleep...

Boy am I grateful to my family!! My sis Renee stopped in to see Mia before she and I headed to get some drinks from Starbucks and heading to my place to start packing. Sigh... Iced chai tea latte was a great pick me up!!

Soon after we began to pack, my brother came to help, as well as bringing a delicious dinner my sis in law made. Mmmmm... It was so good!! Thank you, Jen!! My mom also came, too, so between the 4 of us (mostly them) majority of the kitchen got packed! The kitchen is the most time consuming of the packing experience, too, so great progress was made tonight! My brother also packed up my DVDs ... Yeah, I didn't realize I had that many. Haha I never knew I had a 'sickness'! lol I'm sure I'll eventually part with some, but... :) I don't even have TIME to watch movies anyway, but oh well. Packed they got! Thanks, Beau. :)

Robert stayed with Mia at the PICU until around 8:00, then picked up Mercedes who was with Auntie Jen and her three Cortez cousins, I'm sure having a blast. :)

I just called the nurse and she says Mia is doing really well and they just lowered her oxygen to 35%, so that's good. She also said that Mia is very much aware that something is on her head and she keeps grabbing at it. The nurse said that Mia is just too cute, and she is definitely right!!

So far no seizure activity. It's hard, though, because she's not in her usual surroundings (CRC is much more active... she's not having to be mad about sitting in her wheelchair... etc...) so I'm actually not surprised that Mia has been calm. :)

Keep praying!

Oh, and there was a misunderstanding.... The Pod unit gets delivered Friday, not tomorrow, so we have an extra day to pack. Whew!!! :)

Goodnight. :)

**CONGRATULATIONS PHILLIP PHILLIPS!! :) He has been a favorite since his audition! He and Colton are great! :)

Okay... enough American Idol .... until next January!**

Timing is everything....

I was in the process of writing a blog yesterday morning and things just got so chaotic with Mia; packing; picking up and dropping off furniture; running errands, etc... and I never got around to posting it.

When Cedes and I had just gotten to school, I checked to see what time it was (to see how many minutes she had to play before the bell rang) and noticed I had a missed call from the CRC charge nurse. Instead of listening to the voice mail, I just called her back and got the info... long story short, Mia still wasn't herself and it looked like she was having a seizure, so they called the doctor and he ordered Ativan (antianxiety med) and she calmed down... but she still wasn't herself. We kept her from school and she mostly stayed in bed.

After the crazy day was winding down, I stopped by to be with her for a little bit before going home to finally pack and she looked really good. She was giving me lots of kisses and playing peek a boo with me. It was fun to see her having fun again. :)

Today, she still wasn't quite herself, but seemed well enough to go to school, so I wheeled her down the hall, grabbed her laundry, ran an errand, started 3 loads of laundry, made myself a very yummy breakfast, then began packing. Finally. The Pod unit is coming tomorrow so we can load up everything to be picked up on Friday, so today was my Packing Day! It had to be ... it's the only option.

I got one box packed when the timer went off ... time to put the clothes in the dryer! As soon as I walk back in the apartment, my phone rings and I figured it was a CRC number, though it wasn't in my contacts list. I answer and it's Dr. Silva. He's never called me himself before. I was definitely caught by surprise, so I didn't even have time to guess what the call was about. He felt, since Mia was still acting a little strangely, a 24 hour EEG would be beneficial and wanted to know if he had my permission to do that. I completely agreed, only my thought was 'Seriously??? Today??? Right now??' With my permission granted, they were going to set up transport from CRC to the Good Samaritan PICU to do the test. I called Robert to let him know what was going on and asking if he could please come home in time to pick up Mercedes from school. He said he would do that (and also get the clothes from the dryers!). Then I let my mom know what was going on... at that point I was almost on the verge of tears because I was so stressed out because I have sooo much to do and get done, but I obviously need to be with Mia during this time! My sweet mother told me to tell Robert not to worry about Cedes that she will pick her up and keep her until evening. What a huge help!

Within a half hour of Dr. Silva's call, AMR was at CRC to transport Mia to Good Sam and now we're in the PICU. One of our favorite PICU nurses is working today, so that's extra nice! She's gotten blood draws, she's all hooked up to the EEG (she looks like a cross of Lazarus and Rapunzel. Haha) She is also getting another chest xray as I text...

Keep praying for us and Mia.  We are supposed to be all packed up by tomorrow and the apartment only looks like a tornado has hit it. My brother and sister will be helping me pack in a few hours while Robert stays with Mia.

I hope some answers come back.... it is so hard not being able to understand how Mia is communicating to us.

Trusting God,
Rachael

Mia's doing better!

As you can see in the picture, Mia is out of her bed and watching the Winnie The Pooh movie on her ipad. :)

She is wide awake now and doing a lot better. The trach must have been the problem. Because it was slightly turned, it was most likely 'digging' in on the side and even blocking the airway a bit which would make her co2 high. Now she's back to her usual half a liter satting a little low (93%) but she's doing alright.

Her RT Gary was able to lower some vent settings and that's always good! Co2 is now 38.

Whew. So glad they did the xray!

Rough weekend for Mia

Since Tuesday or so, Mia had been having high heart rates periodically for a few days so I figured she was on the verge of getting sick ... but there were no other changes which was strange to me.

It finally happened on Thursday evening that she was starting to not do well. You could hear the junk in her lungs, but it was too deep to suction up through the trach. She ended up getting a PRN albuterol breathing treatment to open her up and that seemed to work. Her breathing got deeper which is always good.

Friday morning, Robert had left home with enough time to spare, so he decided to drop in to see how Mia was doing. Unfortunately, she had a rough night and needed to get maxed out on her ventilator settings order to keep her stable. Her co2 got as high as 69 and she was requiring more oxygen. I told the morning nurse to please keep her resting and not to send her to school or group activities for the day since she had a hard night. I'm the Mom, so she had to listen to me. :)

Mia's respiratory therapist for the day was Jan, and she worked with Mia non stop trying to get her stable. Mia was, no kidding, like a fountain. Secretions were just flowing out of her nose and mouth and she was requiring very frequent suctioning to her trach. Finally around 5pm, Mia was pretty stable - still maxed out on the vent settings and needing 2 liters of oxygen. (She normally only needs half a liter.) They got a urine sample to check for another UTI, and thankfully that was clear.

Yesterday, she was OK, not terrible but not good enither. Her co2 was stable - in the 30's where it should be, but she was still needing lots of trach suctioning. Something that is unusual for Mia.

I got a call this morning from the noc nurse Tony saying that around midnight her co2 was in the 60s and her heart rate was high so they gave another PRN albuterol treatment and also Tylenol, but through the night she was still needing lots of attention. Around 8:45am i got a call from the charge nurse saying that at the beginning of the shift, Mia's co2 was in the 60s and had climbed up to the 90s and that the doctor was on his way to look at Mia. Yesterday I had asked if she might need a chest xray, and at the moment, they didn't think she needed one. Today, however, she got the xray and according to the doctor, her lungs look okay, but the trach looked a little twisted. Slightly turned to the side. They did a PRN trach change and now secured the tubing so they stay midline on her chest to keep the trach straight.

I skipped church and am with Mia now instead. They gave her Motrin just before I arrived and her heart rate has decreased from 170 to 133. Still high for her totally asleep, but a lot better. Her co2 is down to the 40s, and she is still maxed out on the vent settings. She's satting 97% on 5 liters of oxygen. Quite a bit (around 41% oxygen) considering she normally only needs 23%.

I'll try to update again... I'm getting better at this! :)

Rachael

My new hobby...

It's been a long time coming and I'm glad I finally told Robert what I'd love to do, so with his encouragement, I started taking some time to start this possible new outlet of The Adami Collection! With our life being so chaotic and as busy as it is, it's been so nice to (when I can manage to find some time) make jewelry and chill. It's so relaxing and really therapeutic for me - which is what I really need!

Robert helped me make my idea for the display case a reality last night. I totally forgot he had his drill with him at the apartment, so that was my lifesaver! :)

Hopefully it'll turn a profit soon (I haven't even advertised, so therefore no sales yet!) :)

Getting ready for our move ...

Mercedes saw that I was making a to-do list on the dry erase board on the fridge, so she erased what I wrote (which was 'pack dvds') and she made her own helpful list. :)

Big changes ...

If anybody still checks the blog, a lot has happened since my last post ... The Happiest Place on Earth! In September, Robert, Mercedes, my parents-in-law, my sister and myself made another trip to Disneyland for my birthday. :) That was so much fun! Mercedes, the little dare devil that she is, went on The Tower of Terror! I had agreed that I would only go on it if Mercedes did, thinking that she wouldn't. Yeah, that backfired on me! Haha It was a fun ride.... once I got used to the idea. :) At my best friend's wedding in mid October Mia a.k.a. Minnie Mouse and Mecedes a.k.a. Figaro for the Halloween Parade at CRC In October I had a major hernia repair. The hernia itself wasn't bad, but the doctor pinned mesh (about the size of a dinner plate) to my abdominal wall. That is the most pain I hope to ever be in again ... thankfully I recovered well (3 months) and it only occasionally hurts, but thank God, I'm okay now! Photographers came to CRC and took family pictures of the patients in November Sitting up with Daddy's help in the hospital crib in the PICU. Feeling so much better already! On Thanksgiving around 4am, I received a call saying Mia wasn't doing well and she was going to be rushed to the PICU, where she stayed for about 5 days. It seemed like it was another UTI she was dealing with, but she wasn't stabilizing on the vent for a day or two. Beautiful Meesters in the PICU, feeling better, after a bath Christmas picture 2011 Mia's first time home on the 4 hour pass 2 days before Christmas! Beautiful sisters In December, I was so sick of being 'stuck' at CRC and I didn't want to spend another family Christmas at the hospital, so I talked with the staff to see what it would take to take Mia home for 4 hour passes. Long story short, Robert and I both finished our training and brought Mia home for the first time (just us and our girls) on December 23rd. :) God granted the desire of my heart and we had our first quiet Christmas at home with Mercedes and Mia. :) We've brought Mia home almost every weekend since then with the exceptions of us being out of town; if it was raining; or if any of us were sick. Mia loves being home! It's so relaxing to be out of the facility. Mia turns her head to line up her lips exactly where mine are - so cute!! I love her kisses. One of my favorite things Mia has started doing is giving and receiving kisses!!! It's so adorable!! Mia is really interacting more. It's so neat to see her play on her iPad. We're so proud of her. :) On January 1st, Robert talked about the possibility of buying a condo next door to CRC, so we worked with a Realtor and there were several options to finally get out of the 1 bedroom 600 sq ft apartment we've been in for 2 years. Next door would have been ideal because we would be able to bring Mia home as often as everyday if we wanted, but it just never worked out. First day at school! Everyone loved the "new girl" Kindergarten field trip to a local farm 2 weeks ago Ever since Mia's hospitalization on Thanksgiving, it threw off our homeschooling schedule with Mercedes and my stress load got ridiculously high. My perfectionist tendencies didn't make things any better. I wanted to do everything myself ... my patience level was very low with Robert and Mercedes so Robert had an idea to talk with the school across the street from us and they happened to have a spot available. Mercedes started her first day of Kindergarten at Farnham Elementary School on January 11th and she's doing so well! She loves Ms. Davis and the class loves Mercedes.  :) My stress level has decreased and it's been nice to be able to spend time with Mia and I can finally be with her when the therapists see her, etc. Papa holding the Birthday Girl - and showing her the balloons Tasting her birthday cake! Mia's teacher - I'm very proud to report that Mia stays awake most of the time at school! In February, Mia celebrated her 3rd birthday at home with friends and family. :) It was a lovely party and she loved it! All the girl cousins got their nails done and they got all dolled up! The Monday following Mia's birthday, she started preschool onsite at CRC. In the mornings, I drop off Cedes at school, then cross the street, go to CRC and finish getting Mia ready, then take Mia to school.  Then I have my time from 8:45-10:15, then I go back to CRC to spend time with Mia. I still don't get everything done that's on my to do list, but I'm so grateful Mercedes is getting school in and I'm able to spend lots of time with Mia. :) Hitting some balls and having fun while at Beale AFB for Spring Break. So nice to get away. About 3 weeks ago, after getting away to Beale AFB for the week during Mercedes' Spring Break and getting much needed rest and family time [side note: our apartment is one bedroom, 600 sq ft. The house on base was 4 bedrooms, 3 bathrooms. Yes, it was VERY nice to not be bumping into each other and getting projects done!], we visited Mia and I don't even remember what happened, I just know I was so anxious and I started getting tears in my eyes and I told Robert "we need to get her outta here!" That's nothing new to him... I've been saying that for about 2 years. His usual response is that we will in about 2 years - when she's around 5 years old. We left to go get dinner at the best Italian restaurant in Campbell - Al Castello's, and Robert shocked me with what he said to me over dinner. With his new job change coming up next week with the Air Force, he will be working at Lockheed Martin in Sunnyvale. He suggested we look for a house a little closer to his work, and bring Mia home.  He also suggested that maybe my parents can move in with us as well. I was stunned. It totally didn't sound like the Robert I've known for 8 years!! We started actively looking for houses but nothing came by near Lockheed. We looked a little more south of San Jose and there were a lot of options in our price range for at least twice the space as you could get in SJ. Long story short, we proposed our idea to my parents and after thinking it over, they agreed, so the search for the perfect layout began. While looking at model homes with out Realtor last weekend, she came across a lovely year old house that suited our needs perfectly. She told us we should really look at it - it had just gone on the market that morning.  The layout was ideal. Two bedrooms and a bathroom for my parents at the front of the house, and the master and 4th bedroom at the back of the house to give us all privacy, and the formal dining room is perfect for Mia's room. Not having doors is great so we can hear alarms and central to the living areas, etc. We all agreed the layout was great, but we wanted to see it one more time.  We went back on Sunday afternoon (not fun for me or Mercedes since I had a scratched eyeball and could barely see anything, and Mercedes was fighting 105.2 fevers due to having influenza b, we found out Monday) We went to our realtor's office Monday afternoon and put in an offer - ours was the second offer on the house. With our offer, we attached a letter explaining Mia's condition and they she's been in the hospital since birth, etc. We included family pictures as well. Tuesday morning we found out that the owners counter offered both offers and ...... we got the house! They are waiting for their new home to be finished being built, so we get the keys August 7th. It gives us about 3 months to get nursing and all the paperwork and insurance stuff figured out to bring Mia home - finally!!! The house is located in they very northern part of Gilroy. :) Our new home in Gilroy, CA We are so grateful and know God is blessing us beyond measure! I never imagined Mia would be coming home this soon!! :) Seems so unreal. :) Keep praying for us. It's going to be a lot of work getting everything ready, etc. We're not sure what we'll be doing as far as a wheel chair accessible vehicle... God will open the door for that I'm sure. We do need to move out of the apartment by June 1st when our lease is up, so we need to stay somewhere for the 2 months. We may be able to stay with my parents, but but my sisters dog doesn't quite like cats ... :) Lots of unknowns still! We're trusting God... He's faithful! :) That's what has been going on with us. :) Hope you're well! Blessed, Rachael