Where's Mittens??

Packing up the last of our belongings with the help of my parents. Gotta be out of the apartment today! Mixed emotions...

I have another update to write... if only I had more time!

Rachael

Life is slowing down...

As soon as we got back from our vacation during Mercedes' spring break, life has been non stop... chaos, really. We've been on the go non stop and FINALLY, life is slowing down!!

So far the initial move is going well. The Pod got picked up on Saturday and we will see all of our stuff in Gilroy in early July. We will be moving out of the apartment on Thursday and will move in with my parents and sister for about 5 weeks until we get the keys to the new house.

Mercedes' last day of school is June 7th so I will only have to drive her to school for 5 days ... not too bad. :) Since I'll be living with my parents, I'll be able to continue helping them sort through things and get more organized for their move when they join us in Gilroy at the end of July.

I'm also excited life is slowing down because I'll finally make it to the gym again!! Ever since running the 10K in Santa Cruz on April 1st, I've been to the gym once. I feel so crummy and blah. It's going to be nice to feel energized again. :)

Mia is doing better. The EEG didn't show any signs of seizures during those combined 40 hours of the tests. They're just Mia Moodiness. :) Of course there is the exception when she actually does appear to be having a seizure... but those are pretty rare and far between. She seems to still be getting over a cold but all things considered, she's pretty stable. :)

Happy Memorial Day.

Rachael

What an absolutely crazy day!

I am so exhausted. We all are!

Mia is doing better... they were able to complete the entire 24 hours and there wasn't any seizure activity noted. That's good... but boy when she is mad, she is mad!! They almost kept her another night because, as nurse Cindy put it, Mia didn't quite recover from her temper tantrum that she threw during bath time and trach tie change. It was bad enough she had to go on 100% oxygen for a couple of hours, got a stat chest xray, had blood coming from her mouth we assume from biting her tongue or inner cheek... she went all out this time! The xray showed something, but wasn't totally alarming and she finally calmed down after about 3 hours.

She is just now at CRC (this is the first time I'm not with her when she gets transported!) and I will call in a few minutes to see how she's doing.

Today has been especially busy with the moving sale in the morning and also packing and loading the pod from 4:00pm until just about 10:15. We're so grateful for our moms who helped and my brother who helped Robert load and secure everything. We're about 85% done but we are out of boxes and storage bins. Darn. The pod gets picked up in the morning and we also have another moving sale to do at my parents... and Mercedes' soccer game at 10:00am!! Aaahhhh!! We'll get it all done somehow ... :)

I am so tired ...

Goodnight!

Mia is playing dress up again!

The doctor came in to fill us in on how the study went. He didn't see even a single spike, so he personally feels that what she does is simply because she is mad. It makes sense to me - that's what I've been leaning towards anyway, but you never can be completely sure on a child who doesn't have the capabilities to make facial expressions, cry or scream. (Or smile, or laugh, and so on...)

I've been saying that Mia missed the memo on the 'terrible twos' and now she's making up for it by being a trouble-making 3 year old. Haha :)

The doctor says he would bet that they're not seizures and that she's just showing that she's upset, but if we'd like, we can do another 24 hour EEG. Robert and I feel we may as well do it again since Mia is already here. The doctor also said to try to encourage what she does - do what gets her mad just to catch it on the computer and video so we can rule it out. We'll see!

So, Mia is back to being Lazarus and Rapunzel. :) We should be back at CRC by around 5pm tomorrow ... hopefully.

Mia has had her spells of moodiness (of course while the camera was off!) and I guess her tummy didn't quite like the formula they had at the hospital. She threw up a little bit after her 8am feed, so she skipped lunch. (She got PediaLyte instead.) The dietician came and asked if we would be able to bring Mia's normal feedings, so I was able to pick up her bottles of formula from CRC in time for her 4pm feed. I'm sure her tummy appreciates it!

That's all the news for now...

Rachael

Day 2 at Good Sam PICU

Mia had a pretty good night. Took a 3 hour snooze, then was awake the rest of the night. I'm sure she's claiming she didn't know what time of day it was due to not having any windows in the PICU. ;) She's currently wide awake watching Winnie The Pooh again. If you haven't guessed, that the only full-length movie she has on the iPad. :)

It's really cute, though... when she first watched it on the iPad about a month ago, she kept touching the screen like she does with her apps thinking it was a game. She has now figured out that it isn't a game and that it is just something to watch. She now enjoys watching a few free TV kid show episodes that I had downloaded for Mercedes a couple years ago - Blue's Clues, Super Why!, The Backyardigans, etc... :)

It really excites me to see this kind of comprehension she is showing ... :) I've always known she's very smart and just struggles with getting her body to do what she wants it to... this kind of communication is really fun to see!

Apparently the EEG got interrupted at approximately 16 hours into the study, so Mia's dress up party is over - she is no longer Lazarus or Rapunzel.  :) She's back to being her beautiful perfect self! We're still waiting to hear from the tech or doctor to see if they got enough information for what they need, or if Mia will need to stay longer.

Mia seems to be really irritated from being on her back so much.  Well, just being stuck in the crib, basically. I can see that she would rather be on the floor rolling around, but that's not possible here. Now would actually be a great time for the EEG since she's mad! She was too happy at first with the change of scenery during the test, but it looks like that has come to an end.

I'll keep the blog updated when I can. (Thank goodness for the app on my phone!)

Rachael

Pictures included are from Mia getting the probes on her head; the computer and camera; video on screen; Mia sitting up this morning in the dark; laying on her side trying to get comfortable

**the app scrambled up the order of pictures... sorry. :)**

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. :)