Back to CRC!

Well, after 5 days in the PICU, Mia is back at CRC. The PICU is always wonderful because it's so quiet and the staff knows her so well after her many visits since her first stay on July 4, 2009. It's always nice, in a way, going back because the staff is like family that we don't see very often. We love the nurses at the Good Samaritan PICU!

Mia is doing a lot better, especially since Sunday and Monday. She had, what we're referring to as a, trach infection which is why her lungs were clear - her lungs weren't the issue. Her co2 is perfect ... still on high flow oxygen at CRC requiring 35%. The respiratory therapists at CRC are awesome and we have Jan today, so I feel really good knowing Jan will do her thing and stay on top of Mia's care. :)

The doctor put Mia on some water retention medicines so she has lost some weight. Hopefully they will readjust her dose or even discontinue the meds soon. Her eyes are all sunken in. :(

Mia is sleeping currently ... knocked out after getting her skin assessment, weighed and bathed. The noise and hums of the equipment must be soothing to her. :) A PICU RT referred to the ventilator as the 'Prius' of ventilators because it literally is silent! The CRC vent has a nice hum and you can hear when it breathes for Mia. The PICU is pretty quiet which is drastically different than CRC! ....which may be why she couldn't sleep. :)

So grateful Mia's doing much better. :) Thank you for joining us in prayer!

Rachael

Picture is from the ambulance ride over. :)

Mia's magical shoes

Yesterday Mia had a rough day - just in a much different way than the 3 previous days. Her ventilator settings were slowly coming down and her co2 was much better, and she wasn't requiring as much oxygen which is always nice. She has some sort of respiratory bug and is being treated by an inhaled antibiotic. Today her secretions are much better and less from trach, nose and mouth.

The main issue with Mia was she was so tired, but was fighting her sleep. She had been awake since 6:45am and the entire time I was with her, she had taken serveral naps, but, combined, it was only about an hour. She had her legs flailing which made us have to tape pillows to the sides of the crib to protect herself from further bruising her poor little feet. When pm shift came on at 3pm, I told her nurse Dennis that I'm not one to drug my child, but that I really felt she needed something to make her rest. He said that he agreed and that if she wasn't asleep by the time he came back from break at 8pm, he'd give her a dose of Adivan. I called at ten to see if she had fallen asleep yet and he said that even though he gave her the med at 8, she was still fighting ... she wanted to stay awake. I don't know what she thought she was going to miss out on!! Haha My poor honey.

I called noc shift this morning to see how she did (if she slept!) and the nurse said she finally fell asleep at midnight and woke up at 6am. Only 6 hours of sleep for an exhausted 3 year old? Not so good!

She hasn't been as restless today, but still... she's been awake since 6am and it's now 4:30pm and she's only slept about 2 hours total. She was asleep when her Nana and Pops came to visit and woke up when her other visitor was here. :)

Dennis and I were talking about how bruised up Mia's right foot is from banging it on the crib, and how the soles of her feet are all red from clapping them together all the time, so I decided I would put her socks and shoes on ....

Her shoes are magic!!! As soon as I put them on, she fell asleep and has been asleep for about an hour! Haha So glad she's finally getting rest.  :)

Dr. Silva and the on-call doctor, Dr. DiCarlo, both say Mia's ready to go back to CRC, so if nothing changes over night, we'll head back there tomorrow. :) It's always nice coming to the PICU at Good Samaritan Hospital when Mia needs extra care... we love the staff here and they all love Mia so much which is just as important! :) This is Mia's 5th or 6th visit since she was just 5 months old, so the staff has seen her grow up and develop over her 3 years! :)

Yes, Mercedes is excited!!

Yesterday Mercedes drew this picture and put it on the refrigerator and showed it to me when I got back from the PICU ......

For about 2 years, Cedes has been saying that when Mia comes home, she wants to share a room with Mia and get bunk beds - Mercedes gets the top and Mia gets the bottom. :)

Now that we're moving to a house and Mia is coming home, she is still sticking to her plan! She's determined to get a bunk bed and have Mia sleep in her room on the bottom bunk. :)  Such a sweet dream. I'm sure it'll be a reality at least for maybe an hour or so to start out with!

Enjoy her drawing. :)

Cant wait for life to slow down!

Robert and I celebrated our 7th wedding anniversary the end of last month and it was a really nice day! He basically planned it all... my contribution was taking Robert to his very first SF Giants game! It was great spending time together ... and the Giants won, so that was great, too! We had a great lunch at a Thai restaurant in Sausalito, then we went to where he proposed ... he's much more romantic than I am. I'm too practical, which isn't always a good thing! Haha

We finally moved out of the apartment... that was an adventure! We thought we hardly had anything left to pack, and yet it still took FOURTEEN stinkin hours!!! So grateful to have my parents help for a few hours, and that Robert was able to come home a few hours earlier which really helped speed things up! So glad that my brother was so kind and helped load stuff in his van to take over to my parents home, where we are temporarily staying until we move into our new home.

Life back at home with my parents has been a blessing, but so chaotic since they are packing as well for their move with us, and my sister is packing for her move to Nashville! Talk about having boxes everywhere! :)

One great thing was my brother and sis in law celebrated their birthdays by going to a Giants game. About 20+ of us friends went and had a great time ... especially since it was the first perfect game in SF Giants franchise history! Matt Cain was incredible ... as well as Panda, Melky, Buster and a few other guys who made the 10-0 game awesome!! So glad Mercedes and I could be at that game!! :)

We were able to keep our vacation plans that were made a year ago to go to Lake Tahoe for a week with Robert's parents, his sister and her family, and his Dad's brother and his family. It was so relaxing and nice not have ANYTHING on our agenda but to go to the dock or to the pool or go for a walk!!! I think I may have appeared to be lazy to Robert's family to still being in bed while everyone else was having breakfast and getting ready for the day, but as far as I was concerned, I was exhausted and I needed sleep!! Haha I was, after all, on vacation! :)

We did take a nice drive to Angora Lake ... and it was a hike from the parking to the lake! I was a little emotional watching the kids play in the water, especially our little niece Emma. She's 9 months younger than Mia, so it was tough seeing her play and laugh and talking up a storm and just being herself, since Mia's never done any of that. I'm hopeful she will eventually, but it's still hard. :) I think Uncle Dave saw that I was much more serious than usual, so he got Robert and I and we climbed the rocks and everything to try to get to the other side of the lake... I'll tell you what... trying to climb in jeans is no easy task! Haha It was a lot of fun and it was nice spending time with Uncle Dave and Robert talking as we were going from rock to rock. :)

The week away was so nice. I've only ever been to Tahoe for our honeymoon and 3 other times (when Mercedes was 3 weeks old; a year old; and 2 years old) and we never really got to do too much any of those times. This time with Mercedes being almost 6, it was so much nicer not having to deal with naps or strollers, etc and just really enjoy the lake and the mountains. Lake Tahoe is definitely one of my favorite places. I never knew I liked the mountains that much! :)

Ever since Mia's visit to the PICU for the EEG last month, she hasn't quite been her usual self. Everything kind of escalated while we were in Tahoe so that was a little stressful being so far away and with cell phone coverage was a little sketchy. I wasn't sure if she was actually sick, or a little depressed because we weren't there or what. One day, she had fevers; another day she was needing 4 liters of oxygen; another day they went up on vent settings; another day she got a chest xray... rough week.

On our way home from Tahoe as we were almost to Tracy, CA (approx. 90 minutes away), I got a call from Mia's nurse saying that Mia was just not doing well at all and that they were sending her out to the Good Samaritan Hospital PICU. She read the very long list of notes and things they did to try to get Mia stable, but she just wasn't stabilizing. Thankfully, it kind of took a while to get her out the door and to the PICU, so we got to her bedside only about 10 minutes after she arrived.

Sunday afternoon and evening, she was doing alright ... acting totally fine, but her ventilator and oxygen requirements were really high... crazy high. Her co2 was pretty high as well, and normally when she's that high, she would be totally out of it, swollen, just looking bad. She wasn't like that this time, which was really odd.

Yesterday I was with her for about 9 hours and during the late morning part, I was getting nervous. I usually am pretty calm since I'm so used to all of this, but with Mia needing 70% oxygen and her co2 being in the 70s-90s, I was getting worried. She's already trached. She's already on a ventilator. She's already on a LOT of oxygen. I asked if they could get a co2 reading from an ABG (blood gas) just to get a baseline because the co2 monitor was currently reading 82. We were hoping the monitor wasn't accurate amd just reading way too high, but the blood gas showed 95!! Even worse than the monitor! They increased some more vent settings to try to get Mia stabilized, but not too much was changing.

We left for my parents home around 8pm, and when I called around 10pm, her nurse Dennis said her co2 was coming down as well as some vent settings and o2 requirements. Praise God!! When Robert called the nurse around 6:30am, she said Mia slept most of the night and came down a little more on settings and o2. But around 5am, nurse Heather had to give Mia Adivan because Mia was having a melt down and would not calm down! She's been sleeping ever since. :) She wakes up every once in a while, but she's pretty drowsy still, which is fine. She needs to rest and it was a good call to give her that antianxiety medicine. Her co2, o2, and settings are all pretty good right now... :::sigh:::

I'll try to be better about updating the blog. :)

Rachael