Friday, February 27, 2009

My boys being cute!







A Jazmin Update


Jazmin has been home since Monday afternoon. She's most definitely glad to be here, with her brothers, her toys, her puppies, etc! Until today, she hadn't shown any ability to be off her vent for any length of time. Prior to her sickness/hospitalization she was only on her vent from about 9p-7a the rest of the time she was on a "nose" (a small barrel shaped filter that keeps debris from getting into her trach, and is supposed to warm the air up). Today Amy and I did a trial run to see how she would respond to a few minutes on her nose. We did have to turn up her oxygen to 1.5 liters, but after a couple hours we were able to turn it back down to .5 liters! That's right I said HOURS! The kiddo was amazing. She was so ready to be off her vent and move around freely and...yes get into trouble. She went down for nap on her vent, but upon waking spent the rest of the evening off her vent, and is now asleep on her vent without any oxygen at all!! Talk about a resilient kid! I hope she can continue at this rate of healing and get back to her old self again...troublemaker and all.

Monday, February 23, 2009

A busy homecoming!!

This morning the boys, Amy and I all made the trek to the PICU for hopefully the last time. We grabbed Jazmin and ran! Just kidding, we loaded up all her gear, and headed home. It was a super crazy day, on top of the discharge from the hospital (with boys in tow) we also had a new nurse orientating to work with Jazmin. Thankfully she seems to have a good base of nursing skills so it is more like training her to Jaz's habits, routine etc. When we got home, we discovered naughty Duchess had been into a garbage can, eaten a novel (just finished reading lucky for her) shredded a potty diaper and numerous other things she found in the garbage can. GRRRRR can somebody please tell her it's not time for spring fever yet! Anyway, it's 9:30 and I still have a ton of things to get done before bedtime and the next nurse arrives. Thanks for every one's well wishes and phone calls to check in. I'm sorry I didn't have more time to talk, but hopefully in the next few days things will slow down and I'll have a better chance to catch up with things/people. Also, thanks to Tanya who brought supper tonight...she saved us from leftovers!

Sunday, February 22, 2009

Cute things Ryan said lately

While walking behind me last night he saw the steam of my breath coming from my mouth. He asked "Mommy, why is the gas coming from your head?".

Tonight at supper, Joel and I were planning a few meals for the week. Joel said he had cheesy onion soup in his head. Ryan stood up, looked at Joel's head and said "that's silly daddy, soup in your head".

While snuggling in for the night, Joel was messing with Ryan. I said "Don't get him all riled up Joel" and Ryan said "yeah, don't get me all riled up Joel".

Kids say the darnedest things.

Day #8 in the PICU

Today Jazmin had no fevers, ate three good meals, and maintained adequate hydration via her sippy cup! She was up to some of her old tricks...dropping her sippy on the floor, popping off her vent, making faces at everyone who walked past her room...all signs that the old Jazmin is re-appearing.
Her pulmonologist has agreed to let her come home tomorrow YEAH! (baring any unforeseen circumstances) Looks like she did herself a little favor getting her IV out a day early. So bright and early tomorrow morning the boys and I along with her nurse Amy will make the trek back to the hospital and get her home. Tomorrow is a big day so wish us luck!

Saturday, February 21, 2009

Day #7 in the PICU

Jazmin is starting to perk up. She's getting closer to being on her "healthy" sleep schedule, she's still taking a short nap in the am, but at least she's not sleeping all day and night anymore. Smiles are getting to be a common reaction (finally) and we've even had her laughing!
The blood test for her level of infection (CRP) has come considerably down. This number should be between 0.05-o.4 hers has been over 13! Today it was down to 8.95, so that's a jump in the right direction. Her chest x-rays are still pretty yucky, but are moving in the right direction as well. This evening after I left, her IV came out. They were unable to obtain a new site so they switched her over to oral antibiotics a day early. There was some concern whether she would maintain her hydration without it, but my dad and Debby were there this evening and said she was sucking down the fluids and she ate some supper too. Hopefully we continue on this path and can get her home soon.

Friday, February 20, 2009

Day #6 in the PICU

Jazmin had an okay night. She slept well, but spiked another fever, it came down with meds thankfully. This morning Amy went to the hospital early so I could spend a little time at home and not worry about her too much. That was a wonderful reprieve. I got there around noon, and she was sleeping peacefully. Her Pulmonologist rounded very late this afternoon, which was good for me cuz I had lots of questions! He said that her lungs are sounding better. They'll do another chest x-ray and more labs in the morning and if they are looking better, they'll turn down her IV and switch to oral antibiotics tomorrow afternoon. Because of Jazmin's already established in-home nursing, he's hoping to get her home early next week, where we can continue everything they're doing at the hospital...just at home. That's the good news. The bad news is her overall recovery time. He's guessing that it will be weeks to a few months before Jazmin is back to where she was before she got sick. This is a major bummer for her (and us). She will have to start the vent weaning process all over again. Hopefully she'll take to it faster since she's done it before, but there's no way to know. For now, we'll just continue to try and get her healthy so we can get her home where she belongs.

Human Metapneumo Virus

Day #5 in the PICU yielded a name to Jazmin's illness. Human Metapneumo (meh-ta-new-mo) virus. There's not a lot of research online that I can understand, but I'll explain what I do know. hMPV is like the RSV superbug. If you know what RSV is, you'll understand that what we have is a serious virus, and this explains why Jazmin has continued to get sicker instead of healthier. This disease was only discovered in 2001, and has serious repercussions for a child like Jaz who is already "compromised" with her trach and vent dependency. In the most serious cases reported online, the patients needed both oxygen and manual ventilation (ventilator). Jazmin has been 100% vent dependent for over a week, and has been on 4 liters of oxygen to maintain her O2 level. We like her O2 level to be between 93-100%. She has been dropping into the 70% range anytime she is removed from her vent for seconds to suction her, do any cares, etc. When she's healthy she is not on ANY O2. Some studies have shown that 100% of children over age 5 are immune.
So, what does all this mean? It means there is nothing we can do except try to keep her from getting sicker. She is on two very powerful antibiotics to prevent a secondary infection from settling in, IV fluids to maintain adequate hydration, and is receiving round the clock treatment by respiratory therapists, nurses, and her team of Pulmonologists. Jazmin is going to be in the hospital for a while.
If you want to visit, call me, I know she'd love it, but please if you have small kids DON'T come. The boys have already been exposed so they've been there 2x already. I have already been exposed and there is no risk to the baby, so I will continue my daily bedside vigil.
Thanks again to everyone who's been helping us out with the boys. It's very difficult having to chose which child/ren to spend my time with, but knowing the boys are with people who love and care about them has made it much easier to leave them.

Wednesday, February 18, 2009

Open mouth insert foot

Sorry it's been a few days since my last post. Unfortunately, Jazmin did not continue to respond well to the antibiotics, and has spent the last 4 days in the ER/PICU (pediatric intermediate care unit) at Children's Hospital. The poor kiddo has had a rough week. I've gotten a laptop from Nanny Jenny to use, and will try to update while I'm at the hospital, but I've had problems so far, so no promises. It's been estimated we'll be there at least through Sat, but I'm working hard on getting that moved up.

Jake is doing great, he's recovering quickly from his pneumonia and ear infection. I hope I didn't just jinx him!

Ryan has had a rough couple days with regards to his potty training. He's been doing great for the last few months, but has really regressed. Hopefully when Jazmin and I are home again for good, he'll resume his old habits.

Thank you everyone who has pulled together to help us the last 4 days, and the days yet to come, we couldn't have done it without you.

Saturday, February 14, 2009

Some nasty sickness at our house

The last two weeks have not been much fun at our house. It started out with me getting really sick with some sort of respiratory bug. Then of course the kids got it, first Jazmin, then Ryan. Joel followed suit a couple days later, and Jake was bringing up the rear. It seemed like we finally had turned a corner and were starting to get healthy again, and then Jazmin got really sick. Then Jake, who we thought was getting better, got sicker. My poor babies, Jazmin has pneumonia and was running 102 temps, and was bringing up blood into her trach! She's had to be on her vent about 20 hours a day for the last week. Jacob poor kid has been super whiny, and after one trip to the md didn't produce results, I took him to urgent care today. He's got an ear infection and pneumonia as well. Those poor kids have had a rough week, and Ryan's bored out of his mind being stuck at home with them and me. Thankfully, they both seem to be responding to their antibiotics rapidly, and hopefully by Monday they'll be healthy enough to get out of the house and do something fun.

Wednesday, February 4, 2009

Swimming and Dinner with friends part two



A couple weekends ago we decided to head up to the community center to go swimming. We have a family pass, and the kids love it! Amy decided to join us with her family. It was a lot of fun, but for some reason it was kinda chilly in there that day. So we decided to wrap it up and head out for some Rancho Grande (our fav Mexican restaurant). I know this may sound idiotic, after our Chinese dinner fiasco (I forgot to add that Damon turned off the lights to the entire place while I was cleaning up Ryan) but sometimes it takes a while to learn. This time we had 12 people-4 adults-2 pre-teens-and 6 under 6. I can't believe how smoothly it went. That's right I said it went smoothly! The kids all ate dinner and behaved like little adults (minus the 6 trips to the bathroom). As we were boxing up leftovers and paying checks, they brought out complimentary desserts for the kids! Does it get much better than that?

Note to Bapa Bryce....


No more band-aides on foreheads please, I don't care how much they beg!

Bob the Builder

The foster agency Jazmin is place with us through gave us some tickets to see Bob the Builder live at the State theater. Jazmin loved it, Jake hated it, and Ryan liked the second half. Go figure! I think the boys were over tired from playing at their grandparents that day and the night before, so that made a difference I'm sure. I would have gotten more pictures of the kids enjoying the performance, but the camera nazi came and said "no pictures in the theater". I tried to debate the fact that it was intermission, and I only wanted pictures of my kids enjoying their first musical, but she started spouting out "publicity regulations this and publicity regulations that". I should have asked what they were planning to pay us in royalties to use pictures of my kids!

Jacob's hidden talent







Daddy and Me

Joel took the boys to our local ECFE daddy and me class. They usually have some fun project to do. In the past they've built a bird feeder, made kites, and enjoyed messy night. I think that one is self explanatory. This time it was build a tool box, and that they did. They aren't that heavy, but they are pretty big, so Jake had a hard time carrying his. They brought them home and promptly filled them up...with cars.

lazy, spoiled rotten, and totally living the life!


Belated Birthday Pictures of Jake and Braeden

Jake's dinosaur cake compliments of Auntie Kendall.

Presents and balloons for Jake. Blowing out candles.
A little over-stimulated.

Out cold, but holding tight to his balloons.


Braeden's Baby Einstein cake compliments of Auntie Kendall.

Balloons and presents for Braeden. Blowing candles out.
WAY overstimulated....and totally under the weather too, poor guy!