Monday, August 9, 2010

PICU day 4

Today was a good day, he actually surprised the heck out of me! When I first got there I was quite alarmed because he was even puffier than he was yesterday, even though he had been off IV fluid for over 24 hours. It scared me that it was heart failure causing more fluid back up. His x-ray was horrible this morning as well, they ordered chest cpt 3 times a day as well as more diuretics to pull off that fluid. The funny thing is, as puffy as he was, his lungs were holding up quite well. He wasn't really requiring any more support. They did an echo this afternoon that showed worsening pulmonary hypertension, and he was finally started on viagra!!! This episode was a blessing in disguise. He is finally getting the support for his lungs that cardiology wasn't doing. I'm feeling better about the vent, feeling cautiously optimistic that it will help him get stronger. We were really feeling that our time with Jax was getting short. This event was bad. He dropped his blood pressures and his heart needed continuous IV drugs to make it pump effectively. Tonight I'm feeling better about the vent actually helping, and not just postponing the inevitable. Although I'm still nervous about it. Most kids that need vents need them early on. When you slowly need the vent, it usually means your health is going downhill. One day at a time here!
The plan now is to get him on vent settings to go home with. The RT today said he thought vent training was 10 days! No way am I staying there 10 days to learn this machine. Give me the manual and show me how to work it and lets go! So I don't know how much longer we are here, it all depends on how getting this home vent goes!
Wish us luck!

23 comments:

Alison said...

Thanks for the update Lacey. I'm so glad to hear Jaxson is finally getting what he needs for his lungs. I hope you don't have to stay another 10 days!

Michelle and Sean said...

I'm so glad that he is a little better! Not so happy that he has worsening hypertension though. I hope he is on the road to recovery with this new med.

I know I'm probably annoying telling you how things went for us but just in case it might make you feel better we did not require ten days of vent training before we went home with Maggie. It was actually rather quick. So I hope you are not in there for ten more days. All I know is that we went into another room and had about two hours or something like that of training on how to work the vent and what to do. We didn't even have any over night trials with just us taking care of her like we had to do when she got her trach. So who knows. We are praying for you though and hope you can get Jax home soon and then your little girl!!

Stephanie said...

Glad to hear that Jax is holding his own - not so happy to hear about the PH. I hope they are being agressive with the sildenafil (Viagra). Christopher started out on 18mg, 6 x a day. That is a HUGE dose, but it helped to get the pressures down. It doesn't work quickly, but it does work.

Ugh! I remember vent training too. I have had to do it twice, although we didn't end up bringing it home. Ours is 30 days!!!! We have to room in with them for 10 days before we can come home.

I don't see why you guys can't get home earlier - you are already ddoing most of the work with the trach anyway.

Keeping you all in our prayers that you get home soon. Show them how it's done Jax!

Sending big love.....

Hugs!
Steph and Christopher

Tina said...

Thanks for the update, have been thinking of Jax alot. I really hope things get better now and you can go home soon with a little boy on the road to recovery.

Praying and sending you love from here

Mama Mason-Mann said...

Great news that he had a good day. There is definitely more hope in your words which must mean he's doing better. Let's hope you're not in there for another 10 days. That seems a little ridiculous! Thinking of you and Jax ALWAYS!

Cammie Heflin said...

Been thinking of you guys! Glad he had a good day, hoping your vent training is a breeze!

Regina said...

Wow! Glad you are getting closer to home! My Jayden was on viagra (sidenifil) for about a year. Seems to have helped him! Hope it helps Jax! Good luck with everything!

The VW's said...

Jax always seems to surprise the heck out of everyone, doesn't he?! I pray that he continues to surprise us all with that tough fighting spirit that he has! Hope you are able to make it home soon and that he does great!

Is Jax on a medication to help his heart beat easier, like captopril or enalapril? I wonder if this would help things, by helping the heart not to work so hard? Although, they can lower blood pressure too....so I don't know? Just wondering and hoping that something can help your sweet boy!

I'll be praying and thinking of you! HUGS!!!

Rochelle said...

Praying that they won't hold you guys 10 days just to learn about the vent. Glad he is doing better. More prayers for you all.

Becca said...

Good luck, Lacey! I hope you can all break out of that hospital and go home soon! Glad thing are a little bit better today. I hold my breath reading your posts lately.

my family said...

just found your blog and I am falling in love with Jax...Id love to follow along your life journey

Kristin said...

10 days - wow! Hoping and praying for you to be home MUCH sooner :)

Melissa M said...

You all are still in my prayers and I'm glad to hear Jax is doing better! Hopefully you'll be home soon.

Meghann said...

Good Luck Lacey! I know you're not through this, but it was so nice to read things are a little better!

Corinne Judy Smith said...

I'm been checking Facebook for updates, not even realizing until today that you have been updating your blog... Duh! I can't believe the adventure Jax is taking you on. I really hope you don't have to stay 10 days to learn about the vent! I hope he turns around and can come home soon. I'm sure he misses his brothers and they miss him. Hugs and praying for you guys.

Kelly said...

Thanks for the update, Lacey! I hope you're able to make your way home soon!! Thinking of you all, and continuing to pray!!!

((HUGS))

kecia said...

I just got back in town and am so sorry to read all this about Jax! How are you holding up? Are at primary childrens? I was just there yesterday visiting my neice with ds who just ahd her heart surgery. If only I had known I oculd have visisted/met you! Hang in there!

ABandCsMom said...

Continued thoughts for you all.

Anderson Family said...

Good grief - I leave for a few days and come home to find out you are up at the hospital again! So sorry! Tell Jaxson he needs to get better so he can play with Carter again! Let me know if you need anything - we will be praying for your little guy! And tell your Carter CONGRATS for making the baseball team - that is awesome!

The Snell Family said...

Glad to hear good things, sucks when the bad has to make it happen. I know you will prove to RT wrong, and it won't take 10 days, you do they think their talking to anyway. (hee hee)
Send loves and hugs to you.

The Browning Family said...

Praying for you guys ... Jaxson we love you buddy!

Sweet Pea's Mommy said...

I sure picked a bad time to be MIA on your blog! I'm so sorry!!!! Jax and all of you are in our prayers!!!! I hope that the vent training isn't long at all as 10 days seems insane and you are a bright gal that can figure it out.

I loved your comment the other day about always needing DS in your life! But don't you worry, any way you look at it you will always have DS in your life because this huge DS community/family is surrounding you!

We love you and will continue praying for Jax!

Mel said...

Praying for Jax and your family Lacey!! Extra prayers tonight for you too!!