Lovin life!

Yes I do think this title is appropriate even though my baby is in intensive care. He is such an amazing fighter, again he triumphs over the evil that tries to take his life so often! He is doing even better today, and he's having more trials off the vent. It wouldn't surprise me if they try to let him go all day tomorrow off! He will have to be on the vent during surgery of course. I still have no idea what time and what it entails, I just hope they wait until I get there to start. I guess they have to get consent signed anyway first. I just hope surgery and anesthesia doesn't set his recovery back at all. I guess we'll see. But it will be so nice to get the cecostomy out and not have to come back in to have it done. Lets do it all in one stay. RSV season is just getting under way here, and the last couple of days the PICU has filled up. We are now triple bunked, we have a sweet tiny baby shoved in between Jax and his neighbor.
Our home study is now done! And I'm hoping she will get it faxed to DCSF on Monday! Then we can find out if we get our sweet baby girl. Oh wouldn't it be nice to take her to California with us? I can't even walk in childrens stores right now. Because I know its getting so close, and I want to buy girl clothes so bad. I keep seeing the cutest Easter dresses. So I'm not stepping foot into a Childrens Place, because I know I'll find the cutest matching girl, boy stuff for Easter, and I just need to wait a little bit longer!

PICU day 6

Jaxson had a really good day today! We went down on vent settings, and even had a trach mask trial! So look who got to hold their baby today!

We only left him on the mask for an hour. His respiratory rate did increase, but overall he did really well. Surgery came down and looked at his cecostomy after I left. They said that the surgeon will come down Monday and take it out at the bedside. Of course I have a lot of questions about that. I know they do a lot of surgeries at the bedside in PICU, but what kind of sedation will they use? And what exactly does the surgery entail? Questions I need to ask them tomorrow. We need to get it out though, its leaking like crazy and his skin around it looks horrible!

Daddy brought the boys up. They were very upset that they can't go back and see him. No one under 14 allowed with respiratory season and everyones crazy H1N1 freak out! But we took the train down to the Gateway to get some lunch. Ray took this picture of Tanner, have you ever seen an autistic child be such a ham?

Not so much progress

Not so much progress today, actually took a step back last night. When I came in this morning I noticed he was back up to 4 liters from 3, and then I glanced down and saw that his peep was up from 6 to 8.
What the? Nobody called me! But I guess he didn't want to wake me at 2 o'clock in the morning, it wasn't that big of deal. He was doing fine and just started desatting and they couldn't get him to come back up. So today we got him back down to a peep of 6 and his oxygen back down to 3 liters. So we didn't gain any ground today, but we are back to were we were yesterday.
And this has been a good stay in that we haven't had to have any invasive lines (yet, still keeping those fingers crossed) We've managed to get 4 IV's in this kid! Amazing I know! But if we can stay away from central lines then we stay away from the infections that they bring with them! His hematocrit was down again today, so it wouldn't surprise me if a blood transfusion is in order for tomorrow. He was awake a little today, but more sleepy than yesterday. Yesterday he must have gotten a burst of energy or something!



We met with the palliative care team today, it was a nice meeting, and the PICU attending came for a while. Things are in as much order as they can be. The attending thinks he'll be in PICU for a while, those little lungs are super sick! And this bug may make them not ever get back to his baseline from before. Oh well, we take what we can get!
The life of a medically fragile child!

Progress

Look who has eyeballs today!!

Jaxson was so much more alert today, I was amazed. Its the first time I've seen his eyeballs in 4 days! They still didn't touch his vent settings today, I guess his x-ray from this morning wasn't pretty. Oh those poor lungs of his! 4 years of damage really takes its toll! But at least he's more awake today, thats progress! Not really much more to report.

Again, thanks for all your prayers.

Grateful

I'm grateful that the doctors let my baby rest today without trying to wean his vent settings.

I'm grateful that I have so many wonderful friends praying for Jaxson and giving me support!

I'm grateful that my baby takes his battle wounds with a grain of salt, never complaining about anything.


I'm grateful that I saw my baby's eyes today, if only for a second. And that he moved around a little more, showing some more signs of life.

I'm grateful that my baby continues to fight, even though he is so tired he can barely move. Even though he is so tired he requires a machine to breath for him. He continues to fight!

I'm grateful for a wonderful husband, and wonderful boys. Boys that have had to grow up way to fast, to come home from school and take care of themselves while mom is in the hospital with their baby brother.

I'm grateful for our Disneyland season passes I just bought last night. That in a matter of a week to two weeks after we get Jax home, we are leaving this place behind, this hospital behind, and going to the happiest place on earth!

One step forward, two back

Jax is actually hanging in there. He was doing really well this morning. So well the respiratory therapist thought we should try a trial on his trach mask. I was a little more hesitant, thinking we should probably wean a little more. But the resident agreed to try. Its not like we have to reintubate him, we just pop the vent back on. He didn't do all that bad, they left him off for an hour. Then I went to lunch with Michelle and Preslie, and was gone for a couple of hours. When I came back he was back up to 10 liters from 4 satting barely 90! He is very fluid positive so they are trying to pull some of that fluid off, but I don't think they will be doing any more mask trials for a while!
Slow and steady, as our dear friend Heather always says. Thats what you have to do with Jaxson!

Update on my warrior

Not a whole lot to report today. Not really any worse, so thats good. They went up a little on his oxygen, from 6 to 8 liters. I have no idea what that equals on the normal vent, this is a vent that they use for trach kids. The attending told me when he came in today that this will take some time to recover from, so expect a long stay. When he left the nurse told me this was a nasty virus. Nastier than RSV, and she thinks he may still get worse before he gets better. I know I've heard of this virus before, but I guess its fairly new.
I've gone home to get the boys, and I think I will just stay home for the rest of the night. Its a nice 45 minute drive to the hospital, and I can't hold him, I just stare at him all day while he sleeps. So there's not much I can do. He's stayed stable today, so I'm going to get some things done at home tonight.
I see that we have some new bloggy friends, welcome, and thanks for your prayers. I promise I will come visit and say hi when things calm down!