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!
1 month ago
26 comments:
UGH, I'm so sorry that they didn't call you...BUT THANK GOD that he's ok now! That poor little man, fighting like a WARRIOR!!!
Keep on fighting Jaxson & get those lungs back to how they were before...Praying that they'll heal real soon!
Love you xoxo
Prayers are being continued!! Lacey Jax is just so handsome in that first picture.. he is such a strong fighter!! Keep up the good work buddy.. we are all pulling for you.. Katie, Emmie and Drew send tons of love and germ free slobbers! Huggles to your mommy too :D
Poor little guy, definitely thinking and praying for Jax!
Oh that beautiful boy...
I am praying for you Jax!
Praying for the little warrior.
Sending lots of love and hugs.
Love that first picture of Jax!! So, just how long is "a while" for being in the PICU??? Just keep getting those good night's sleep.
I think the nights are the worse. That is when everything always tends to go downhill for Parker.
Keeping you in our prayers.
Oh... he is just a handsome little man! Continue to rest and we'll continue to pray!
Oh goodness, I'm so sorry to hear about this setback. We went through this dance a few months ago. It seemed like we were never going to move forward. I will pray for those lungs of his and that he will eventually be able to go back to his baseline.
Sorry to hear he is still so sick. Will keep praying.
That picture of him rubbing his eyes, I just want to run to you and snuggle with him. That is such a precious picture.
I will continue to pray for Jaxson. I'm sure he is just resting up a little and then he will start mending.
We are walking right beside you Lacey with our arms around your shoulders. Prayers continue.
Oh god my heart aches, but my hope and faith is strong...I continue praying for Jax, keep on fighting little warrior
Poor little Jax, continuing prayers for you. Get well soon
I was worried that might be your post after a day of progress. It seems that's the way it goes with these medically fragile kids. Like you said, one step forward, two steps back. Now he needs to start taking 2 steps forward and 1 back so at least he will get ahead of the game!!!! And of course, we'd prefer NO steps back!!!!
Love the pics and hope he's not in the PICU for too long. Hugs to Jaxson and mommy!
Continued prayers for your little warrior. He is loved by so many!
I thought of you yesterday when I was up there with my foster son. Hang in there he is a fighter!
Sorry that about Jax's progress. Glad you are getting some much needed sleep. We will keep praying him better.
Lacey, I hope you can feel the love and strength we are all sending you. I'm sorry that Jaxson isn't improving yet. I hope that he proves those doctors wrong and this PICU stay is over SOON!
What sweet pictures of Mr. Jax!!! Give him hugs and tell him to keep fighting! Thinking of you guys and praying often! Love and Hugs!!!
Continued prayers for that precious boy of yours! And continued prayers for you and your family as well!
Thank you for keeping us all updated.
what a sweetheart he is! You are an inspiration! I think those disneyland passes are the perfect thing to look forward to.
sweet dreams, little jax...rest up and get all better soon.
xoxoxo
His color is SO pale! What did you talk about with the palliative care team? We've met with them a few times...Praying for you guys!!!
Still praying for the little guy. Hope it all works out soon. :)
Thinking of you and your sweet family. I hope his lungs can improve as quick as possible!
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