I'm so sorry I've taken so long to update, I've spent the day unshowered in my jammies in the ER!
Me and Jax took a ride in a firetruck this morning. With lights and sirens even this time! It was really cool! (Yes I have a morbid sense of excitement) I was unable to keep his sats up last night on maximum support I have at home, so in we went. They'll be starting him on antibiotics because they think a little pneumonia is in there too. He is on the floor right now, but they'll be watching him extremely closely tonight because they too think we are going to get worse before we get better.
I just got home for the night. We'll see if I last all night. I've never slept away from the hospital when he's been on the floor before! I feel horrible, but I have to sleep tonight, I just have to. The only reason I'm able to leave him is because he is a one to one because of his trach, so I know there's always someone watching him. And I've already threatened the nurse with her life! I know its worse on me then him though, and I'll be calling throughout the night to check on him.
I'll be better at updating, I promise. But for now here's a hard question. Again the attending asked me if he had a DNR (why don't these people look at his binder?) And the subject once again gets brought up. Now yes Jaxson has Down syndrome and a host of medical problems that come with that. But he also has problems not caused by the Down syndrome, problems that will take his life much sooner than typical DS people. I know this is something I really need to be specific on. If nothing is on paper, and we are not there, then they do a full code. If his hearts stops and he requires CPR, his brain won't survive another hit, and he would be a total vegetable. But how do I decide exactly what to do and not do? How many minutes of CPR before we stop, or any CPR at all. Do any parents of extremely fragile kids have paperwork in place? And some advice on how to do it would be greatly appreciated!
1 month ago
33 comments:
UGH, I KNEW IT! I'm so so SORRY Lacey that Poor sweet Jax had to take the trip to the ER! At least you got the excitement part out of it, LOL
WOW, that's such a tough call to make with the DNR thing...I have no clue since I don't have any experience. Praying that you can make the best decision for Jaxson...YOU ALWAYS DO! Trust your Mommy instincts!!;)
I'm so glad that you'll be able to get some rest tonight & that he has one on one there to take such good care of him...PLEASE REST!!!!
SAYING SO MANY PRAYERS for the big WARRIER! I don't know any other child that is stronger than Jaxson!
Many Many {{{{{{hugs}}}}}}
With ALL of our Love!
xoxoxoxoxoxo
Oh man, I have been worried all day that I would read something like this. :( I hope that they can get him back to baseline quickly.
I hate the DNR talk. Like you said, how do you make a decision like that? It makes me sick to my stomach just thinking about it. My peanut had an 18 minute cardiac arrest. She was intubated during the time which is the only reason she survived. 18 minutes! After that, in the PICU, they wanted the specifics you are mentioning. How far to go, how many minutes to do it. It was the worst talk I've ever had to sit through.
Please know that you and Jax will be in my thoughts all night. You are doing a good thing getting some rest tonite while he has a 1-on-1. Please keep us updated as you can!
Hey Lacey... if you still have my email addy email me.. I really want to talk to you. We have everything you are talking about in place for Drew and I want to share some things with you privately please :) Praying you get some sleep and Jax gets better very soon. I am so tired right now I can't see.. 2 days in the hospital with a screaming roomie is way hard! Email me when u can.. huggles!
OH Lacey,
I've been checking back all day fearing you'd been rushed off to the ER. But I'm glad he's "just" on the floor for now and hopefully he won't get worse before he gets better! Prepare for the worst and hope for the best, right? I"m hoping and hoping and hoping for the best!!!! I"m sorry you're having the DNR talk. I can't even begin to imagine that discussion or decisions you have to make. HOpefully it'll all just be talk and there will be no such decisions to be made. You are an amazing spirit, as is Jax and I know the angels are watching over you both. GEt some rest if you can. Jax needs a rested mommy. More virtual hugs headed your way!
Sorry to hear Jaxson has gotten worse. We are thinking of you and praying for a speedy recovery.
I have no experience with DNRs so can't help there. It hasn't come up since the NICU. Yet.
Ugh...I get this all the time girlie. I seriously get sick of telling them he is in fact a full code. Not hard for me to see how they feel about my guy. Praying Jax rallies. I just knew you were there.
I also had some info for you girlie. I just posted something similar over on Dillons blog then realized you had actually posted here. It's time sensitive so I'm going to just pray something like this comes along again and "at this moment" it's just not the right time.
Hugs,
Trina and Jophie
I'm so sorry that your little man ended up in the ER. It sounds like he is in good hands though. One on one care...that's awesome! Now you can rest well knowing that. I will say many prayers that this stay is a short one.
We were hit with the DNR question several times when Isaac was smaller. We finally met with an ethics doctor and it helped me understand a polst form better. I highly recommend meeting with one before putting anything on paper.
I'm just reading now and getting caught up (and reading backwards in time). Oh Lacey. I wish I had words for you. Just know that there are so many of us who love you and your family. Trust your heart and you can't go wrong. You're being held up in prayer.
---Jen
I'm so sorry that I have no words of advice. The first time we got asked that question I lossed it.
Saying lots of prayers for our amazing little Jax and his mommy.
Please keep us updated!
Hugs!
Angela
i just found your blog. I am so sorry you have to go through this and sweet Jaxson. I will keep Jaxson in our prayers and for you.
Lacey, you and Jax (and the rest of the family, too) have been in our prayers. I cannot even imagine having to ask my self the questions you are asking right now. Just know that whatever decision you make...it IS the right decision. You are his mom and you have been blessed with the knowledge of what is best for him. Trust your instincts and know that Jax trusts them too. He knows you love him! He has the best mommy ever! Good luck, sweetie!
Lacey so sorry to hear that Jax is in the hospital.
Sending lots of hugs and prayers
Oh Lacey - I hope both of you get some needed rest tonight. I can't imagine having to make decisions like that. Praying. Praying. Praying. Hang in there Jax!
I am so, well you know what I feel. I am sorry you have to be there, I know how much you hate it.
Just had the DNR discussion with Lisa. I just don't think they believe we understand what is going on with our kids. Like fighting for them is pointless. I say never give up until you look in his eyes and he tells you to let him go.
Keep fighting, and call me when you just can't take it anymore, I'll come up, I'll just gown up.
Love you tons.
This is Joyce. Oh Lacey, I am so praying for Jax and you and the family. This is not easy. We do have in place a DNR plan for Sarah. Trust your instincts. Hugs coming your way.
so sorry that he's so sick right now :( I hope you're able to get some much needed rest tonight so you can be there with him tomorrow.
I have no idea how to answer your question either, such hard decisions to make, I have no idea what I would do ...
Just offering my prayers...prayers for healing and peace.
You, Jaxson and your family are in our prayers. We are so sorry Jaxson is having to go through this. Glad you are able to come home and get some sleep.
I have been gone most of the day today and I had a feeling that you ended up at the hospital because I hadn't heard anything yesterday. Bummer about that!! I cracked up though when I got your comment talking about plans for Disneyland. Only you could have your son in the hospital and worrying about his DNR AND at the same time be planning your vacation next month. We do hope to be able to join you one of the days at D-Land but have to think it through because we have some financial issues arising(fill you in later) and will be hitting the big time budget soon. One way or the other, we will definitely see you guys!! Hope Jax is better soon.
My sweet friend...I so hate that you even have to discuss and decide and question,issues like this.I HATE it.
For tonight I hope you are resting and I hope that little guy is behaving himself in your absence.
We love you all.We love Jax.I wish that were enough to turn this thing around.Instead we will pray like crazy.You have seen it happen before Lacey ...you get all of us that love him,all your blog followers and all their families and we pray and he and the Big Guy Upstairs,turns this thing around.I will hold on to that as the last thought I have tonight before I fall asleep.
Oh dear Lacey...not the kind of post I was hoping for...we have dear sweet Jax in our prayers constantly here, and I am thinking positive things throughout the day, I wish that that were enough to turn things around, but even if it isn't I know the more positive energy I can send it will still come his way and every little bit will help.
I wish you didn't even have to bring up the DNR issue, you can only go with your instincts here, but I pray pray pray to God that you don't have to.
Sending you love, hugs and prayers
Oh Lacey
I am just checking in on my blog babies from india...first chance Ive had in days and my heart just sunk when i read your last few posts. I just ache for you to have this scare and these decisions before you. Trusting the Lord is able to bring about healing for his tired sick lungs and that you wont have to make those hard choices. Holding you close in prayer. love to your sweet boy!!
OH, Lacey I knew something was up. I yesterday for an update. Couldn't sleep thinking about you and Jax. I just felt you were going in.
That question sucks!!(DNR). Praying for you and Ray, parents should not have to deal with things like that.
Praying that you get wisdom and guidance for that.
Meanwhile we are all praying for Jax in our neck of the woods. I so wish we were closer.
Firetruck? I've never heard of that - not an ambulance? Cool. I'm SO sorry about your admission. I hope it's nothing too serious so that you don't have to be there long. We all know how those PICU stays end up being FOREVER! :) I'm praying for sweet Jaxson and you. I say go with your instincts. It's not easy and no parent should have to have that discussion about their child. :( Thinking about you...
Oh Lacey - I am so sorry. I was so hoping it was ...I don't know, something easier.
As far as the DNR, I think you'll know when he has had enough. Oh Lacey, huge hugs and prayers.
I'm so sad for you and Jax!!! I was so hoping that he would get through this fast and easy!
But, the firetruck story IS quite cool! I bet your boys were impressed to know that Jax got a ride on a firetruck, with sirens and all!
I had a difficult time with the DNR thing back when Gavin had his stroke. I was so tired of having to watch him suffer, but I wanted to fight with him as long as he had it in him to fight! I talked with our pastor and he told me that "You should do all that you can, if there is something that can be done, then do it." God will make the important decision for your family and Jax! God already knows when we all will pass on and until then.....we need to keep perseverance and fight on!
I'll be praying and thinking of you often! Hope you got a great night's sleep, you need one! Love, Hugs and Prayers!!!!!
At least you were able to go home and try and sleep. Knowing someone is with him around the clock, I'm sure it was a comfort to you.
I can't offer any advise up on the DNR order. I don't have any idea what I would do. All I can do, is pray for you and your family.
I had a sick feeling in the pit of my stomach that little Jax was up at the hospital. Im so sorry, I know how much you love that place! I will continue to pray for Jaxson, I just wish there was more I could do. I am glad to hear he has a one on one nurse. I am glad you went home, I know it's hard to do but you need to take care of you, words im sure you hear a bazillion times.
I hope to read that you are BOTH on your way home in the next post, stay strong, you are a great mama.
We're praying hard for Jaxson, and for you as well (Mums need prayers too!), from here in Suffolk, UK.
Really hope that God will hold Jaxson close and keep him safe, and that He will give you strength.
Love,
Becky, Seren & Dylan xxx
We are so sorry he ended up at the hospital and that you are having to even discuss the DNR. We will be praying for his healing and for your discernment on how to get your thoughts and wishes down on paper so that the doctors clearly understand.
Hugs to you all.
I've been gone the last few days and just found out Jax is sick. We are praying for your little guy and are so sorry he is sick.
I will be prayer super hard that you don't even have to make a decision like that. if you need anything, call me or text me, email me...anything.
Please give Jaxson lots of love from me!
Oh I just caught up on your blog, and I'm so sorry he's so sick! I wish I could help with your DNR thoughts, Caleb is still a full code because my heart hasn't been able to figure it out yet. We'll be praying for you guys!
Oh, holy cow, Lacey. I don't know how you do it. You're amazing. Poor little Jaxson! I'm sooooo sorry you're both going through all of this right now!!! I'm just catching up and reading backwards. My thoughts are with you. Hope you all get good news and good results soon!
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