July 2013 Moms
gutsymama
member
Lucas Update - Friday - and Care Pkg AWing
gutsymama
member
Nap at last! <:-P
Yesterday was pretty horrible. It included, among other things:
- 12 hours NPO
- hysterical screaming
- maddening miscommunication and scheduling runaround between surgery, docs, and nurses
- room cleaning at 3am, while already NPO
- mysterious rash/hives all over L's arms and legs, pre-op
- a nurse walking in on me in the bathroom buck naked, with no warning, in all my full-frontal unshaven glory.
- attempt to take away the chair in our room, which is the only place L will sleep (on me).
- me reaching my breaking point and unloading on the poor unfortunate nurse who happened to be in the wrong place at the wrong time, trying to take my chair away. (We later hugged it out)
But, I guess my squeaky wheel did some good because we got in around 2 (apparently they had had us down for 4), and we are now in a private room and compromised on removing the chair but giving us a grown- up bed so I can sleep with him in that. And we have a view of a construction site outside our window, which he thinks is the coolest thing evarrrrrrr.
Line placement was completely uneventful. Since he's had multiple lines there is some concern about the necessary veins being blocked off, but they were able to use their first choice which also means they left several important veins untouched for future use just in case. He even came out reasonably happy, and so far hasn't had any adverse effects from anesthesia -- in the past it has wreaked havoc on his motility for a couple days. And, his diarrhea is improving; he even went a whole 24hrs between poops for the first time since he started pooping!
They started him on 24-hr TPN last night, and we weren't sure how many hours we were going home on but this morning they confirmed he will be back on 12hrs (GI was previously talking about 14 or 16, which starts to cut into the day pretty quickly) and they are going to hook us up with supplies that are better-suited to an active toddler than what we had before, and also are being more proactive about preventing infection. So we are very pleased with how all that is going!
His labs this morning looked good; we are going to start doing weekly iron infusions and they want to do the first one here on case he reacts poorly, so we'll do that tonight and check labs again tomorrow and go from there. We are also sorting out some insurance headaches on the way to starting up home infusion services again, so that could delay us going home, but we're hoping for tomorrow at the earliest or Monday at the latest. FX. Tuesday is the anniversary of his NICU discharge date; I'm not sure of I could bear it if we were still here for that.
I don't have full pics, but here is a partial AW of our care packages from J13:
From @lwrightenator and @sparkymcgeee (sparky handmade the finger puppets!)<img src="https://us.v-cdn.net/5020794/uploads/FileUpload/e3/ff73725ba280c0c1b1aa179c1aca8d.jpg" />
From @lancomechica @econmama @etoille @MRads @Mamasighs @Pink724 window markers! And also some window clings and books and not-pictured snacks and Starbucks via, which are hidden because Luke doesn't understand why I won't share the chocolate espresso beans (he gets VERY put out).
Napping with his markers again:
And here is L in his big-kid bed, before I went to sleep:
Yesterday was pretty horrible. It included, among other things:
- 12 hours NPO
- hysterical screaming
- maddening miscommunication and scheduling runaround between surgery, docs, and nurses
- room cleaning at 3am, while already NPO
- mysterious rash/hives all over L's arms and legs, pre-op
- a nurse walking in on me in the bathroom buck naked, with no warning, in all my full-frontal unshaven glory.
- attempt to take away the chair in our room, which is the only place L will sleep (on me).
- me reaching my breaking point and unloading on the poor unfortunate nurse who happened to be in the wrong place at the wrong time, trying to take my chair away. (We later hugged it out)
But, I guess my squeaky wheel did some good because we got in around 2 (apparently they had had us down for 4), and we are now in a private room and compromised on removing the chair but giving us a grown- up bed so I can sleep with him in that. And we have a view of a construction site outside our window, which he thinks is the coolest thing evarrrrrrr.
Line placement was completely uneventful. Since he's had multiple lines there is some concern about the necessary veins being blocked off, but they were able to use their first choice which also means they left several important veins untouched for future use just in case. He even came out reasonably happy, and so far hasn't had any adverse effects from anesthesia -- in the past it has wreaked havoc on his motility for a couple days. And, his diarrhea is improving; he even went a whole 24hrs between poops for the first time since he started pooping!
They started him on 24-hr TPN last night, and we weren't sure how many hours we were going home on but this morning they confirmed he will be back on 12hrs (GI was previously talking about 14 or 16, which starts to cut into the day pretty quickly) and they are going to hook us up with supplies that are better-suited to an active toddler than what we had before, and also are being more proactive about preventing infection. So we are very pleased with how all that is going!
His labs this morning looked good; we are going to start doing weekly iron infusions and they want to do the first one here on case he reacts poorly, so we'll do that tonight and check labs again tomorrow and go from there. We are also sorting out some insurance headaches on the way to starting up home infusion services again, so that could delay us going home, but we're hoping for tomorrow at the earliest or Monday at the latest. FX. Tuesday is the anniversary of his NICU discharge date; I'm not sure of I could bear it if we were still here for that.
I don't have full pics, but here is a partial AW of our care packages from J13:
From @lwrightenator and @sparkymcgeee (sparky handmade the finger puppets!)<img src="https://us.v-cdn.net/5020794/uploads/FileUpload/e3/ff73725ba280c0c1b1aa179c1aca8d.jpg" />
From @lancomechica @econmama @etoille @MRads @Mamasighs @Pink724 window markers! And also some window clings and books and not-pictured snacks and Starbucks via, which are hidden because Luke doesn't understand why I won't share the chocolate espresso beans (he gets VERY put out).
Napping with his markers again:
And here is L in his big-kid bed, before I went to sleep:
FKA mimi4347: diaper rash magician and unofficial expert on excrement
This kid may not have a lot of bowel, but he has plenty of guts!
DS born at 34 weeks with (surprise!) gastroschisis turned short bowel syndrome.
131 days in the NICU, 7 trips to the OR, G-button, daily TPN....
DS born at 34 weeks with (surprise!) gastroschisis turned short bowel syndrome.
131 days in the NICU, 7 trips to the OR, G-button, daily TPN....
We are impatiently awaiting the day we can say goodbye to his girlfriend Ivy for good.
This discussion has been closed.
Re: Lucas Update - Friday - and Care Pkg AWing
DS born at 34 weeks with (surprise!) gastroschisis turned short bowel syndrome.
131 days in the NICU, 7 trips to the OR, G-button, daily TPN....
Here is the pic that didn't post above
DS born at 34 weeks with (surprise!) gastroschisis turned short bowel syndrome.
131 days in the NICU, 7 trips to the OR, G-button, daily TPN....
He's also had blue lips for the last couple days because he keeps licking the window :-/
DS born at 34 weeks with (surprise!) gastroschisis turned short bowel syndrome.
131 days in the NICU, 7 trips to the OR, G-button, daily TPN....
Ah he is so stinkin cute!
So cute!
>:D<
BFP: 12/01/2012 EDD: 07/26/2013 Birthday: 07/25/2013 ♥
D 2.20.2011 & Z 7.16.2013