9:43 p.m.
My poor girl is having withdrawal from her pain meds . Now instead of precedex being our best friend, we are trying to love up methadone. She is seeing things, babbling incoherently, shaking/jerking and, get this, talking in an English accent. My parents are resting up at Kohl's House in preparation for us to be exhausted after getting through this night with her. I'm just doing this update quick before I rest; Scott has the first shift. Pray for restfulness for my baby tonight. While all the pain meds she was on were great, this is what you have to deal with. After covering her eyes with her hands, she told Scott she was trying to have a good dream. Sigh...let's all send sweet dreams Shelby's way.
5:02 p.m.
SO HAPPY!!! She is on 15L of 100% O2, but doing great. She IS very, very confused...probably hallucinating...and very mad that we don't understand what her little tiny whisper-of-a-voice is trying to say...but our Shelby is back :-)
4:12 p.m.
The vent came out at 3:30 p.m.!!! She's on high flow oxygen and trying to talk with no voice!! She just took her ipod to show her Mom how to work it. Gotta love her spunk! Btw this is Jenn's Mom as Jenn is at Shelby's bedside.
10:25 a.m.
Rounds went well. Her lungs look MUCH better so no worries there in regards to extubating. They will come back early afternoon and "test" her again to see if the breathing tube can come out today. She has been resting very soundly. Yay for a higher dose of precedex! In fact, the nurse bathed her and washed her hair last night and she didn't budge during all 3 of her breathing treatments. Also, the surgeon pulled one of her JP drains this morning. Yippee! She'll hate the other one, so at least one is out and was done while she was sedated. She grimaced a bit, but settled right back down. She only has her arterial line and PICC line in; the other 3 IV's went bad and were pulled and there has been no need to put new ones in. Her labs continue to head in the right direction. I'm very happy with her progress.
My happiness is a bit dampered by the fact that the little one I mentioned yesterday that was not doing good passed away this morning. They are in the room right next to us. My heart breaks for the parents. The sobs of the mother just shake you down to your core. While you are really so close in proximity in the PICU, you really stay pretty private. As much as I wanted to hug those parents, I know that HIPPA and stuff says its not o.k. to just walk in there and do that. But, my heart tells me to. I didn't, though. Strange, isn't it? How "rules" keep us from doing that. I'm feeling torn about that. You just heard them go through hell, yet you sit in your room and pretend like nothing is happening. I feel kinda cold, insensitive, yet like I need to protect myself from that because we are totally on the flip side. Shelby is healing; progressing. When her beloved nurse Meghan was explaining what things would be like post-op Shelby asked "Why are they going to keep me asleep? Isn't the point of life to live?!" Well said, my sweet, sassy one, well said.
Once rounds were done and my parents were there, I headed over to Kohl's House to shower up and get some breakfast. That family should not have to leave without their baby. I have a hard time believing, after seeing him in his mom's arms, that he is in a "better" place. I just do. That is where he belongs. I know we are promised eternal life, but its hard to comprehend when someone so young dies that there is someplace "better."
I said it in December 2010 and I'll say it now. I hate the PICU. There are wonderful nurses and doctors who provide fabulous care, but you just see too much for your mind and heart to wrap around sometimes. Sigh. Please pray for comfort in the coming days, months and years for this family.
3:05 a.m.
I'm not posting at this time because something's wrong; its just the start of my shift. I fell asleep realizing I did not correct that it is not pleural space where the fluid is collecting as was originally thought. Her lungs look not-so-hot on the xray due to atelectasis, especially of the right lung. She's had two rounds of CPT now and has tolerated them very well = her sedation is working great! So, we see what that 4 a.m. xray shows. She is still being kept NPO (ng feeds) just in case she can be extubated tomorrow.
My poor girl is having withdrawal from her pain meds . Now instead of precedex being our best friend, we are trying to love up methadone. She is seeing things, babbling incoherently, shaking/jerking and, get this, talking in an English accent. My parents are resting up at Kohl's House in preparation for us to be exhausted after getting through this night with her. I'm just doing this update quick before I rest; Scott has the first shift. Pray for restfulness for my baby tonight. While all the pain meds she was on were great, this is what you have to deal with. After covering her eyes with her hands, she told Scott she was trying to have a good dream. Sigh...let's all send sweet dreams Shelby's way.
5:02 p.m.
SO HAPPY!!! She is on 15L of 100% O2, but doing great. She IS very, very confused...probably hallucinating...and very mad that we don't understand what her little tiny whisper-of-a-voice is trying to say...but our Shelby is back :-)
4:12 p.m.
The vent came out at 3:30 p.m.!!! She's on high flow oxygen and trying to talk with no voice!! She just took her ipod to show her Mom how to work it. Gotta love her spunk! Btw this is Jenn's Mom as Jenn is at Shelby's bedside.
10:25 a.m.
Rounds went well. Her lungs look MUCH better so no worries there in regards to extubating. They will come back early afternoon and "test" her again to see if the breathing tube can come out today. She has been resting very soundly. Yay for a higher dose of precedex! In fact, the nurse bathed her and washed her hair last night and she didn't budge during all 3 of her breathing treatments. Also, the surgeon pulled one of her JP drains this morning. Yippee! She'll hate the other one, so at least one is out and was done while she was sedated. She grimaced a bit, but settled right back down. She only has her arterial line and PICC line in; the other 3 IV's went bad and were pulled and there has been no need to put new ones in. Her labs continue to head in the right direction. I'm very happy with her progress.
My happiness is a bit dampered by the fact that the little one I mentioned yesterday that was not doing good passed away this morning. They are in the room right next to us. My heart breaks for the parents. The sobs of the mother just shake you down to your core. While you are really so close in proximity in the PICU, you really stay pretty private. As much as I wanted to hug those parents, I know that HIPPA and stuff says its not o.k. to just walk in there and do that. But, my heart tells me to. I didn't, though. Strange, isn't it? How "rules" keep us from doing that. I'm feeling torn about that. You just heard them go through hell, yet you sit in your room and pretend like nothing is happening. I feel kinda cold, insensitive, yet like I need to protect myself from that because we are totally on the flip side. Shelby is healing; progressing. When her beloved nurse Meghan was explaining what things would be like post-op Shelby asked "Why are they going to keep me asleep? Isn't the point of life to live?!" Well said, my sweet, sassy one, well said.
Once rounds were done and my parents were there, I headed over to Kohl's House to shower up and get some breakfast. That family should not have to leave without their baby. I have a hard time believing, after seeing him in his mom's arms, that he is in a "better" place. I just do. That is where he belongs. I know we are promised eternal life, but its hard to comprehend when someone so young dies that there is someplace "better."
I said it in December 2010 and I'll say it now. I hate the PICU. There are wonderful nurses and doctors who provide fabulous care, but you just see too much for your mind and heart to wrap around sometimes. Sigh. Please pray for comfort in the coming days, months and years for this family.
3:05 a.m.
15 comments:
Crossing my fingers! Hope todays the day....
Nicole Schandelmeier
Praying for continued healing for Shelby! Praying for comfort for the family next door. Praying for peace in your heart. I know it can be very isolating in there. Let God use you however He needs you. -- Christine
Amen, my dear daughter, Amen! I feel your pain and theirs. I'll hug you instead (((())))).
Jenn, what you said about the family 'next door' touched me on so many levels. This is one reason I hate going to CHOP so much now, even for check-ups. Every child I look at in those halls kind of breaks my heart. CHOP PICU is huge, and everyday I would hear them calling a code. Each time it was someone's baby...like my baby. I would call it almost an empathy overdose. Because how can we really not be affected, when we are so close to it? After all, our child is not in PICU for no reason.
Anyway....happy it is atelectasis, rather than pleural fluid. One less invasive procedure is always a plus. Hope this is a good day. -Linda from LF
Great news! That is Shelby!
Love you Shelby!
Yay! She just wanted Meghan to be there! Thanks Coralee, for the great news.
Nicole Schandelmeier
Great to see those beautiful eyes! Hello Shelby! Looking very good!
I love that picture. I just love it. Oh the tears...
So so so so sooooo glad that she's off the vent. That is so huge! Congratulations, Shelby! Keep on breathing strong, girl.
Oh Jenn, I remember when Analiese was in picu post transplant, and it is not a nice place at all. But on a good note, I am so happy to see the picture of Shelby without the breathing tube!! YEAH SHELBY! :) So happy everything is going well.
And I also so very sorry for your neighbor. I know exactly what you mean, when you really have been close enough to that edge to understand that pain as much as anyone ever can, without having actually experienced it. I'm hoping they have good friends and family to give them the hugs you couldn't.
Yep, at 9:43 pm is when the doctors would have to give me some drugs because that's when I'd start breaking down, if I hadn't already. That must be so hard to watch your little girl go through that. But, the doctors know what they are doing and have dealt with this before many times. Plus, our great Physician is still at her side protecting her. I hope her rash is fading or gone away completely. Praying for all of you!
-Bruce & Lori
What I hated about being in the PICU for such an extended period of time was hearing a child code every day or two. A couple of times, it was the girl in the room next to us, but as far as I know, she is now at home and happy.
What made things worse is that the same tone (frequency duration) used at Children's to indicate a Code Blue is used at my office on top of the hour to signal to the factory workers that it is break time.
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