Nahum is home!! (to Eldridge St. that is) Hilary took him home this afternoon where he can sleep in beep-free peace tonight. He might even feel up to visiting Shayna tomorrow.
On a sadder note, Melinda catches her plane home tomorrow morning. I don't know how she and Michael are going to get along without each other, but we sure appreciate the sacrifice out here. Having another set of hands will make life much nicer for me (not to mention I get company).
Shayna's been running a bit of a low grade fever today so they've started her on an anti-fungal med, along with her 3 antibiotics, just to be safe since she has no immune system. She was breathing on her own a bit today. The ventilator is still going since she's paralyzed but she was taking some extra breaths on her own so you can tell she's not fully paralyzed. No distress with it, so totally normal and okay. Shayna's got an OR booked for Monday morning so it'll be another 2 days before I can hold her again. While I'm really looking forward to that, my work load with also quadruple. I'll have to start sleeping in the hospital so no more 10hr sleeps like last night.
I went for a walk with Melinda (instead of download pics for the blog, sorry). It's snowy in Pittsburgh, just enough to dust the trees and grass. It was a little chilly but beautiful to walk around the old "park" next to the hospital (so nice not to have to walk next to the noisy streets).
Saturday, December 5, 2009
Friday, December 4, 2009
Day 3
Not a whole lot to report today. Shayna's liver numbers keep coming down along with her bilirubin and coagulation/clotting times. This all means that her new liver is functioning well. She's well out of the woods for acute rejection, which is basically a instantaneous, or near instantaneous, rejection of the new organ. We are firmly in the battle we will fight for the rest of her life of long term rejection.
So I was a little misinformed this morning. There is still some fluid in her right lung as of this morning but it looked much better than yesterday (I saw the xrays). She's still puffy so they've added a new diuretic (I'm learning all the new drugs' names but it's a slow steady process and I don't remember that one just yet) and more albumin.
(1pm...3pm)
I just watched her get her dressing changed again. The doc's are confident they'll be able to close her fully Sunday or Monday when they go to do that.
Michael and I visited Nahum around noon today. He tires easily but is doing awesome otherwise. He's probably had all his iv's removed by this time so is totally off the morphine button. After that he got to take his first shower, for which Hilary was grateful. He can move adeptly from bed to chair and back again and even cross his legs. It was exactly a week ago he did his last 90 minute run. Today he took his first walk for about 300' and declared it was just as difficult as that run. His doctors are pleased with his progress and say much of it is due to his getting into good shape before hand. What a trouper.
I continue to enjoy home cooked meals by Michael. He brought his favorite cookbook with him and has been picking meals out for us. He and Melinda do all the shopping and chopping together then visit me with yummy food that also makes my body feel good when I eat it. I don't know what we'll do when Melinda leaves, besides cry. She's on duty as guardian ad litem for some time in Dec plus she's got some court dates.
I'm enjoying a quite evening now with my angel. She's got her blue flower hat on again. I'll take a picture for tomorrow.
So I was a little misinformed this morning. There is still some fluid in her right lung as of this morning but it looked much better than yesterday (I saw the xrays). She's still puffy so they've added a new diuretic (I'm learning all the new drugs' names but it's a slow steady process and I don't remember that one just yet) and more albumin.
(1pm...3pm)
I just watched her get her dressing changed again. The doc's are confident they'll be able to close her fully Sunday or Monday when they go to do that.
Michael and I visited Nahum around noon today. He tires easily but is doing awesome otherwise. He's probably had all his iv's removed by this time so is totally off the morphine button. After that he got to take his first shower, for which Hilary was grateful. He can move adeptly from bed to chair and back again and even cross his legs. It was exactly a week ago he did his last 90 minute run. Today he took his first walk for about 300' and declared it was just as difficult as that run. His doctors are pleased with his progress and say much of it is due to his getting into good shape before hand. What a trouper.
I continue to enjoy home cooked meals by Michael. He brought his favorite cookbook with him and has been picking meals out for us. He and Melinda do all the shopping and chopping together then visit me with yummy food that also makes my body feel good when I eat it. I don't know what we'll do when Melinda leaves, besides cry. She's on duty as guardian ad litem for some time in Dec plus she's got some court dates.
I'm enjoying a quite evening now with my angel. She's got her blue flower hat on again. I'll take a picture for tomorrow.
Liver Pic Password
For those of you with a strong stomach and a curious nature, I've posted some password protected pictures of Shayna. In here you'll see her open stomach, its dressing change, more Shayna on ventilator pictures, and any other pics I think the general public couldn't handle with the normal daily pics I put on FB.
Password: SeeMyLiver
The night went well. Her O2 levels are up and strong, there's no fluid in her lungs, and she's deflating a bit. I'll post more details at the end of the day.
Password: SeeMyLiver
The night went well. Her O2 levels are up and strong, there's no fluid in her lungs, and she's deflating a bit. I'll post more details at the end of the day.
Thursday, December 3, 2009
Missing Shayna
It's getting harder and harder just playing with an inanimate doll. The nurses and I personify her like Nahum and I did when she was still in the womb. I like being with her, just holding her hand or massaging her legs but I want to play with her again, see her pick up her basketball, or just hold her. The doctors think it'll probably be Sunday when they close her if her deflation goes according to plan. I'll be able to hold her and feed her and she'll be able to interact with life again soon enough, but the waiting is hard.
I guess I'll just have to enjoy the full nights of sleep that I get and the fact that I have so much control over my time. I better use it to go for a nice long walk tomorrow in the "park" next to the hospital.
I forgot to share her lastest learning experience. She can drink out of a sippy cup as of the wee morning hours of Tuesday Dec 1. I stopped feeding her just after midnight, but (after talking with a certain doctor back home) new that water wouldn't do any harm or cause as much trouble if I was caught so contiued to give that up to 5am. What a life saver that was! I ask her, "do you want some water?" and she'd open her mouth like before. I'd squirt some in then take the spout out till she'd opened her mouth again. She'd been clamping down on the mouth piece so I decided to leave it in. Low and behold, she started sucking water out. She'd drink then settle against my chest for some more sleeping. Just having that helped settle her a lot.
I guess I'll just have to enjoy the full nights of sleep that I get and the fact that I have so much control over my time. I better use it to go for a nice long walk tomorrow in the "park" next to the hospital.
I forgot to share her lastest learning experience. She can drink out of a sippy cup as of the wee morning hours of Tuesday Dec 1. I stopped feeding her just after midnight, but (after talking with a certain doctor back home) new that water wouldn't do any harm or cause as much trouble if I was caught so contiued to give that up to 5am. What a life saver that was! I ask her, "do you want some water?" and she'd open her mouth like before. I'd squirt some in then take the spout out till she'd opened her mouth again. She'd been clamping down on the mouth piece so I decided to leave it in. Low and behold, she started sucking water out. She'd drink then settle against my chest for some more sleeping. Just having that helped settle her a lot.
Day 2
Shayna: Minor excitement this morning as her blood O2 levels went down due to her breathing tube getting slightly out of place and some fluid in her lungs. Breathing tube was fixed and they've started her on diuretics both to get the fluid out of her lungs and deflate the rest of her in preparation for a full closing 48-72hrs from now. Her white blood cell (WBC) count is great (no infections), her liver is functioning well (total bilirubin has come down from 12 before to 5.9 this morning), and her blood pressure is staying nice an "high" with only occasional light assistance (they want it "high" because the veins in Nahum's liver are used to it being at adult strength not pediatric so it's some where between). Melinda is with her right now.
MandM: Made a great soup for us last night. So nice to have healthy, tasty food again.
Nahum: Sat in a chair for the first time today. Hilary said he clung to the chair for dear life but needs to be doing it. The sooner he's up and moving, the quicker he gets better and the better he stays. It's also the first step for him seeing Shayna again. He's also been cleared for food again so Hilary brought him some other broth from the soup plus he gets to partake in more great hospital food besides jello. Hopefully MandM can keep cooking so he doesn't have to eat much of the hospital slop. He's having a rough time with the pain medication side effects, which is typical of Nahum's body but gives him excrusiating headaches, so he's not up for visitors today. Michael was going to go but will now go tomorrow. Hilary is still keeping track of him from the start of visiting hours to whenever she's kicked out after visiting hours are over.
Me: I'm doing laundry and filling out the November photo album on facebook.
This pic is from Thanksgiving day with a link to the rest of the album below.
MandM: Made a great soup for us last night. So nice to have healthy, tasty food again.
Nahum: Sat in a chair for the first time today. Hilary said he clung to the chair for dear life but needs to be doing it. The sooner he's up and moving, the quicker he gets better and the better he stays. It's also the first step for him seeing Shayna again. He's also been cleared for food again so Hilary brought him some other broth from the soup plus he gets to partake in more great hospital food besides jello. Hopefully MandM can keep cooking so he doesn't have to eat much of the hospital slop. He's having a rough time with the pain medication side effects, which is typical of Nahum's body but gives him excrusiating headaches, so he's not up for visitors today. Michael was going to go but will now go tomorrow. Hilary is still keeping track of him from the start of visiting hours to whenever she's kicked out after visiting hours are over.
Me: I'm doing laundry and filling out the November photo album on facebook.
This pic is from Thanksgiving day with a link to the rest of the album below.
Wednesday, December 2, 2009
Our Address
Since people have been asking:
Our address is
2311 1/2 Eldridge St.
Pittsburgh, PA 15217
Don't forget the 1/2.
Our address is
2311 1/2 Eldridge St.
Pittsburgh, PA 15217
Don't forget the 1/2.
24hrs
It's been 24hrs with a new liver and Nahum moved out of the TICU with the remaining piece of his. Shayna's getting a little blood right now since all the fluids they've been pushing today have made her's a little thin. She continues to hold her own; though, I keep forgetting to ask the doctors what her new liver is doing. Hopefully I can get a little technical tomorrow.
This is the first time we saw her around 8pm last night. She's a little puffy but otherwise looking good.
Here's a picture of Shayna with last night's nurse Michael who "was sorry he didn't put a hairbow in her hair" after he cleaned her up but he'd "left the bows in his locker by mistake." She got some loving along with her meds while I got some sleep.
This is the first time we saw her around 8pm last night. She's a little puffy but otherwise looking good.
Here's a picture of Shayna with last night's nurse Michael who "was sorry he didn't put a hairbow in her hair" after he cleaned her up but he'd "left the bows in his locker by mistake." She got some loving along with her meds while I got some sleep.
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