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.
Friday, December 4, 2009
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.
Day 1
Both Nahum and Shayna are doing well. With Shayna unconscious, I was able to visit Nahum today which was a pleasant surprise for both of us. Melinda and I walked from Children's to Montefiore (about 2.3mi so we got our exercise for the day and some good time together) while Michael spent some time with Shayna. Nahum was just having his first food by mouth when I got there, some jello and apple juice, and was able to talk with me a little. He says it's not that painful, which is saying a lot for him, but it really hurts when he coughs. They'll be moving him from the TICU (transplant ICU) today as soon as they get a room in the hospital open. Hilary is proving her worth in gold by not only keeping after the staff to keep Nahum comfortable but also making sure Nahum follows his doctors' instruction (like keeping his nose oxygen tubing in place). I showed him some pictures of Shayna so he got to see and not just hear that his princess is doing well.
Shayna continues to be weaned down on her various medications and fully off of one late this morning. She is doing beautifully. Her nurse like to keep her door shut since Shayna has show more sensitivity to noise and talking (by the heart rate and blood pressure numbers). It makes me feel a lot better seeing someone be so observant to Shayna's sensitivity (she is normally a sensitive, serious little girl). I got to watch them change the dressing on her open belly. Pretty cool to actually see her new liver inside her. I haven't gotten to see the old one yet. I still hope to but keep forgetting to ask when the doctors come by.
I'm going to go hold my daughters hand again.
Shayna continues to be weaned down on her various medications and fully off of one late this morning. She is doing beautifully. Her nurse like to keep her door shut since Shayna has show more sensitivity to noise and talking (by the heart rate and blood pressure numbers). It makes me feel a lot better seeing someone be so observant to Shayna's sensitivity (she is normally a sensitive, serious little girl). I got to watch them change the dressing on her open belly. Pretty cool to actually see her new liver inside her. I haven't gotten to see the old one yet. I still hope to but keep forgetting to ask when the doctors come by.
I'm going to go hold my daughters hand again.
Tuesday, December 1, 2009
Closing
I (Patricia) was called at 6:15 to let me know they were closing Shayna. The nurse estimated it would be about an hour or so until they finished closing. There's still more to do in the OR after they close but we should hear from one of her surgeons at that time. We (Michael, Melinda, and I) are waiting in the family waiting room for the first time today.
I've been trying to relax and catch up on some of my missed sleep today. I spoiled myself with french toast for breakfast (Children's Hospitals actually have decent/good food) and some Whole Food buffet for lunch/dinner, took 2-1/2 naps at my Ronald McDonald room (the building is attached to the hospital), and enjoyed chatting and joking with my folks. (I like hanging out with them because we'll do things like take the stairs down from our 11th floor Ronald McDonald room.)
It's 7pm and she's now in the PICU where they're setting up all her various connecting wires and tubes. We can see her in about 30minutes. Her surgeon Dr. Soltys just came to talk with us. The surgery went well. They ended up not needing the cataveric portal vein as her vein was only clotted off at the top. They decided not to close her (they could have closed her skin but not her muscles) since the muscles were so close to being able to be closed so there is a mesh covering over her belly opening keeping everything in. That'll get changed and cinched up every day until the organ swelling goes down enough that the abdominal wall can be fully closed. They expect to be able to do that some time in the next 5 days (this is common). In the mean time she will be fully unconcious with a breathing tube (this means I get to sleep the whole night through so she'll get a well rested mother when she wakes up). She'll be getting iv nutrients while we wait.
It feels weird. Just another hurry up and wait. There won't be a whole lot to do in the next few days for Shayna but I still want someone with her at all times. That may change as I learn more about the PICU sittuation. It's a 1:1 nurse ratio so she'll get plenty of attention. We won't be able to hold her, just sit next to her, stroke her hair, and hold her hands.
I've been trying to relax and catch up on some of my missed sleep today. I spoiled myself with french toast for breakfast (Children's Hospitals actually have decent/good food) and some Whole Food buffet for lunch/dinner, took 2-1/2 naps at my Ronald McDonald room (the building is attached to the hospital), and enjoyed chatting and joking with my folks. (I like hanging out with them because we'll do things like take the stairs down from our 11th floor Ronald McDonald room.)
It's 7pm and she's now in the PICU where they're setting up all her various connecting wires and tubes. We can see her in about 30minutes. Her surgeon Dr. Soltys just came to talk with us. The surgery went well. They ended up not needing the cataveric portal vein as her vein was only clotted off at the top. They decided not to close her (they could have closed her skin but not her muscles) since the muscles were so close to being able to be closed so there is a mesh covering over her belly opening keeping everything in. That'll get changed and cinched up every day until the organ swelling goes down enough that the abdominal wall can be fully closed. They expect to be able to do that some time in the next 5 days (this is common). In the mean time she will be fully unconcious with a breathing tube (this means I get to sleep the whole night through so she'll get a well rested mother when she wakes up). She'll be getting iv nutrients while we wait.
It feels weird. Just another hurry up and wait. There won't be a whole lot to do in the next few days for Shayna but I still want someone with her at all times. That may change as I learn more about the PICU sittuation. It's a 1:1 nurse ratio so she'll get plenty of attention. We won't be able to hold her, just sit next to her, stroke her hair, and hold her hands.
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