The morning started great. Shayna opened her mouth for her bottle and ate 2oz in the first hour post tube-feed with a by-mouth total of 8oz. She cooed for the first time in December as she lay in my arms. PT came by to teach/tell me what I need to be doing with her to get her back in shape. Shayna responded well to a supported sit and the chair they brought that I can lay her in and actually tried to reach for some of her toys. From the chair, she was able to pick up her tissue packet, that she loves to chew on, from her lap and try to get it in her mouth. After a couple misses she got frustrated and flung it from her. I put it back on her lap only to have her toss the offending packet off a few times. Great practice to get her arm strength and coordination back. With our work today, she learning she can move her body herself again. It hurts but not as much as before.
On the down side, she's suffering from withdrawal from the PICU pain med Fentanyl. She's on Methadon to help with that (and the pain) but still had the sweats, was extremely jumpy at slight noise and touch, and jittery in general. It was a frightening experience for Nahum and I. She spent a lot of time in my arms this afternoon and evening getting what comfort and rest she could. She never did nap today but did manage a couple fitful rests with Nahum and I. She seemed a little better at 10pm so I stuck with the plan and Michael is with her tonight so I can sleep (last night I slept from 1am-7am with 4 wake-up calls in between from Shayna, her machines and the nurse). Hopefully she's sleeping now. She's also on her 3rd official fever (over 38.5C or 101.5F) that requires a blood culture. These are common with transplant and often unexplained.
The days just get busier. I'm going to make use of my night away from beeping machines and get to bed.
Saturday, December 12, 2009
Friday, December 11, 2009
Days 9 & 10
Both days are blurry as they we busy and I'm exhausted. Shayna returned to us yesterday. She still doesn't move much, but her mannerisms and reactions are the full Shayna (no more paralytic in her system). Things got better today as she actually pickup one of her tiny ducks and was happy in a supported sit (you have to treat her head like a newborn's as she has too little stomach muscle connection to hold it up on her own yet). She gets more interactive with the world each day as her pain diminishes and her belly heals.
I fed her too much too soon on day 8 so she didn't want to eat yesterday since it had hurt her the day before. I did a lot of coaxing to get 4-1oz feedings during the day (she's on 10ml/hr from 9pm-9am (~4oz total)). I still had to do coaxing today but it was a lot easier with a total of 7oz in 5 feedings. Her feeding tube bothers her a bit as is slides up and down a little which irritates the throat making things a little harder. As she tollerate more food, they'll up her night continuous feeds through the tube. Once she gets her daytime feedings up to 20oz reliably, they'll pull the feeding tube. Right now it really helps both of us to have it in for her night feeds since just picking her up with all her tubes, wires, and sliced belly is a 2 person job. It gives the person on night duty a chance to nap.
Michael and I are switching night time duty. I don't know how I would survive without that as she was really fusy last night so kept him up most of the time. She responds well to him and finds comfort from him, a blessing for all three of us as I get to sleep, Shayna is "happy", and grandpa feels loved by baby.
I almost forgot the biggest news. We moved from the PICU yesterday to a regular room. Our nurses attention is now divided among 3 patients insteads of the 1:1 which sucks but we have a lot more freedom (I can eat in the room, there's a floor fridge for food, more than 2 people can be in the room, etc), a bigger room, and our own bathroom.
Medically Shayna continues to do well. Her liver numbers continue to drop and are nearing normal ranges (T. Bili 3.4 today). She got some more blood due to low red blood cells and was back on diuretics for the day. No fevers.
I'm going to eat a little so I can turn in soon since baby is asleep.
I fed her too much too soon on day 8 so she didn't want to eat yesterday since it had hurt her the day before. I did a lot of coaxing to get 4-1oz feedings during the day (she's on 10ml/hr from 9pm-9am (~4oz total)). I still had to do coaxing today but it was a lot easier with a total of 7oz in 5 feedings. Her feeding tube bothers her a bit as is slides up and down a little which irritates the throat making things a little harder. As she tollerate more food, they'll up her night continuous feeds through the tube. Once she gets her daytime feedings up to 20oz reliably, they'll pull the feeding tube. Right now it really helps both of us to have it in for her night feeds since just picking her up with all her tubes, wires, and sliced belly is a 2 person job. It gives the person on night duty a chance to nap.
Michael and I are switching night time duty. I don't know how I would survive without that as she was really fusy last night so kept him up most of the time. She responds well to him and finds comfort from him, a blessing for all three of us as I get to sleep, Shayna is "happy", and grandpa feels loved by baby.
I almost forgot the biggest news. We moved from the PICU yesterday to a regular room. Our nurses attention is now divided among 3 patients insteads of the 1:1 which sucks but we have a lot more freedom (I can eat in the room, there's a floor fridge for food, more than 2 people can be in the room, etc), a bigger room, and our own bathroom.
Medically Shayna continues to do well. Her liver numbers continue to drop and are nearing normal ranges (T. Bili 3.4 today). She got some more blood due to low red blood cells and was back on diuretics for the day. No fevers.
I'm going to eat a little so I can turn in soon since baby is asleep.
Wednesday, December 9, 2009
Day 8: a full day
This is her favorite position.
Today's highlights were feeding and holding Shayna for the first time, a longer visit from Nahum, and another night of rest thanks to Michael.
I should start off by thanking Michael for doing night duty last night so I could get one more night of sleep. Shayna still just needs an advocate and observer with a little help (mainly to help manage her pain as the nurses are generally afraid to treat pain) and not specifically me yet. I used that to get another 7hr night sleep. Michael had great luck with the nurse practitioner on duty last night as far as she was very attentive of Shayna's signals and observant of her needs.
Shayna was cleared for food by mouth by her surgeons this morning so at 7:30 I gave her her first ounce of breast milk in a week. Boy was she grateful. I made sure the nurse got us a slow flow nipple so she wouldn't wolf down the milk which turned out to be a very good thing. She had to work harder for the ounce but she didn't give herself a bellyache by eating to fast after not eating for a week. We have to take it slow for that reason and the fact that they slice and re-attach her small intestines for the Kasai. She could have an ounce every 3 hours. Since she tolerated that really well the nurse just told me we can up it to 1.5oz/2hrs. She still gets food by vein too.
I got to hold her for the first time this morning and again this afternoon which was wonderful. I was thankful for the previous experience at the end of June. While her current state is about 8-1/2 times worse, I was much more comfortable handling her. She's like any of us in pain. She doesn't want to move from the comfortable position she found but needs to move to promote healing. We still rotate her between a slight lean, flat on back, to a slight lean the other way to keep her from getting bed sores (alone with some other tricks). Holding her is just a new position and the movement she grimaces at to get there is needed too.
Nahum is getting much stronger. He went shopping with Hilary at Whole Food visited Shayna and I for 1-1/2hrs. He even got around the hospital without a wheel chair and is losing his shuffling gate. It's great the see such significant improvement. Keep up the good work Nahum. Tomorrow he's supposed to get us a menorah and candles for Hanukkah. I can't light the candles but I can at least put them in to mark the days. There are some great neighborhood stores a block or two from the house for this.
Tuesday, December 8, 2009
Day 7
It's been 1 week! We'll probably celebrate Liver Day (Dec 1) like we will her birthday. Even when she gets some siblings, I bet it'll be hard not to spoil her as I am excited about the possibilities we now have of a "normal" life for her.
9am
While she is breathing well on her own, she failed her first blood gas check at 8am as she was mad. They'll come back to check again at noon. About 0.4ml of blood tells her blood pH (7.35-7.45) and O2 (over 100) an CO2 (35-45) levels. She did look at me when I walked in and spoke to her this morning.
10am
She's started her 2nd 2-hr breathing on her own test and continues to look relaxed and calm after the breath assistance was turned off on her ventilator.
11:15am
She's off the ventilator and breathing well on her own but still getting a little extra O2 in her face to help the process.
5pm
So it's been a good day. Nahum visited again, Michael spent a lot of time with us, and Shayna's getting grabby and interactive again. She spent some time playing (in a half drugged stuper) with her nurse, grabbing Jess' hand-held computer and exploring her face. Shayna's only need one extra dose of pain meds today and I'm trying to learn from Nahum and Hilary how to keep her comfortable based on what Nahum like and didn't like just after his operation. We got some special visitors. The Pittsburgh Penguin's goalies brought presents (a popup toy and a signed puck). I'm hoping to get some more tubes out this evening. They've been waiting for bowel sounds but not hearing much to pull some so Shayna pooped just to thoroughly prove that something was going on. It's an exciting life we need. The more she can do the sooner she can eat too.
9am
While she is breathing well on her own, she failed her first blood gas check at 8am as she was mad. They'll come back to check again at noon. About 0.4ml of blood tells her blood pH (7.35-7.45) and O2 (over 100) an CO2 (35-45) levels. She did look at me when I walked in and spoke to her this morning.
10am
She's started her 2nd 2-hr breathing on her own test and continues to look relaxed and calm after the breath assistance was turned off on her ventilator.
11:15am
She's off the ventilator and breathing well on her own but still getting a little extra O2 in her face to help the process.
5pm
So it's been a good day. Nahum visited again, Michael spent a lot of time with us, and Shayna's getting grabby and interactive again. She spent some time playing (in a half drugged stuper) with her nurse, grabbing Jess' hand-held computer and exploring her face. Shayna's only need one extra dose of pain meds today and I'm trying to learn from Nahum and Hilary how to keep her comfortable based on what Nahum like and didn't like just after his operation. We got some special visitors. The Pittsburgh Penguin's goalies brought presents (a popup toy and a signed puck). I'm hoping to get some more tubes out this evening. They've been waiting for bowel sounds but not hearing much to pull some so Shayna pooped just to thoroughly prove that something was going on. It's an exciting life we need. The more she can do the sooner she can eat too.
Shayna with Goalies Marc-Andre Fleury and Brent Johnson.
I also added some pictures to my pic site.
"SeeMyLiver"
Breathing
She's on a trial run of breathing on her own since 6am. We'll check blood gasses at 8am. Tube still in and will help after 8am so she doesn't get tired as the goal is to extubate her around 10-11am when the docs are done rounding. The breathing curve on the machine looks good as do her in & out pressures.
Monday, December 7, 2009
Day 6: She's Closed!
Shayna's abdomen is closed and the paralytic was just turned off (3:45pm)! Michael and I are now staring at her, waiting for movement. It may take a while since she was give a narcotic dose just before the paralytic was turned off. I'm gonna go stare a while more.
Day 5 1/2
They'll be closing Shayna this afternoon and taking her off the paralytic right after. She'll start waking up over the following 12-24hrs. I'm happy to be well rested. It took the full week of 8hrs a night to get there but I should be starting the hard part of my hospital stay with a good reserve as I'll be living in Shayna's room from now on. This means that I won't be able to blog daily as I'll be spending much of Shayna's sleeping hours resting myself or showering and taking care of other daily necessities (like eating as I'm not allowed "open food containers" in the PICU).
Shayna is doing well. No more fevers and she looks less and less like the Pillbury Dough Boy and more like scrawny Shayna with each day. Her bilirubin is finally on the decline again (total had been 5.9, 8.6, and 10.7 over the last 3 days) at 8.0 this morning. Her surgeon attributed the increase to swelling at the intestine-liver connection site (as it was a live donor and the live donor needed to keep his bile ducts a Kasai Procedure was performed). As her ultra sounds showed good blood flow through the liver and all her other liver numbers continue to come down with each day, they also knew the liver was functioning well.
We enjoyed a visit from Nahum yesterday. I got to push my first wheel chair too, as he still has a long way to go before he regains his stamina. He looked like me the first time I saw her after transplant. In awe but not sure how to handle/touch her with all the tubes and wires coming off. Hilary came back briefly after Nahum (we're only allowed 2 people at a time, me + guest, so the waiting room is heavily used). She said Shayna sure looks cute, which is nice to hear since she's tubed up too.
This time tomorrow I might be feeding my baby.
Shayna is doing well. No more fevers and she looks less and less like the Pillbury Dough Boy and more like scrawny Shayna with each day. Her bilirubin is finally on the decline again (total had been 5.9, 8.6, and 10.7 over the last 3 days) at 8.0 this morning. Her surgeon attributed the increase to swelling at the intestine-liver connection site (as it was a live donor and the live donor needed to keep his bile ducts a Kasai Procedure was performed). As her ultra sounds showed good blood flow through the liver and all her other liver numbers continue to come down with each day, they also knew the liver was functioning well.
We enjoyed a visit from Nahum yesterday. I got to push my first wheel chair too, as he still has a long way to go before he regains his stamina. He looked like me the first time I saw her after transplant. In awe but not sure how to handle/touch her with all the tubes and wires coming off. Hilary came back briefly after Nahum (we're only allowed 2 people at a time, me + guest, so the waiting room is heavily used). She said Shayna sure looks cute, which is nice to hear since she's tubed up too.
This time tomorrow I might be feeding my baby.
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