We are home at last. We left the hospital yesterday at 3pm. I'm not relaxed yet because we are trying to get the hang of the home equipment we need to use and to Vivian's schedule. It's like the hospital where I stay by Vivian's bed until she falls asleep because otherwise she moves around and tangles herself in the wires and tubes. And, we are working on various appts for her too. At the same time I am encouraging her to eat food by mouth during the day so we can transition off the feeding tube! Small steps are the key. She is drinking her Pediasure by mouth and took almost a half jar of BF(babyfood) sweet potatoes today so far. She is more willing later in the day to eat.
Aside from Vivian I am trying to unpack the many hospital bags (where did they all come from?), reacquaint myself with our home and what we have and what I need to do or shop for! It was nice to sit next to Ken in the evening for a change! And, our towels seem extra fluffy after hospital ware!
Thank you for your continued prayers for Vivian's interest and ability to eat by mouth to perk up!
Love, Keri
Trust in the Lord with all thine heart; and lean not unto thine own understanding. In all thy ways acknowledge him, and he shall direct thy paths. Proverbs 3:4-5
Tuesday, July 19, 2011
Sunday, July 17, 2011
Tomorrow, Tomorrow..You're Only A Day Away!
Hello! Sorry I haven't posted photos for a couple days. They would look about the same though. Vivian loves to get wagon rides and go for walks in her walker. We also carry her around, like to the game room where the boys are playing far too much wii.
She is eating a little bit of pudding or some from jars of baby food they stock at the hospital. She drinks her vanilla flavored Pediasure and takes sips of water. We tried one tiny nibble of pancake this morning and up it came with some formula. So, she is struggling right now with food that has a structure to it or is a finite piece.
If we are discharged tomorrow, it will be later in the day. So, this may be my last post from the hospital, or next to last post before I return the laptop to the hospital. Vivian will need a final heart echo done and a final chest xray. We will meet with a dietician, and a psychologist who specializes in feeding issues. We meet with our hospital social worker who is setting us up with home health. Our hospital physical therapist will be by to see Vivian. And maybe the music therapist will be by...I'll request her too. These other things, while numerous, can be brief. The doctors round between 9 and 10am.
I also just realized Ken has an appt in the late afternoon which means he would be down here at dinner time. We would then get home late..just in time to settle Vivian into bed and get the night time feeding started. We may have to see about rescheduling. That might be a lot to do upon getting home! Well, I'm off to bed. Love, Keri
She is eating a little bit of pudding or some from jars of baby food they stock at the hospital. She drinks her vanilla flavored Pediasure and takes sips of water. We tried one tiny nibble of pancake this morning and up it came with some formula. So, she is struggling right now with food that has a structure to it or is a finite piece.
If we are discharged tomorrow, it will be later in the day. So, this may be my last post from the hospital, or next to last post before I return the laptop to the hospital. Vivian will need a final heart echo done and a final chest xray. We will meet with a dietician, and a psychologist who specializes in feeding issues. We meet with our hospital social worker who is setting us up with home health. Our hospital physical therapist will be by to see Vivian. And maybe the music therapist will be by...I'll request her too. These other things, while numerous, can be brief. The doctors round between 9 and 10am.
I also just realized Ken has an appt in the late afternoon which means he would be down here at dinner time. We would then get home late..just in time to settle Vivian into bed and get the night time feeding started. We may have to see about rescheduling. That might be a lot to do upon getting home! Well, I'm off to bed. Love, Keri
Saturday, July 16, 2011
NG Tube Certified
Just a quick post as I am pretty tired. Today was a better day and looking up. Ken and I each performed the NG tube insertion into Vivian this morning. It went well...better than yesterday's experience. After that my stress level has settled down. I can tell because I am now really looking forward to getting home to familiarity. Vivian did great today. She was willing to eat some applesauce and some pudding too, and she did not throw up today. Whew.
We are biding our time waiting for the weekend to end, so we can get ready for discharge. We are going to ask for discharge on Monday. The only thing, I think, that would hold us back is if we cannot get our home equipment for Vivian's feeding on Monday night. Or, the doctors might want another day of us feeding Vivian here to get a feel for her current eating status, like if it is ramping up or not. She will be done with her taper medications on Sunday at midnight. She is getting so little now it's kind of funny. They bring in a syringe that literally has one drop in it.
It will be interesting to get used to this schedule for nightly feedings which are currently set to 12 hours long. She won't be in bed that whole time, I don't think. Well, I better crawl into bed now. Love, Keri
We are biding our time waiting for the weekend to end, so we can get ready for discharge. We are going to ask for discharge on Monday. The only thing, I think, that would hold us back is if we cannot get our home equipment for Vivian's feeding on Monday night. Or, the doctors might want another day of us feeding Vivian here to get a feel for her current eating status, like if it is ramping up or not. She will be done with her taper medications on Sunday at midnight. She is getting so little now it's kind of funny. They bring in a syringe that literally has one drop in it.
It will be interesting to get used to this schedule for nightly feedings which are currently set to 12 hours long. She won't be in bed that whole time, I don't think. Well, I better crawl into bed now. Love, Keri
Friday, July 15, 2011
Irony and Ornery, I S'pose
I didn't expect the end of our hospital stay to be as stressful as this. I don't want to speak for Ken, but I did not have a clue that feeding would be such a big issue. Oh, man. Vivian smiles and turns her head away. She won't hardly accept her favorites: bananas or vanilla pudding. My entire mission the last three days has been to order whatever foods off the hospital menu and try giving them to Vivian. She took 10 sliver-size bites of things two days ago. Yesterday less than that but did start to drink Pediasure out of her sippy cup. Today not much luck either. I took her for a wagon ride outside on the hospital campus. We sat on a park bench and watched people, traffic and nature. She was so distracted she willing accepted bites of baby food applesauce. I was so excited thinking I could report she ate a jar (50 calories). As we were sitting there she suddenly burped and then just threw it all up. I was so surprised and disappointed. If only...if only... Did I push too much? She willingly accepted each bite. Push the calories vs. try not to have her throw up...what a struggle.
Anyway, I was pretty dejected walking her back up to our floor to report it to our nurse. My mood, I'm embarrassed to say, remained sour throughout the evening. Our fun-filled evening included watching the nurse put the new ng tube into Vivian's nose and stomach. Oh the joy watching our daughter turn red, purple, cry, gag, and proceed to throw up the rest of the calories I worked to get into her today through the Pediasure. And, just think, I get to look forward to when my turn comes up to do the same thing. I don't doubt I can do it. When all is ready it only takes a few seconds to get the tube in, everything else takes longer. It's just the detail that it's MY child. I am the same person that runs to my child in distress to comfort whoever needs it. Wish I could be excused due to conflict of interest.
Interestingly, at midnight last night I didn't mind sharing my opinion with the nurse about taking several tries to get blood pressure on Vivian. It takes several tries to get blood pressure on Vivian...period. It's tricky. The nurses get two to three tries before Vivian gets really ticked off, and then game over because it won't be accurate after that. I woke up to Vivian crying and quite upset while the nurse kept trying. I told her to quit it and get a new machine. She did quit and leave at least. Funny thing THIS evening, a nurse came in to use the blood pressure cuff and inadvertantly discovered the cuff was not the right one to be used with that cord or machine. Well, that was validation.
Tonight after Ken and the boys went down to their room to sleep, I heard a whisper of Vivian's voice for the first time. Oh, yes, believe it. We are still waiting for Vivian's voice to return. We are also waiting for a very huge and ugly bruise on her arm to heal that has been there since surgery. Like every medical staff person asks or remarks on that from day 1, and that is the one thing that about drives me crazy! It's obviously a failed attempt at an arterial line or IV and yet people keep asking us. It wasn't there when we went into the OR but it was there when she came back.
Back to the ng tube stuff. We will take home an oximeter machine too for Vivian to wear nightly. This will set off an alarm in case Vivian pulls the tube out of her tummy and it stays in her throat causing her to aspirate. Hmmm...will I ever sleep again? Goodness. Past experience from others says that tons of kids will try and pull the tube out in their sleep. Actually, Vivian has been very good about this in the hospital...maybe we are catching a break here. If she leaves it alone, we will only have to torture her with this once a week or less.
This point in time is probably the hardest part. Hopefully, it will get easier and less scary. I know in the big picture it is the best for Vivian to get her continuous calories to heal and grow. I hope that overall she will start feeling better than before surgery. And, I hope she will not develop further oral aversion by having the negative stimulus of a tube in her throat all the time. I will try to be more positive in a future post. Love me anyway, Keri
P.S. Yes, the previous photos I have posted look super of Vivian's recovery but don't portray the struggle of eating. Ironic, isn't it?
Anyway, I was pretty dejected walking her back up to our floor to report it to our nurse. My mood, I'm embarrassed to say, remained sour throughout the evening. Our fun-filled evening included watching the nurse put the new ng tube into Vivian's nose and stomach. Oh the joy watching our daughter turn red, purple, cry, gag, and proceed to throw up the rest of the calories I worked to get into her today through the Pediasure. And, just think, I get to look forward to when my turn comes up to do the same thing. I don't doubt I can do it. When all is ready it only takes a few seconds to get the tube in, everything else takes longer. It's just the detail that it's MY child. I am the same person that runs to my child in distress to comfort whoever needs it. Wish I could be excused due to conflict of interest.
Interestingly, at midnight last night I didn't mind sharing my opinion with the nurse about taking several tries to get blood pressure on Vivian. It takes several tries to get blood pressure on Vivian...period. It's tricky. The nurses get two to three tries before Vivian gets really ticked off, and then game over because it won't be accurate after that. I woke up to Vivian crying and quite upset while the nurse kept trying. I told her to quit it and get a new machine. She did quit and leave at least. Funny thing THIS evening, a nurse came in to use the blood pressure cuff and inadvertantly discovered the cuff was not the right one to be used with that cord or machine. Well, that was validation.
Tonight after Ken and the boys went down to their room to sleep, I heard a whisper of Vivian's voice for the first time. Oh, yes, believe it. We are still waiting for Vivian's voice to return. We are also waiting for a very huge and ugly bruise on her arm to heal that has been there since surgery. Like every medical staff person asks or remarks on that from day 1, and that is the one thing that about drives me crazy! It's obviously a failed attempt at an arterial line or IV and yet people keep asking us. It wasn't there when we went into the OR but it was there when she came back.
Back to the ng tube stuff. We will take home an oximeter machine too for Vivian to wear nightly. This will set off an alarm in case Vivian pulls the tube out of her tummy and it stays in her throat causing her to aspirate. Hmmm...will I ever sleep again? Goodness. Past experience from others says that tons of kids will try and pull the tube out in their sleep. Actually, Vivian has been very good about this in the hospital...maybe we are catching a break here. If she leaves it alone, we will only have to torture her with this once a week or less.
This point in time is probably the hardest part. Hopefully, it will get easier and less scary. I know in the big picture it is the best for Vivian to get her continuous calories to heal and grow. I hope that overall she will start feeling better than before surgery. And, I hope she will not develop further oral aversion by having the negative stimulus of a tube in her throat all the time. I will try to be more positive in a future post. Love me anyway, Keri
P.S. Yes, the previous photos I have posted look super of Vivian's recovery but don't portray the struggle of eating. Ironic, isn't it?
Thursday, July 14, 2011
Three Weeks Today and A Learning Curve
Thursday, July 14, 2011
I haven't mentioned this on the blog yet, but we will have to bring Vivian home from the hospital with an NG tube for feeding. It's very important for Vivian to get a certain amount of calories a day for her surgical healing. She does not have any reserve to pull from either while she is recovering and not desiring food, so we can't afford to wait for her to decide she is hungry and will eat.
In the next few days Ken and I will train on how to insert the NG tube into Vivian. She can keep it in for a week before changing. Vivian will most likely need supplemental nightly feedings for the next 6 months or so. I think in the next month and a half, the doctors will evaluate her handling the trauma of the NG tube, and if she continues to have a strong aversion to food, then we can have a simple operation of putting in a G tube. (Just realized I should explain. The NG tube goes through nose down to tummy and can be taken in and out as needed. G tube is put in in operation for direct access to tummy and is removed through another operation).
Admittedly, I am overwhelmed by this and was in no way prepared for feeding issues. Especially since she did not have feeding issues coming into the surgery! The positive side to this is we have a way to get Vivian extra nutrients for growth and brain development and healing. It will actually lift a burden off our shoulders that we have been carrying since the day we were given Vivian. We have been trying to feed Vivian and have her gain weight, and we have succeeded to an extent. She has only gained weight under our care, but slowly. I wish I had known or sought out some of those tricks to ADD calories into her diet. At home now I will add Pediasure to her oatmeal and extra butter on potatoes, etc.
Our discharge forcast is for midnext week.
We would love prayers for us in this new transition and for Vivian to be comforted or at peace with this "not-so-fun" process she will have to repeatedly endure. Love, Keri
![]()
I haven't mentioned this on the blog yet, but we will have to bring Vivian home from the hospital with an NG tube for feeding. It's very important for Vivian to get a certain amount of calories a day for her surgical healing. She does not have any reserve to pull from either while she is recovering and not desiring food, so we can't afford to wait for her to decide she is hungry and will eat.
In the next few days Ken and I will train on how to insert the NG tube into Vivian. She can keep it in for a week before changing. Vivian will most likely need supplemental nightly feedings for the next 6 months or so. I think in the next month and a half, the doctors will evaluate her handling the trauma of the NG tube, and if she continues to have a strong aversion to food, then we can have a simple operation of putting in a G tube. (Just realized I should explain. The NG tube goes through nose down to tummy and can be taken in and out as needed. G tube is put in in operation for direct access to tummy and is removed through another operation).
Admittedly, I am overwhelmed by this and was in no way prepared for feeding issues. Especially since she did not have feeding issues coming into the surgery! The positive side to this is we have a way to get Vivian extra nutrients for growth and brain development and healing. It will actually lift a burden off our shoulders that we have been carrying since the day we were given Vivian. We have been trying to feed Vivian and have her gain weight, and we have succeeded to an extent. She has only gained weight under our care, but slowly. I wish I had known or sought out some of those tricks to ADD calories into her diet. At home now I will add Pediasure to her oatmeal and extra butter on potatoes, etc.
Our discharge forcast is for midnext week.
We would love prayers for us in this new transition and for Vivian to be comforted or at peace with this "not-so-fun" process she will have to repeatedly endure. Love, Keri
Marathon Day
This post refers to Wednesday, July 13, 2011
![]()
Vivian had a big day today. First her feedings have been changed from continuous to night time only. Brianna from PT came this morning and helped Vivian walk. We have Vivian's walker here, and she used that to walk 140 feet!!! (Yesterday she walked 6 feet). Vivian had three or four wagon rides today. We got permission to go outside, and we've been outside at the children's playground. Vivian walked around a little bit there with my support. Vivian also had a bath and shampoo. She took a two hour nap and a one hour nap.
![]()
![]()
Now here's the thing. Her feeds were turned off at 9:45am, and our ongoing goal throughout the day has been to try and get Vivian to start eating. By the way, Ken was here at the hospital with me for the day. Together we tried to entice Vivian with food during different activities. She probably to about a dozen small bites of different things and several sips of water. It is a small succes in terms that she is not completely turning away food, but it is not nearly sufficient for her daily intake. More on this later. Love, Keri
Vivian had a big day today. First her feedings have been changed from continuous to night time only. Brianna from PT came this morning and helped Vivian walk. We have Vivian's walker here, and she used that to walk 140 feet!!! (Yesterday she walked 6 feet). Vivian had three or four wagon rides today. We got permission to go outside, and we've been outside at the children's playground. Vivian walked around a little bit there with my support. Vivian also had a bath and shampoo. She took a two hour nap and a one hour nap.
Tuesday, July 12, 2011
You Won't Believe Your Eyes...
Yes! Vivian got to stand up three times this morning with Brianna from physical therapy and take her first steps to the wagon for a wagon ride!! Vivian will work with Brianna daily until discharge. Afterwards Vivian accepted about 3 sips of water, 2 tiny pinches of apple bread, a tiny bite each of applesauce and chocolate pudding. She is just on a half liter of O2 at 21%. They have weaned one of her taper meds down again. I think the taper meds will continue through the 17th, but we aren't required to stay in the hospital for those. She needs to resume her eating and drinking though.
Vivian is excitedly pointing at the fish in the fish tank during her wagon ride! Love, Keri
Adjustments
Hello! We waited four hours after packing up and finally got transferred to the second floor at 2:30pm this afternoon. Vivian and I both took a nap this evening. She has finally tired out and gone to sleep at 12:15am. Doctor rounds are at 10am tomorrow, and I am anxious to hear Vivian's plan. We want to come home soon. I am tired already of entertaining her in bed connected to wires, and she is tired of being trapped in the bed all the day long. They decreased her two other drugs doses today, and she is tolerating it. I better close for now and head to bed. Love, Keri
P.S. Had to advocate for myself today. They had a crummy couch in the room. You feel like you are falling out of it whether it's couch or bed. I scoped out the empty room next door and saw it had the same type couch as I had in the ICU, so I requested a swap! Never thought I would pine for a particular hospital bed, but some things like this can make all the difference in the world! Goodnight!
P.S. Had to advocate for myself today. They had a crummy couch in the room. You feel like you are falling out of it whether it's couch or bed. I scoped out the empty room next door and saw it had the same type couch as I had in the ICU, so I requested a swap! Never thought I would pine for a particular hospital bed, but some things like this can make all the difference in the world! Goodnight!
Monday, July 11, 2011
Transfer Notice!
PICU rounds came by our room shortly ago, and we are going to be transferred to the second floor today! So is one of our "neighbors" who has been here the same amount of time we have. Will let you know where we are at when we get settled. I'm going to grab a shower now and then pack. Our stuff has "grown" since we have been here. Love, Keri
Less Tubes and Wires for Vivian!
A cardiac surgeon wa by this morning after their rounds and took out Vivian's remaining two chest tubes and her heart pacer wires. She just has canula oxygen, her feeding tube, and her PIC line left. Just wanted to post this quick because Vivian fell back asleep for a little nap right now. Love, Keri
Sunday, July 10, 2011
Awake and Active!
Vivian is still awake at 10:15pm as I start this post. She has been awake for just over 12 hours now today! She just got a small dose of morphine, so maybe she will settle in for the night. Vivian has been a very active girl today playing with her toys, turning pages in her books, pointing at the TV when her Baby Einstein movies are playing. She has sat in mommy's lap and daddy's lap. She has watched as Jaret blew bubbles and tried to pop some. She even tossed a little bean filled football with dad. Yes, her throw is about 18" in length. She kicks her legs, waves her arms and scoots around and claps. And, she spends considerable time trying to get the oxymeter off her big toe.
Really, I'm amazed to watch Vivian all day. Did I mention she is sitting by herself in bed and remaining upright without us supporting her? We did that several times, and she seemed to literally get stronger throughout the day. Our sweet friends Rob and Alissa even babysat Vivian this evening for us, so Ken and I and the boys could go down and grab some dinner! One would think that a child in a bed could not cause trouble but with as busy as Vivian has become, she really gets entangled in her wires and tubes and tries to pull things apart. Rob and Alissa even got to take Vivian for a wagon ride this afternoon with nurse assistance. It takes three people to manuveur all the accessories. (Thank you both for your company and help)!
Today I heard my first rumor from a doctor that we could potentially go to the regular peds floor tomorrow. Also, my day nurse today is guessing that Vivian could get her chest tubes out tomorrow. I don't hold them to these guesses, but it does tell me change is on the horizon. They have tapered her morphine down to 2 mg every 8 hours and probably tomorrow will start to taper the other two meds. I'm curious for cardiac and PICU rounds tomorrow morning since it's Monday -- as in the usual folks are back to check on us.
Oh, I wanted to mention that my posts may get more sporadic now with Vivian awake! It was easy to sit down about the same time each evening and post, but that freedom is going by the wayside. Well, in case you are wondering, Vivian has finally gone to sleep at 10:45pm! Love, Keri
Really, I'm amazed to watch Vivian all day. Did I mention she is sitting by herself in bed and remaining upright without us supporting her? We did that several times, and she seemed to literally get stronger throughout the day. Our sweet friends Rob and Alissa even babysat Vivian this evening for us, so Ken and I and the boys could go down and grab some dinner! One would think that a child in a bed could not cause trouble but with as busy as Vivian has become, she really gets entangled in her wires and tubes and tries to pull things apart. Rob and Alissa even got to take Vivian for a wagon ride this afternoon with nurse assistance. It takes three people to manuveur all the accessories. (Thank you both for your company and help)!
Today I heard my first rumor from a doctor that we could potentially go to the regular peds floor tomorrow. Also, my day nurse today is guessing that Vivian could get her chest tubes out tomorrow. I don't hold them to these guesses, but it does tell me change is on the horizon. They have tapered her morphine down to 2 mg every 8 hours and probably tomorrow will start to taper the other two meds. I'm curious for cardiac and PICU rounds tomorrow morning since it's Monday -- as in the usual folks are back to check on us.
Oh, I wanted to mention that my posts may get more sporadic now with Vivian awake! It was easy to sit down about the same time each evening and post, but that freedom is going by the wayside. Well, in case you are wondering, Vivian has finally gone to sleep at 10:45pm! Love, Keri
Saturday, July 9, 2011
A Little Stronger This Afternoon
I also wanted you all to see how Vivian is getting stronger day by day. In the wagon she could not lift her head. Now she is holding her head up a little better. Ken even allowed her to try sitting on her own for several seconds until she started to slump a little. We are getting Vivian into a sitting position several times a day. I can tell we are getting closer to exiting the ICU because a few days ago we started sharing a nurse with one other patient. So...I have to go find the nurse when we need something sometimes. And, really, there's just not a whole lot of work needed for Vivian. I requested a bath and shampoo for Vivian tonight, but that is on hold because the PICU is getting 5 admits at about the same time. It was somewhat slow when we were admitted, but it is crazy busy here now! I would also like to hold her, but I can't do it by myself because of all the tubes still. Let's pray that Monday will be the day the chest tubes can come out.
Love, Keri
![]()
![]()
Love, Keri
Smiles!
Saturday, July 9, 2011
Make no mistake...that's a smile from Vivian!! Daddy was playing with Vivian. Of course, she also just had her drugs! We are starting to see our little girl's personality today. They are starting to taper her morphine by decreasing the frequency. So, we also see her a little shaky, itchy and cranky at times. A dose of Tylenol this evening is helping with that. The drainage from her chest tubes is down to 70.
Friday, July 8, 2011
Lean On Me
Hello Everyone,
Sorry I haven't posted anything til now. Vivian has been sleeping quite a bit of the day with periods of wakefulness. I have held her for about an hour and a half this morning and then for 3.5 hours this afternoon. She was awake from about 5 to 8pm tonight. I have read books to her, and we watch Baby Einstein movies. While lying down Vivian would reach over and press on her gloworm's tummy to make it sing. We got her sitting up straight different times so she would have some good coughs and keep her lungs open. Vivian even turned pages and touched the textured pictures in her book while leaning on Daddy's shoulder.
![]()
![]()
Vivian is loving her Daddy, I think! Not much changed today regarding her meds, although tonight they are going to reduce the frequency of morphine but keep the same dose. Her chest tubes are not draining much out, and I am anxious tomorrow to hear what the doctors have to say about taking one or both tubes out. We're getting closer, but it still takes time. Love, Keri
P.S. We did get one special treat today of a big smile from Vivian when I started playing a hand clapping hand jive with her. It was brief but awesome!
Sorry I haven't posted anything til now. Vivian has been sleeping quite a bit of the day with periods of wakefulness. I have held her for about an hour and a half this morning and then for 3.5 hours this afternoon. She was awake from about 5 to 8pm tonight. I have read books to her, and we watch Baby Einstein movies. While lying down Vivian would reach over and press on her gloworm's tummy to make it sing. We got her sitting up straight different times so she would have some good coughs and keep her lungs open. Vivian even turned pages and touched the textured pictures in her book while leaning on Daddy's shoulder.
Vivian is loving her Daddy, I think! Not much changed today regarding her meds, although tonight they are going to reduce the frequency of morphine but keep the same dose. Her chest tubes are not draining much out, and I am anxious tomorrow to hear what the doctors have to say about taking one or both tubes out. We're getting closer, but it still takes time. Love, Keri
P.S. We did get one special treat today of a big smile from Vivian when I started playing a hand clapping hand jive with her. It was brief but awesome!
Thursday, July 7, 2011
Once Around the Block!!
6 Pillows, 5 Caring People, 4 Wagon Wheels, 3 Stops for Pictures, 2 Sweet Little Eyes looking All Around, and 1 Blanket! That's what it took for Vivian's first wagon ride around the ICU!! It was a great success. Jaret and Isaac helped with entertainment.
![]()
![]()
![]()
We had Vivian sitting in an upright position today three different times with complete support also. She is very weak and cannot hold her head up as you can see. When we returned to the room from the ride, Daddy held Vivian upright and Mommy gave a few drops of water to Vivian to take by mouth and then one swallow. She is doing so wonderfully and will regain her strength soon, I am sure of it. We appreciate your prayers for Vivian's recovery. She has turned several corners over the last several days and is on a good path, and we patiently wait while her body continues to heal. Love, Keri
We had Vivian sitting in an upright position today three different times with complete support also. She is very weak and cannot hold her head up as you can see. When we returned to the room from the ride, Daddy held Vivian upright and Mommy gave a few drops of water to Vivian to take by mouth and then one swallow. She is doing so wonderfully and will regain her strength soon, I am sure of it. We appreciate your prayers for Vivian's recovery. She has turned several corners over the last several days and is on a good path, and we patiently wait while her body continues to heal. Love, Keri
It's Thursday Again
Vivian is sleeping nicely right now. Let's see, she's had a busy day so far. She did get her arterial line out this morning. And, surprise, her surgeon Dr. Davis stopped back at 2:30pm and took out her peritineum tube. Vivian got really mad at the Dr. and dropped her O2 sat to 42% briefly.
They are increasing her feeds throughout the day. Vivian also had another bath, and I held her for a little over an hour. We also had Vivian sitting up in bed with complete support from Mom. That is very good for her to get fluids out and expand her lungs.
She still has her two chest tubes in. I don't know what the units are, but in the 24 hour period leading up to midnight last night she had a total of 125 output. They would like to see a total output of less than 30 before removal. They plan to keep Vivian in the ICU while she has the tubes.
Ken and the boys are here, and we are going to have dinner together while Vivian sleeps. Love, Keri
They are increasing her feeds throughout the day. Vivian also had another bath, and I held her for a little over an hour. We also had Vivian sitting up in bed with complete support from Mom. That is very good for her to get fluids out and expand her lungs.
She still has her two chest tubes in. I don't know what the units are, but in the 24 hour period leading up to midnight last night she had a total of 125 output. They would like to see a total output of less than 30 before removal. They plan to keep Vivian in the ICU while she has the tubes.
Ken and the boys are here, and we are going to have dinner together while Vivian sleeps. Love, Keri
Wednesday, July 6, 2011
100 Minutes of Bliss
July 6, 2011 2:30pm to 4:20pm
![]()
For almost 2 hours this afternoon Vivian slept in mommy's arms. What a nice treat! She is now back in bed resting. I asked our nurse and by her guesstimate we could go to the regular peds floor maybe on Friday. We'll see how it goes.
They stopped her feeds to her small intestine early this morning for two reasons. One was for the extubation. The other is because in Vivian's wiggling around the tube got pulled back into her tummy. So, it's not a TP tube anymore--now it's a second NG tube. They are going to start her feeds again slowly at something like 10cc per hour if she's ready this evening.
![]()
Here is Vivian back in bed propped with pillows. Her right arm is covered with the arterial line accessories.
Tomorrow Vivian will get her arterial line out and hopefully the NG tube** that was used for suctioning and ulcer prevention. Thanks for the verses sent to me and for your continued prayers! Love, Keri
**5:25pm The doctors just walked by and told Stephanie our nurse to take out the NG tube now, so that's done. The white tape on her nose is gone now. Also, they turned off the Milinone (sp?). That was a medication that lightened the load on her heart. Wow, we really are losing meds and tubes today!
For almost 2 hours this afternoon Vivian slept in mommy's arms. What a nice treat! She is now back in bed resting. I asked our nurse and by her guesstimate we could go to the regular peds floor maybe on Friday. We'll see how it goes.
They stopped her feeds to her small intestine early this morning for two reasons. One was for the extubation. The other is because in Vivian's wiggling around the tube got pulled back into her tummy. So, it's not a TP tube anymore--now it's a second NG tube. They are going to start her feeds again slowly at something like 10cc per hour if she's ready this evening.
Here is Vivian back in bed propped with pillows. Her right arm is covered with the arterial line accessories.
Tomorrow Vivian will get her arterial line out and hopefully the NG tube** that was used for suctioning and ulcer prevention. Thanks for the verses sent to me and for your continued prayers! Love, Keri
**5:25pm The doctors just walked by and told Stephanie our nurse to take out the NG tube now, so that's done. The white tape on her nose is gone now. Also, they turned off the Milinone (sp?). That was a medication that lightened the load on her heart. Wow, we really are losing meds and tubes today!
Extubated And Resting!!!!
Vivian got her breathing tube out at 10:45am and did quite a bit of coughing which is good. Her job is to move yucky stuff out of her lungs. And, they turned off her morphine drip. The remaining goals today are for Vivian to rest comfortably, and also later on this afternoon to get her up out of bed once and into a chair.
I will post more later as I learn anything about her medicine tapers or anything else. Love, Keri
I will post more later as I learn anything about her medicine tapers or anything else. Love, Keri
Tuesday, July 5, 2011
In the Rumor Mill Again
July 5, 2011 Vivian napping today
![]()
Vivian had a good night, and there was talk in this morning's rounds about extubating her tomorrow. We'll see if everything holds. Her temperature has come down to about 37.7 degrees C. They are going to give her steroids to help the swelling go down in her throat since she has had the breathing vent for so long.
She has had two pressure trials today to test her breathing and she has done well. Vivian is showing by different indicators that she will handle being off the breathing vent and going to a nose canula with oxygen. We learned that a child can be breathing adequately on the vent but not do well if off due to heavy meds, etc. So, that's what they are preparing and testing Vivian to make sure she will pick up the work of breathing on her own and not be "lazy" or tired. I'm a little nervous, but the staff said she is doing well.
That's all for now.
She has had two pressure trials today to test her breathing and she has done well. Vivian is showing by different indicators that she will handle being off the breathing vent and going to a nose canula with oxygen. We learned that a child can be breathing adequately on the vent but not do well if off due to heavy meds, etc. So, that's what they are preparing and testing Vivian to make sure she will pick up the work of breathing on her own and not be "lazy" or tired. I'm a little nervous, but the staff said she is doing well.
That's all for now.
Monday, July 4, 2011
Resting, Waiting, Praying...
Hopefully, the IV morphine will get turned off tonight sometime. Vivian is resting nicely right now. We went out for dinner at Appleby's this evening and when we returned, the isolation was discontinued. She tested negative for viral, but her fever is still a mystery. I am so hoping she will turn a good corner and recover from this starting with a good night. Anyway, we also learned they do need to decrease her oral meds too in order to get off the vent. We are still moving in that direction. It's nice she got the Foley (urine cath) out today at noon. We anticipate each tube removal because it certainly does not happen quickly!
Tonight we went up to the top floor rooftop patio and watched the fireworks. They were nice but too far away to hear the crackles or booms. Tonight is also the last night for Ken and the boys. They will return home tomorrow sometime. Ken needs to get into work Wed, Thurs, and Fri. And, it looks that we will be in the PICU through next weekend. Lord, give me strength for each day as I write this. Right now it seems like a long time from now.
Our two PICU "neighbors" have their kids off the vent now, and they are holding their little ones. We are thrilled for them. And, I am confident Vivian is on God's timing, and I keep praying she will conquer this obstacle and continue to heal. It's hard though that I'm not tall enough to lean over and give Vivian a kiss on her forehead or cheek. I kiss her leg or foot to say goodnight. Speaking of, I am exhausted and will turn in for the night. Love, Keri
P.S. If any of you have any favorite bible verses/passages that you go to for strength, patience, comfort, please email them to me at cmc-keri@mchsi.com. I would love to read through them and be thinking of them through our days here.
Tonight we went up to the top floor rooftop patio and watched the fireworks. They were nice but too far away to hear the crackles or booms. Tonight is also the last night for Ken and the boys. They will return home tomorrow sometime. Ken needs to get into work Wed, Thurs, and Fri. And, it looks that we will be in the PICU through next weekend. Lord, give me strength for each day as I write this. Right now it seems like a long time from now.
Our two PICU "neighbors" have their kids off the vent now, and they are holding their little ones. We are thrilled for them. And, I am confident Vivian is on God's timing, and I keep praying she will conquer this obstacle and continue to heal. It's hard though that I'm not tall enough to lean over and give Vivian a kiss on her forehead or cheek. I kiss her leg or foot to say goodnight. Speaking of, I am exhausted and will turn in for the night. Love, Keri
P.S. If any of you have any favorite bible verses/passages that you go to for strength, patience, comfort, please email them to me at cmc-keri@mchsi.com. I would love to read through them and be thinking of them through our days here.
One Step Back--Temporary Isolation
Let's see...two of the IV sedation meds Dex and Versed are getting turned off now, and the IV morphine is going from 20 to 10. The oxygen they have been giving her..we were at 30 but had to go back up to 60 and now she is down to 40%. They are taking out the urine catheter today and will just weigh her diapers. One less place for an infection source.
Vivian has had a temperature over the last few days, and the doctors are trying to find the source of that. Cultures have been drawn and are checked over multiple days to see if there is anything growing. Vivian's CO2 has been up higher than desired too. It's down from 60 to 57% now. The preferred range is 35 to 50%. They also do other preventative measures like everyone gowning up before coming into Vivian's room, and our nurse is changing all the drips for precaution.
I guess a lot of times it is two steps forward and one step back. This is a one step back day in terms of getting her breathing vent off. It's not going to be considered for today or tomorrow now. Ugh, how frustrating. It is suspected that she could have a little respirator-induced pneumonia or a virus which is not uncommon for being on the vent for this long. But, all her readings otherwise are doing well. She is urinating and having bowel movements. Her O2 sats are at 80%.
She spent a lot of time awake and shifting around through the night. Then she would drift off for a bit and pop awake again. She kept the night nurse busy coming in to scoot her up in bed, and it wouldn't be long before Vivian was scooting around again. She's actually trying to turn over so she can get up--I can tell by her movements. All the moving around is a good thing though.
What a long haul for Vivian this has been. Please keep the prayers coming. Thanks! Love, Keri
Vivian has had a temperature over the last few days, and the doctors are trying to find the source of that. Cultures have been drawn and are checked over multiple days to see if there is anything growing. Vivian's CO2 has been up higher than desired too. It's down from 60 to 57% now. The preferred range is 35 to 50%. They also do other preventative measures like everyone gowning up before coming into Vivian's room, and our nurse is changing all the drips for precaution.
I guess a lot of times it is two steps forward and one step back. This is a one step back day in terms of getting her breathing vent off. It's not going to be considered for today or tomorrow now. Ugh, how frustrating. It is suspected that she could have a little respirator-induced pneumonia or a virus which is not uncommon for being on the vent for this long. But, all her readings otherwise are doing well. She is urinating and having bowel movements. Her O2 sats are at 80%.
She spent a lot of time awake and shifting around through the night. Then she would drift off for a bit and pop awake again. She kept the night nurse busy coming in to scoot her up in bed, and it wouldn't be long before Vivian was scooting around again. She's actually trying to turn over so she can get up--I can tell by her movements. All the moving around is a good thing though.
What a long haul for Vivian this has been. Please keep the prayers coming. Thanks! Love, Keri
Sunday, July 3, 2011
Wiggle Worm
They turned down Vivian's two IV meds today from 30 to 20. The doctor was just by and wanted to turn down again, but the nurse requested to hold off until her blood gas results come back. They also turned her third IV med Dexotomonine (sp?) down from 0.5 to 0.25 today. This has been kinda quick in coming down on the IV meds, but Vivian is doing alright so far with it. They can give her extra oral doses if she needs.
Vivian also had two pressure trials today. One was for an hour, and she was successful. That means she took her own breaths that were also deep enough to be productive. During the trial the ventilator acts as a back-up and would take over should she have a problem or struggle or tire out. The second trial was started this evening at 8:15pm and then stopped because Vivian was having some of her usual things done like oral care and tube stripping and suctioning, and she gets pretty mad and messes up the readings.
With her meds reduced, Vivian has become quite a wiggle worm today. I mean really moving her body around and opening and closing her mouth to bite the breathing tube. She scoots down the bed too with the wiggling. And, today she is definitely looking around for us and at everything in the room. At one point Isaac started crying over something and Vivian started crying too (without sound).
We enjoyed lots of company today, and we thank you all for the fellowship.
Vivian also had two pressure trials today. One was for an hour, and she was successful. That means she took her own breaths that were also deep enough to be productive. During the trial the ventilator acts as a back-up and would take over should she have a problem or struggle or tire out. The second trial was started this evening at 8:15pm and then stopped because Vivian was having some of her usual things done like oral care and tube stripping and suctioning, and she gets pretty mad and messes up the readings.
With her meds reduced, Vivian has become quite a wiggle worm today. I mean really moving her body around and opening and closing her mouth to bite the breathing tube. She scoots down the bed too with the wiggling. And, today she is definitely looking around for us and at everything in the room. At one point Isaac started crying over something and Vivian started crying too (without sound).
We enjoyed lots of company today, and we thank you all for the fellowship.
Saturday, July 2, 2011
Just A Quick Update
July 2, 2011 almost 11pm
They turned down Vivian's IV meds from 40 to 30 just shortly ago. And, they turned her breathing rate on the vent down from 15 to 10. She is still doing well. I think they will leave her to rest comfortably for the rest of the night. Of course, I say that, but the nurse still comes in to "strip her tubes" periodically, and examine her, do her oral care, and shift her around in bed, etc. She got yet another bath this morning too.
I think I will turn in for the night. Love, Keri
They turned down Vivian's IV meds from 40 to 30 just shortly ago. And, they turned her breathing rate on the vent down from 15 to 10. She is still doing well. I think they will leave her to rest comfortably for the rest of the night. Of course, I say that, but the nurse still comes in to "strip her tubes" periodically, and examine her, do her oral care, and shift her around in bed, etc. She got yet another bath this morning too.
I think I will turn in for the night. Love, Keri
Weaning Off Some Meds
Saturday, July 2, 2011
Vivian is doing very well today and resting comfortably. They have weaned two of her IV drugs (Morphine and Versed) from 80 to 60 and now to 40. The third one they won't do anything with until tomorrow. They have also turned the vent rate down so that her body is doing more of the work for breathing. So, I have seen glimpses of Vivian today, even as I write this post. She opened her eyes and turned her head and looked at me or the machines behind me. She has moved her arms and legs around too. So this is exciting to see! They would like her to move around a bit to help get the fluid moved out of her body. That's another factor determining when she can get her breathing tube out.
We took the boys on the cambus downtown to the Jazz Festival for a little bit and had lunch down there. It was nice to get out. We were gone about 3 hours.
Vivian is doing very well today and resting comfortably. They have weaned two of her IV drugs (Morphine and Versed) from 80 to 60 and now to 40. The third one they won't do anything with until tomorrow. They have also turned the vent rate down so that her body is doing more of the work for breathing. So, I have seen glimpses of Vivian today, even as I write this post. She opened her eyes and turned her head and looked at me or the machines behind me. She has moved her arms and legs around too. So this is exciting to see! They would like her to move around a bit to help get the fluid moved out of her body. That's another factor determining when she can get her breathing tube out.
We took the boys on the cambus downtown to the Jazz Festival for a little bit and had lunch down there. It was nice to get out. We were gone about 3 hours.
Friday, July 1, 2011
Our Little Pink Princess
Here's a photo of little Vivian amongst all her medical machines.
Daddy Lovin' His Little Girl
Mommy found a little tiara for Vivian. She has made quite the cute impression all day bringing smiles and giggles to all the doctors and medical staff.
![]()
Day 9 in PICU, Day 8 Post-Op
July 1, 2011
Today would have been my mom's birthday, so Happy Birthday in Heaven Mom!
Vivian got another refreshing sponge bath this morning and her bedding changed. Her plan today is to start the oral medicines in her TP tube. Her intestines are still kind of sleepy, so we'll see how it goes. I guess these oral meds are the tapers that will help her come off the IV narcotics. One of the three is oral morphine, but she can go to a regular floor with the oral meds, not the IV drugs.
Some things I say probably contradict what I write in an earlier post, but it is the flow of days, and they make changes each day or at different times. The guess right now is Vivian coming off the breathing vent somewhere between next Monday and Wednesday.
Sorry I haven't mentioned about Vivian herself. She does open her eyes and look around, but she's so groggy that takes a lot of effort. She raises her arms a little, wiggles her toes, and once in a while will try to shift her torso. I can only imagine the grand amount of effort this takes because of the sedation, the weakness of not using muscles in 8 days and not having hardly any calories for energy. Sometimes she gets upset and cries which I think I described earlier as an expression on her face and her little body shakes but no sound. I have her Elmo doll her which makes noise with talk and laugh. I have to keep the toy quiet because Vivian gets upset. It's her favorite, and she would probably like to play with it.
Thanks so much for your continued prayers. Several people have had trouble posting comments to the blog. I don't know what I can do to fix it, but please feel free to email me. I check my email several times daily.
Love, Keri
Ken and our boys are coming this morning, and he is bringing our USB cable, so we can upload more photos. Last time we borrowed one from the library, but they have just one.
I guess it is really hot outside. The PICU in particular is kept fairly cool, and I've adjusted to that. I get warm now even going to other floors in the hospital.
Today would have been my mom's birthday, so Happy Birthday in Heaven Mom!
Vivian got another refreshing sponge bath this morning and her bedding changed. Her plan today is to start the oral medicines in her TP tube. Her intestines are still kind of sleepy, so we'll see how it goes. I guess these oral meds are the tapers that will help her come off the IV narcotics. One of the three is oral morphine, but she can go to a regular floor with the oral meds, not the IV drugs.
Some things I say probably contradict what I write in an earlier post, but it is the flow of days, and they make changes each day or at different times. The guess right now is Vivian coming off the breathing vent somewhere between next Monday and Wednesday.
Sorry I haven't mentioned about Vivian herself. She does open her eyes and look around, but she's so groggy that takes a lot of effort. She raises her arms a little, wiggles her toes, and once in a while will try to shift her torso. I can only imagine the grand amount of effort this takes because of the sedation, the weakness of not using muscles in 8 days and not having hardly any calories for energy. Sometimes she gets upset and cries which I think I described earlier as an expression on her face and her little body shakes but no sound. I have her Elmo doll her which makes noise with talk and laugh. I have to keep the toy quiet because Vivian gets upset. It's her favorite, and she would probably like to play with it.
Thanks so much for your continued prayers. Several people have had trouble posting comments to the blog. I don't know what I can do to fix it, but please feel free to email me. I check my email several times daily.
Love, Keri
Ken and our boys are coming this morning, and he is bringing our USB cable, so we can upload more photos. Last time we borrowed one from the library, but they have just one.
I guess it is really hot outside. The PICU in particular is kept fairly cool, and I've adjusted to that. I get warm now even going to other floors in the hospital.
Subscribe to:
Posts (Atom)