As of last night, Olivia is in the PICU again with excess fluid around her heart and lungs. The medical staff is trying to get that fluid out of her body by medication instead of drawing it out with a needle. So far it is working, but we were told we'd be here for another two or three days as they monitor her.
Thanks for keeping her in prayer!
Sunday, August 02, 2009
Saturday, July 25, 2009
Olivia is Home!
Sorry for not posting, but we were able to go home the afternoon/evening of the 21st and it has been maintenance mode since then. Here’s what happened in the meantime.
Olivia’s 12th Day: The day began at 3:30am with lots of people coming and going, full assessments, vitals, meds, the leaking neck IV had to come out, x-rays, projectile vomiting, removing the drainage tubes (very painful), more x-rays, and lots of tears and screaming. But because her drainage has decreased and the tubes are out, she could be going home very soon. Incredible!
Monday Afternoon: After a few rounds of x-rays, they saw a large pocket of air trapped in her chest that needs to be absorbed or dispersed. She’s back on oxygen and an O2 monitor whenever she is in bed. We’ve been trying to keep her moving and walking to deal with the trapped air. Amy is on the way to the hospital with the kids for play/interaction time!
First Evening at Home: At some point in the evening, Olivia was apparently standing between Kayla and the show on TV. Instead of asking her to move, Kayla kicked her in the chest. A long, serious chat ensued.
We returned to the hospital two days after leaving to take the stitches out and get more x-rays. The stitches didn’t hurt coming out and the x-rays show no change: still a pocket of air in her ribcage area, but it is not alarming. Olivia complains of leg pain and sensitivity at times, but she is mostly good. Mornings seem to be the worst because she hasn’t had any pain medicine through the night. At the appointment they said we could take her off the ibuprofen, but she still needs a little something throughout the day. We’re gonna keep her on it.
We have been blessed by such an overwhelming show of support these last few weeks. Thank you to all who have prayed and served us in the hundred practical ways! We are so grateful to see everyone’s heart for our little girl and we appreciate all the prayers. Thank you!
Olivia’s 12th Day: The day began at 3:30am with lots of people coming and going, full assessments, vitals, meds, the leaking neck IV had to come out, x-rays, projectile vomiting, removing the drainage tubes (very painful), more x-rays, and lots of tears and screaming. But because her drainage has decreased and the tubes are out, she could be going home very soon. Incredible!
Monday Afternoon: After a few rounds of x-rays, they saw a large pocket of air trapped in her chest that needs to be absorbed or dispersed. She’s back on oxygen and an O2 monitor whenever she is in bed. We’ve been trying to keep her moving and walking to deal with the trapped air. Amy is on the way to the hospital with the kids for play/interaction time!
First Evening at Home: At some point in the evening, Olivia was apparently standing between Kayla and the show on TV. Instead of asking her to move, Kayla kicked her in the chest. A long, serious chat ensued.
We returned to the hospital two days after leaving to take the stitches out and get more x-rays. The stitches didn’t hurt coming out and the x-rays show no change: still a pocket of air in her ribcage area, but it is not alarming. Olivia complains of leg pain and sensitivity at times, but she is mostly good. Mornings seem to be the worst because she hasn’t had any pain medicine through the night. At the appointment they said we could take her off the ibuprofen, but she still needs a little something throughout the day. We’re gonna keep her on it.
We have been blessed by such an overwhelming show of support these last few weeks. Thank you to all who have prayed and served us in the hundred practical ways! We are so grateful to see everyone’s heart for our little girl and we appreciate all the prayers. Thank you!
Saturday, July 18, 2009
Olivia’s Tenth Day
Olivia is napping at the moment. Over the past few days we have had many conversations about which labs to draw, if any, and when and how to draw them. The options of a mid line or a PICC line have been discussed at length, but we have found other options that did not involve poking her again, so we have chosen those. Her one and only IV, which is in the left side of her neck, has held up so far. I did notice today that is has come out about one-quarter inch, but it is not leaking so I hope it will still hold for however long we need it. The options are not fun.
Amy has come out every day and played with Olivia a lot. Yesterday they got out of the room and spent the day meandering the hospital. There are lots of lights and colors, a toy train that rides on an overhead track, and large Seuss-ish plastic creatures that hang from the ceiling and slowly turn. These seem to keep her attention pretty well and take her focus off how she feels at the moment. Olivia loved being carted around so much yesterday that she was quite unhappy to be put back into her bed that evening.
Design thought for a children’s hospital: putting fun things just out of reach is a great way to get kids up on their feet and working their bodies in a way they haven’t done for a little while. It’s just enough motivation to encourage movement, which helps the healing process. Good job, Children’s Mercy!
In just a bit, Amy will be arriving here at the hospital with Kayla and Maddie. I’ll have the three girls in the hospital for a few hours. We’re gonna play a few games, have a small meal, and allow them to be around each other for a bit.
I spent time at home with the other kids yesterday; first time in nine days. While Amy was with Olivia at the hospital, I came home at nap time and stayed until all the kids were asleep. The kids were having emotional meltdowns so we thought it would help for Amy and me to switch spots for a few hours. However, it seems that they now know exactly what they were missing, whereas before it was only a generalized frustration without knowing what was missing. It’s very hard to know what the right strategy is in this situation. Should Amy and I switch places every few hours or every few days, or is it better for us to stay in our separate locations until it’s all over? There is not a definitive answer in this situation.
The schedule is going to get real crazy starting today: I still have school, Amy needs to work, I need to work, the kids need attention from both of us, one of us has to stay with Olivia at all times, the lawn and housework needs doing, etc. Many, many people have already pitched in and we are exceedingly grateful to all who have helped already in what ever way they could. Thank you so much!
Amy has come out every day and played with Olivia a lot. Yesterday they got out of the room and spent the day meandering the hospital. There are lots of lights and colors, a toy train that rides on an overhead track, and large Seuss-ish plastic creatures that hang from the ceiling and slowly turn. These seem to keep her attention pretty well and take her focus off how she feels at the moment. Olivia loved being carted around so much yesterday that she was quite unhappy to be put back into her bed that evening.
Design thought for a children’s hospital: putting fun things just out of reach is a great way to get kids up on their feet and working their bodies in a way they haven’t done for a little while. It’s just enough motivation to encourage movement, which helps the healing process. Good job, Children’s Mercy!
In just a bit, Amy will be arriving here at the hospital with Kayla and Maddie. I’ll have the three girls in the hospital for a few hours. We’re gonna play a few games, have a small meal, and allow them to be around each other for a bit.
I spent time at home with the other kids yesterday; first time in nine days. While Amy was with Olivia at the hospital, I came home at nap time and stayed until all the kids were asleep. The kids were having emotional meltdowns so we thought it would help for Amy and me to switch spots for a few hours. However, it seems that they now know exactly what they were missing, whereas before it was only a generalized frustration without knowing what was missing. It’s very hard to know what the right strategy is in this situation. Should Amy and I switch places every few hours or every few days, or is it better for us to stay in our separate locations until it’s all over? There is not a definitive answer in this situation.
The schedule is going to get real crazy starting today: I still have school, Amy needs to work, I need to work, the kids need attention from both of us, one of us has to stay with Olivia at all times, the lawn and housework needs doing, etc. Many, many people have already pitched in and we are exceedingly grateful to all who have helped already in what ever way they could. Thank you so much!
Thursday, July 16, 2009
Blowing It (Veins, That Is)
Thursday Morning, 2am: And things were going so well. Out of two active IVs, the one in her hand just blew to smithereens. [Notice knuckles and forearm in the picture.] I wish I had known that potassium has a tendency to degrade veins in “heart babies.” It would have come in handy three hours ago before we gave it to her. Especially since we’ve had such a hard time getting IVs in and keeping them working.
I hate to do it, but the PICC line must go in pronto tomorrow. In the long run, it will save Olivia more heartache and needle sticks than the alternative that we have been trying to do.
I hate to do it, but the PICC line must go in pronto tomorrow. In the long run, it will save Olivia more heartache and needle sticks than the alternative that we have been trying to do.
Olivia’s Wednesday Night Update
We were moved to a single room today. Olivia has been through so much, she was convinced we were going back into surgery. It wasn’t until we actually got in the room and got settled that she started to calm down—just in time for more assessments, in-processing, blood draws, a breathing treatment, and visits from every medical personnel on the floor. Okay, not every. Moving floors is a tough afternoon.
The nurses took out the feeding tube that went down her nose (nasogastric, or NG tube) and unhooked her from the vacuum drainage system for her chest. She still has three tubes (called Blakes) coming out of her chest, but they are attached to individual compressed bulbs that continue the suction on a lesser level.
There were issues with drawing blood again; seems to be the theme for this round of surgeries. Several “professional blood-letters” were called in and we even used a sonogram to locate a good vein. After a needle poke and a lot of fishing for the vein, I called it off. Drastic options were considered (anesthesia team, mid-line, PICC line), but we finally settled on calling in the transport team—the Red Cross meets the Navy Seals of Children’s Mercy. They managed to salvage an IV already in place and within three minutes we had the blood samples needed. Olivia didn’t feel a thing.
The samples came back with the same results I’ve heard several times: her values are on the low side of good, but not decreasing in any way. Awesome. We’ll take it.
I met the night nurse and we discussed the schedule. She’s all about keeping Olivia comfortable and minimizing the interruptions so she can sleep more than she has to endure interruptions. That’s a good nurse, people: do what is necessary, but do only what is necessarily beneficial.
A few friends dropped by the room with gifts and hugs for the three-year-old super trooper. Bubbles, stickers, and balloons are today’s winners, but Amy was the MVP. The mother’s presence, her songs, and reading to her recovering daughter have no equal. I think that’s in Proverbs. Probably chapter 31.
Olivia is sleeping well now and will only be interrupted once before the sun comes up. It’s a far cry from what the norm has been for the last week.
Here’s two pictures: one right after the first surgery this week and the other this afternoon as she hid from the falling bubbles.
The nurses took out the feeding tube that went down her nose (nasogastric, or NG tube) and unhooked her from the vacuum drainage system for her chest. She still has three tubes (called Blakes) coming out of her chest, but they are attached to individual compressed bulbs that continue the suction on a lesser level.
There were issues with drawing blood again; seems to be the theme for this round of surgeries. Several “professional blood-letters” were called in and we even used a sonogram to locate a good vein. After a needle poke and a lot of fishing for the vein, I called it off. Drastic options were considered (anesthesia team, mid-line, PICC line), but we finally settled on calling in the transport team—the Red Cross meets the Navy Seals of Children’s Mercy. They managed to salvage an IV already in place and within three minutes we had the blood samples needed. Olivia didn’t feel a thing.
The samples came back with the same results I’ve heard several times: her values are on the low side of good, but not decreasing in any way. Awesome. We’ll take it.
I met the night nurse and we discussed the schedule. She’s all about keeping Olivia comfortable and minimizing the interruptions so she can sleep more than she has to endure interruptions. That’s a good nurse, people: do what is necessary, but do only what is necessarily beneficial.
A few friends dropped by the room with gifts and hugs for the three-year-old super trooper. Bubbles, stickers, and balloons are today’s winners, but Amy was the MVP. The mother’s presence, her songs, and reading to her recovering daughter have no equal. I think that’s in Proverbs. Probably chapter 31.
Olivia is sleeping well now and will only be interrupted once before the sun comes up. It’s a far cry from what the norm has been for the last week.
Here’s two pictures: one right after the first surgery this week and the other this afternoon as she hid from the falling bubbles.
Wednesday, July 15, 2009
Hospitals are Weird
Hospitals are weird.
The TV that is paid the most attention to is the one with no entertainment. Ladies with bright colored outfits are expected to interrupt every two hours. Night time in the worst time to try and sleep. A very uncomfortable chair is the best bed in the house. Showers are a luxury. Everyone is in pain, but no one talks about it. The rudest professionals are the best at what they do. Asking a question may get you an answer, but understanding it is a whole other conversation.
The TV that is paid the most attention to is the one with no entertainment. Ladies with bright colored outfits are expected to interrupt every two hours. Night time in the worst time to try and sleep. A very uncomfortable chair is the best bed in the house. Showers are a luxury. Everyone is in pain, but no one talks about it. The rudest professionals are the best at what they do. Asking a question may get you an answer, but understanding it is a whole other conversation.
Olivia’s Wednesday 9am Update
From blood work this morning, all values are steady, x-ray is same as the last two days, and her drainage isn’t doing too bad. We will be moving her to the regular recovery floor any time now.
Just gave her some chocolate milk—first drink that is not water or apple juice. She really likes it. Gotta work her back up to solids after not having anything but juice for the last six days. Nothing like forced hospital fasting!
I have been able to help out a bit with her care. Yesterday I got to help with switching out a catheter in her left jugular artery and with taking out her foot IV. Good experience—and a good way to get over being nauseous—for when I actually start working in the NICU.
Just gave her some chocolate milk—first drink that is not water or apple juice. She really likes it. Gotta work her back up to solids after not having anything but juice for the last six days. Nothing like forced hospital fasting!
I have been able to help out a bit with her care. Yesterday I got to help with switching out a catheter in her left jugular artery and with taking out her foot IV. Good experience—and a good way to get over being nauseous—for when I actually start working in the NICU.
Olivia’s 1am Update, Wednesday Morning
Well, we were moved into a room with another patient today. They are generally quiet, which is nice, but of course everyone would like their own room.
We will almost certainly be moved from the PICU to the regular cardiac recovery floor tomorrow. Blood work, x-rays, and how she is handling recovery will determine that. So far, her levels are on the low side of good, but that doesn’t appear to upset the surgeon or the medical staff at all. It’s just a matter of her body working back up to its normal state once again.
Amy was here for quite a while today and Olivia loved it. Amy read to her, sang songs, played with stickers and balloons, and prayed with her before she left for the night. She’ll be back early tomorrow morning while I go to school for my summer class, after which I will resume my bedside position.
A video of Olivia playing with a balloon, obviously feeling better.
We will almost certainly be moved from the PICU to the regular cardiac recovery floor tomorrow. Blood work, x-rays, and how she is handling recovery will determine that. So far, her levels are on the low side of good, but that doesn’t appear to upset the surgeon or the medical staff at all. It’s just a matter of her body working back up to its normal state once again.
Amy was here for quite a while today and Olivia loved it. Amy read to her, sang songs, played with stickers and balloons, and prayed with her before she left for the night. She’ll be back early tomorrow morning while I go to school for my summer class, after which I will resume my bedside position.
A video of Olivia playing with a balloon, obviously feeling better.
Tuesday, July 14, 2009
Olivia’s 9:30am Update
’Twas a bit rough last night. Olivia cried whenever anyone came near her; the first time this has happened consistently. I’m sure the the nurse didn’t feel too great about that.
This morning’s X-rays came back with a bit of swelling from yesterday’s surgery, but seemingly nothing out of the norm. Blood work was drawn again this morning, but they returned some slightly off values. More blood, calcium, and platelets are being given.
She is very sensitive to having the chest tubes emptied. To do this, the flexible tube is held with one hand at the end closest to the body while the other hand pushes the blood away from the body and down into the collection unit. This creates vacuum pressure inside the abdomen and can be painful if done too quickly. Releasing the still hand slowly is the key to not increasing the pressure too fast.
They wanted to move her to a regular room, but I discussed my concerns with moving her too quickly. I’m trying to finagle one more day to have more focused and constant care in Pediatric ICU. Some of the issues that have arisen over the last several days have done so quite quickly. I feel more reassured in a “constant care” type of environment with one-to-one care than I would on a floor with one nurse for four or six patients.
I have fallen into a pattern of discussing two issues with each nurse at the change of shift: (1) Keep pain medications on a steady schedule so her pain doesn’t get overwhelming, and (2) cluster the care whenever possible. If respiratory therapy and radiology are coming soon, and the nursing assessment must be done around the same time, I'm trying to get them to all come in at the same time rather than interrupting several times over several hours. If they can, they are more than willing to work with that request than most people think.
This morning’s X-rays came back with a bit of swelling from yesterday’s surgery, but seemingly nothing out of the norm. Blood work was drawn again this morning, but they returned some slightly off values. More blood, calcium, and platelets are being given.
She is very sensitive to having the chest tubes emptied. To do this, the flexible tube is held with one hand at the end closest to the body while the other hand pushes the blood away from the body and down into the collection unit. This creates vacuum pressure inside the abdomen and can be painful if done too quickly. Releasing the still hand slowly is the key to not increasing the pressure too fast.
They wanted to move her to a regular room, but I discussed my concerns with moving her too quickly. I’m trying to finagle one more day to have more focused and constant care in Pediatric ICU. Some of the issues that have arisen over the last several days have done so quite quickly. I feel more reassured in a “constant care” type of environment with one-to-one care than I would on a floor with one nurse for four or six patients.
I have fallen into a pattern of discussing two issues with each nurse at the change of shift: (1) Keep pain medications on a steady schedule so her pain doesn’t get overwhelming, and (2) cluster the care whenever possible. If respiratory therapy and radiology are coming soon, and the nursing assessment must be done around the same time, I'm trying to get them to all come in at the same time rather than interrupting several times over several hours. If they can, they are more than willing to work with that request than most people think.
Olivia’s 1am Update
I’ve been trying to monitor the whimpering that Olivia has done. There seems to be a correlation between how much vacuum pressure is present in the drainage tubes in her chest and the amount of moaning she does. After a surgery such as this, there are small, flexible tubes stitched into patient’s chest. These tubes are hooked up to a powered hoover-like contraption (or, Dyson-like, for the younger, cooler folk . . . except not as powerful . . . so I guess it’s closer to a dustbuster. Anyways . . .). The machine creates suction that pulls the extra blood and fluid from the open abdominal cavity so infection is less likely, distention is minimized, and the healing process is pushed along. Of course this vacuum creates internal pressure, which is not comfortable. Hence the moaning.
I noticed some duskiness (grayish-blue coloring) creeping back into her face and something that looked like a section of capillaries which had burst at Olivia’s neckline. I talked with the physician and we ran a bunch of lab tests. We found out her hemoglobin and hematocrit (H&H) levels were fine, but on the slightly low side of fine. Not a problem. However, we found that her blood was too thin so we added two helpings of platelets. This will thicken it up a bit and assist with coagulation. We also found a need to increase some electrolytes, so calcium gluconate was given. Her color looks better now and the neckline issue has basically disappeared.
She has some pain meds on board, so she should be able to sleep decently for the next several hours. A few moans here and there, as far as I am concerned, are more than allowable right now. Her breathing treatment is done for the night.
Even in the midst of her pain, Olivia smiled a few times tonight, which is great. And she really loves her juice. She asks for it at every opportunity—and I give it to her.
I noticed some duskiness (grayish-blue coloring) creeping back into her face and something that looked like a section of capillaries which had burst at Olivia’s neckline. I talked with the physician and we ran a bunch of lab tests. We found out her hemoglobin and hematocrit (H&H) levels were fine, but on the slightly low side of fine. Not a problem. However, we found that her blood was too thin so we added two helpings of platelets. This will thicken it up a bit and assist with coagulation. We also found a need to increase some electrolytes, so calcium gluconate was given. Her color looks better now and the neckline issue has basically disappeared.
She has some pain meds on board, so she should be able to sleep decently for the next several hours. A few moans here and there, as far as I am concerned, are more than allowable right now. Her breathing treatment is done for the night.
Even in the midst of her pain, Olivia smiled a few times tonight, which is great. And she really loves her juice. She asks for it at every opportunity—and I give it to her.
Monday, July 13, 2009
Olivia’s 10:15pm Update
Olivia has had a heck of a day. She’s in some pain now, so we are working to control it and minimize the side effects of pain meds (slowed breathing, intestinal issues, etc.). She moans every thirty minutes or so, so it could be a long night. Surgery seems successful though. I'm gonna eat as soon as she’s asleep.
In the meantime, here is a picture of her now. It’s sad and cute all at once because the scowl doesn’t go away, but it has a real good reason for being there.
In the meantime, here is a picture of her now. It’s sad and cute all at once because the scowl doesn’t go away, but it has a real good reason for being there.
Two Quick Updates
2:45pm: Olivia is done and being wheeled to the room as we speak. They pulled out a clot the size of a potato and got the old adhesions out. If you make an oval shape with your two hands, that is how big the accumulation was. And if you put your left hand (the wrong hand) over your heart as if you were doing the Pledge of Allegiance, that's where it was located.
3:30pm: She’s doing well. Pain medications are in, a blood transfusion is being piped in, she has been washed down and is clean, is in her bed, and not complaining of any serious pain at the moment. She should be asleep in a bit. Strike that, she is asleep.
Thanks for praying, everyone!
3:30pm: She’s doing well. Pain medications are in, a blood transfusion is being piped in, she has been washed down and is clean, is in her bed, and not complaining of any serious pain at the moment. She should be asleep in a bit. Strike that, she is asleep.
Thanks for praying, everyone!
Olivia Back in Surgery Now
Olivia is in surgery right now. She went in at 12:30 and it will last about an hour or an hour and a half.
The surgery is removing blood and adhesions caught between her ribcage and her lungs on her right side.
The surgery is removing blood and adhesions caught between her ribcage and her lungs on her right side.
Olivia’s Monday 11am Update
Olivia is going back into surgery in about 2 hours.
The blood accumulation between her lungs and ribs on the right side is bad enough to warrant another surgery. He said he has done several hundred of these surgeries, but has never had to go back in on the 3rd post-op day. He has only gone back in to do repairs on the first post-op day. I don’t know if that’s a good thing or bad thing, but it should be a relatively short surgery. This will be exploratory: clearing the accumulation of blood, removing adhesions from prior surgeries, and looking for slow leaks.
Relieving this pressure will improve recovery time, improve oxygen exchange, give her more energy, and the like.
The blood accumulation between her lungs and ribs on the right side is bad enough to warrant another surgery. He said he has done several hundred of these surgeries, but has never had to go back in on the 3rd post-op day. He has only gone back in to do repairs on the first post-op day. I don’t know if that’s a good thing or bad thing, but it should be a relatively short surgery. This will be exploratory: clearing the accumulation of blood, removing adhesions from prior surgeries, and looking for slow leaks.
Relieving this pressure will improve recovery time, improve oxygen exchange, give her more energy, and the like.
Olivia’s 1:30am Update: No News is Good News
For the first time in what seems like a long time, there’s not anything significant occurring.
Breathing treatment is done for the night, pain meds done, nursing assessment done, one nap down and another on the way for Olivia. I finally had some food that had been sitting in the fridge since 2pm. In another few hours we’ll be taking x-rays, drawing blood, and seeing what the next twelve hours holds.
Breathing treatment: Some of you don’t really know what this means, so I’ll take a minute to explain. Depending on the age and understanding of the patient, a treatment plan may be suggested to help a patient regain adequate respiratory function. This could be two minutes of blowing a pinwheel every hour, or it could be forced-air inspiration, which is the treatment Olivia is getting.
Every six hours a respiratory therapist comes in the room and turns on a big machine. The machine has a tube hooked to a large, soft-seal mask that is placed over her nose and mouth. The machine begins a rhythm that forces a large volume of air into and out of Olivia’s lungs for about fifteen minutes. It is basically forced deep-breathing.
It is not painful, but it isn’t comfortable either. She whines in rhythm with the air pulses, but never increases her tone because it doesn’t hurt. After it’s done she can usually take a little nap, which is nice for her.
We’ll find out more within five hours after all the tests are run for the morning and the physicians make their rounds.
Breathing treatment is done for the night, pain meds done, nursing assessment done, one nap down and another on the way for Olivia. I finally had some food that had been sitting in the fridge since 2pm. In another few hours we’ll be taking x-rays, drawing blood, and seeing what the next twelve hours holds.
Breathing treatment: Some of you don’t really know what this means, so I’ll take a minute to explain. Depending on the age and understanding of the patient, a treatment plan may be suggested to help a patient regain adequate respiratory function. This could be two minutes of blowing a pinwheel every hour, or it could be forced-air inspiration, which is the treatment Olivia is getting.
Every six hours a respiratory therapist comes in the room and turns on a big machine. The machine has a tube hooked to a large, soft-seal mask that is placed over her nose and mouth. The machine begins a rhythm that forces a large volume of air into and out of Olivia’s lungs for about fifteen minutes. It is basically forced deep-breathing.
It is not painful, but it isn’t comfortable either. She whines in rhythm with the air pulses, but never increases her tone because it doesn’t hurt. After it’s done she can usually take a little nap, which is nice for her.
We’ll find out more within five hours after all the tests are run for the morning and the physicians make their rounds.
Sunday, July 12, 2009
Olivia’s 7:30pm Update
After a whirlwind morning that started at 4am and went til about 11:30, the afternoon has been relatively uneventful. Amy got here around noon, along with some other friends who came to pray for her. The transfusion was successful, bringing her Hemoglobin and Hematocrit waaaay up. Her hemoglobin went from 4.6 to 11—yes, those numbers are correct—then up to 14.9 with the second infusion, so her body can work on healing itself more effectively. Her hematocrit went from 14.6 up to 40 currently.
Even if you don’t understand those numbers, you can still see that there is a major difference. Olivia had been getting more and more pale over the past 24 hours. That matches the fact that she did lose somewhere in the neighborhood of 720ml of blood in that timeframe, which is a lot for someone so small (35 pounds). Compare that with the expected blood loss for a full grown, 150-pound woman who is giving birth: 500–1000ml, depending on whether it is a live birth or a cesarean.
“Lucy, you got some ’splainin’ to do.”
As far as the blood accumulation between the ribs and the lungs, there is the hope that it will just dissolve. If not, it will have to be removed surgically in the next day or so before it becomes a clot and causes more problems.
Thanks for all the prayers and support. It’s great to have such good friends and family in this with us.
Even if you don’t understand those numbers, you can still see that there is a major difference. Olivia had been getting more and more pale over the past 24 hours. That matches the fact that she did lose somewhere in the neighborhood of 720ml of blood in that timeframe, which is a lot for someone so small (35 pounds). Compare that with the expected blood loss for a full grown, 150-pound woman who is giving birth: 500–1000ml, depending on whether it is a live birth or a cesarean.
“Lucy, you got some ’splainin’ to do.”
As far as the blood accumulation between the ribs and the lungs, there is the hope that it will just dissolve. If not, it will have to be removed surgically in the next day or so before it becomes a clot and causes more problems.
Thanks for all the prayers and support. It’s great to have such good friends and family in this with us.
A Turn for the Worse
I only got about 3 hours of sleep last night, so I’ll make this quick. We've been up since around 4am with lots of commotion and coming and going.
6:30am: Drew blood and took x-rays this morning. Lab results this morning were not believable because they seemed too low, so they attempted to draw new labs to confirm values. It took no less than three attempts just to get something useable. The x-rays were seemingly as bad or worse than yesterday (no improvement shown). Explanation coming soon hopefully.
7:30am: Been trying to draw blood for the past hour; four people have been unable to find a good artery. They’re ordering a transfusion for her now because she has lost a lot of blood in the past 24 hours. X-rays confirmed: no improvement.
8:15am: She still hasn’t been able to rest. We are trying to let her sleep right now. New info: she apparently has an accumulation of blood on her right side between her ribcage and her lung. If this doesn’t drain by today, they will have to remove it so it does not become a clot. This will be a minor “surgery.” They will be watching her closely over the next 6–8 hours to see how her body responds to the transfusion and to see if her labs improve. If they don’t, then there is something else going on. Possibly a slow bleed coming from somewhere inside that needs a stitch. Within eight hours she could be in the operating room again to remove the accumulation and repair whatever needs repair.
9am: Blood just arrived. They’re hooking it up now. Labs will be drawn again in a few hours. If there is no improvement in her lab values, then it could be a bit more serious.
6:30am: Drew blood and took x-rays this morning. Lab results this morning were not believable because they seemed too low, so they attempted to draw new labs to confirm values. It took no less than three attempts just to get something useable. The x-rays were seemingly as bad or worse than yesterday (no improvement shown). Explanation coming soon hopefully.
7:30am: Been trying to draw blood for the past hour; four people have been unable to find a good artery. They’re ordering a transfusion for her now because she has lost a lot of blood in the past 24 hours. X-rays confirmed: no improvement.
8:15am: She still hasn’t been able to rest. We are trying to let her sleep right now. New info: she apparently has an accumulation of blood on her right side between her ribcage and her lung. If this doesn’t drain by today, they will have to remove it so it does not become a clot. This will be a minor “surgery.” They will be watching her closely over the next 6–8 hours to see how her body responds to the transfusion and to see if her labs improve. If they don’t, then there is something else going on. Possibly a slow bleed coming from somewhere inside that needs a stitch. Within eight hours she could be in the operating room again to remove the accumulation and repair whatever needs repair.
9am: Blood just arrived. They’re hooking it up now. Labs will be drawn again in a few hours. If there is no improvement in her lab values, then it could be a bit more serious.
Olivia’s 1am Update
Well, she’s sleeping right now. I’ve been holding her all evening, but she asked to get back in bed. I’m trying to keep her as upright as possible to encourage beneficial coughing and circulation within her lungs. We’ve done another breathing treatment, but this time it was on my lap instead of in the bed. It seemed like she did better that way.
Olivia is drinking apple juice like it won’t exist next week. And she has had multiple wet diapers, which is a good sign that her body is getting back into correct function on its own.
Amy was here until around 9pm. Hopefully she will get some good rest back at home. I’ll be trying to do the same.
Tomorrow at around 4am Olivia will have another round of x-rays to check out her lungs. They’ll be able to tell us what the day will look like—whether we’ll be getting a regular room or still have to stay—within a few hours after that. You’ll know when I know.
Thank you again for all your prayers.
Olivia is drinking apple juice like it won’t exist next week. And she has had multiple wet diapers, which is a good sign that her body is getting back into correct function on its own.
Amy was here until around 9pm. Hopefully she will get some good rest back at home. I’ll be trying to do the same.
Tomorrow at around 4am Olivia will have another round of x-rays to check out her lungs. They’ll be able to tell us what the day will look like—whether we’ll be getting a regular room or still have to stay—within a few hours after that. You’ll know when I know.
Thank you again for all your prayers.
Saturday, July 11, 2009
Olivia’s 4:45pm Update
Amy got here around 3:30 and held Olivia for a while. She does quite well sitting up. In fact, she asked me to help her stand earlier today. The more she can sit upright, the better she will be overall.
Olivia complained of stomach pain; suppository in, #2 out. She’s comfortable enough to rest now, which is good because we’re staying in ICU tonight. This is a good and bad thing. Good because we get special treatment with a nurse focused on Olivia and one other patient only, and bad because it’s a negative enough situation that we have to stay here.
The situation is that they take an x-ray each morning. This morning the x-ray showed too much fluid in lungs (no change from yesterday) and a small collapsed portion. If they can help this clear out and pop open that one part, that will help a ton. This is done by breathing treatments, which are continuing every six hours.
Anther issue we are watching for is possible infection. Olivia’s abdomen has been somewhat distended since she arrived here and the drainage from her chest has increased in the past day. Both are within normal bounds, but if accompanied by a spike in temperature, it could indicate an internal infection. Keep this in prayer.
We both got more sleep last night than any other so far. They’re lengthening the time for vitals checks and whatnot, so that is good.
Earlier this morning—talking 3:30 or 4am—was the first and only time Olivia has smiled since the surgery. That is what the ancients called hope or expectation. It is the ability to see a glimpse of good that will soon come. If she can smile now, that means she feels she is doing better.
Olivia complained of stomach pain; suppository in, #2 out. She’s comfortable enough to rest now, which is good because we’re staying in ICU tonight. This is a good and bad thing. Good because we get special treatment with a nurse focused on Olivia and one other patient only, and bad because it’s a negative enough situation that we have to stay here.
The situation is that they take an x-ray each morning. This morning the x-ray showed too much fluid in lungs (no change from yesterday) and a small collapsed portion. If they can help this clear out and pop open that one part, that will help a ton. This is done by breathing treatments, which are continuing every six hours.
Anther issue we are watching for is possible infection. Olivia’s abdomen has been somewhat distended since she arrived here and the drainage from her chest has increased in the past day. Both are within normal bounds, but if accompanied by a spike in temperature, it could indicate an internal infection. Keep this in prayer.
We both got more sleep last night than any other so far. They’re lengthening the time for vitals checks and whatnot, so that is good.
Earlier this morning—talking 3:30 or 4am—was the first and only time Olivia has smiled since the surgery. That is what the ancients called hope or expectation. It is the ability to see a glimpse of good that will soon come. If she can smile now, that means she feels she is doing better.
Olivia's 1:45pm Update
I was just told she'll be staying in the ICU at least one more night. The x-rays they took this morning showed too much liquid in her lungs still. She has had 3 breathing treatments today already. The leapfrogging pain medication cycle seems to be effective. Starting last night, she has been sleeping better than when she first got in here, so that's good. I'm going to shower while she sleeps.
Olivia’s Midnight Update
Another breathing treatment done. They seem to be helping. The less pressure you have to apply to get the same volume of air in, the better. We were able to take it a step down tonight, so that’s good.
More pain meds in the system. Oxycodone to the rescue!
Amy was able to be here until about 9 or 9:30pm and held Olivia the entire time. Olivia was very happy to see her mommy. I've been holding her since then, so I haven’t been able to update as often as yesterday.
One concern right now is that she is not urinating since the catheter was taken out. That’s a bad thing because it causes abdominal distention, pain, and her body is simply not getting rid of waste. We don’t know the cause right now, but we’re hoping we don’t have to place the catheter back in. That’s no fun.
So far this night has been better than last night. Vitals were changed to every 2 hours rather than every hour. That means she can sleep more in one chunk . . . and maybe I can, too. She hasn’t been disturbed much, so she hasn’t been whimpering as much. I think the leapfrogging medication cycle is working quite well also.
This will be the last one for tonight. I need to have a little something to eat and take a nap before the next room invasion. At least they are helpful.
More pain meds in the system. Oxycodone to the rescue!
Amy was able to be here until about 9 or 9:30pm and held Olivia the entire time. Olivia was very happy to see her mommy. I've been holding her since then, so I haven’t been able to update as often as yesterday.
One concern right now is that she is not urinating since the catheter was taken out. That’s a bad thing because it causes abdominal distention, pain, and her body is simply not getting rid of waste. We don’t know the cause right now, but we’re hoping we don’t have to place the catheter back in. That’s no fun.
So far this night has been better than last night. Vitals were changed to every 2 hours rather than every hour. That means she can sleep more in one chunk . . . and maybe I can, too. She hasn’t been disturbed much, so she hasn’t been whimpering as much. I think the leapfrogging medication cycle is working quite well also.
This will be the last one for tonight. I need to have a little something to eat and take a nap before the next room invasion. At least they are helpful.
Friday, July 10, 2009
Olivia’s 8pm Update
We have been able to hold her for the last several hours. After removing so many IVs and such, it is easy(er) to get her in and out of bed.
On the subject of pain medication, I have arranged to have leapfrogging medications. The two main meds are ibuprofen and oxycodone, with small quantities of morphine for breakthrough pain. The first two have 6 hour cycles; so I have asked to give one at hour 1 and the other at hour 3 and the first again at hour 6 so her pain is minimized continually. It also means that when one is peaking and waning, the other is getting ready to kick in.
But, again, we are watching her body’s reaction to what she is receiving: intestinal activity, breathing ability, lethargy, and the like. It’s important not to give her body more than it needs for pain control, but provide enough relief so the person is resting and can do what it must to progress with the healing process.
Thanks to some awesome friends on the homefront, Amy has been able to be at the hospital with us since about 3pm.
Oxygen saturation levels: Olivia is sitting now in the 90–95%, which is great. Prior to the surgery she was between 75–80%. Besides her color change, this is one of the main indicators that the surgery was successful. However, it will take a while for her body to self-regulate that high of an oxygen level due to it having to “re-learn” a new route for pumping blood throughout the body. For comparison, regular folk have an oxygen saturation level of about 100%.
Olivia’s 2pm Update
2pm: They removed the arterial IV in her wrist (that sucker is a bleeder), took out her catheter, more pain meds given, the IV in her neck is still in. Just got word they are keeping her another night in the ICU; too much fluid in her lungs to move her to a regular room yet. Breathing treatments every 6 hours, maybe more often.
Strike that: the IV in her neck (intrajugular PICC line) is coming out right now. She won't like this, so I'm gonna help.
Strike that: the IV in her neck (intrajugular PICC line) is coming out right now. She won't like this, so I'm gonna help.
Local Starbucks Supports Olivia
This morning my friend Shawn stopped by the Starbucks where Amy works. On the counter sits a whiteboard with updates of Olivia and a picture. Let me just say these baristas have been amazing—supporting her every step of the way. But an unimagined surprise also came about. The customers that Amy serves every day are going beyond the well-wishes. Some are making meals, some have brought little gifts, some are bringing flowers, and some have written cards. It has been awesome to see such genuine concern from such a wide range of people.
Thank you.
Update at 11:30am
Many of the IV lines, fluids, and medications have been detached. She’s getting enough fluids through what she is drinking right now to suffice.
The emergency pacemaker electrodes were take out of her chest this morning. These wires are attached directly to the heart in many heart surgery patients just in case there is a need to stabilize or regulate the heartbeat. A single stitch holds it to the skin as it goes from outside to inside the body. Her catheter should be removed soon as well.
Other than that, she still whimpers every 45 minutes or so, and has asked me to hold her several times. She has asked for mommy a bit as well, so she'll be happy when Amy shows up in a little while.
The emergency pacemaker electrodes were take out of her chest this morning. These wires are attached directly to the heart in many heart surgery patients just in case there is a need to stabilize or regulate the heartbeat. A single stitch holds it to the skin as it goes from outside to inside the body. Her catheter should be removed soon as well.
Other than that, she still whimpers every 45 minutes or so, and has asked me to hold her several times. She has asked for mommy a bit as well, so she'll be happy when Amy shows up in a little while.
Friday Morning Update
Olivia’s morning update: Last night was rough; she was up at least every hour whimpering. She just had her 2nd breathing therapy of the day. Apparently there is fluid build-up in her lungs (could lead to pneumonia), so they are trying to break it up a bit.
She has had two cartons of juice and a glass of water. Confession: I cheated last night and gave her a few sips from a sponge before it was ordered from a physician. That's because she hadn't had anything to eat or drink since 5am that morning. They provide miniature sponges on a stick to brush your teeth, so I brushed hers, then got a new sponge for her to take a few sips of water. I did this several times throughout the night but made sure it was enough to moisten her mouth and lips without sitting in her stomach and making her nauseous.
She has had two cartons of juice and a glass of water. Confession: I cheated last night and gave her a few sips from a sponge before it was ordered from a physician. That's because she hadn't had anything to eat or drink since 5am that morning. They provide miniature sponges on a stick to brush your teeth, so I brushed hers, then got a new sponge for her to take a few sips of water. I did this several times throughout the night but made sure it was enough to moisten her mouth and lips without sitting in her stomach and making her nauseous.
Midnight Update
Olivia is doing well. Sleeping mostly. She just received another helping of morphine.
To all hospital-goers: ask about the orders for pain medicine. Sometimes it’s once every 4 hours, but sometimes once every hour. Just ask what the schedule is. It’s the nice way of making sure they’re on the ball.
The shift change happened at 7pm, so I figured the nurses memorized Olivia’s case since she is their only patient tonight. I just took that for granted. Olivia could have been having more pain medicine every hour. I won't miss that again.
To all hospital-goers: ask about the orders for pain medicine. Sometimes it’s once every 4 hours, but sometimes once every hour. Just ask what the schedule is. It’s the nice way of making sure they’re on the ball.
The shift change happened at 7pm, so I figured the nurses memorized Olivia’s case since she is their only patient tonight. I just took that for granted. Olivia could have been having more pain medicine every hour. I won't miss that again.
Thursday, July 09, 2009
Ten o'clock Update
Olivia has woken up a few times . . . maybe five or so the whole evening. Right after we took the tube out she asked for juice. “Yes, my queen.”
Another time she asked me to hold her. The best I could do was put my arm under her head and kind of stretch across her body. Not easy to do, but it seemed to help.
Right now she’s got a line of pillows to her right side—her puppy as well—and her blanket to her left. She’s snuggly.
Another time she asked me to hold her. The best I could do was put my arm under her head and kind of stretch across her body. Not easy to do, but it seemed to help.
Right now she’s got a line of pillows to her right side—her puppy as well—and her blanket to her left. She’s snuggly.
In Recovery
Pictures after the post. Olivia has been in recovery for about seven hours now. Amy and I saw her right after the surgery, and we had to admit that she looked better than immediately after the last surgery she had. Less swelling, less tubes and attachments, less medicines, and yet she seemed better than last time. A few things:
7:00pm: Took out the ventilation tube. When we asked her the first few times if she wanted it out, she said no. Obviously not with it. As soon as it was out, she asked for juice. Poor girl . . . that won't happen for another five hours. In the meantime I am wetting her lips with a washcloth and trying to rinse out her mouth when she will let me.
8:45pm: First dose of pain meds (morphine) since the operation. She had enough sedation during the procedure to last for quite a few hours after, so this is normal.
9:00pm: Dang, that morphine works quickly! Asleep.
She's got her puppy next to her head; she has two vacuum drains coming out of either side of her belly; the other two thin, brown lines are just-in-case direct lines to shock her heart in the case of emergency; she has multiple IVs in each hand and a direct line in the left side of her neck (a PICC line); she has a urinary catheter in; she has no staples, but some dissolvable sutures in her chest which are covered by a large bandage; she has peeling pink nail polish on her nails. And she's asleep. Click the pictures for mural-sized versions.
7:00pm: Took out the ventilation tube. When we asked her the first few times if she wanted it out, she said no. Obviously not with it. As soon as it was out, she asked for juice. Poor girl . . . that won't happen for another five hours. In the meantime I am wetting her lips with a washcloth and trying to rinse out her mouth when she will let me.
8:45pm: First dose of pain meds (morphine) since the operation. She had enough sedation during the procedure to last for quite a few hours after, so this is normal.
9:00pm: Dang, that morphine works quickly! Asleep.
She's got her puppy next to her head; she has two vacuum drains coming out of either side of her belly; the other two thin, brown lines are just-in-case direct lines to shock her heart in the case of emergency; she has multiple IVs in each hand and a direct line in the left side of her neck (a PICC line); she has a urinary catheter in; she has no staples, but some dissolvable sutures in her chest which are covered by a large bandage; she has peeling pink nail polish on her nails. And she's asleep. Click the pictures for mural-sized versions.
Olivia's Surgery Complete
Noon: Olivia's surgery is complete. They are stitching her up. She will not have staples in her chest like last time; only dissolving stitches and a bandage covering.
No complications during surgery! Over the next two hours the hospital staff will wean Olivia off her anesthetic, take out her air tube, maintain pain meds as necessary, give her a sponge bath, and keep her as comfortable as possible. We'll meet with the surgeon soon and be able to see her within that two hours.
I'll see her first just to get a feel for whether Amy will be able to handle it right away. Last time Amy almost passed out because she is quite a sight: tubes, IVs, beeping machines, a ventilator, swollen appearance, and the like. She should be awake for a bit today. though.
No complications during surgery! Over the next two hours the hospital staff will wean Olivia off her anesthetic, take out her air tube, maintain pain meds as necessary, give her a sponge bath, and keep her as comfortable as possible. We'll meet with the surgeon soon and be able to see her within that two hours.
I'll see her first just to get a feel for whether Amy will be able to handle it right away. Last time Amy almost passed out because she is quite a sight: tubes, IVs, beeping machines, a ventilator, swollen appearance, and the like. She should be awake for a bit today. though.
On Bypass
10:30am: Olivia is on full bypass, all the old scar tissue has been cut away, and the surgeon is about to start sewing in the Dacron tube into the inferior vena cava.
Cutting Through
9:42am: Just notified that they are only now cutting through the layer of her chest to begin the repair. Not on bypass yet, but she will be soon.
Olivia is in Surgery Right Now
5:30am: Woke up, showered, put Olivia in our bed to start waking up.
6:00am: Drove to hospital for early check-in.
8:30am: Gave Olivia Valium at 8:10. Loopy within ten minutes. Just dropped her off in the long hallway to her operating room. Anesthesiologists were very nice and reassuring.
They'll give us updates every 45 minutes.
Note to all parents: if a hospital ever tries to place an IV before your child has been put under, go somewhere else. There's no need for that. Children's Mercy does it correctly. They're great.
6:00am: Drove to hospital for early check-in.
8:30am: Gave Olivia Valium at 8:10. Loopy within ten minutes. Just dropped her off in the long hallway to her operating room. Anesthesiologists were very nice and reassuring.
They'll give us updates every 45 minutes.
Note to all parents: if a hospital ever tries to place an IV before your child has been put under, go somewhere else. There's no need for that. Children's Mercy does it correctly. They're great.
Wednesday, July 08, 2009
Good morning to ya!
I haven't posted here in over six months, mostly due to schooling and staying busy with the family. But today, Wednesday the 8th, we took Olivia (3 years old) in for her pre-op processing. She'll be having another heart surgery on Thursday, July 9th, which should be when you are reading this post.
Pray for her during this time. It'll be quite a big deal. More details on that later.
Here's a few pictures for before the surgery. I'll be posting throughout and some after shots as well. Click them for the mural-sized view.
On this one above, notice the blue webbing pattern that sits just below the skin. This is quite pronounced in person, but still noticeable here. I wonder how much this will go away once she has completely recovered. She also has a dusky gray/blue color on her skin called cyanosis.
Stay tuned for more updates throughout the surgery and the subsequent month of recovery. And thanks for praying for her.
Pray for her during this time. It'll be quite a big deal. More details on that later.
Here's a few pictures for before the surgery. I'll be posting throughout and some after shots as well. Click them for the mural-sized view.
On this one above, notice the blue webbing pattern that sits just below the skin. This is quite pronounced in person, but still noticeable here. I wonder how much this will go away once she has completely recovered. She also has a dusky gray/blue color on her skin called cyanosis.
Stay tuned for more updates throughout the surgery and the subsequent month of recovery. And thanks for praying for her.
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