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.
Monday, July 13, 2009
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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