May 14 @ 1:00p
Last night was our first night at home. Things way better here than in LPCH despite their excellent care. We all slept much better than the previous 4 nights.
Interesting, challenging past half-week ... ok, past half year since we found out this had to happen. Learning (again) all the jargon, options, risks, etc about open heart. Planning, communicating, colds, replanning, shifting schedules. Watching them wheel her away to the operating room...
Through it all, Lauren was matter of fact. "Not like I have a choice." Which she didn't. None of us did.
And then in a blur the surgery was over, the hoses/wires/tubes/machines disappeared, she was walking, friends were visiting, and we were out of the hospital.
Next phase starts now. Sternum protection, doctor visits to plan the recovery period, restrictions ... healing.
Thank you to everyone who provided so much support to Lauren and us through this cycle. All your positive energy really helped.
May 13 @ 6:00p
She is OUT! 76 hours after leaving the operating room, we just checked Lauren out of the hospital! Pretty amazing. Of course, it couldn't be without some interesting moments. While checking Lauren's vitals for exit, of course she has a low grade fever and slightly elevated blood pressure. After a quick confab the doctors decided she is within acceptable ranges and let her go.
May 13 @ 8:00a
Once the chest tubes came out yesterday, and after a short nap, you could see Lauren's world start to shift back to color from black-and-white. The pain seemed to significantly diminish (some of it was no doubt due to the painkiller for the chest tube removal but ...), she had a bunch of friends (school, soccer, family) come visit. She was in great spirits - ate, drank, did a bunch of laps around the hospital. Talking. Joking. Smiling. Awesome.
Of course, this is not a completely linear process so the pain returned overnight impacting her sleep some and is there this morning. Nothing like yesterday if her external appearances are an indication but none to pleasant either. She is taking pain medication but has already started self-tapering especially from the hard stuff. All those years of athletics learning how to read her body will come in handy in this process.
Still on plan for exit today but there are a few more procedures to run so don't have ETA. Should find out mid-morning the plan for today.
One thing is for sure, she is READY to go home at this point.
May 12 @ 1:35p
Lauren's pain level has been high, especially a couple of hours before she is due for her pain medication. You can see it on her face. She hasn't listened to music or watched Netflix like she would if she was home since surgery. You know she feels bad when she is just laying there. She is on her phone checking in with her friends. You cannot sleep in CVICU so we made sure Lauren had access to her phone in case she needed us after we left the CVICU last night. My phone went off at 2 am. I knew it wasn't going to be an I miss you/love you text and freaked out when I saw it was from her. She said, "They are moving me." I responded, "Now?". She said, "Yes". Someone just finished surgery and there were no empty spaces IN CVICU. She is now in a normal room in a patient care unit.
The pain seemed worse this morning compared to yesterday morning. They want her drinking, eating and moving around which she has not been doing. They say the pain will decrease dramatically once the chest tubes are out. A nurse gave her a pep talk that if she wanted out of here she needed to drink/eat/walk. Lauren waited until she got her pain meds then took her first walk around the care unit - chest tube collectors in tow. She walked faster than my mother does normally (sorry mom). The RN commented on how Lauren walked faster than the nurse helping her She opted to do 2 laps then collapsed in her bed. It hurts to go from standing to laying due to the chest tubes.
Her care team came on rounds, described everything that was going on, and said her chest tubes could come out today. Her blood pressure was elevated yesterday and they think it goes up when she is in a lot of pain. They will try to stagger the pain meds for better coverage if she can tolerate it. Stanford is a teaching hospital so the head RN asked the one in training when she could go home. She thought tomorrow based on how she is doing. Yikes - was not expecting that, especially with the amount of pain she is in. Several doctors/nurses have commented on how you would not know she just had open heart surgery based on how she looks. I agree - she looks like our normal Lauren when the pain reduces and is peacefully sleeping.
The chest tube removal was supposed to happen this afternoon and was bumped up to noon. From what nurses have told me, this is very painful and make sure she is well medicated. We left the room - no parent wants to see this. The nurse came and got us once Lauren was ready for us to come back. She said Lauren is a rock star.
May 11 @ 1:35p
Lauren's pain level has been high, especially a couple of hours before she is due for her pain medication. You can see it on her face. She hasn't listened to music or watched Netflix like she would if she was home since surgery. You know she feels bad when she is just laying there. She is on her phone checking in with her friends. You cannot sleep in CVICU so we made sure Lauren had access to her phone in case she needed us after we left the CVICU last night. My phone went off at 2 am. I knew it wasn't going to be an I miss you/love you text and freaked out when I saw it was from her. She said, "They are moving me." I responded, "Now?". She said, "Yes". Someone just finished surgery and there were no empty spaces IN CVICU. She is now in a normal room in a patient care unit.
The pain seemed worse this morning compared to yesterday morning. They want her drinking, eating and moving around which she has not been doing. They say the pain will decrease dramatically once the chest tubes are out. A nurse gave her a pep talk that if she wanted out of here she needed to drink/eat/walk. Lauren waited until she got her pain meds then took her first walk around the care unit - chest tube collectors in tow. She walked faster than my mother does normally (sorry mom). The RN commented on how Lauren walked faster than the nurse helping her She opted to do 2 laps then collapsed in her bed. It hurts to go from standing to laying due to the chest tubes.
Her care team came on rounds, described everything that was going on, and said her chest tubes could come out today. Her blood pressure was elevated yesterday and they think it goes up when she is in a lot of pain. They will try to stagger the pain meds for better coverage if she can tolerate it. Stanford is a teaching hospital so the head RN asked the one in training when she could go home. She thought tomorrow based on how she is doing. Yikes - was not expecting that, especially with the amount of pain she is in. Several doctors/nurses have commented on how you would not know she just had open heart surgery based on how she looks. I agree - she looks like our normal Lauren when the pain reduces and is peacefully sleeping.
The chest tube removal was supposed to happen this afternoon and was bumped up to noon. From what nurses have told me, this is very painful and make sure she is well medicated. We left the room - no parent wants to see this. The nurse came and got us once Lauren was ready for us to come back. She said Lauren is a rock star.
May 11 @ 7:51p
All in all a good day for Lauren. As day progressed, more and more things were taken away. Still has the chest tubes and pacer wires and 2 IVs. She had a couple visitors, which was good for her. I am sure she will enjoy more visitors in the coming days. She was awake all day and was pretty exhausted by 5p. She has been sleeping since. I think she is becoming aware of the reality of the discomfort and effort of recovery. She will not make it out of ICU today, partly because of room availability in normal recovery. Everyone seems to be targeting tomorrow.
May 11 @ 1p
Only 2 lines, pacer wires and chest tubes are left. Pain level is a 4-5 out of 10 but Lauren seems to be dealing with it. The physical therapist came by and taught her how to roll to sit up from a laying position. Lauren was able to sit up for the first time today. She got a little dizzy but was able to sit with her feet hanging over her bed for 15 minutes. Good news for Lauren - no chores for 2 months since she can't push or pull things, put her arms above her shoulder, or carry anything over 5 pounds. Bad news is she can't drive until her sternum is healed which is 2 months. The twisting motion of turning, etc. is not good for a healing sternum. The hospital teacher introduced herself in case she is in her for a long period of time. They have Palo Alto Unified teachers that come by and help the kids with their homework.
May 11 @ 10:30a
Slowly, all of the machines and lines are being removed and you can see more of Lauren. The central line and arterial line were removed, and they plan on taking more out later (there are still 3 lines). Lauren is no longer on oxygen. She was given breakfast and was able to eat part of a croissant (first food since Tuesday night). During rounds they said Lauren is doing great and proceeding to plan. The pain seems to be well controlled now - Lauren has a button to push for morphine and they are giving her 2 other pain meds. They plan to have her sit up soon, and try to walk which may change that.
May 11 @ 7:30a
This morning finds Lauren much improved. She is in great spirits even though she remembers everything from yesterday (I asked her a couple of questions and she actually does remember - nurse is surprised as most people don't). She says the pain is much better than yesterday but it still hurts to breathe deeply. She is talking, even joked a little with the nurse. She has had water and is about to get some apple juice. More lines / equipment are leaving. On this trend, she will leave ICU today which is great.
May 10 @ 6:45p
Lauren was able to rally enough to begin breathing on her own so they removed the breathing tube. She has to labor to breath deeply enough because it causes serious chest pain. Despite still being only semi-conscious, she is pushing through the pain to breath. She seems to be relaxing into the discomfort, becoming better able to cope with it. The doctors say she is right on track as she should be.
May 10 @ 4:05p
We were able to come into see Lauren in ICU about 30min ago. She is still basically out from the anesthesia, though she has roused very briefly a couple of times. She is clearly in a lot of pain in the chest. They are working her down from the anesthesia but trying to balance to keep the pain manageable. Once she gets more fully awake, they will look to remove the breathing tube. May be a few hours more for that. They say there is a good chance she won't remember these hours. I hope they are right. I hope I don't remember them too.
May 10 @ 12:33
Of course, we headed to lunch after the last update, figuring we had time to eat and get back before the 2:00p scheduled finish. We were wrong. Just after getting our most excellent cafeteria food, phone rings - surgeon is in the waiting room. They put him on the phone ...
"We have completed the procedure. We were able to repair the valve. There is a mild leak but as expected. Pretty much best case scenario."
Procedure complete. Everything went as the surgeon had hoped ... the best case scenario.
The repair is a new approach that 'fixes' Lauren's original valve versus replacing the valve. The theory is that since it is her valve, it may never need to be touched again. If they had replaced it, which is the standard procedure, she was looking at repeated procedures in the future, some of which would most likely have required open heart surgery again.
We talked briefly to her Cardiologist too. He was very pleased with the outcome. "She may never need anything else done..."
Within the context of having your daughter undergo open heart surgery, it is a very good day.
She should be in the ICU in an hour or two. Sounds like visitation there is restricted. We will update again once we see her.
May 10 @ 12:15
"Communication Nurse" just updated again. Still proceeding to plan.
May 10 @ 11:30
Latest update from the "Communication Nurse". All progressing to plan.
May 10 @ 10:00
The procedure has started ...
May 10 @ 8:30
It has been a rollercoaster of a ride - several surgery dates and delays due to colds, being bumped, etc. Lauren started having a cold again last week and had another viral panel done on Monday. Stanford had us come to pre-op on Tuesday in case it came back negative. We spent hours at the hospital doing tests, meeting the surgical team, and anesthesiologist. Her blood work done at Stanford came back fine, so the PA thought the viral panel would be negative. We got the call at 3:45 pm on Tuesday that she tested positive for the Corona virus again. The surgical team huddled on her case, and decided they would proceed with surgery due to the way she presented in clinic. If she was worse in the morning, surgery would be delayed again. We arrived at the hospital at 6:15 am. She was checked out by her surgical team and they decided to proceed with surgery. She has 3 female anesthesiologists, a nurse, her surgeon, and PA as part of her team. The anesthesiologists gave her some meds to relax her and they wheeled her off to the operating room around 7:45. Surgery is to start at 8 am and she is in the operating room now. The surgery will take 6 hours. This is Lauren's second open heart surgery. Her first surgery was to repair her congenital heart defect, Tetralogy of Fallot (yes, this is what Jimmy Kimmel's son has, plus he has pulmonary atresia). As a result of her first surgery, her pulmonary valve leaks making her right ventricle work harder and increase in size. It is at a size now that her pulmonary valve needs to be repaired/fixed. Her surgeon hopes to be able to repair her pulmonary valve to reduce the leak. He will not know for sure until he sees it during surgery. If he can repair it, this may be her last surgery. Otherwise, they will use a pig's valve.
May 9 @ 9:37PM
Surgery is tomorrow morning. Check back often tomorrow and later days for updates. Feel free to share this link with anyone you think would like updates on Lauren's progress.
Last night was our first night at home. Things way better here than in LPCH despite their excellent care. We all slept much better than the previous 4 nights.
Interesting, challenging past half-week ... ok, past half year since we found out this had to happen. Learning (again) all the jargon, options, risks, etc about open heart. Planning, communicating, colds, replanning, shifting schedules. Watching them wheel her away to the operating room...
Through it all, Lauren was matter of fact. "Not like I have a choice." Which she didn't. None of us did.
And then in a blur the surgery was over, the hoses/wires/tubes/machines disappeared, she was walking, friends were visiting, and we were out of the hospital.
Next phase starts now. Sternum protection, doctor visits to plan the recovery period, restrictions ... healing.
Thank you to everyone who provided so much support to Lauren and us through this cycle. All your positive energy really helped.
May 13 @ 6:00p
She is OUT! 76 hours after leaving the operating room, we just checked Lauren out of the hospital! Pretty amazing. Of course, it couldn't be without some interesting moments. While checking Lauren's vitals for exit, of course she has a low grade fever and slightly elevated blood pressure. After a quick confab the doctors decided she is within acceptable ranges and let her go.
May 13 @ 8:00a
Once the chest tubes came out yesterday, and after a short nap, you could see Lauren's world start to shift back to color from black-and-white. The pain seemed to significantly diminish (some of it was no doubt due to the painkiller for the chest tube removal but ...), she had a bunch of friends (school, soccer, family) come visit. She was in great spirits - ate, drank, did a bunch of laps around the hospital. Talking. Joking. Smiling. Awesome.
Of course, this is not a completely linear process so the pain returned overnight impacting her sleep some and is there this morning. Nothing like yesterday if her external appearances are an indication but none to pleasant either. She is taking pain medication but has already started self-tapering especially from the hard stuff. All those years of athletics learning how to read her body will come in handy in this process.
Still on plan for exit today but there are a few more procedures to run so don't have ETA. Should find out mid-morning the plan for today.
One thing is for sure, she is READY to go home at this point.
May 12 @ 1:35p
Lauren's pain level has been high, especially a couple of hours before she is due for her pain medication. You can see it on her face. She hasn't listened to music or watched Netflix like she would if she was home since surgery. You know she feels bad when she is just laying there. She is on her phone checking in with her friends. You cannot sleep in CVICU so we made sure Lauren had access to her phone in case she needed us after we left the CVICU last night. My phone went off at 2 am. I knew it wasn't going to be an I miss you/love you text and freaked out when I saw it was from her. She said, "They are moving me." I responded, "Now?". She said, "Yes". Someone just finished surgery and there were no empty spaces IN CVICU. She is now in a normal room in a patient care unit.
The pain seemed worse this morning compared to yesterday morning. They want her drinking, eating and moving around which she has not been doing. They say the pain will decrease dramatically once the chest tubes are out. A nurse gave her a pep talk that if she wanted out of here she needed to drink/eat/walk. Lauren waited until she got her pain meds then took her first walk around the care unit - chest tube collectors in tow. She walked faster than my mother does normally (sorry mom). The RN commented on how Lauren walked faster than the nurse helping her She opted to do 2 laps then collapsed in her bed. It hurts to go from standing to laying due to the chest tubes.
Her care team came on rounds, described everything that was going on, and said her chest tubes could come out today. Her blood pressure was elevated yesterday and they think it goes up when she is in a lot of pain. They will try to stagger the pain meds for better coverage if she can tolerate it. Stanford is a teaching hospital so the head RN asked the one in training when she could go home. She thought tomorrow based on how she is doing. Yikes - was not expecting that, especially with the amount of pain she is in. Several doctors/nurses have commented on how you would not know she just had open heart surgery based on how she looks. I agree - she looks like our normal Lauren when the pain reduces and is peacefully sleeping.
The chest tube removal was supposed to happen this afternoon and was bumped up to noon. From what nurses have told me, this is very painful and make sure she is well medicated. We left the room - no parent wants to see this. The nurse came and got us once Lauren was ready for us to come back. She said Lauren is a rock star.
May 11 @ 1:35p
Lauren's pain level has been high, especially a couple of hours before she is due for her pain medication. You can see it on her face. She hasn't listened to music or watched Netflix like she would if she was home since surgery. You know she feels bad when she is just laying there. She is on her phone checking in with her friends. You cannot sleep in CVICU so we made sure Lauren had access to her phone in case she needed us after we left the CVICU last night. My phone went off at 2 am. I knew it wasn't going to be an I miss you/love you text and freaked out when I saw it was from her. She said, "They are moving me." I responded, "Now?". She said, "Yes". Someone just finished surgery and there were no empty spaces IN CVICU. She is now in a normal room in a patient care unit.
The pain seemed worse this morning compared to yesterday morning. They want her drinking, eating and moving around which she has not been doing. They say the pain will decrease dramatically once the chest tubes are out. A nurse gave her a pep talk that if she wanted out of here she needed to drink/eat/walk. Lauren waited until she got her pain meds then took her first walk around the care unit - chest tube collectors in tow. She walked faster than my mother does normally (sorry mom). The RN commented on how Lauren walked faster than the nurse helping her She opted to do 2 laps then collapsed in her bed. It hurts to go from standing to laying due to the chest tubes.
Her care team came on rounds, described everything that was going on, and said her chest tubes could come out today. Her blood pressure was elevated yesterday and they think it goes up when she is in a lot of pain. They will try to stagger the pain meds for better coverage if she can tolerate it. Stanford is a teaching hospital so the head RN asked the one in training when she could go home. She thought tomorrow based on how she is doing. Yikes - was not expecting that, especially with the amount of pain she is in. Several doctors/nurses have commented on how you would not know she just had open heart surgery based on how she looks. I agree - she looks like our normal Lauren when the pain reduces and is peacefully sleeping.
The chest tube removal was supposed to happen this afternoon and was bumped up to noon. From what nurses have told me, this is very painful and make sure she is well medicated. We left the room - no parent wants to see this. The nurse came and got us once Lauren was ready for us to come back. She said Lauren is a rock star.
May 11 @ 7:51p
All in all a good day for Lauren. As day progressed, more and more things were taken away. Still has the chest tubes and pacer wires and 2 IVs. She had a couple visitors, which was good for her. I am sure she will enjoy more visitors in the coming days. She was awake all day and was pretty exhausted by 5p. She has been sleeping since. I think she is becoming aware of the reality of the discomfort and effort of recovery. She will not make it out of ICU today, partly because of room availability in normal recovery. Everyone seems to be targeting tomorrow.
May 11 @ 1p
Only 2 lines, pacer wires and chest tubes are left. Pain level is a 4-5 out of 10 but Lauren seems to be dealing with it. The physical therapist came by and taught her how to roll to sit up from a laying position. Lauren was able to sit up for the first time today. She got a little dizzy but was able to sit with her feet hanging over her bed for 15 minutes. Good news for Lauren - no chores for 2 months since she can't push or pull things, put her arms above her shoulder, or carry anything over 5 pounds. Bad news is she can't drive until her sternum is healed which is 2 months. The twisting motion of turning, etc. is not good for a healing sternum. The hospital teacher introduced herself in case she is in her for a long period of time. They have Palo Alto Unified teachers that come by and help the kids with their homework.
May 11 @ 10:30a
Slowly, all of the machines and lines are being removed and you can see more of Lauren. The central line and arterial line were removed, and they plan on taking more out later (there are still 3 lines). Lauren is no longer on oxygen. She was given breakfast and was able to eat part of a croissant (first food since Tuesday night). During rounds they said Lauren is doing great and proceeding to plan. The pain seems to be well controlled now - Lauren has a button to push for morphine and they are giving her 2 other pain meds. They plan to have her sit up soon, and try to walk which may change that.
May 11 @ 7:30a
This morning finds Lauren much improved. She is in great spirits even though she remembers everything from yesterday (I asked her a couple of questions and she actually does remember - nurse is surprised as most people don't). She says the pain is much better than yesterday but it still hurts to breathe deeply. She is talking, even joked a little with the nurse. She has had water and is about to get some apple juice. More lines / equipment are leaving. On this trend, she will leave ICU today which is great.
May 10 @ 6:45p
Lauren was able to rally enough to begin breathing on her own so they removed the breathing tube. She has to labor to breath deeply enough because it causes serious chest pain. Despite still being only semi-conscious, she is pushing through the pain to breath. She seems to be relaxing into the discomfort, becoming better able to cope with it. The doctors say she is right on track as she should be.
May 10 @ 4:05p
We were able to come into see Lauren in ICU about 30min ago. She is still basically out from the anesthesia, though she has roused very briefly a couple of times. She is clearly in a lot of pain in the chest. They are working her down from the anesthesia but trying to balance to keep the pain manageable. Once she gets more fully awake, they will look to remove the breathing tube. May be a few hours more for that. They say there is a good chance she won't remember these hours. I hope they are right. I hope I don't remember them too.
May 10 @ 12:33
Of course, we headed to lunch after the last update, figuring we had time to eat and get back before the 2:00p scheduled finish. We were wrong. Just after getting our most excellent cafeteria food, phone rings - surgeon is in the waiting room. They put him on the phone ...
"We have completed the procedure. We were able to repair the valve. There is a mild leak but as expected. Pretty much best case scenario."
Procedure complete. Everything went as the surgeon had hoped ... the best case scenario.
The repair is a new approach that 'fixes' Lauren's original valve versus replacing the valve. The theory is that since it is her valve, it may never need to be touched again. If they had replaced it, which is the standard procedure, she was looking at repeated procedures in the future, some of which would most likely have required open heart surgery again.
We talked briefly to her Cardiologist too. He was very pleased with the outcome. "She may never need anything else done..."
Within the context of having your daughter undergo open heart surgery, it is a very good day.
She should be in the ICU in an hour or two. Sounds like visitation there is restricted. We will update again once we see her.
May 10 @ 12:15
"Communication Nurse" just updated again. Still proceeding to plan.
May 10 @ 11:30
Latest update from the "Communication Nurse". All progressing to plan.
May 10 @ 10:00
The procedure has started ...
May 10 @ 8:30
It has been a rollercoaster of a ride - several surgery dates and delays due to colds, being bumped, etc. Lauren started having a cold again last week and had another viral panel done on Monday. Stanford had us come to pre-op on Tuesday in case it came back negative. We spent hours at the hospital doing tests, meeting the surgical team, and anesthesiologist. Her blood work done at Stanford came back fine, so the PA thought the viral panel would be negative. We got the call at 3:45 pm on Tuesday that she tested positive for the Corona virus again. The surgical team huddled on her case, and decided they would proceed with surgery due to the way she presented in clinic. If she was worse in the morning, surgery would be delayed again. We arrived at the hospital at 6:15 am. She was checked out by her surgical team and they decided to proceed with surgery. She has 3 female anesthesiologists, a nurse, her surgeon, and PA as part of her team. The anesthesiologists gave her some meds to relax her and they wheeled her off to the operating room around 7:45. Surgery is to start at 8 am and she is in the operating room now. The surgery will take 6 hours. This is Lauren's second open heart surgery. Her first surgery was to repair her congenital heart defect, Tetralogy of Fallot (yes, this is what Jimmy Kimmel's son has, plus he has pulmonary atresia). As a result of her first surgery, her pulmonary valve leaks making her right ventricle work harder and increase in size. It is at a size now that her pulmonary valve needs to be repaired/fixed. Her surgeon hopes to be able to repair her pulmonary valve to reduce the leak. He will not know for sure until he sees it during surgery. If he can repair it, this may be her last surgery. Otherwise, they will use a pig's valve.
May 9 @ 9:37PM
Surgery is tomorrow morning. Check back often tomorrow and later days for updates. Feel free to share this link with anyone you think would like updates on Lauren's progress.