11/13/13
The changes Nicole's treatment team have made to address her headache and nausea seem to have hit the mark. Today she is a different person, more perky and HUNGRY. Incredible appetite: today she had an early morning snack of beef stew and steamed vegetables. Then breakfast of a huge ham sandwich and salad. Then a lunch of a big bowl of beef stew again and a bunch of bread. Then a snack of a bowl of noodle soup and chicken soup. Then dinner of a chicken breast, rice, and broccoli!!! This is the Nicole I know and love, crazy food and all!
And she made it up the stairs to check out her room and choose her own change of clothes. She had to rest several times on the way up the stairs and looked like she she had just completed a 500m freestyle by the time she got to the top, but was beaming from ear to ear. She is taking charge and learning about her medications as well. Tonight she was able to explain some of them to a friend.
What a blessing to see her coming back to her snappy self. We heard from her counselor that the School District should get back to us about home school support before the end of the week. She is really looking forward to that. We will have surgical and lab follow-ups to close out the week as we work on helping her improve her stamina.
Wednesday, November 13, 2013
Tuesday, November 12, 2013
11/12/13
Yesterday was a bit rocky. Sunday night Nicole had nausea and a splitting headache. There wasn't much that seemed to help her: sitting, laying down, heat, cold, meds. She really tried a lot of different foods, beverages, but really chicken soup was all that seemed palatable to her tummy. Unfortunately nothing helped with her headache.
Monday morning I took her in to the doctor, both for scheduled follow-labs and to be seen in urgent care for her nausea, headache. The poor Medical Assistant that was doing triage turned as white as Nicole when we summarized her recent medical history. I don't think she was used to hearing about kids with Nicole's issues. After a flurry of assessments, it turns out they think the symptoms are due to her medications, not some other serious process. Poor kid was worn out after getting rid of her breakfast while the nurse was trying to draw blood. Nicole wasn't at all happy with being wheeled around in a wheelchair during this. Once in the car finally she acknowledged it was probably best to have the wheelchair: "I guess I'm a little tired...." We contacted Children's and after her cardiologist teams talked, they decided to reduce one of her meds. This seemed to help by Tuesday afternoon.
Nicole slept much of the day, but by the evening was advocating to attend a service at church for the sick. I took her with the understanding we would leave when she got tired. Amazing service, huge attendance, standing room only. Luckily we saw a friendly face who had room for us. Cool that a group of people from an East-side church prayer group were in attendance and asked about Nicole; neat for them to see that she was at the service.
By this morning, Nicole's headache was back with a vengeance. Another call to Children's, more consultation, and another medication adjustment. This time the made a further reduction in the dose of one medication and switched a couple other medications so they aren't taken at the same time. Nicole was strong through this and went for a short walk with Carl. She was pretty tired after walking down the street past a couple houses, so came back and slept soundly. She is taking seriously the recommendation from her treatment team to increase her food intake as well as increase her water intake to about 3 liters per day. Luckily she likes water and hit her goal by evening.
We had a little scare: we gave her an extra dose of one of her medications this evening. Quick calls to poison control and Children's got some reassuring answers in short order (I continue to be pleased and amazed with the quick and thorough response of the treatment teams at Children's). Poor Nicole was pretty scared but was finally reassured that she wasn't going to have to go to the hospital or get poked with a needle tonight.
So, it's off to the drug store for a medi-set tomorrow, and Carl created a better medication monitoring sheet.
Yesterday was a bit rocky. Sunday night Nicole had nausea and a splitting headache. There wasn't much that seemed to help her: sitting, laying down, heat, cold, meds. She really tried a lot of different foods, beverages, but really chicken soup was all that seemed palatable to her tummy. Unfortunately nothing helped with her headache.
Monday morning I took her in to the doctor, both for scheduled follow-labs and to be seen in urgent care for her nausea, headache. The poor Medical Assistant that was doing triage turned as white as Nicole when we summarized her recent medical history. I don't think she was used to hearing about kids with Nicole's issues. After a flurry of assessments, it turns out they think the symptoms are due to her medications, not some other serious process. Poor kid was worn out after getting rid of her breakfast while the nurse was trying to draw blood. Nicole wasn't at all happy with being wheeled around in a wheelchair during this. Once in the car finally she acknowledged it was probably best to have the wheelchair: "I guess I'm a little tired...." We contacted Children's and after her cardiologist teams talked, they decided to reduce one of her meds. This seemed to help by Tuesday afternoon.
Nicole slept much of the day, but by the evening was advocating to attend a service at church for the sick. I took her with the understanding we would leave when she got tired. Amazing service, huge attendance, standing room only. Luckily we saw a friendly face who had room for us. Cool that a group of people from an East-side church prayer group were in attendance and asked about Nicole; neat for them to see that she was at the service.
By this morning, Nicole's headache was back with a vengeance. Another call to Children's, more consultation, and another medication adjustment. This time the made a further reduction in the dose of one medication and switched a couple other medications so they aren't taken at the same time. Nicole was strong through this and went for a short walk with Carl. She was pretty tired after walking down the street past a couple houses, so came back and slept soundly. She is taking seriously the recommendation from her treatment team to increase her food intake as well as increase her water intake to about 3 liters per day. Luckily she likes water and hit her goal by evening.
We had a little scare: we gave her an extra dose of one of her medications this evening. Quick calls to poison control and Children's got some reassuring answers in short order (I continue to be pleased and amazed with the quick and thorough response of the treatment teams at Children's). Poor Nicole was pretty scared but was finally reassured that she wasn't going to have to go to the hospital or get poked with a needle tonight.
So, it's off to the drug store for a medi-set tomorrow, and Carl created a better medication monitoring sheet.
Sunday, November 10, 2013
11/10/13
Thankfully Nicole's recovery continues on a positive trend. This weekend seems to be the time to take a breath before getting into the flurry of fellow up appointments. We hit the ground tomorrow with fellow up appointments starting on Monday, and pretty much every day thereafter for the week. Can't wait to get her set up with the hardware for remote interface for her device.
I think Nicole is a bit surprised at the amount of reconditioning she is facing. But she is taking it Yesterday she wanted to get away from the house, so we went to the store. She enjoyed the time but was tuckered out after 15 min of standing. Of course, she didn't want to stop, but we did. She slept over 4 hours straight afterwards.
Then out for a walk today: down the street about 5 houses and back. Had to slow her down at first, then we set a pace that wasn't leaving her too dizzy. She is a trooper!
Onwards and upwards.
Thankfully Nicole's recovery continues on a positive trend. This weekend seems to be the time to take a breath before getting into the flurry of fellow up appointments. We hit the ground tomorrow with fellow up appointments starting on Monday, and pretty much every day thereafter for the week. Can't wait to get her set up with the hardware for remote interface for her device.
I think Nicole is a bit surprised at the amount of reconditioning she is facing. But she is taking it Yesterday she wanted to get away from the house, so we went to the store. She enjoyed the time but was tuckered out after 15 min of standing. Of course, she didn't want to stop, but we did. She slept over 4 hours straight afterwards.
Then out for a walk today: down the street about 5 houses and back. Had to slow her down at first, then we set a pace that wasn't leaving her too dizzy. She is a trooper!
Onwards and upwards.
Friday, November 8, 2013
11/8/13
Starting to get into a routine; it's good to have Alexandra, Nicole's sister, home as well. She had been staying with friends during the ordeal. She has posted drawings, welcome-home posters, and cards she and her classmates have made all over the house. Unfortunately, some are decorating Nicole's room upstairs, and Nicole won't be able to get up there for a little bit. It will be a nice "second surprise" as Nicole progresses.
Of course, nothing comes without some bumps and bruises. Like washing her hair. When she left for the party on 10/26, she had done it up in a bun, with lots of gel and hairspray. One of her visitors had tried to brush it out and braid it at one point in her hospital stay. But now, trying to wash out two weeks of "stuff" and tangles, was a bit of a chore. One which Nicole wasn't too excited to undertake. Funny how the little things can seem so large; when considering what the last two weeks have been.
Medically, Nicole is very stable. The incisions are doing fine, no issues there. Nicole is managing pain well and feeling pretty good in spite of the procedures she has been through.
Being at home is different than at the hospital in many ways. Nicole is doing well, working to be as independent as she can. Have to develop new routines of childcare, appointments, and managing a household again. At least we are all sleeping better now and an anonymous kind-hearted soul had cleaned up all the fallen leaves and mowed the lawn! Thank you to whoever did that!
We have started the discussion and paperwork with the school to have a home instruction assessment. Looking forward to making progress on that in the coming week.
Starting to get into a routine; it's good to have Alexandra, Nicole's sister, home as well. She had been staying with friends during the ordeal. She has posted drawings, welcome-home posters, and cards she and her classmates have made all over the house. Unfortunately, some are decorating Nicole's room upstairs, and Nicole won't be able to get up there for a little bit. It will be a nice "second surprise" as Nicole progresses.
Of course, nothing comes without some bumps and bruises. Like washing her hair. When she left for the party on 10/26, she had done it up in a bun, with lots of gel and hairspray. One of her visitors had tried to brush it out and braid it at one point in her hospital stay. But now, trying to wash out two weeks of "stuff" and tangles, was a bit of a chore. One which Nicole wasn't too excited to undertake. Funny how the little things can seem so large; when considering what the last two weeks have been.
Medically, Nicole is very stable. The incisions are doing fine, no issues there. Nicole is managing pain well and feeling pretty good in spite of the procedures she has been through.
Being at home is different than at the hospital in many ways. Nicole is doing well, working to be as independent as she can. Have to develop new routines of childcare, appointments, and managing a household again. At least we are all sleeping better now and an anonymous kind-hearted soul had cleaned up all the fallen leaves and mowed the lawn! Thank you to whoever did that!
We have started the discussion and paperwork with the school to have a home instruction assessment. Looking forward to making progress on that in the coming week.
Thursday, November 7, 2013
11/7/13
Nicole is home! She is loving it to be in a familiar environment without all the monitors, IV's and wires. She is not yet able to navigate the stairs but can get around the house with a little assistance.
Her medications are somewhat overwhelming. She gave me ideas about creating a tracking sheet for her many meds: some daily, some twice daily, some three times daily, some as needed (not to exceed a certain amount), and several with dosing changes after a certain number of days. Holy Mackerel! We think we have a pretty good checklist created now, so between the checklist and setting reminder alarms on my phone we should be able to stay on top of her medication regimen.
Her sister is beyond ecstatic to have Nicole home; she said it was scary to see her in the hospital. She is a trooper too and made a cool welcome-home banner for her.
It is exciting to see her progress and her confidence. She has been one who really struggled with needles but now to see her help with dressing changes and checking her sutures on her incisions in such a matter-of-fact way is inspiring.
The treatment teams are closely monitoring her blood work, heart, and device function. We will be getting a wireless interface for her ICD (implanted cardiac defibrillator) in the coming week. It will use the land-line communicate on demand to the cardiac device team to keep them/us posted about Nicole's cardiac status. They will not adjust Nicole's device remotely, however, as they want to make sure she is in a medical environment when adjustments are made in the event of something going awry. It is comforting to know that her status will be viewed between visits, though.
The Education team at Children's has been invaluable. Nicole was not sufficiently stabilized to begin school work at the hospital, but the education team has been closely involved in her progress and communicating a detailed plan with Nicole's school counselor. The treatment team have proposed a plan to the counselor involving individualized assistance at home to help her get up to speed. The team has also decided she will need neuropsychological assessment to inform her return to school plan (scheduled in several weeks to allow her to further recover). I had not realized such support is available from the Everett School District; very nice!
Nicole is home! She is loving it to be in a familiar environment without all the monitors, IV's and wires. She is not yet able to navigate the stairs but can get around the house with a little assistance.
Her medications are somewhat overwhelming. She gave me ideas about creating a tracking sheet for her many meds: some daily, some twice daily, some three times daily, some as needed (not to exceed a certain amount), and several with dosing changes after a certain number of days. Holy Mackerel! We think we have a pretty good checklist created now, so between the checklist and setting reminder alarms on my phone we should be able to stay on top of her medication regimen.
Her sister is beyond ecstatic to have Nicole home; she said it was scary to see her in the hospital. She is a trooper too and made a cool welcome-home banner for her.
It is exciting to see her progress and her confidence. She has been one who really struggled with needles but now to see her help with dressing changes and checking her sutures on her incisions in such a matter-of-fact way is inspiring.
The treatment teams are closely monitoring her blood work, heart, and device function. We will be getting a wireless interface for her ICD (implanted cardiac defibrillator) in the coming week. It will use the land-line communicate on demand to the cardiac device team to keep them/us posted about Nicole's cardiac status. They will not adjust Nicole's device remotely, however, as they want to make sure she is in a medical environment when adjustments are made in the event of something going awry. It is comforting to know that her status will be viewed between visits, though.
The Education team at Children's has been invaluable. Nicole was not sufficiently stabilized to begin school work at the hospital, but the education team has been closely involved in her progress and communicating a detailed plan with Nicole's school counselor. The treatment team have proposed a plan to the counselor involving individualized assistance at home to help her get up to speed. The team has also decided she will need neuropsychological assessment to inform her return to school plan (scheduled in several weeks to allow her to further recover). I had not realized such support is available from the Everett School District; very nice!
Wednesday, November 6, 2013
11/6/13
Day after surgery.
By all accounts Nicole is progressing well. The pain meds help her with incision-related pain so she actually got some sleep last night. This morning her pulse is back equally in both feet and she is getting good blood pressure. She had a chest xray to take a look at the left lung as well as the lead placement for the device. The device team came to assess her and said that the leads are in the right place and haven't shifted.
The device team did a test of the device, pacing her heart for a brief period. Everything seems to be working well, both in terms of signal detection and pacing. The whole thing about the device is a bit mind-boggling. One thing gave us quite a shock, particularly Nicole: When they initiate the wireless interface with the device it makes a high pitched buzz/whine from inside her shoulder! You should have seen my and Nicole's eyes! And then the nurse put in the parameters for the pacing cycle, tells Nicole: "You're going to notice your heart rate pick up speed and beat a little harder". She presses a button on the screen and bingo, the change to Nicole and on the monitor is clear. Still trying to get my head around this.....
The treatment team is talking about discharge sometime today, although there are still some details to get worked out. There are a dizzying number of follow-ups to be had, as she now has three separate cardiology teams: one for the device, one for the valve issue, and another for the cardiomyopathy (heart muscle issues). She also has a pediatrician and an internist. They also are wanting to get a neuropsychological assessment to assess current cognitive function and to track recovery. We will have that scheduled in the next several weeks.
PT has had her out for her morning constitutional and given her a clean bill of health. They are expecting 2-4 weeks to get her strength back, but other than some restrictions on the movement of her left arm and lifting restrictions for two months (to avoid disrupting the placement of the device) she can slowly return to activity.
Day after surgery.
By all accounts Nicole is progressing well. The pain meds help her with incision-related pain so she actually got some sleep last night. This morning her pulse is back equally in both feet and she is getting good blood pressure. She had a chest xray to take a look at the left lung as well as the lead placement for the device. The device team came to assess her and said that the leads are in the right place and haven't shifted.
The device team did a test of the device, pacing her heart for a brief period. Everything seems to be working well, both in terms of signal detection and pacing. The whole thing about the device is a bit mind-boggling. One thing gave us quite a shock, particularly Nicole: When they initiate the wireless interface with the device it makes a high pitched buzz/whine from inside her shoulder! You should have seen my and Nicole's eyes! And then the nurse put in the parameters for the pacing cycle, tells Nicole: "You're going to notice your heart rate pick up speed and beat a little harder". She presses a button on the screen and bingo, the change to Nicole and on the monitor is clear. Still trying to get my head around this.....
The treatment team is talking about discharge sometime today, although there are still some details to get worked out. There are a dizzying number of follow-ups to be had, as she now has three separate cardiology teams: one for the device, one for the valve issue, and another for the cardiomyopathy (heart muscle issues). She also has a pediatrician and an internist. They also are wanting to get a neuropsychological assessment to assess current cognitive function and to track recovery. We will have that scheduled in the next several weeks.
PT has had her out for her morning constitutional and given her a clean bill of health. They are expecting 2-4 weeks to get her strength back, but other than some restrictions on the movement of her left arm and lifting restrictions for two months (to avoid disrupting the placement of the device) she can slowly return to activity.
Tuesday, November 5, 2013
11/5/13
Today is surgery day! Scheduled first at 8:00, then last night switched to 10, and then as I was getting on the road at 7:00, received a message that she was bumped to the first case today, and back on at 8:00. Good thing Michele was there to escort her; but I was able to see her as well. She was in good spirits, joking with the surgeon and anesthesiologist even before they gave her the happy medicines. The doctors say the procedure is anywhere between 2 and 4 hours depending on the size of her veins and the complexity of the vein structures.
Thank you folks for all your thoughts and prayers.
Today is surgery day! Scheduled first at 8:00, then last night switched to 10, and then as I was getting on the road at 7:00, received a message that she was bumped to the first case today, and back on at 8:00. Good thing Michele was there to escort her; but I was able to see her as well. She was in good spirits, joking with the surgeon and anesthesiologist even before they gave her the happy medicines. The doctors say the procedure is anywhere between 2 and 4 hours depending on the size of her veins and the complexity of the vein structures.
Thank you folks for all your thoughts and prayers.
Alexandra has such a wonderfully different way of seeing things! The other day she and I were walking from Nicole's room in the Cardiac ICU to the cafeteria and she suddenly said: "Daddy, I just figured it out! The rooms have a lot of windows so the nurses and doctors can look in to take care of the patients. There are even windows at where the nurse sits to see both rooms. And a window between the rooms. And the whole front has a sliding glass door to see in. That's why they call it the 'I See You' (ICU) right?" You know she is really right; that's the point of their design of the unit and rooms, after all.
One more hurdle successfully navigated. Nicole went in for surgery around 8:00, and came into recovery shortly after noon. The surgeon said that the process went well, but spent some extra time working on the placement of the leads in her heart to ensure they both provided good acquisition of the electrical signals as well as good placement for both the pacing and defibrillating functions of the device. In the end he was very happy with the placement and input levels. While in the OR they induced ventricular tachycardia and make sure the device delivered the shock it was supposed to, and all went as planned.
Now it is a time to wait, let her get through the post-op pain, track her vitals. Tomorrow they will do some more xrays to make sure placement has not shifted and will test the device. Once we sail through those hurdles, then it's off to home for recovery...
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