Tuesday, March 20, 2007
Day Fourteen- First Impressions Of A Mother Of Twins
For the first time, I feel like the mother of twins: tired, unwashed, overwhelmed, but also very happy to have Amelia at home.The first couple of days have actually gone quite well. Amelia still sleeps quite a bit, although she was a bit more wakeful today. She is on a strict feeding schedule as she must gain weight quickly since she is so desperately underweight. I’m not used to schedules in terms of baby-care – Jack and Sarah are/were both demand fed – but I’m doing my best. I am coping with the NG tube. As long as she doesn’t pull it out, it is a convenient way to deliver her medications. I do not want to ever have to replace it. The home-care nurse was here yesterday and she assures me that she can do it so I’m perfectly happy to leave it to her. Actually, Amelia has done very well with her oral feedings, especially considering that she’s only been feeding by mouth for less than a week. Breastfeeding is another story. I’m trying to tackle one challenge at a time.
My mom has come to stay this week to help me and I definitely need help. How will I ever be home alone with three kids? Jack has started to smile, which is a lovely sight, but he is still quite fussy, and I’m terribly unsuccessful at getting him to sleep in any place other than my arms. John took him to the park for the first time today because Sarah wanted to go. I think it went pretty well, and he had a great nap afterwards. We may try an outing again tomorrow. Now that we don’t have to run to the hospital every day, I’d like to try to do more routine care more regularly. Jack had a bath tonight. His last bath was on Thursday. Not too impressive.
John has been very good about getting up in the night to feed Amelia. I’m grateful for the chance to stay in bed and feed Jack. I don’t know what John thinks of nighttime parenting, but with twins, I think he’ll become more familiar with it than he ever really wanted to. Sarah has also been coping well with two babies. She doesn’t seem jealous of them. She was home from daycare today, which made our day somewhat more challenging, and she watched a lot of T.V., but she’s doing her best to deal with being housebound, more or less. I’d like Amelia to gain more weight, or the weather to get considerably warmer, before I try a walk with her. Actually, I’d also like to avoid the question that many people will probably ask: why is one baby so much larger than the other one?
We return to Sick Kids on Thursday for the Post-Op Clinic. Poor Amelia will be having an X-ray, an Echocardiogram, and visits with the nurse practitioner and the dietician. I think she’ll also be getting the last of her stitches removed. This kid has already had more X-rays in her short life than John and I have probably had combined!
If anyone wants to help us out, now is the time. Come on up and change a diaper, give a bottle, pop in a soother. And bring food!
Thanks to Sheri and Spencer for lending us a basket for Amelia to sleep in. Being able to carry her from place to place without disturbing her has been great. The box of diapers is also useful, but in a much different way.
Plls, gifts, and postings on this blog. Your concern and best wishes for all of us have really helped us get through this difficult time. Keep ‘em coming.
Personally, I’d also like to thank everyone for all of their emails, phone calls, gifts, and postings on this blog. Your concern and best wishes for all of us have really helped us get through this difficult time. Keep ‘em coming.
Day Eleven-Thirteen- Amelia Is Home
Melissa and I spent Saturday night at the hospital and brought Amelia home with us Sunday afternoon.
Amelia
Amelia came home with her NG tube and 7 types of medication. I don’t mind getting up at all hours to do feeding, but I will hide from the NG tube at all cost. Fortunately, Melissa has accepted responsibility for NG maintenance until I build up enough courage to step up to the plate.
Around 10pm last night, we discovered that one of the medicines doesn’t sit well with our little patient (we have the laundry to prove it) but like the naïve parents that we are, we soldiered on with another batch of food to replace the evening feeding lost.
Discharge Dog-Tired
Throughout this whole adventure, we had always thought that the two of us would be choked up as we made our Sick Kids departure.
But the fact is—we are just too spent to be emotional about it. We are sick of the late night/all day trips to the Cardiac ward. We are fed up with having to fight through the commute. We are sick of being separated from our sickest child, but are also mildly offended that the hospital has the expectation of 24 hour parental presence on the floor (how is that possible with two other ones at home?).
The whole ordeal has left us completely drained.
When you spend really any length of time at Sick Kids, you develop a ‘sixth sense’ that is attuned to what everyone else is going through. In very little time at all, in addition to the concerns for your own child’s welfare, you also shoulder stress for all the other families that are in the same boat as you.. You don’t know anything about them, but you can’t help but care for their kids as you worry about your own. It’s an odd feeling— sort of like tunnel vision with portholes. And it can wear you down.
We are happy Amelia is home, and while we can’t help but feel some sense of relief, we know that there are still a lot of challenges ahead.
Amelia
Amelia came home with her NG tube and 7 types of medication. I don’t mind getting up at all hours to do feeding, but I will hide from the NG tube at all cost. Fortunately, Melissa has accepted responsibility for NG maintenance until I build up enough courage to step up to the plate.
Around 10pm last night, we discovered that one of the medicines doesn’t sit well with our little patient (we have the laundry to prove it) but like the naïve parents that we are, we soldiered on with another batch of food to replace the evening feeding lost.
Discharge Dog-Tired
Throughout this whole adventure, we had always thought that the two of us would be choked up as we made our Sick Kids departure.
But the fact is—we are just too spent to be emotional about it. We are sick of the late night/all day trips to the Cardiac ward. We are fed up with having to fight through the commute. We are sick of being separated from our sickest child, but are also mildly offended that the hospital has the expectation of 24 hour parental presence on the floor (how is that possible with two other ones at home?).
The whole ordeal has left us completely drained.
When you spend really any length of time at Sick Kids, you develop a ‘sixth sense’ that is attuned to what everyone else is going through. In very little time at all, in addition to the concerns for your own child’s welfare, you also shoulder stress for all the other families that are in the same boat as you.. You don’t know anything about them, but you can’t help but care for their kids as you worry about your own. It’s an odd feeling— sort of like tunnel vision with portholes. And it can wear you down.
We are happy Amelia is home, and while we can’t help but feel some sense of relief, we know that there are still a lot of challenges ahead.
Thursday, March 15, 2007
Day Ten- Intuitive Care??
To be honest, not much happened today but here is a brief.Melissa, Jack and I talked to the sub-Conclave about Amelia’s impending homecoming. Well, I suppose Jack was more of a passive participant in the discussion.
To be honest, we are a little worried about Amelia coming home too early. Her vitals have steadily improved, but occasionally she still has bradycardia and shows decreased SAT. The nurse’s response to this has become rather concerning. Just today, the nurse simply turned the monitor off and told us to develop and rely on more of an intuitive sense of her medical status and condition! I laughed out loud and I think that this response sort of offended her. Within 30 minutes, the Nurse Practitioner was down to the room for a discussion.
The end result of this little meeting was that Amelia’s homecoming has been pushed off from potentially tomorrow (Friday) to sometime into middle or late next week. In exchange for this concession, I am probably going to be spend both nights this weekend at Sick Kids sleeping on Amelia’s couch. Imagine that…my 2 month old is putting me up for the night. I am going to nursing bootcamp.
Spending the day at the hospital is becoming pretty boring. Last week at this time, I spent alot of time pacing and hand-holding, but now Melissa and I just sit around in Amelia’s room and watch her sleep. Sure, things get pretty crazy when its diaper changing time, but really I seem to be spending much of my time watching TV.
I watched the Beachcombers today…I haven’t seen that in a long time, (that Robert ‘Relic’ Clothier is a national treasure). During my next visit, I’m going to watch the Sick Kids surveillance camera. Im sure that will be television at its finest.
Wednesday, March 14, 2007
Day Nine- Caer De La Lista Crítica
Melissa and I rolled into the hospital this morning to find Amelia comfortably settled in her own private room. Within about 10 minutes of our arrival, Mary walked in as well (she was downtown for an appointment and dropped by). We spent a few hours visiting with our little girl and discussing her current plan of care with the sub-Conclaves. I always suspected that that it was the nurses that keep the modern hospital running, and this whole experience has only served to confirm that. Since Amelia emerged from OR, I don’t think we’ve spoken an actual cardiologist more than twice. I suppose this is a good sign—Amelia has fallen off of the Critical List.
Amelia had an echo today. We were told that her patch (separating her left and right ventricles) is still leaking a bit, but this is normal and it will close over time. The test also confirmed that her pulmonary arteries are rather small, which means that she will require stents sometime in the next 3 to 6 months. But this procedure is not quite as invasive as what she went through last week. For now, our focus must be on Amelia gaining weight and getting home
The big question is now when Amelia will be coming home. Melissa and I would have preferred for A to have gained more weight (and escape the clutches of the NG tube) but, at the end of the day, there are other kids coming in and her bed is needed. It’s scary to think that there are other kids in worse shape.
I suppose that’s one of the sad things about Sick Kids Hospital—no matter how bad things are with your own child, there is always another child in worse shape. That’s life.
I suppose that’s one of the sad things about Sick Kids Hospital—no matter how bad things are with your own child, there is always another child in worse shape. That’s life.
Tuesday, March 13, 2007
Day Eight-An Embarrassment Of Riches
I have to be honest: I’ve been cheating at the whole blog thing recently.
We originally planned to alternate the responsibility of updating the blog on a daily basis. But my last two submissions have been point form thoughts converted and ghost-written by M, (although I have to admit, the witty stuff was added by me later on..just to give credit where credit is due). I feel that it makes perfect sense to have the English teacher do all the writing, but Melissa seems to think that sleep is more important.
Anyways, I feel shame and I have decided to resume pulling my own blog-weight.
But it’s late now, and sadly this entry will be a little bit of an unedited rant. Sorry in advance. Bethune staffers-- put down your red pens.
Amelia
Sometime overnight, Amelia will be moved into a private room- potentially her last bed change before finally coming home.
From a treatment perspective, really only the NG tube and the Lascix/Tylenol remain. The PICC line has been capped (but not removed as of yet) and all the abdominal drainage tubes are gone. The room air apparatus is present, but is no longer used. At this point, this is the least number of lines in (and out) of Amelia since birth and this is great news because it greatly reduces the chance of infection. It also makes it alot easier to cuddle with her.
We met with an Occupational Therapist and discussed feeding strategies. We are planning to talk to the Conclave about the possibility of having Amelia transferred closer to home- perhaps Markham-Stouffville Hospital- if they anticipate the balance of her stay being more than one week.
I recently received another more chilling piece of information.
Yesterday, as I was being funneled/gouged in the SC cafeteria checkout line, Amelia2’s mother tapped me on the shoulder. I believe that in an earlier posting, Melissa had mentioned that there are actually two Amelias in the Cardiac ward at the present time and both were scheduled for surgery on last Tuesday.
Amelia2's mother told me that on the day of the surgery, she caught one of the nurses tagging her daughter with our Amelia’s surgical orders. That, of course, would mean that our daughter’s surgeon would have received incorrect marching orders as well. I found it ironic—only moments earlier, the cook had crossed my order up with….Amelia2’s. Go figure. An easy mistake I suppose, but it could have had dire consequences.
I wasn’t there with Amelia when they wheeled her into OR last week. This had been a promise I had made to her at the end of every late night visit throughout this whole ordeal. If something had happened that day, I would have been heartbroken. Melissa assures me that she would have caught this miscue but it really doesn’t make me feel any better about it.
Always arrive early for surgery, and write the patient surname across the forearm. Better safe than sorry.
We originally planned to alternate the responsibility of updating the blog on a daily basis. But my last two submissions have been point form thoughts converted and ghost-written by M, (although I have to admit, the witty stuff was added by me later on..just to give credit where credit is due). I feel that it makes perfect sense to have the English teacher do all the writing, but Melissa seems to think that sleep is more important.
Anyways, I feel shame and I have decided to resume pulling my own blog-weight.
But it’s late now, and sadly this entry will be a little bit of an unedited rant. Sorry in advance. Bethune staffers-- put down your red pens.
Amelia
Sometime overnight, Amelia will be moved into a private room- potentially her last bed change before finally coming home.
From a treatment perspective, really only the NG tube and the Lascix/Tylenol remain. The PICC line has been capped (but not removed as of yet) and all the abdominal drainage tubes are gone. The room air apparatus is present, but is no longer used. At this point, this is the least number of lines in (and out) of Amelia since birth and this is great news because it greatly reduces the chance of infection. It also makes it alot easier to cuddle with her.
We met with an Occupational Therapist and discussed feeding strategies. We are planning to talk to the Conclave about the possibility of having Amelia transferred closer to home- perhaps Markham-Stouffville Hospital- if they anticipate the balance of her stay being more than one week.
I recently received another more chilling piece of information.
Yesterday, as I was being funneled/gouged in the SC cafeteria checkout line, Amelia2’s mother tapped me on the shoulder. I believe that in an earlier posting, Melissa had mentioned that there are actually two Amelias in the Cardiac ward at the present time and both were scheduled for surgery on last Tuesday.
Amelia2's mother told me that on the day of the surgery, she caught one of the nurses tagging her daughter with our Amelia’s surgical orders. That, of course, would mean that our daughter’s surgeon would have received incorrect marching orders as well. I found it ironic—only moments earlier, the cook had crossed my order up with….Amelia2’s. Go figure. An easy mistake I suppose, but it could have had dire consequences.
I wasn’t there with Amelia when they wheeled her into OR last week. This had been a promise I had made to her at the end of every late night visit throughout this whole ordeal. If something had happened that day, I would have been heartbroken. Melissa assures me that she would have caught this miscue but it really doesn’t make me feel any better about it.
Always arrive early for surgery, and write the patient surname across the forearm. Better safe than sorry.
So now reality is starting to set in. How are we going to handle life with such a full house? I keep thinking of something that blurted instinctively from my mouth the moment after Melissa and I realized that twins were on the way. They really are an embarrassment of riches and we are lucky to have them. All three.
Monday, March 12, 2007
Day Seven- Eat!!
Amelia
Today was a really good day. When John and I arrived in the PCCU, Amelia’s nurse was taking the last of her major lines out – one of her central lines and her arterial line. She had also been moved out of her Ohio bed and was in a crib again. All of this was a prelude to the news that she would be moving back to 4D shortly, which is the milestone we have been eagerly awaiting all weekend. Amelia was not happy with all of the work the nurses were doing on her, but when they were finished, we got the greatest reward: we were able to hold her for the first time since her surgery. Clearly this made a huge difference to Amelia because she promptly stopped crying and went peacefully to sleep.
At about 1:30, I help the nurse take Amelia upstairs and she was put back in the step-down, or constant observation, room, which is the room she first came into when she moved to 4D from the NICU. It felt like we had gone full circle. The fourth floor was like a breath of fresh air. There is a lot more hustle and bustle, a lot more happy faces, than anything we saw in the PCCU. It felt like real life.
A nurse-practitioner examined Amelia and was impressed with her progress. Amelia’s job now is to learn to eat for herself and to prove that she can gain weight. Right now, at nine weeks of age, she only weighs 2.1 kg (about 4 ½ pounds). Her brother weighs about twice that. Once she achieves those goals, she can come home; the nurse indicated this will be in a week or two. If she gets tired while she eats, she may have to come home with an NG tube, but I guess we can handle that. We may speak to the staff about the possibility of having Amelia transferred to Markham-Stouffville Hospital for the last part of her treatment because it’s only a five minute walk from our house. That would be nice.
We’ve made such huge progress in the last week. Amelia is pink, her vital signs are good; it’s hard to believe that her heart is actually working properly now.
Visitors
Amelia’s Nana (my mom) came to see Amelia for the first time since her surgery. She has spent a lot of time looking after Sarah, but Sarah went to daycare today. Uncle Jeff and Aunt Jen came all the way from Ottawa this morning to see Amelia and each got a chance to cuddle with her. They brought a toy lion for Amelia because she has fought all of this adversity like a lion. We couldn’t agree more.
Today was a really good day. When John and I arrived in the PCCU, Amelia’s nurse was taking the last of her major lines out – one of her central lines and her arterial line. She had also been moved out of her Ohio bed and was in a crib again. All of this was a prelude to the news that she would be moving back to 4D shortly, which is the milestone we have been eagerly awaiting all weekend. Amelia was not happy with all of the work the nurses were doing on her, but when they were finished, we got the greatest reward: we were able to hold her for the first time since her surgery. Clearly this made a huge difference to Amelia because she promptly stopped crying and went peacefully to sleep.
At about 1:30, I help the nurse take Amelia upstairs and she was put back in the step-down, or constant observation, room, which is the room she first came into when she moved to 4D from the NICU. It felt like we had gone full circle. The fourth floor was like a breath of fresh air. There is a lot more hustle and bustle, a lot more happy faces, than anything we saw in the PCCU. It felt like real life.
A nurse-practitioner examined Amelia and was impressed with her progress. Amelia’s job now is to learn to eat for herself and to prove that she can gain weight. Right now, at nine weeks of age, she only weighs 2.1 kg (about 4 ½ pounds). Her brother weighs about twice that. Once she achieves those goals, she can come home; the nurse indicated this will be in a week or two. If she gets tired while she eats, she may have to come home with an NG tube, but I guess we can handle that. We may speak to the staff about the possibility of having Amelia transferred to Markham-Stouffville Hospital for the last part of her treatment because it’s only a five minute walk from our house. That would be nice.We’ve made such huge progress in the last week. Amelia is pink, her vital signs are good; it’s hard to believe that her heart is actually working properly now.
Visitors
Amelia’s Nana (my mom) came to see Amelia for the first time since her surgery. She has spent a lot of time looking after Sarah, but Sarah went to daycare today. Uncle Jeff and Aunt Jen came all the way from Ottawa this morning to see Amelia and each got a chance to cuddle with her. They brought a toy lion for Amelia because she has fought all of this adversity like a lion. We couldn’t agree more.
Sunday, March 11, 2007
Day Six- No More Funny Stuff
Amelia continues to do pretty well. She is pink and her vital signs continue to strengthen, which are all positive signs, but we are now entering a phase where her physicians will more aggressively push to wean Amelia off the balance of her pain medication.We are somewhat concerned about tremors in her hands. These fits seem to cease when we touch her (thereby ruling out seizures). We think they started about a day after Amelia’s team reduced her Morphine doses, and so we suspect that she might be going through some sort of withdrawal. We will wait for the conclave to come to that conclusion tomorrow.
One thing is for sure, reviewing Amelia’s prescription records as of late is like snooping through Elvis’ medicine cabinet circa 1976.
Amelia is much more alert as each day passes, but she seems to find it difficult to settle down to sleep. Her beloved pacifier has been returned to her, which helps, but she is awake far too much for an infant who is recovering from major surgery. Is she in pain? Is she suffering from withdrawal? Is it something else? Who knows. Melissa and I have uncovered a few settling tricks – she likes to be sung to, she likes to have her head stroked and her bum patted – but she really likes to be picked up and cuddled.
But really, who doesn’t like any of these things?
She still has a few too many lines attached to be cuddled, but hopefully we can hold her tomorrow.
Amelia had many visitors today. Granma and Grampa Woodward came by to see her and so did Uncle Mike and Carmela (pictured above with brother Jack). Like the rest of the hospital on the weekend, the second floor was relatively quiet, since only emergency surgeries are done. The best part of visiting on the weekends is the parking; the worst part is it’s hard to find medical personnel other than nurses, who know everything anyway, to talk to.
This evening, the nurse has just informed us that Amelia will be moved back to the fourth floor, the Cardiac Unit, tomorrow after rounds. Let’s keep our fingers crossed.
Saturday, March 10, 2007
Day Five- We Are Not Alone?
Amelia continues to amaze us with her progress so far. The big news for today is that she was extubated at about 9:00 p.m. We were hoping to be there when this happened, as it can be quite a stressful procedure. Unfortunately, the necessary team could not be assembled before the evening shift change, and we had to pick Sarah up at my mom and dad’s house. When I spoke to the nurse, though, she was pleased with how Amelia was coping. If her trachea swells, she may have to be placed back on the ventilator, but everyone we spoke to is quite optimistic that this won’t happen. I was told to bring clothes for tomorrow, so I’m hopeful that she’ll actually be able to get dressed, which will be a special treat for Amelia. Imagine wearing nothing but a diaper for two months!
John spent quite a bit of time with Amelia today. He helped Habiba, her nurse, to bathe her and do some other maintenance. She also had her Foley catheter removed, but I’m pretty sure no one let John help with that. Habiba was Amelia’s day nurse on Wednesday, and she couldn’t believe how much progress she had made. Habiba is from Lancashire, which is near Manchester (in England, not Scugog Township), and she really likes to talk, so I feel like I know everything there is to know about Amelia’s condition.Actually, I find that everyone on the second floor likes to talk. During our six weeks in the NICU, I never had more than a thirty-second conversation with any other parent, and I always found that reticence to talk very strange. After all, we were all going through basically the same thing and could probably understand each other better than anyone else. Here in the PICU, people are happy to share their stories. I met a family today that I had heard about from a few other people. On January 4th they had twins, a boy and a girl. They were born at 34 weeks and weighed almost the same as Jack and Amelia. The girl has a heart defect, although not the same one as Amelia’s, and the boy is healthy. Their daughter is currently awaiting surgery, but is struggling to overcome a few other problems first. It’s amazing how many similarities there are between our situations.
(Melissa)
Friday, March 9, 2007
Day Four -- Eyes Wide Open
Amelia’s condition is improving. Both of her chest tubes have now been removed, and her medical team is working on weaning her off the ventilator. To give you an idea of her progress, one number on the ventilator, and I have no idea what this number means, was set at thirty just after her surgery. By the time John and I left the hospital late this afternoon, it was set at ten. (Actually, I just called the hospital – it’s 11:30 – and it’s now set at zero so she’s breathing on her own. The tubes won’t be removed until they’re sure she can handle this.) She looks much better without the chest tubes and the suspension system, both of which were rather grisly. She opened her eyes today and was awake while John and I visited, but she doesn’t seem comfortable. She doesn’t seem to be in a lot of pain, but she’s not exactly thrilled to be there either. In fact, she was awake for too long; the nurse was planning to give her some medication to help her sleep by the time we left. Aunt Karen also came for a visit and peppered the nurse with detailed medical questions. The nurse later asked me if Karen had any medical background. Anyway, all of her numbers are better today than they were yesterday, and John and I are both very pleased with her progress. We can only hope that she continues to improve and will be taken off the ventilator soon.
And how’s Jack doing? Jack, or, as I like to call him, Twin A, is doing very well. He weighed about 8 ½ pounds as of last Sunday, so he’s already doubled his birth weight. He’s starting to settle down a bit and become more predictable, with regular awake and alert periods interspersed with lots of eating and sleeping. This newborn period feels like it’s going on forever – he’s almost nine weeks old, but is only like a two-week-old baby. Last night, he decided to wake up at midnight and so wasn’t asleep again until 2:30. Then, he woke up to feed at 4:30 and, because of his cold, I didn’t get back to bed until after 6:00. Those of you who have older children are laughing heartily right now. I shudder to imagine nighttime parenting with twins. Will I ever sleep again? As I write this blog, Jack’s hanging out with Dad, who is dozing in the chair while Jack waves his hands around. I hate having to take him to the hospital every day, but that’s breastfeeding for you. Tamar came today to help us with Jack. She took him for a nice walk in the stroller, and he behaved quite well. She also brought us some very good bread.
Thanks Tamar!
And how’s Jack doing? Jack, or, as I like to call him, Twin A, is doing very well. He weighed about 8 ½ pounds as of last Sunday, so he’s already doubled his birth weight. He’s starting to settle down a bit and become more predictable, with regular awake and alert periods interspersed with lots of eating and sleeping. This newborn period feels like it’s going on forever – he’s almost nine weeks old, but is only like a two-week-old baby. Last night, he decided to wake up at midnight and so wasn’t asleep again until 2:30. Then, he woke up to feed at 4:30 and, because of his cold, I didn’t get back to bed until after 6:00. Those of you who have older children are laughing heartily right now. I shudder to imagine nighttime parenting with twins. Will I ever sleep again? As I write this blog, Jack’s hanging out with Dad, who is dozing in the chair while Jack waves his hands around. I hate having to take him to the hospital every day, but that’s breastfeeding for you. Tamar came today to help us with Jack. She took him for a nice walk in the stroller, and he behaved quite well. She also brought us some very good bread.
Thanks Tamar!
Day Four- Cutting the Lines
I phoned Amelia’s room this morning and the nurse gave me some more good news.
Amelia’s respirator was turned down from 30 to 15 breaths per minute over the course of the evening. That means that Amelia is currently breathing ½ on her own.
As always, the medical team is cautious about this stage. They tend not to pull the kids off ‘cold turkey’ but typically wean them off slowly over a period of days. In alot of cases, kids are very slow to respond and spend weeks on ventilation.
This stage of the recuperative process can be very difficult, but Amelia seems to be responding well.
During rounds, the conclave has also decided its time to remove Amelia’s abdominal (drainage) tube. While this is a positive step, it means sedation will be increased for a few hours this morning. From what I am told, it’s a two second procedure, but its big enough that they prefer the patient be out.
We will keep you all posted.
Amelia’s respirator was turned down from 30 to 15 breaths per minute over the course of the evening. That means that Amelia is currently breathing ½ on her own.
As always, the medical team is cautious about this stage. They tend not to pull the kids off ‘cold turkey’ but typically wean them off slowly over a period of days. In alot of cases, kids are very slow to respond and spend weeks on ventilation.
This stage of the recuperative process can be very difficult, but Amelia seems to be responding well.
During rounds, the conclave has also decided its time to remove Amelia’s abdominal (drainage) tube. While this is a positive step, it means sedation will be increased for a few hours this morning. From what I am told, it’s a two second procedure, but its big enough that they prefer the patient be out.
We will keep you all posted.
Thursday, March 8, 2007
Day Three -- Amelia's Progress
Things are still very positive.Amelia
Amelia actually had two nurses today- one RN and one student. Both were busy throughout the day removing tubes, and dismantling Amelia’s suspension system. When I arrived, they had already lowered her morphine dose. Over the next few days, Amelia will be brought out of her sedation so that her reliance on the ventilator can be reduced and eventually discontinued. This, apparently, is a slow process, especially for a premature baby. She will have to be weaned off oxygen and learn to breathe for herself again, which seems ironic to me because she needed almost no support for her breathing when she was born. One of Amelia’s chest tubes was removed today; she still has another one to drain fluid from her chest cavity. The nursing staff changed Amelia's dressings during my visit, and so I saw her scar for the first time. It isn't exactly what I would call a beauty mark, but it is something that I have been told will fade with time. I consider it a medal of bravery.
I have posted a photo of Amelia without her bandages, so, if you’re squeamish, you might not want to look. But it really isnt as bad as you would expect.
I have posted a photo of Amelia without her bandages, so, if you’re squeamish, you might not want to look. But it really isnt as bad as you would expect.
The best part of the visit today was that Amelia opened her eyes for the first time since the surgery. I had a nice chat with her. I told her that she had been very brave and that she needed to continue to be strong. As I talked to her, I watched her heart rate drop to 161: a much better number than the 188 of yesterday. And as of this evening, her resting heart rate had dropped to the low 150s.
Support
Many people continue to offer their support. Melissa’s friend, Tamar Nelson, came in for a visit, hoping to help us with Jack. She didn’t know that Jack was home today with his cold. Don’s company, York Marble, sent a lovely basket of flowers and a Pooh Bear, which had to stay at the hospital or run the risk of joining Sarah's minion of stuff toys! As far as the flowers were concerned, I had to keep an eye on them throughout the day as the staff circled. But they do look very attractive in our family room.
Thanks again to everyone who has been calling and emailing with their best wishes. We really do appreciate it.
Thanks again to everyone who has been calling and emailing with their best wishes. We really do appreciate it.
Day Three- Captain's Log
Amelia
Melissa called Amelia’s room first thing this morning to see how things progressed overnight.
It sounds as if the suspension system was taken down. She is tolerating her feeds well, and the chest tubes are coming out later today. There are plans in place now to decrease her muscle relaxants, which will allow the medical team to begin weaning Amelia from the ventilator.
Sounds like another big day ahead.
Home
Things just a little tougher in that Jack seems to have caught a cold. We’ve been bringing Jack to the hospital everyday, so I suppose it was only a matter of time before he came down with something.
Around 4am, Junior started ‘whistling’. I got up with him so that Melissa might have a chance to sleep, (if someone could figure out a way to teach a 2 month old how to blow their nose, they would be on Oprah’s couch in a month). Father and Son relocated to the family room and watched Star Trek. He seemed to enjoy the whole experience, but Dad would have preferred an extra hour of sleep.
For the next day or two, it looks like its just Amelia and Dad at the PICCU.
Melissa called Amelia’s room first thing this morning to see how things progressed overnight.
It sounds as if the suspension system was taken down. She is tolerating her feeds well, and the chest tubes are coming out later today. There are plans in place now to decrease her muscle relaxants, which will allow the medical team to begin weaning Amelia from the ventilator.
Sounds like another big day ahead.
Home
Things just a little tougher in that Jack seems to have caught a cold. We’ve been bringing Jack to the hospital everyday, so I suppose it was only a matter of time before he came down with something.
Around 4am, Junior started ‘whistling’. I got up with him so that Melissa might have a chance to sleep, (if someone could figure out a way to teach a 2 month old how to blow their nose, they would be on Oprah’s couch in a month). Father and Son relocated to the family room and watched Star Trek. He seemed to enjoy the whole experience, but Dad would have preferred an extra hour of sleep.
For the next day or two, it looks like its just Amelia and Dad at the PICCU.
Wednesday, March 7, 2007
Day Two- 30 Hours and Counting
Ok, so what happened today…Amelia
I attended rounds again today and, in general, Amelia’s doctors are cautiously optimistic. They appear happy with the result of their suspension system and plan to begin reducing the elevation and sedation levels throughout the night. They have already resumed breast milk and are hopeful that they will be able to increase food intake overnight. They are still a little concerned about her heartrate and plan to battle ventricle stiffness with new medication in the coming days. Her heart must relearn how to beat, and that will simply take time.
Interesting bit of new information today- while the medical team patched the gap between Amelia’s ventricles, they also created a new smaller hole between the upper chambers of the heart. Apparently this man-made opening helps the circulatory system better manage pressure and blood flow as the body adjusts to the reconstruction. I asked the ‘conclave’ whether they planned to ever repair the modification and the reply was something I seem to hear almost constantly these days, “it all depends…”.
Another cardiac patient was wheeled into Amelia’s room today, and her name was Amelia too! What complicates things even more is that they both have the same doctor and fellow. The nurses have already instructed me to give my full name when I call in but right now I’m more concerned about prescriptions being crossed in the night.
Uncle Mike dropped in today to see Amelia and she appreciated that alot. Mike was the first family member to visit Amelia since the operation. I’m sure the whole experience was a shock for him, but we love him for it. Way to go Urban Mike!
The Sick Kids Hotel
Sick Kids is like the Hotel California: parents arrive but they seem unable to leave. There were some folks camped out in the waiting room last night at 8pm, and they were still sleeping on the same couches at 10am today. And Sick Kids actually seems to encourage this by offering guests sheets and linens. All those late nights at the NICU in February and I was under the impression that I was the only parent in the place. I couldn’t have been more wrong.
I suppose we are lucky in that we have such a great place so close to home.
Day Two-PICCU Awaits
(a morning update by Dad)
Amelia made it through her first night in PICCU.
Post-Surgery
Before we left last night, we were told that there was a 50% chance that the Surgical staff might need to re-open Amelia's chest cavity. The heart tends to swell in the hours post-surgery and this could cause trouble. The best way to fix this issue is to simply open the chest up until the swelling goes down. So far, this has not been necessary and we think that if we can get through today…we should be in the clear.
General Status
I phoned the ward last night at 11pm and 3am. In both cases, I was told that Amelia was stable and that some components were improving (I think they were particularly happy with improvements in Lactic but were continuing to monitor her Venus-something. We will learn more about these terms in the coming days). Her caregivers' goal today will be to start weaning her off of some of her medications.
Jack isn’t allowed at bedside, so Melissa and I will take running in and out of the ward throughout the day. If you wander into the waiting room on the Cardiac floor…you might see Jack and I there:
Yesterday was hard, but there was some sense of relief in that Amelia’s day had finally come. I suspect today will be one of the hardest days we will face throughout this whole ordeal.
Amelia made it through her first night in PICCU.
Post-Surgery
Before we left last night, we were told that there was a 50% chance that the Surgical staff might need to re-open Amelia's chest cavity. The heart tends to swell in the hours post-surgery and this could cause trouble. The best way to fix this issue is to simply open the chest up until the swelling goes down. So far, this has not been necessary and we think that if we can get through today…we should be in the clear.
General Status
I phoned the ward last night at 11pm and 3am. In both cases, I was told that Amelia was stable and that some components were improving (I think they were particularly happy with improvements in Lactic but were continuing to monitor her Venus-something. We will learn more about these terms in the coming days). Her caregivers' goal today will be to start weaning her off of some of her medications.
Jack isn’t allowed at bedside, so Melissa and I will take running in and out of the ward throughout the day. If you wander into the waiting room on the Cardiac floor…you might see Jack and I there:
Yesterday was hard, but there was some sense of relief in that Amelia’s day had finally come. I suspect today will be one of the hardest days we will face throughout this whole ordeal.
Tuesday, March 6, 2007
Day One- Spending a Tuesday with Dr.Glen
Amelia finally had her surgery today. Let me tell you the story of our day.
John, Jack and I barely made it to the hospital at 10:15 before they took Amelia to the operating room (traffic – stupid, ice-covered CN Tower). Fortunately for me, John dropped me off before he parked the car, so I was able to walk down to the waiting room with her and give her a kiss goodbye. She was asleep, and I didn’t want to wake her up because she’s so crabby when she’s not allowed to eat. Just after they wheeled her away, John arrived. I felt so bad that he didn’t get to see her.
We then proceeded to the Surgical Waiting Room, which is staffed by members of the Women’s Auxiliary, who are pretty rabid about making everyone follow the rules. The place was pretty packed. Most people’s kids were having shorter procedures than Amelia, but two or three other couples were there for a long time like us. We waited and waited – of course we knew it would be a long wait. My dad dropped by for a while, we had lunch, I fed Jack, he slept, and, actually, the time passed more quickly than I thought it would.
Eventually our surgeon came into the room and took us into a private room to speak to us. He told us that the surgery had gone as expected and was just about finished; they would wait another hour for the bleeding to stop before they decided whether or not to close the incision. One bit of new information was that Amelia’s right ventricle was rather “thick”. The muscle had stiffened up from having to work so hard for the last several weeks, so it doesn’t relax fully. This problem will resolve itself over the next few days as the heart is able to work properly for the first time.
We waited another hour or so and the surgeon came back into the waiting room to tell us that they had closed the incision. In the meantime, John’s parents arrived to help us with Jack. Again, we waited for Amelia to be brought to the PCCU (Pediatric Critical Care Unit). For me, this was the longest wait of the day. I was feeling very tired and quite drained at this point. My dad came back and my sister also came to the hospital to lend us much-needed moral support. Finally, at about 6:45, we were allowed in to see Amelia.
Obviously, there were many tubes and machines connected to our tiny daughter. She is heavily sedated. She needs a ventilator to help her breathe, she has a chest tube to drain fluid, she has an external pacemaker just in case it’s needed. The patch on her head monitors her brain. She has a couple of central lines to deliver medicines and fluids. She’s on three antibiotics, a couple of heart medications, and, of course, morphine. The most grisly sight was two long pieces of surgical thread that were stitched through her chest and suspended to the apparatus suspended above her bed. Because her incision is closed, and her heart is swelling, the threads are pulling her chest wall away from her heart to give it more room. If the incision has to be reopened, it will likely happen overnight.
At first, all we see are the tubes, wires and machinery. Soon, though, we could see our daughter, the person underneath it all. I stroked her head and held her hand and told her that she had been very brave and that she needed to continue to be strong. I believe that she will be.
Melissa
John, Jack and I barely made it to the hospital at 10:15 before they took Amelia to the operating room (traffic – stupid, ice-covered CN Tower). Fortunately for me, John dropped me off before he parked the car, so I was able to walk down to the waiting room with her and give her a kiss goodbye. She was asleep, and I didn’t want to wake her up because she’s so crabby when she’s not allowed to eat. Just after they wheeled her away, John arrived. I felt so bad that he didn’t get to see her.
We then proceeded to the Surgical Waiting Room, which is staffed by members of the Women’s Auxiliary, who are pretty rabid about making everyone follow the rules. The place was pretty packed. Most people’s kids were having shorter procedures than Amelia, but two or three other couples were there for a long time like us. We waited and waited – of course we knew it would be a long wait. My dad dropped by for a while, we had lunch, I fed Jack, he slept, and, actually, the time passed more quickly than I thought it would.
Eventually our surgeon came into the room and took us into a private room to speak to us. He told us that the surgery had gone as expected and was just about finished; they would wait another hour for the bleeding to stop before they decided whether or not to close the incision. One bit of new information was that Amelia’s right ventricle was rather “thick”. The muscle had stiffened up from having to work so hard for the last several weeks, so it doesn’t relax fully. This problem will resolve itself over the next few days as the heart is able to work properly for the first time.
We waited another hour or so and the surgeon came back into the waiting room to tell us that they had closed the incision. In the meantime, John’s parents arrived to help us with Jack. Again, we waited for Amelia to be brought to the PCCU (Pediatric Critical Care Unit). For me, this was the longest wait of the day. I was feeling very tired and quite drained at this point. My dad came back and my sister also came to the hospital to lend us much-needed moral support. Finally, at about 6:45, we were allowed in to see Amelia.
Obviously, there were many tubes and machines connected to our tiny daughter. She is heavily sedated. She needs a ventilator to help her breathe, she has a chest tube to drain fluid, she has an external pacemaker just in case it’s needed. The patch on her head monitors her brain. She has a couple of central lines to deliver medicines and fluids. She’s on three antibiotics, a couple of heart medications, and, of course, morphine. The most grisly sight was two long pieces of surgical thread that were stitched through her chest and suspended to the apparatus suspended above her bed. Because her incision is closed, and her heart is swelling, the threads are pulling her chest wall away from her heart to give it more room. If the incision has to be reopened, it will likely happen overnight.
At first, all we see are the tubes, wires and machinery. Soon, though, we could see our daughter, the person underneath it all. I stroked her head and held her hand and told her that she had been very brave and that she needed to continue to be strong. I believe that she will be.
Melissa
Monday, March 5, 2007
The Big Day
Melissa and I were at the hospital just after 7am this morning.
The surgeon met us in the hallway on the Cardiac floor, and we quickly moved into Amelia's room for a chat. He went through the procedure in some detail, as well as the potential risks of the process. He wanted to be clear that we realized that this type of heart procedure has 200 times greater risk than most other more routine operations.
We were told to expect her chest to be open post-op; usually the heart tends to swell well past the capacity of the chest capacity but that, in time, this would subside and the chest would be closed. We were advised that ultimately the duration of Amelia's hospital stay would be dependent on how well she tolerates the physical trauma of the procedure itself. It's impossible to tell how well things would go because each child is different.
Before leaving, the Surgeon instructed us to wait in Amelia's room for a Team member who would soon arrive and escort us to the OR.
By about 9am, Melissa and I were starting to wonder what was going on. While we had been warned that cancellations were all par for the course, we had assumed that we had passed the 'point of no return'.
We were wrong.
The Surgeon poked his head into the room around 9:30 and informed us that something had come up in ICU and that there was no longer a bed for a post-OP Amelia. We were told to come back tomorrow and that we would try the whole process again.
Melissa and I were pretty frustrated. We waited around at the hospital while the Team replaced Amelia's PICC line. We also wanted to make sure that her feeds were resumed as quickly as possible (obviously they had been suspended in the hours leading up to the surgery deadline).
I mentioned to Melissa that the whole experience sort of had a capital punishment feel to it. You sit and watch the time tick by with this strong sense of fear (and for me- dread) only to have the whole thing cancelled at the very last minute. It's a stay in surgical execution I suppose.
Oh well...let's call this Day Zero, Part II and hope for the best on Tuesday.
The surgeon met us in the hallway on the Cardiac floor, and we quickly moved into Amelia's room for a chat. He went through the procedure in some detail, as well as the potential risks of the process. He wanted to be clear that we realized that this type of heart procedure has 200 times greater risk than most other more routine operations.
We were told to expect her chest to be open post-op; usually the heart tends to swell well past the capacity of the chest capacity but that, in time, this would subside and the chest would be closed. We were advised that ultimately the duration of Amelia's hospital stay would be dependent on how well she tolerates the physical trauma of the procedure itself. It's impossible to tell how well things would go because each child is different.
Before leaving, the Surgeon instructed us to wait in Amelia's room for a Team member who would soon arrive and escort us to the OR.
By about 9am, Melissa and I were starting to wonder what was going on. While we had been warned that cancellations were all par for the course, we had assumed that we had passed the 'point of no return'.
We were wrong.
The Surgeon poked his head into the room around 9:30 and informed us that something had come up in ICU and that there was no longer a bed for a post-OP Amelia. We were told to come back tomorrow and that we would try the whole process again.
Melissa and I were pretty frustrated. We waited around at the hospital while the Team replaced Amelia's PICC line. We also wanted to make sure that her feeds were resumed as quickly as possible (obviously they had been suspended in the hours leading up to the surgery deadline).
I mentioned to Melissa that the whole experience sort of had a capital punishment feel to it. You sit and watch the time tick by with this strong sense of fear (and for me- dread) only to have the whole thing cancelled at the very last minute. It's a stay in surgical execution I suppose.
Oh well...let's call this Day Zero, Part II and hope for the best on Tuesday.
Sunday, March 4, 2007
The Day Before the Surgery (Day 0)
Amelia's surgery has been scheduled for tomorrow -- Monday, March 5th. At one point, we thought we might have to go the U.S. for the surgery since Sick Kids had too many nurses off sick to do any surgeries at all, but, fortunately, this crisis has been averted, and she'll be having the surgery at Sick Kids.
Today at Sick Kids, John and I finally met with a surgeon (well, a surgical fellow) to discuss the surgery that Amelia will have. He explained the procedure, which John outlined in a previous posting. He also went through the risk factors -- stroke, bleeding and infection. The mortality rate is 20%, which shocked me, but he also told us that that is the rate for all truncus surgeries at all hospitals -- the rate at Sick Kids is much lower (more like 5%); plus, her truncus is not the worst kind.
Her surgery is scheduled to be the first of the day. She will be taken to the OR at 8:00 am, surgery will start at around 10:00, and will last 3-4 hours. So, unless it's cancelled, by this time tomorrow her heart will be fixed. I'm feeling quite optimistic. Her surgeon is excellent, apparently, and he's the head of the department. I told the surgical fellow that I saw him on T.V. (on Little Miracles, a show filmed at Sick Kids about its patients), and he laughed. Apparently, he's quite a perfectionist, which, to me, sounds like a great quality in a surgeon.
Anyway, I feel ready for all of this. Yes, it's a complex, fairly risky surgery, but she has to have it. The fellow (I don't remember his name) said that Amelia will be in the ICU for about three days if she comes out of surgery with her incision closed, and about six days if her incision is kept open to deal with the swelling. He thought she might be home in two weeks, but I'm skeptical. She still needs to learn to eat for herself because I'm not planning on taking her home with an NG tube!
Amelia looked good this afternoon and evening, but she keeps losing her IV lines. She has a huge bruise on her left arm from her last blood transfusion and smaller bruises on her right arm and left ankle from her IVs "going interstitial" (IV fluid pooling under the skin). They redid the IV on her left foot and it has to last until the morning. She's just too wiggly for IVs, I guess. We have to be back at the hospital by 7:00 am to meet with an anaesthesiologist and to take her to the operating area by 8:00. It's going to be a long day.
Wish us luck. We'll let you know how it all went.
M&J
Today at Sick Kids, John and I finally met with a surgeon (well, a surgical fellow) to discuss the surgery that Amelia will have. He explained the procedure, which John outlined in a previous posting. He also went through the risk factors -- stroke, bleeding and infection. The mortality rate is 20%, which shocked me, but he also told us that that is the rate for all truncus surgeries at all hospitals -- the rate at Sick Kids is much lower (more like 5%); plus, her truncus is not the worst kind.
Her surgery is scheduled to be the first of the day. She will be taken to the OR at 8:00 am, surgery will start at around 10:00, and will last 3-4 hours. So, unless it's cancelled, by this time tomorrow her heart will be fixed. I'm feeling quite optimistic. Her surgeon is excellent, apparently, and he's the head of the department. I told the surgical fellow that I saw him on T.V. (on Little Miracles, a show filmed at Sick Kids about its patients), and he laughed. Apparently, he's quite a perfectionist, which, to me, sounds like a great quality in a surgeon.
Anyway, I feel ready for all of this. Yes, it's a complex, fairly risky surgery, but she has to have it. The fellow (I don't remember his name) said that Amelia will be in the ICU for about three days if she comes out of surgery with her incision closed, and about six days if her incision is kept open to deal with the swelling. He thought she might be home in two weeks, but I'm skeptical. She still needs to learn to eat for herself because I'm not planning on taking her home with an NG tube!
Amelia looked good this afternoon and evening, but she keeps losing her IV lines. She has a huge bruise on her left arm from her last blood transfusion and smaller bruises on her right arm and left ankle from her IVs "going interstitial" (IV fluid pooling under the skin). They redid the IV on her left foot and it has to last until the morning. She's just too wiggly for IVs, I guess. We have to be back at the hospital by 7:00 am to meet with an anaesthesiologist and to take her to the operating area by 8:00. It's going to be a long day.
Wish us luck. We'll let you know how it all went.
M&J
Amelia's Blog
Hello All,
Melissa and I have created this blog to keep everyone up to speed on Amelia's Truncal repair and recovery.
On a daily basis, we will attempt to offer status update and pictures. We hope that this forum will allow us to keep all of our friends and family as informed as possible.
Melissa and I have created this blog to keep everyone up to speed on Amelia's Truncal repair and recovery.
On a daily basis, we will attempt to offer status update and pictures. We hope that this forum will allow us to keep all of our friends and family as informed as possible.
The Operation Required- The Rastelli Repair
For those of you who dont know what Amelia's surgery will involve....
Truncus arteriosus is characterized by a large ventricular septal defect over which a large, single great vessel (truncus) arises. This single great vessel carries blood both to the body and to the lungs.
Surgery is required to close the ventricular septal defect and separate blood flow to the body from blood flow to the lungs. This is generally done early in infancy to prevent high blood pressure from damaging the lungs' arteries. A patch is used to close the ventricular defect. The pulmonary arteries are then disconnected from the single great vessel and a tube (a conduit or tunnel) is placed from the right ventricle to these pulmonary arteries. This is sometimes called a Rastelli or “Full” Repair. Outside of major replacements, this represents the only open surgery that the baby should need to go through.
We have been told to expect the baby to be in the hospital for about one month following this surgery.
Longer Term Difficulties
In the long-term period after the operation, the heart muscle's ability to contract may decrease. You may need medication including diuretics, agents to help the heart pump better and drugs to control your blood pressure.
Patients with repaired truncus arteriosus have a higher risk for arrhythmias can originate from the atria (the heart's two upper chambers) or the ventricles (the two lower chambers).
Sometimes they may cause dizziness or fainting. Medication may be required to control them. In rare cases, a procedure in the cardiac catheterization laboratory or the operating room may be required to eliminate these arrhythmias and control symptoms.
Sometimes, even when the defect is repaired early, the pulmonary hypertension becomes progressively worse. You may experience shortness of breath, decreased exercise endurance and sometimes headaches and dizziness.
Women with repaired truncus arteriosus may handle pregnancy well. However, some may not.
Additional Surgeries
Conduit Replacement The conduit connecting the right ventricle to the pulmonary artery conduit may become narrowed or stenotic over time. Thus, it may have to be replaced from time to time. Timing of the replacement varies. The peripheral pulmonary arteries also may become narrowed and require treatment. Sometimes conduits and peripheral pulmonary artery narrowings may be dilated using a balloon-tipped catheter or an expandable stent in the cardiac catheterization laboratory. This procedure may help extend the time between conduit changes. Sometimes surgery is required to enlarge the narrowed area. The cardiologist will need to decide , over time, whether a balloon/stent procedure or surgery is best.
Aortic Valve Replacement
The aortic valve is actually the large truncal valve from the single vessel, which arose over the ventricular septal defect before surgical repair. This valve sometimes becomes leaky over time and may need to be replaced.
Truncus arteriosus is characterized by a large ventricular septal defect over which a large, single great vessel (truncus) arises. This single great vessel carries blood both to the body and to the lungs.
Surgery is required to close the ventricular septal defect and separate blood flow to the body from blood flow to the lungs. This is generally done early in infancy to prevent high blood pressure from damaging the lungs' arteries. A patch is used to close the ventricular defect. The pulmonary arteries are then disconnected from the single great vessel and a tube (a conduit or tunnel) is placed from the right ventricle to these pulmonary arteries. This is sometimes called a Rastelli or “Full” Repair. Outside of major replacements, this represents the only open surgery that the baby should need to go through.
We have been told to expect the baby to be in the hospital for about one month following this surgery.
Longer Term Difficulties
In the long-term period after the operation, the heart muscle's ability to contract may decrease. You may need medication including diuretics, agents to help the heart pump better and drugs to control your blood pressure.
Patients with repaired truncus arteriosus have a higher risk for arrhythmias can originate from the atria (the heart's two upper chambers) or the ventricles (the two lower chambers).
Sometimes they may cause dizziness or fainting. Medication may be required to control them. In rare cases, a procedure in the cardiac catheterization laboratory or the operating room may be required to eliminate these arrhythmias and control symptoms.
Sometimes, even when the defect is repaired early, the pulmonary hypertension becomes progressively worse. You may experience shortness of breath, decreased exercise endurance and sometimes headaches and dizziness.
Women with repaired truncus arteriosus may handle pregnancy well. However, some may not.
Additional Surgeries
Conduit Replacement The conduit connecting the right ventricle to the pulmonary artery conduit may become narrowed or stenotic over time. Thus, it may have to be replaced from time to time. Timing of the replacement varies. The peripheral pulmonary arteries also may become narrowed and require treatment. Sometimes conduits and peripheral pulmonary artery narrowings may be dilated using a balloon-tipped catheter or an expandable stent in the cardiac catheterization laboratory. This procedure may help extend the time between conduit changes. Sometimes surgery is required to enlarge the narrowed area. The cardiologist will need to decide , over time, whether a balloon/stent procedure or surgery is best.
Aortic Valve Replacement
The aortic valve is actually the large truncal valve from the single vessel, which arose over the ventricular septal defect before surgical repair. This valve sometimes becomes leaky over time and may need to be replaced.
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