I am very thankful to say we are back in Calgary! Hope was transferred around lunch time and was back in the Calgary PICU just after 2pm today. I made the long drive back with Sadie and Rachelle and went straight to the hospital to see Hope. We sat with Hope for a couple of hours, but eventually my exhaustion won and we headed home. I continued to pack boxes and try to get things organized around the house, but by 8pm I was on the couch and dead to the world. I'm not sure if I've ever felt so tired, I feel like I'm more exhausted than I was after an extremely long labour with Sadie!
I know that my body is physically tired and lacking sleep, but I'm fairly confident that the true exhaustion is emotional. Last week was extremely overwhelming and very draining. I wish that I was coming back to a relaxing life, sadly that's not possible with Hope...and a move! I'm hopeful that if I run myself ragged for the next few days, it will pay off by having some time to relax in the future? I'm sure it won't work out that way, but I can dream.
Tomorrow morning the transplant team will have their conference and make a final decision regarding Hope. We are anxious to have answers, but do not feel comforted by being listed for a transplant. Although it is what we believe she needs, it's not what we wanted for her. Please pray for Shawn and I as we begin to face that reality that our daughter needs a new heart in order to live. It's something we believed would happen when she was much older, but not when she was only a year old.
May 1st will mark a day of new beginnings for us, a new house and the wait for a healthy new heart. Please Lord, would you give us the strength to continue this journey with Hope? We are weak, but You are strong. We are tired, but You never tire and will always carry us through.
Tuesday, 30 April 2013
Monday, 29 April 2013
April Snow Storms
Last night I could not sleep and was up reading until almost 1am. I finally fell asleep for only 6 hours before Shawn and I were up to be at the hospital on time. I am exhausted today, but was thankful to have Shawn with me and not to be going through this all alone.
During rounds the doctor said that Hope would likely be listed in the next few days for transplant. That was the first time we'd heard that things were progressing in that direction. After rounds we were taken into his office with the head of transplant and a few of the residents. We had the meeting that we were supposed to have last week, the meeting that had not gone well. It's a difficult meeting to sit through, even though we are aware of all the risks, it's not easy to hear them listed.
We were told that Hope is an extremely high risk transplant. The clots she already has in her body raise her risks a lot and her high pressures from her tiny pulmonary arteries will continue to be a problem post transplant. There is no guarantee that having a whole heart will correct her feeding issues or liver dysfunction. Hope is already forming calcium in her kidneys from her long term diuretics treatment. The medications she'll be on post transplant will also damage her kidneys and we can only pray it does not get bad enough to make them shut down. The medications required post transplant have a high risk for causing cancer and other not so nice things. There is always the risk of rejection and infection as well. It is not a cure, as I've said before. It is another step in her treatment, but not a final solution.
Hope will be discussed tomorrow in surgical rounds again. As long as the surgeons maintain their opinion that surgery is not an option at this point, Hope will be put on the list on Wednesday. This is not a final decision. If Hope somehow improves and is able to go home and come off the heart assistance meds, she would be taken off the list in hopes that she could have the Fontan (3rd surgery). Shawn and I agree that if she is able to have her final surgery, we would prefer that over a transplant and the risks associated with it at this point.
After the meeting with transplant, Shawn and I met with the doctor that does all the VAD's (ventricular assistance devices) for the hospital. Edmonton has one of the best programs in the world for VAD's (an artificial heart that pumps for your own heart while waiting for a transplant). He explained that the longer Hope is on the heart assistance drugs, the more it will damage her heart, although currently helping her. If she has to wait a long time for a heart, there is a chance that she'll need a VAD to stay alive as she waits. The VAD would need to be attached while she was still healthy enough to handle the surgery so it could happen before you would think she needs it. Hope's size only allows her to be a candidate for a Berlin Heart. I'm not even sure how to explain it properly, please google it, you'll be amazed at what they can do these days!
The Berlin Heart comes with another set of risks for Hope. Blood clots and stroke are a major risk and Hope clots more than the average baby. We pray we don't end up needing to be on the Berlin Heart. It would require Hope to be in Edmonton and in hospital until the new heart was found. The doctors feel that in Hope's current condition, she may be able to live up to a year waiting for a heart. We were also told that her blood type, A, is more highly matched and it could lower her wait time. The list is currently long and they have seen patients wait from 2 hours to 2 years on the list. We need to spread the word about organ and tissue donation. It is truly the gift that we are waiting for.
After an exhausting and difficult morning, we were told that Calgary was on their way to pick us up and would arrive in 2 hours. Shortly after, we were told that the flight was grounded due to weather and transport today was cancelled. The stress of moving, being stuck in Edmonton and the emotional exhaustion of this trip has been almost too much. They will try to transfer Hope tomorrow morning, please pray that it actually happens!
As long as Hope is relatively stable, we should be able to wait in Calgary until a heart is found for Hope. They've told us to expect a wait of 6-9 months and the potential that Hope might be in hospital and potentially in PICU through that entire time. It's difficult for us to think about still being in hospital at Christmas time this year, but it is easily possible. We appreciate your prayers right now - we sure need them.
During rounds the doctor said that Hope would likely be listed in the next few days for transplant. That was the first time we'd heard that things were progressing in that direction. After rounds we were taken into his office with the head of transplant and a few of the residents. We had the meeting that we were supposed to have last week, the meeting that had not gone well. It's a difficult meeting to sit through, even though we are aware of all the risks, it's not easy to hear them listed.
We were told that Hope is an extremely high risk transplant. The clots she already has in her body raise her risks a lot and her high pressures from her tiny pulmonary arteries will continue to be a problem post transplant. There is no guarantee that having a whole heart will correct her feeding issues or liver dysfunction. Hope is already forming calcium in her kidneys from her long term diuretics treatment. The medications she'll be on post transplant will also damage her kidneys and we can only pray it does not get bad enough to make them shut down. The medications required post transplant have a high risk for causing cancer and other not so nice things. There is always the risk of rejection and infection as well. It is not a cure, as I've said before. It is another step in her treatment, but not a final solution.
Hope will be discussed tomorrow in surgical rounds again. As long as the surgeons maintain their opinion that surgery is not an option at this point, Hope will be put on the list on Wednesday. This is not a final decision. If Hope somehow improves and is able to go home and come off the heart assistance meds, she would be taken off the list in hopes that she could have the Fontan (3rd surgery). Shawn and I agree that if she is able to have her final surgery, we would prefer that over a transplant and the risks associated with it at this point.
After the meeting with transplant, Shawn and I met with the doctor that does all the VAD's (ventricular assistance devices) for the hospital. Edmonton has one of the best programs in the world for VAD's (an artificial heart that pumps for your own heart while waiting for a transplant). He explained that the longer Hope is on the heart assistance drugs, the more it will damage her heart, although currently helping her. If she has to wait a long time for a heart, there is a chance that she'll need a VAD to stay alive as she waits. The VAD would need to be attached while she was still healthy enough to handle the surgery so it could happen before you would think she needs it. Hope's size only allows her to be a candidate for a Berlin Heart. I'm not even sure how to explain it properly, please google it, you'll be amazed at what they can do these days!
The Berlin Heart comes with another set of risks for Hope. Blood clots and stroke are a major risk and Hope clots more than the average baby. We pray we don't end up needing to be on the Berlin Heart. It would require Hope to be in Edmonton and in hospital until the new heart was found. The doctors feel that in Hope's current condition, she may be able to live up to a year waiting for a heart. We were also told that her blood type, A, is more highly matched and it could lower her wait time. The list is currently long and they have seen patients wait from 2 hours to 2 years on the list. We need to spread the word about organ and tissue donation. It is truly the gift that we are waiting for.
After an exhausting and difficult morning, we were told that Calgary was on their way to pick us up and would arrive in 2 hours. Shortly after, we were told that the flight was grounded due to weather and transport today was cancelled. The stress of moving, being stuck in Edmonton and the emotional exhaustion of this trip has been almost too much. They will try to transfer Hope tomorrow morning, please pray that it actually happens!
As long as Hope is relatively stable, we should be able to wait in Calgary until a heart is found for Hope. They've told us to expect a wait of 6-9 months and the potential that Hope might be in hospital and potentially in PICU through that entire time. It's difficult for us to think about still being in hospital at Christmas time this year, but it is easily possible. We appreciate your prayers right now - we sure need them.
Sunday, 28 April 2013
Open Beds
Hope had another good day. Shawn and I have been told we can sit down with the transplant doctors tomorrow sometime between 9 and 11. We'd like to have the meeting we were supposed to have last week that turned out poorly. Hopefully we'll be able to express our thoughts on Hope's current condition and hear their ideas as well. We will likely still have to wait until Wednesday for a final decision about transplant.
Hope's feeds are being concentrated with a pediatric formula. She is receiving 85% breast milk and 15% formula and tolerating it beautifully. It just shows how much of a difference the heart medication makes for her entire body. Hopefully she will begin to gain weight as she's continued to lose weight for the last few days. If she's not able to gain weight they'll stop attempting to feed her completely and move her to 100% TPN (liquid IV nutrients). Please pray that Hope is able to get a little bit chunky on the food that is currently going into her belly.
I don't feel as exhausted as I did before Shawn, Sadie and Rachelle arrived, thankfully. I am still anxious to get home and back to my bed and a routine I'm more familiar with. One of the nurses called Calgary today to remind them we were coming back tomorrow and to ask about the bed availability. Calgary has lots of space and we should be able to return if nothing comes up. I'm truly hoping we can get home tomorrow as a family. I'm not sure I can handle another week without Sadie and Shawn, especially as we move.
Tomorrow will hopefully be a busy day of packing up our things here, cleaning the apartment and driving back to Calgary. Please continue to pray for Hope and our family as we make that long journey once again.
Hope's feeds are being concentrated with a pediatric formula. She is receiving 85% breast milk and 15% formula and tolerating it beautifully. It just shows how much of a difference the heart medication makes for her entire body. Hopefully she will begin to gain weight as she's continued to lose weight for the last few days. If she's not able to gain weight they'll stop attempting to feed her completely and move her to 100% TPN (liquid IV nutrients). Please pray that Hope is able to get a little bit chunky on the food that is currently going into her belly.
I don't feel as exhausted as I did before Shawn, Sadie and Rachelle arrived, thankfully. I am still anxious to get home and back to my bed and a routine I'm more familiar with. One of the nurses called Calgary today to remind them we were coming back tomorrow and to ask about the bed availability. Calgary has lots of space and we should be able to return if nothing comes up. I'm truly hoping we can get home tomorrow as a family. I'm not sure I can handle another week without Sadie and Shawn, especially as we move.
Tomorrow will hopefully be a busy day of packing up our things here, cleaning the apartment and driving back to Calgary. Please continue to pray for Hope and our family as we make that long journey once again.
Saturday, 27 April 2013
Reunited
It always feels amazing to see Sadie and Shawn walking towards the steps of the basement apartment. This time they even had nursey Rachelle with them for a visit! I feel so much better when our family is together. Shawn and I were able to spend the morning at the apartment with Sadie while Rachelle went to reunite with Hope. I needed the extra sleep this morning and loved being able to see Sadie when she woke up.
Yesterday was Make a Wish day at the hospital. They had so many incredible things for the kids and I was sad that Sadie didn't arrive until the evening. I went on her behalf and decorated a cupcake for her, dressed up a dog from Build-a-Bear and got her a little bag of goodies. She was excited to see all her loot when she arrived and it gave us some toys for her while she's here too!
We got up to the hospital as a family before lunch. Sadie was so excited to see Hope again and Hope was eager for Shawn to pick her up. She was whining the entire time Shawn washed his hands and was instantly happy when he picked her up. It was adorable to watch her face light up at the sight of her Daddy. We had lunch at the hospital and were even there for transplant rounds this morning. Dr. Kantor is back on and it was a relief to see him. Our favourite resident was on call this weekend and said that Hope looked better than she'd ever seen her. The heart meds are truly working and we are hopeful that they will continue to make such a positive impact on her.
In the afternoon, Rachelle and I took Sadie out to run some errands while Shawn and Hope had a nap at the hospital. We spent some time there as a family in the afternoon before a volunteer arrived to take over at dinner time. It's hard to believe today is already over and I'm somewhat thankful that the weekend appears to be going quickly. I'm looking forward to getting back to Calgary and tomorrow will hopefully be our last full day here.
Yesterday was Make a Wish day at the hospital. They had so many incredible things for the kids and I was sad that Sadie didn't arrive until the evening. I went on her behalf and decorated a cupcake for her, dressed up a dog from Build-a-Bear and got her a little bag of goodies. She was excited to see all her loot when she arrived and it gave us some toys for her while she's here too!
We got up to the hospital as a family before lunch. Sadie was so excited to see Hope again and Hope was eager for Shawn to pick her up. She was whining the entire time Shawn washed his hands and was instantly happy when he picked her up. It was adorable to watch her face light up at the sight of her Daddy. We had lunch at the hospital and were even there for transplant rounds this morning. Dr. Kantor is back on and it was a relief to see him. Our favourite resident was on call this weekend and said that Hope looked better than she'd ever seen her. The heart meds are truly working and we are hopeful that they will continue to make such a positive impact on her.
In the afternoon, Rachelle and I took Sadie out to run some errands while Shawn and Hope had a nap at the hospital. We spent some time there as a family in the afternoon before a volunteer arrived to take over at dinner time. It's hard to believe today is already over and I'm somewhat thankful that the weekend appears to be going quickly. I'm looking forward to getting back to Calgary and tomorrow will hopefully be our last full day here.
Thursday, 25 April 2013
Biopsy Results
Exhausted does not even begin to describe how I feel today. I slept fairly well last night and thought I was ok in the morning, but could think of nothing other than a nap by lunch time. It was another difficult day. In rounds this morning, the doctors were discussing Hope and what was next. I mentioned that I wanted to start the process of getting home and was told that we would be here for another week at least! I voiced the fact that we were moving and that we were brought up here with the understanding that we needed to get home before long and that it would only take a few days. That did not seem to matter and I was told that Calgary wanted us here until Hope was weaned off her heart medication. I did not believe that was true and decided to call Calgary Cardiology myself.
I had the cardiologist on call paged and shortly after, our primary cardiologist called me back. This was extremely kind of him to do as I believe he's still on vacation. I explained to him what happened yesterday and what I was being told today. He was not very happy to hear about our experience yesterday and informed me that Calgary did not want Hope weaned off her heart medications. He promised to look into everything and get back to me as he didn't see why I could not return today.
A few hours later I got a call back from him. The head of transplant cardiology would like an opportunity to look at Hope himself. He is away and will return on Monday. He will also be making the decision, with the team, about Hope's need for a transplant or not. Our doctor felt that if we stayed in Edmonton until Monday, with the promise that we could come back to Calgary on Monday afternoon, that it would benefit Hope and potentially save us from needing to come back in a few days or weeks.
We have decided to honour their desire to keep Hope here until Monday and compromise on not getting to go home tomorrow, if it means we are guaranteed to go back to Calgary on Monday. Shawn, nursey Rachelle and Sadie will be coming up to Edmonton tomorrow to spend the weekend here with Hope and me. I'm hoping that Shawn will be able to remain up here on Monday to meet with the doctor as well, but that will depend on his work schedule so he's not sure yet. Please pray that everything happens the way it has been planned to. Please also pray that any further testing that needs to be done could be done in Calgary and that we'll be able to have more consistent care for a while. The moving back and forth is difficult on our family, but also confusing for the doctors and nurses involved in Hope's care and causes us a great deal of stress.
Late this afternoon I was able to speak with the liver doctor. He reported that the biopsy results are back and that they look really good. Hope does have some dilating of some vessels in her liver, but they expect to see this in someone with Hope's condition. Her liver shows no signs of anything that would prevent her from getting a heart transplant! It also showed that the liver was much healthier than they thought and she would NOT need a liver transplant as far as they could tell. It appears the liver continues to improve and although no one can explain it, I give the glory to God.
Although there has been some tension after the inappropriate discussion yesterday, the doctor involved has shared with other doctors that he was wrong and feels badly. He knows that he has damaged a relationship he had with our family that involved trust and respect and feels badly about that as well. I do not agree with what happened, but I realize we all make mistakes and I respect the fact that he is humbly admitting his error and feels badly. As a result, I am choosing to move on and to work hard to have a professional relationship with this doctor as he will be a part of Hope's life regardless. It will take time to regain that trust and respect, but anger doesn't look very good on me and I feel it's best to get rid of it. Thank you for praying for reconciliation and for strength as I fight for the care that Hope deserves.
I had the cardiologist on call paged and shortly after, our primary cardiologist called me back. This was extremely kind of him to do as I believe he's still on vacation. I explained to him what happened yesterday and what I was being told today. He was not very happy to hear about our experience yesterday and informed me that Calgary did not want Hope weaned off her heart medications. He promised to look into everything and get back to me as he didn't see why I could not return today.
A few hours later I got a call back from him. The head of transplant cardiology would like an opportunity to look at Hope himself. He is away and will return on Monday. He will also be making the decision, with the team, about Hope's need for a transplant or not. Our doctor felt that if we stayed in Edmonton until Monday, with the promise that we could come back to Calgary on Monday afternoon, that it would benefit Hope and potentially save us from needing to come back in a few days or weeks.
We have decided to honour their desire to keep Hope here until Monday and compromise on not getting to go home tomorrow, if it means we are guaranteed to go back to Calgary on Monday. Shawn, nursey Rachelle and Sadie will be coming up to Edmonton tomorrow to spend the weekend here with Hope and me. I'm hoping that Shawn will be able to remain up here on Monday to meet with the doctor as well, but that will depend on his work schedule so he's not sure yet. Please pray that everything happens the way it has been planned to. Please also pray that any further testing that needs to be done could be done in Calgary and that we'll be able to have more consistent care for a while. The moving back and forth is difficult on our family, but also confusing for the doctors and nurses involved in Hope's care and causes us a great deal of stress.
Late this afternoon I was able to speak with the liver doctor. He reported that the biopsy results are back and that they look really good. Hope does have some dilating of some vessels in her liver, but they expect to see this in someone with Hope's condition. Her liver shows no signs of anything that would prevent her from getting a heart transplant! It also showed that the liver was much healthier than they thought and she would NOT need a liver transplant as far as they could tell. It appears the liver continues to improve and although no one can explain it, I give the glory to God.
Although there has been some tension after the inappropriate discussion yesterday, the doctor involved has shared with other doctors that he was wrong and feels badly. He knows that he has damaged a relationship he had with our family that involved trust and respect and feels badly about that as well. I do not agree with what happened, but I realize we all make mistakes and I respect the fact that he is humbly admitting his error and feels badly. As a result, I am choosing to move on and to work hard to have a professional relationship with this doctor as he will be a part of Hope's life regardless. It will take time to regain that trust and respect, but anger doesn't look very good on me and I feel it's best to get rid of it. Thank you for praying for reconciliation and for strength as I fight for the care that Hope deserves.
Wednesday, 24 April 2013
Blessings and Burdens
I want to update on the positive side of things first. I don't want an awesome blessing to be lost by the garbage that happened today. Hope was taken down to the OR at 4 pm and had her liver biopsy and varices treatment. She did very well, and came back without oxygen and was stable. Hope was able to come back to the ICE unit and did not have to go to PICU. That was a blessing. Hope's liver biopsy was successful, and we should receive some results in the next few days. She had to stay on bed rest for 4 hours after the procedure and I wasn't able to hold her. Being so late in the day, the doctor called up to give me a report as he headed home to his family after finishing with Hope. Once again, the varices were so small that he did not need to treat them! Praise the Lord that these varices have been so much better than anyone ever expected them to be.
I talked to another specialist this morning and had a couple more stop by, when I was in the meeting with the transplant team. That meeting was the worst meeting I've ever had with a doctor. I've had some pretty awful meetings where we are given horrible news, but I have never felt so angry. I will say that much of the transplant team is away and this should not represent who they are, as it was just one person being rude and disrespectful. The cardiologist that attended the meeting is one that Shawn and I grew to respect and value over our time in Edmonton. I believe that trust is earned and once it is broken, it is extremely hard to repair. Today I lost a lot of respect and trust for this man.
The doctor came in and asked me how I felt about everything. I shared Shawn and my concerns that everyone would continue to wonder what to do for Hope for the next few months and that no one would make a decision and we would be stuck in limbo land forever. He began talking about why transplant might not be good for Hope, and why we needed to consider how Hope felt about having to go through all these surgeries and the fact that she might not want to try anymore. He basically shared that parents fight for children, but maybe that child no longer wants to fight. He said that we could move on if we lost Hope and a lot of other rude and inappropriate things. It was not until the end of the meeting that he informed me that these were all his opinions and in no way reflected the thoughts or decisions of the transplant team as a whole. It would have been helpful for him to lead with that. I sat through a meeting that was absolutely taking away all hope of a future for Hope, and fought for her life, her value and her right to receive care. I did so with the belief that this doctor spoke on behalf of his team. If he wanted to share his personal opinions, which I could care less about, he could have done that with me privately in a more appropriate setting. Using a professional medical meeting as a soap box to share your personal opinions, that do not reflect my own, was inappropriate and uncalled for. It was also completely unfair to me as I was not expecting it and was alone.
The synopsis of the meeting is that we don't have any more information than we did before we arrived. The team is away at a conference and a decision will not be made until next week. Most of our testing and assessments have been completed and tomorrow I will begin pushing for a transfer back to Calgary. I would especially like to get back after what happened today. I'm frustrated with the constant changing of Hope's care and would like to have ONE hospital that cares for her so I'm not told two different things all the time.
Tonight after leaving the hospital, I tried to run around and get some things done while I was alone and did not have the opportunity to spend time with Shawn and Sadie anyway. After 30 minutes I had a terrible migraine, felt exhausted, overwhelmed and burnt out. I'm now back at the apartment and planning to head to bed early. I want to go home. I want my family around me again and I don't want them to change everything about Hope's care, just to send us back and have it all changed once again. Please pray that I can return to Calgary tomorrow or on Friday at the latest. I'm absolutely done.
I talked to another specialist this morning and had a couple more stop by, when I was in the meeting with the transplant team. That meeting was the worst meeting I've ever had with a doctor. I've had some pretty awful meetings where we are given horrible news, but I have never felt so angry. I will say that much of the transplant team is away and this should not represent who they are, as it was just one person being rude and disrespectful. The cardiologist that attended the meeting is one that Shawn and I grew to respect and value over our time in Edmonton. I believe that trust is earned and once it is broken, it is extremely hard to repair. Today I lost a lot of respect and trust for this man.
The doctor came in and asked me how I felt about everything. I shared Shawn and my concerns that everyone would continue to wonder what to do for Hope for the next few months and that no one would make a decision and we would be stuck in limbo land forever. He began talking about why transplant might not be good for Hope, and why we needed to consider how Hope felt about having to go through all these surgeries and the fact that she might not want to try anymore. He basically shared that parents fight for children, but maybe that child no longer wants to fight. He said that we could move on if we lost Hope and a lot of other rude and inappropriate things. It was not until the end of the meeting that he informed me that these were all his opinions and in no way reflected the thoughts or decisions of the transplant team as a whole. It would have been helpful for him to lead with that. I sat through a meeting that was absolutely taking away all hope of a future for Hope, and fought for her life, her value and her right to receive care. I did so with the belief that this doctor spoke on behalf of his team. If he wanted to share his personal opinions, which I could care less about, he could have done that with me privately in a more appropriate setting. Using a professional medical meeting as a soap box to share your personal opinions, that do not reflect my own, was inappropriate and uncalled for. It was also completely unfair to me as I was not expecting it and was alone.
The synopsis of the meeting is that we don't have any more information than we did before we arrived. The team is away at a conference and a decision will not be made until next week. Most of our testing and assessments have been completed and tomorrow I will begin pushing for a transfer back to Calgary. I would especially like to get back after what happened today. I'm frustrated with the constant changing of Hope's care and would like to have ONE hospital that cares for her so I'm not told two different things all the time.
Tonight after leaving the hospital, I tried to run around and get some things done while I was alone and did not have the opportunity to spend time with Shawn and Sadie anyway. After 30 minutes I had a terrible migraine, felt exhausted, overwhelmed and burnt out. I'm now back at the apartment and planning to head to bed early. I want to go home. I want my family around me again and I don't want them to change everything about Hope's care, just to send us back and have it all changed once again. Please pray that I can return to Calgary tomorrow or on Friday at the latest. I'm absolutely done.
Tuesday, 23 April 2013
Doctor Jam
Hope's bed was like a traffic jam of doctors today! I walked in as the team was rounding on Hope and did not have a minute to wake up. So many changes happen after a transfer and it's almost impossible to keep up. Hope's TPN (liquid nutrients) were stopped this morning and they're going up on her feeds and attempting to concentrate them once again. Something Calgary decided recently was not a good idea and had started the TPN as a result. We'll see what happens. As soon as the rounds were finished, the stream of doctors began. Today I met with; Pulmonary, GI, Genetics, Infectious Disease, Neurology, the transplant social worker and the transplant coordinator. On top of that, Hope had a long echo, ECG and other small tests done.
Hope is now on the on-call list for the OR tomorrow. If the scheduling works out, she will be taken for a liver biopsy and her Varices treatment. Please pray that she tolerates the anesthetic well, is extubated easily and able to come back up to ICE and does not need to go to PICU. I'm never very excited about sending Hope to the OR without Shawn here, but I'm thankful I will not be alone. Tomorrow afternoon I'll be sitting down with some of the transplant team to get more details about everything going on as well.
This is national awareness week for organ donation and transplantation. This is good and bad. It's bad because many of the transplant doctors are away at a conference and we will not get a 100% answer about whether or not Hope is being listed until next Wednesday. It is good because the number of pediatric hearts donated each year has gone down and awareness needs to improve. We need people to think about it and to be aware of the gift that organ donation is to the families that are waiting for organs. Perhaps this very week a family will be touched and consider organ donation, a family that may gift a heart to Hope.
At this point, it looks like once everything is finished with Hope's work up, we'll be sent back to Calgary until we hear what's next. Shawn was thankfully able to change our theatre tickets, but there was only one other date available, May 14. That means I have to be home by then! We'd still like to get back to Calgary as soon as possible, but I won't feel as stressed about it being late Thursday night or Friday now.
I'm exhausted and somewhat happy to be sitting alone in the basement apartment for the night. I miss Sadie and Shawn, but don't have a lot to give after today and appreciate the alone time to unwind and rejuvenate for tomorrow. I'm praying Hope will be called to the OR in the morning so we're not waiting on our toes all day. You never know with these things though. Thank you for continuing on the journey with us.
Hope is now on the on-call list for the OR tomorrow. If the scheduling works out, she will be taken for a liver biopsy and her Varices treatment. Please pray that she tolerates the anesthetic well, is extubated easily and able to come back up to ICE and does not need to go to PICU. I'm never very excited about sending Hope to the OR without Shawn here, but I'm thankful I will not be alone. Tomorrow afternoon I'll be sitting down with some of the transplant team to get more details about everything going on as well.
This is national awareness week for organ donation and transplantation. This is good and bad. It's bad because many of the transplant doctors are away at a conference and we will not get a 100% answer about whether or not Hope is being listed until next Wednesday. It is good because the number of pediatric hearts donated each year has gone down and awareness needs to improve. We need people to think about it and to be aware of the gift that organ donation is to the families that are waiting for organs. Perhaps this very week a family will be touched and consider organ donation, a family that may gift a heart to Hope.
At this point, it looks like once everything is finished with Hope's work up, we'll be sent back to Calgary until we hear what's next. Shawn was thankfully able to change our theatre tickets, but there was only one other date available, May 14. That means I have to be home by then! We'd still like to get back to Calgary as soon as possible, but I won't feel as stressed about it being late Thursday night or Friday now.
I'm exhausted and somewhat happy to be sitting alone in the basement apartment for the night. I miss Sadie and Shawn, but don't have a lot to give after today and appreciate the alone time to unwind and rejuvenate for tomorrow. I'm praying Hope will be called to the OR in the morning so we're not waiting on our toes all day. You never know with these things though. Thank you for continuing on the journey with us.
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