It was a long day of waiting and very little information. In the end here is a synopsis...
Hope and I will be heading to Edmonton on Sunday, if a bed is available, or on Monday. Once there, Hope will have a complete workup to see if she is a candidate for transplant. It will involve a lot of doctors, meetings and tests. At this point they've said it will take around 3 days, so it will likely take 5.
If it is decided that Hope is not currently a candidate, it could cause us to be in Edmonton longer. At that point, they may revisit a liver surgery that was previously rejected. It looks like we won't have an answer until the end of next week.
Many of you know that we take possession of our new house two weeks from today. When we made this decision to list our home, Hope was stable and about to return home. Things have changed quickly and we find ourselves moving in the midst of complete stress and chaos.
Please pray for us as we work hard to pack up as much as we can this weekend. I am a little on the anal side and not having control during our move will be extremely difficult for me. We are hopeful that next week's testing will show Hope is able to get a new heart, and we'll be back to Calgary before next weekend. That would allow me to be here during the move.
The unknowns are very stressful and draining. This is going to be a long week and I am not thrilled about needing to split up as a family again. I'll be headed to Edmonton alone and Shawn and Sadie will play it by ear as we get more information and they will decide what to do.
Today Hope was much more stable. The new medications have made a noticeable difference. Hope was off oxygen and had stopped grunting for the first time in over two weeks! Her heart was clearly working too hard and is so much happier with the extra boost from these drugs. I'll continue to pray that God blesses her with a brand new heart that works the way it should.
Wednesday, 17 April 2013
Tuesday, 16 April 2013
Fatty Fruit
The Cardiac Conference took place this afternoon and went as we expected it would. Dr. Ross and the rest of the team in Edmonton agreed with the team in Calgary. They all feel that a transplant is Hope's best option and if she is able to receive one, would do very well with a new heart. Tomorrow morning is the Transplant Conference with Edmonton and Calgary. This is not something that parents are able to attend. It begins at 7:30am our time and will run for 1-2 hours. After it is over, our cardiologist will be coming down to PICU to share the results with me. Please pray for this meeting and that they would all agree that Hope needs a new heart!
We were warned today that we may need to go back up to Edmonton for some further liver testing before Hope is able to be listed. That would happen very soon and adds a lot of stress as we take possession of our new home in 2 weeks. Obviously that is so minor in comparison to what is happening with Hope, but I have tried to speed up my packing process and pray I don't leave a lot of work for someone else to finish when we go to Edmonton. Obviously things change all the time and there is still a small chance that the testing could be done here in Calgary.
Hope has done fairly well with the transition to the new heart medication. She did not really sleep at all today though, hopefully this wears off and she can get proper sleep again. She went from never being awake to never sleeping, we need something in the middle! Tomorrow she will begin taking the viagra and we hope it gives her some ease with her breathing. The new medication is not compatible with a lot of the meds Hope is on and they had to change so many things. One of the most major changes was to her diuretics. If she becomes fluid overloaded, we'll be forced to take her off this new medication and go back to Epinephrine.
Hope was given the wrong dose of medication yesterday as she actually received another patients medication! Obviously the doctors were not very happy and the hospital is involved to make sure this never happens again. There have been a few errors lately that are concerning. We know that we are working with humans and that everyone makes mistakes and we do not hold it against someone personally, we just pray that God protects Hope from anything truly dangerous to her health.
We are stressed this week as we await answers, change and unknowns. I find the days at the hospital long as I feel like I'm waiting the entire time. Today Hope was not very happy in my arms so I spent most of the day staring at her and trying to keep myself busy. I assumed and have now confirmed that through this stressful time I have gained some weight and am never happy about that. I know that it does not truly matter and is something so minor, but it is really frustrating to feel uncomfortable in your clothes. I was already struggling to get back into my pre-pregnancy clothes and have found that difficult or impossible. To find out I have put on some of the weight I worked hard to remove is kind of depressing. At the same time, I do not have the energy to exercise or the mental health to choose a salad over a comforting grilled cheese. I am praying that God changes the way things work and that carbs and sugar become good for you and fruits and veggies start making people fat! It may be a dream but I hope for a lot of things that the world says are not possible!
We were warned today that we may need to go back up to Edmonton for some further liver testing before Hope is able to be listed. That would happen very soon and adds a lot of stress as we take possession of our new home in 2 weeks. Obviously that is so minor in comparison to what is happening with Hope, but I have tried to speed up my packing process and pray I don't leave a lot of work for someone else to finish when we go to Edmonton. Obviously things change all the time and there is still a small chance that the testing could be done here in Calgary.
Hope has done fairly well with the transition to the new heart medication. She did not really sleep at all today though, hopefully this wears off and she can get proper sleep again. She went from never being awake to never sleeping, we need something in the middle! Tomorrow she will begin taking the viagra and we hope it gives her some ease with her breathing. The new medication is not compatible with a lot of the meds Hope is on and they had to change so many things. One of the most major changes was to her diuretics. If she becomes fluid overloaded, we'll be forced to take her off this new medication and go back to Epinephrine.
Hope was given the wrong dose of medication yesterday as she actually received another patients medication! Obviously the doctors were not very happy and the hospital is involved to make sure this never happens again. There have been a few errors lately that are concerning. We know that we are working with humans and that everyone makes mistakes and we do not hold it against someone personally, we just pray that God protects Hope from anything truly dangerous to her health.
We are stressed this week as we await answers, change and unknowns. I find the days at the hospital long as I feel like I'm waiting the entire time. Today Hope was not very happy in my arms so I spent most of the day staring at her and trying to keep myself busy. I assumed and have now confirmed that through this stressful time I have gained some weight and am never happy about that. I know that it does not truly matter and is something so minor, but it is really frustrating to feel uncomfortable in your clothes. I was already struggling to get back into my pre-pregnancy clothes and have found that difficult or impossible. To find out I have put on some of the weight I worked hard to remove is kind of depressing. At the same time, I do not have the energy to exercise or the mental health to choose a salad over a comforting grilled cheese. I am praying that God changes the way things work and that carbs and sugar become good for you and fruits and veggies start making people fat! It may be a dream but I hope for a lot of things that the world says are not possible!
Monday, 15 April 2013
Viagra for Hope?
Today we were all reminded of how sinful and sad our world truly is. I mourn for everyone that was killed or injured in Boston and their families. What a horrible tragedy. Moments like these remind me to be thankful for everyone in my life and to live each day to the fullest.
Today I had a meeting with the doctors once again. The specialists all came together to discuss what should be done with Hope. When they met on Thursday last week, they met under the assumption that Hope would be taking Milrinone (a heart assistance drug) for a week. She came close to dying after that meeting and it was clear that she was not tolerating Milrinone at all. The medication was stopped and Epinephrine (also used for her heart) was started. She has been on it since then and unable to come off of it. This is not a medication that she can stay on long term and the meeting today was to discuss what should happen next.
They have decided to put Hope on two new medications tomorrow and to stop the Epinephrine. Please pray for this transition as there is a chance we could have the same reaction as we did on Thursday and it could be extremely dangerous for Hope. The first medication is a new heart assistance drug that is similar to Milrinone but not the same. The second medication, surprisingly, is actually Viagra. It is used to open up her pulmonary arteries and assist in her breathing. Hope continues to struggle to breathe and is exhausted at all times. I am hopeful that these medications will make a positive impact. We have at least another 7 days minimum in Intensive Care.
This afternoon I stood by as Hope screamed having her blood drawn. She is completely over being poked and only truly awake when something she doesn't like is being done. I would say that Hope currently sleeps through 21 of 24 hours a day. They are looking for reasons to explain this complete exhaustion, but it could simply be her heart failing and the energy it takes to breathe. It is extremely difficult to witness and I feel myself falling apart slowly and clinging to the truth that God loves her more than I do and is crying over her as well.
Tomorrow Hope will be presented (via teleconference) at the Cardiac conference in the afternoon. As long as Edmonton sticks to their original opinions, that there is nothing more to be done for Hope, we will move forward with transplantation. There is a slight chance that they will choose to try one more open heart surgery. This frightens me as it would be extremely dangerous and potentially life threatening for Hope. I think I'm more fearful that they'll recommend surgery than listing for transplant.
If they decide not to operate, Hope will be presented at Transplant conference on Wednesday morning. As long as there are no surprises, we hope that she will be listed by the end of this week. Would you join us in praying? It feels terrible to pray that someone else would lose a child, so please do not do that. Please pray that WHEN someone loses a child, and sadly it happens in this sinful world, that the parents would have the strength and love to choose organ donation. Please also pray that soon a child that has sadly gone, would have a heart that is a perfect match for Hope.
It was explained to me that usually a child is able to take a heart from someone 10% below them in weight or double their own weight. For Hope that would mean the donor would need to be between 4.5-12 kg. Sadie is just over 12 kgs which means the donor would likely range in age from 4 months to 2.5 years. I absolutely ache for families that have or will lose a child. I have been very close and that pain has been more than I can often bear. I have a strong burden to be praying for the family who's child will hopefully give new life to Hope with a strong and healthy heart. I would really appreciate others joining me in this.
Thank you to everyone that has reached out and loved on our family this week. This is not the first difficult week we've had with Hope, but it has not been easy after being so close to discharge. The talk of Hope coming home soon has completely gone and we now must gear up for another long and exhausting journey. We believed for a time that we would finally have a chance to rest, but now have to go back into battle, already weary. We know that we are not alone in this and truly thank God for sending so many people to walk with us through this. I simply could not imagine doing this without you all and with out God. To God be the glory for the great things He has done.
Today I had a meeting with the doctors once again. The specialists all came together to discuss what should be done with Hope. When they met on Thursday last week, they met under the assumption that Hope would be taking Milrinone (a heart assistance drug) for a week. She came close to dying after that meeting and it was clear that she was not tolerating Milrinone at all. The medication was stopped and Epinephrine (also used for her heart) was started. She has been on it since then and unable to come off of it. This is not a medication that she can stay on long term and the meeting today was to discuss what should happen next.
They have decided to put Hope on two new medications tomorrow and to stop the Epinephrine. Please pray for this transition as there is a chance we could have the same reaction as we did on Thursday and it could be extremely dangerous for Hope. The first medication is a new heart assistance drug that is similar to Milrinone but not the same. The second medication, surprisingly, is actually Viagra. It is used to open up her pulmonary arteries and assist in her breathing. Hope continues to struggle to breathe and is exhausted at all times. I am hopeful that these medications will make a positive impact. We have at least another 7 days minimum in Intensive Care.
This afternoon I stood by as Hope screamed having her blood drawn. She is completely over being poked and only truly awake when something she doesn't like is being done. I would say that Hope currently sleeps through 21 of 24 hours a day. They are looking for reasons to explain this complete exhaustion, but it could simply be her heart failing and the energy it takes to breathe. It is extremely difficult to witness and I feel myself falling apart slowly and clinging to the truth that God loves her more than I do and is crying over her as well.
Tomorrow Hope will be presented (via teleconference) at the Cardiac conference in the afternoon. As long as Edmonton sticks to their original opinions, that there is nothing more to be done for Hope, we will move forward with transplantation. There is a slight chance that they will choose to try one more open heart surgery. This frightens me as it would be extremely dangerous and potentially life threatening for Hope. I think I'm more fearful that they'll recommend surgery than listing for transplant.
If they decide not to operate, Hope will be presented at Transplant conference on Wednesday morning. As long as there are no surprises, we hope that she will be listed by the end of this week. Would you join us in praying? It feels terrible to pray that someone else would lose a child, so please do not do that. Please pray that WHEN someone loses a child, and sadly it happens in this sinful world, that the parents would have the strength and love to choose organ donation. Please also pray that soon a child that has sadly gone, would have a heart that is a perfect match for Hope.
It was explained to me that usually a child is able to take a heart from someone 10% below them in weight or double their own weight. For Hope that would mean the donor would need to be between 4.5-12 kg. Sadie is just over 12 kgs which means the donor would likely range in age from 4 months to 2.5 years. I absolutely ache for families that have or will lose a child. I have been very close and that pain has been more than I can often bear. I have a strong burden to be praying for the family who's child will hopefully give new life to Hope with a strong and healthy heart. I would really appreciate others joining me in this.
Thank you to everyone that has reached out and loved on our family this week. This is not the first difficult week we've had with Hope, but it has not been easy after being so close to discharge. The talk of Hope coming home soon has completely gone and we now must gear up for another long and exhausting journey. We believed for a time that we would finally have a chance to rest, but now have to go back into battle, already weary. We know that we are not alone in this and truly thank God for sending so many people to walk with us through this. I simply could not imagine doing this without you all and with out God. To God be the glory for the great things He has done.
Saturday, 13 April 2013
The Family Cold
It looks like we all have a cold. At this point, Hope doesn't appear to have it. Sadie has lovingly shared her cold with me and Shawn. I've been on Advil Cold and Sinus and large doses of Vitamin C and feel not too badly and manage to keep my nose from running like a tap. Sadie also appears to be improving but is not 100% healthy yet. Shawn is the strong one, he feels it coming and knows he's in trouble but is fighting it off. Please pray that these germs do not linger in our family.
Shawn spent the day at the hospital with Hope today, with a mask on. He felt that she was looking ok although she was very tired. She slept for 4 hours while he was there and was in his arms for most of the day. They gave Hope a steroid to try and strengthen her stomach. She continues on the heart assistance medication and is not able to be weaned off.
I spent the day packing with a friend and made some progress, although the house still appears to be full of stuff! How we end up with so many things, I will never understand. If it wasn't snowing, I would consider a garage sale! I'm hoping to feel well enough tomorrow to go and spend some time with Hope, with a mask on.
Shawn spent the day at the hospital with Hope today, with a mask on. He felt that she was looking ok although she was very tired. She slept for 4 hours while he was there and was in his arms for most of the day. They gave Hope a steroid to try and strengthen her stomach. She continues on the heart assistance medication and is not able to be weaned off.
I spent the day packing with a friend and made some progress, although the house still appears to be full of stuff! How we end up with so many things, I will never understand. If it wasn't snowing, I would consider a garage sale! I'm hoping to feel well enough tomorrow to go and spend some time with Hope, with a mask on.
Friday, 12 April 2013
No Answers
Hope made it through the night without intubation and did fairly well. She is still relying on the heart assistance meds and they haven't been able to wean them down. This is not even the drug they hope to give her for a full 7 days, she was too sick to continue on that trial yesterday. We may be in PICU for longer than we'd thought. I could still see that Hope was tired and not feeling like herself completely, but she was MUCH better than yesterday. Today many of the doctors admitted that they did not expect her to survive yesterday and were much more stressed than they had let on.
In the afternoon, one of the cardiologists that focuses on transplant patients had a meeting with me. He reviewed all the risks of transplant. Many people look at it is a cure, but it is truly just another procedure in a long journey with a broken heart. She may need a new heart to stay alive, but life is not perfect because her heart is whole. A transplant comes with a lot of highly toxic drugs and the risk of infection, cancer and a weakened immune system. We are willing to do whatever it takes, but realize this is a risky journey no matter what.
Hope had blood work drawn today that will be worked up as they study her for transplant. We're not sure how long it will take for her to get on the list. They need to discuss things further with Edmonton and are not in as much of a rush now that she's more stable. We'll learn a lot more after transplant conference on Wednesday. Today it was mentioned that they may attempt to repair her aorta now that transplant is on the table. Anything is possible so we're trying to stay openminded and just roll with it all. We would really like a clear plan as the roller coaster is exhausting, but that's not an option at the moment.
Hope continues to lose weight and is under 6 kilos once again. We worked so hard to get over 5 kilos and it was tough to hear that she was no longer there. Her legs are tiny sticks and her body needs more fat. Tomorrow they will attempt to add oil to her feeds. Hopefully this works and she is able to tolerate it.
Thank you for your continued prayers.
In the afternoon, one of the cardiologists that focuses on transplant patients had a meeting with me. He reviewed all the risks of transplant. Many people look at it is a cure, but it is truly just another procedure in a long journey with a broken heart. She may need a new heart to stay alive, but life is not perfect because her heart is whole. A transplant comes with a lot of highly toxic drugs and the risk of infection, cancer and a weakened immune system. We are willing to do whatever it takes, but realize this is a risky journey no matter what.
Hope had blood work drawn today that will be worked up as they study her for transplant. We're not sure how long it will take for her to get on the list. They need to discuss things further with Edmonton and are not in as much of a rush now that she's more stable. We'll learn a lot more after transplant conference on Wednesday. Today it was mentioned that they may attempt to repair her aorta now that transplant is on the table. Anything is possible so we're trying to stay openminded and just roll with it all. We would really like a clear plan as the roller coaster is exhausting, but that's not an option at the moment.
Hope continues to lose weight and is under 6 kilos once again. We worked so hard to get over 5 kilos and it was tough to hear that she was no longer there. Her legs are tiny sticks and her body needs more fat. Tomorrow they will attempt to add oil to her feeds. Hopefully this works and she is able to tolerate it.
Thank you for your continued prayers.
Thursday, 11 April 2013
Coasting to Climbing
Is it not possible to have a small problem with Hope? Everything is a major issue and never a minor bump when it comes to that little girl. This morning I did not like the way Hope looked as soon as I saw her. Her eyes were dark, she would not wake up to interact with me and she was not herself. I felt like she was hot and kept asking the nurse to re-take her temperature. Yesterday I had decided that I would still have lunch with two friends as I thought it would be good for me to stay mentally stable and take a break from the PICU.
At 11am the technician came to ultrasound Hope and she was given a sedative, it was the perfect time for me to sneak out while another friend cuddled her. I was going to be back in 2 hours and would have Shawn with me as the doctors informed us this morning that we needed to have a meeting about Hope's next steps. On my way out I spoke to the doctors about my concerns and how Hope's heart rate was too high and her eyes were clearly telling me she was sick.
Shawn and I walked in to a bad scene at 1pm. The number of people standing outside Hope's room was intense. The very sight of such a crowd outside your child's room is never good. The doctors spoke to us outside and we never got in to see Hope. The sedative had pushed Hope over the edge and her heart rate was over 180 bpm and her colour was worse and she was almost unresponsive. Hope's blood pressure was dropping and they feared they were losing her. She was given some fluid to try to perk her up and started on a few new meds. Shawn and I were taken down the hall to meet with the doctors and were asked if we wanted extreme measures taken to save Hope's life. We still felt that Hope was in God's hands and we wanted them to do everything they could, God would take her if that was his plan anyway.
When we got back into Hope's room, she looked terrible. She was working really hard to breath and they had decided it might be best to intubate her and give her a rest. I touched her body and felt again that she was quite hot. Finally, she spiked a true fever and gave the staff a reason to start her on antibiotics. These were started as the room was set up for life support. They had decided that intubating Hope in her condition may push her over the edge and they needed to be ready with ECMO (life support) to keep her alive in order to transfer to Edmonton and hopefully await a new heart. They were literally standing in the room with all the supplies to start the intubation when Hope started to perk up a bit. After much discussion, they decided to hold off on intubating for the moment.
They are now thinking that Hope has developed a blood infection, likely caused by a PICC line infection and that the antibiotics running through the line took effect quickly. Hope is still on heart assistance meds and now heavily relies on them. She is still in a bad place and could easily go the wrong direction. Her bed is set up to allow ECMO to be started quickly if needed and she is under very close watch.
The other news of today was from GI. After carefully reviewing everything they have on Hope, they do not feel that Hope's liver will disqualify her from transplant. The transplant board will now discuss whether or not Hope is eligible and will decide whether or not a liver biopsy needs to be done to verify. The liver biopsy can be done here in Calgary. We should learn more in the next day or two. In the afternoon they told us that Hope could be listed as early as tomorrow if everything goes through.
I feel very little emotion at the moment. On Monday I was taking Hope out in the car with me, today we had to tell the doctors that we wanted to save her life at all costs. Things change quickly and it takes my heart time to catch up with this present reality. Normal parts of life carry on no matter what happens in the hospital and I find that very confusing. Tonight we kept an appointment we had at a furniture store to finalize our fabric choice for a new couch. It seems so silly to think about, but at times the normal things are what keep me going. I'm fairly sure I haven't even begun to process Hope needing a heart transplant or the fact that her body has begun to shut down so quickly. We have no idea how long a transplant could take. Hope is too big to take a heart from a small baby, but too small to take a heart from a child. She has a small population that would match her size and death is more rare at that age. I still hate the very idea that another family's pain could be my joy.
I'm tired, yet struggle to sleep. I'm able to smile, yet numb inside. I feel hungry, but often feel ill after eating. I want to be alone, yet crave the company of others. I am lost in a confusing world of pain, fear and sadness. Please do not cease praying for our family. The journey we thought was going to coast for a time, has now begun to climb up hill once again.
At 11am the technician came to ultrasound Hope and she was given a sedative, it was the perfect time for me to sneak out while another friend cuddled her. I was going to be back in 2 hours and would have Shawn with me as the doctors informed us this morning that we needed to have a meeting about Hope's next steps. On my way out I spoke to the doctors about my concerns and how Hope's heart rate was too high and her eyes were clearly telling me she was sick.
Shawn and I walked in to a bad scene at 1pm. The number of people standing outside Hope's room was intense. The very sight of such a crowd outside your child's room is never good. The doctors spoke to us outside and we never got in to see Hope. The sedative had pushed Hope over the edge and her heart rate was over 180 bpm and her colour was worse and she was almost unresponsive. Hope's blood pressure was dropping and they feared they were losing her. She was given some fluid to try to perk her up and started on a few new meds. Shawn and I were taken down the hall to meet with the doctors and were asked if we wanted extreme measures taken to save Hope's life. We still felt that Hope was in God's hands and we wanted them to do everything they could, God would take her if that was his plan anyway.
When we got back into Hope's room, she looked terrible. She was working really hard to breath and they had decided it might be best to intubate her and give her a rest. I touched her body and felt again that she was quite hot. Finally, she spiked a true fever and gave the staff a reason to start her on antibiotics. These were started as the room was set up for life support. They had decided that intubating Hope in her condition may push her over the edge and they needed to be ready with ECMO (life support) to keep her alive in order to transfer to Edmonton and hopefully await a new heart. They were literally standing in the room with all the supplies to start the intubation when Hope started to perk up a bit. After much discussion, they decided to hold off on intubating for the moment.
They are now thinking that Hope has developed a blood infection, likely caused by a PICC line infection and that the antibiotics running through the line took effect quickly. Hope is still on heart assistance meds and now heavily relies on them. She is still in a bad place and could easily go the wrong direction. Her bed is set up to allow ECMO to be started quickly if needed and she is under very close watch.
The other news of today was from GI. After carefully reviewing everything they have on Hope, they do not feel that Hope's liver will disqualify her from transplant. The transplant board will now discuss whether or not Hope is eligible and will decide whether or not a liver biopsy needs to be done to verify. The liver biopsy can be done here in Calgary. We should learn more in the next day or two. In the afternoon they told us that Hope could be listed as early as tomorrow if everything goes through.
I feel very little emotion at the moment. On Monday I was taking Hope out in the car with me, today we had to tell the doctors that we wanted to save her life at all costs. Things change quickly and it takes my heart time to catch up with this present reality. Normal parts of life carry on no matter what happens in the hospital and I find that very confusing. Tonight we kept an appointment we had at a furniture store to finalize our fabric choice for a new couch. It seems so silly to think about, but at times the normal things are what keep me going. I'm fairly sure I haven't even begun to process Hope needing a heart transplant or the fact that her body has begun to shut down so quickly. We have no idea how long a transplant could take. Hope is too big to take a heart from a small baby, but too small to take a heart from a child. She has a small population that would match her size and death is more rare at that age. I still hate the very idea that another family's pain could be my joy.
I'm tired, yet struggle to sleep. I'm able to smile, yet numb inside. I feel hungry, but often feel ill after eating. I want to be alone, yet crave the company of others. I am lost in a confusing world of pain, fear and sadness. Please do not cease praying for our family. The journey we thought was going to coast for a time, has now begun to climb up hill once again.
Wednesday, 10 April 2013
From Pass to PICU
When I was in labour with Sadie as well as with Hope, I found staring at one object was the most effective way to deal with the pain. If I closed my eyes I wasn't able to control the pain I felt. Focusing on a non-moving object seemed to help. Today I found myself in that place. Laying in the bed next to Hope, unable to close my eyes or the pain would take over, staring at a specific crack on the wall.
After days of passes and talking about going home, life came crashing down today. Hope has been on passes, but has truly plateaued. We are not able to balance her fluids, her electrolytes or her diuretics. It's frustrating and seemingly endless, I simply assumed we'd find a way eventually. Yesterday before leaving on our pass Hope had a routine echo done. Once completed, we went out the door and spent the day outside of the hospital.
This morning Sadie woke up with a cold. That destroyed my plans of taking her into the hospital to pick up Hope for her pass and I was unsure of what I was going to do. I didn't know if I should bring Hope home or not. Eventually Hope would be home and we wouldn't be able to kick Sadie out if she had a cold. I could not decide what to do. As I put on our shoes the phone rang. The hospital was calling to inform me that Hope was not doing too well and would not be able to go on a pass. I was suddenly stuck with a daughter that needed me at the hospital and a daughter with a cold that could not go with me to the hospital. I am so tired of being torn between my girls and I was stressed to the max. After calling Shawn to ask him what I should do, I pulled myself together and started begging all my friends, once again, to help me. I have used every favour a person can ask for in a lifetime of friendship. I have a lot to pay back and I have some amazing friends.
Sadie and I went to the hospital and transferred her carseat in the parking lot. She would spend the morning in one place and the afternoon in another. I went upstairs and found Hope with laboured breathing, but not looking horrible. She was extremely grumpy and would cry anytime she wasn't able to see me. As I sat with her on the bed I could hear the cardiologist speaking to the other doctors. I knew they were discussing Hope and recognized right away that something was wrong and prepared myself for the devastation.
An amazing cardiologist walked in with a whole gang of people. She has had to give us bad news on numerous occasions and I trust her, I was glad she was on. She explained that Hope was stuck. She wasn't getting strong enough to go home, but was often strong enough for passes. She shared that in our current position, Hope would likely never get out of the hospital. She then went on to talk about the echo. Hope's aorta continues to have high pressure and the right side (only existing side) was showing decreased function. A meeting was called among the cardiologists this morning to discuss what to do about Hope. They had decided that Hope's heart was not going to get better, the pressures were causing the fluid in her lungs and surgical repair was not an option and also much too dangerous. The consensus was that a heart transplant was her best option.
Hope's liver has always stopped her from being a transplant candidate. They have questioned whether or not her liver was improving lately. The ascites is now gone and the varices have improved. The ultrasound shows the clot is still there, but does she have portal hypertension? (you may need to google some things, too lazy to explain tonight) If Hope does NOT have portal hypertension, she is a candidate for a transplant. She will need to have further testing, a liver biopsy or liver catheterization, to rule this out and properly look at the liver. We're not yet sure if this can be done in Calgary or if she'll be sent to Sick Kids in Toronto for this procedure.
Hope was sent to the PICU this afternoon and started on Milrinone, a heart assistance drug, to kick her heart into gear. If this week on Milrinone makes a big difference with Hope, we'll know that she needs a new heart. If Hope does not do well on it, the heart may not be the issue. If the hypertension is there, we may need to look at whether Hope could receive a liver and heart transplant at the same time. We are not even sure this is possible, but it is being looked into.
We are functioning, only because we are used to being numb and hit with horrible news without warning. We are in pain though, this is not what we were expecting and it is painful. Three weeks from today we take possession of our new house. We are excited, but it seems so meaningless in light of Hope's condition. Packing has become more of a pain and less enjoyable, but is a nice distraction at least. I am completely over having to call Shawn and dump horrible news on him while he's at work. I can't imagine finishing work after a phone call like that. I would likely be in a bathroom stall in tears for the rest of the day.
We just told Melanie (Sadie's Nanny), that we likely wouldn't need her full time in May and June. That has clearly changed and it's frustrating to know that we will continue with that expense. God has blessed Shawn with a great job that allows me to stay home with our kids. We never expected to hire a Nanny when I was at home. Thankfully Melanie is amazing and Sadie is more stable as a result, some expenses are too valuable to remove from our lives.
Please pray for Hope and for our family. Although we have not yet been listed, I already think of the family that will lose a child in order for Hope to get a new heart. Somewhere a family lives with a child that they may have no idea they will lose. That breaks my heart and yet I am already thankful for the difficult choice they will make to donate that child's organs. My heart is in pieces and once again I am forced to find the strength to carry on. Thank you God for giving me that strength.
After days of passes and talking about going home, life came crashing down today. Hope has been on passes, but has truly plateaued. We are not able to balance her fluids, her electrolytes or her diuretics. It's frustrating and seemingly endless, I simply assumed we'd find a way eventually. Yesterday before leaving on our pass Hope had a routine echo done. Once completed, we went out the door and spent the day outside of the hospital.
This morning Sadie woke up with a cold. That destroyed my plans of taking her into the hospital to pick up Hope for her pass and I was unsure of what I was going to do. I didn't know if I should bring Hope home or not. Eventually Hope would be home and we wouldn't be able to kick Sadie out if she had a cold. I could not decide what to do. As I put on our shoes the phone rang. The hospital was calling to inform me that Hope was not doing too well and would not be able to go on a pass. I was suddenly stuck with a daughter that needed me at the hospital and a daughter with a cold that could not go with me to the hospital. I am so tired of being torn between my girls and I was stressed to the max. After calling Shawn to ask him what I should do, I pulled myself together and started begging all my friends, once again, to help me. I have used every favour a person can ask for in a lifetime of friendship. I have a lot to pay back and I have some amazing friends.
Sadie and I went to the hospital and transferred her carseat in the parking lot. She would spend the morning in one place and the afternoon in another. I went upstairs and found Hope with laboured breathing, but not looking horrible. She was extremely grumpy and would cry anytime she wasn't able to see me. As I sat with her on the bed I could hear the cardiologist speaking to the other doctors. I knew they were discussing Hope and recognized right away that something was wrong and prepared myself for the devastation.
An amazing cardiologist walked in with a whole gang of people. She has had to give us bad news on numerous occasions and I trust her, I was glad she was on. She explained that Hope was stuck. She wasn't getting strong enough to go home, but was often strong enough for passes. She shared that in our current position, Hope would likely never get out of the hospital. She then went on to talk about the echo. Hope's aorta continues to have high pressure and the right side (only existing side) was showing decreased function. A meeting was called among the cardiologists this morning to discuss what to do about Hope. They had decided that Hope's heart was not going to get better, the pressures were causing the fluid in her lungs and surgical repair was not an option and also much too dangerous. The consensus was that a heart transplant was her best option.
Hope's liver has always stopped her from being a transplant candidate. They have questioned whether or not her liver was improving lately. The ascites is now gone and the varices have improved. The ultrasound shows the clot is still there, but does she have portal hypertension? (you may need to google some things, too lazy to explain tonight) If Hope does NOT have portal hypertension, she is a candidate for a transplant. She will need to have further testing, a liver biopsy or liver catheterization, to rule this out and properly look at the liver. We're not yet sure if this can be done in Calgary or if she'll be sent to Sick Kids in Toronto for this procedure.
Hope was sent to the PICU this afternoon and started on Milrinone, a heart assistance drug, to kick her heart into gear. If this week on Milrinone makes a big difference with Hope, we'll know that she needs a new heart. If Hope does not do well on it, the heart may not be the issue. If the hypertension is there, we may need to look at whether Hope could receive a liver and heart transplant at the same time. We are not even sure this is possible, but it is being looked into.
We are functioning, only because we are used to being numb and hit with horrible news without warning. We are in pain though, this is not what we were expecting and it is painful. Three weeks from today we take possession of our new house. We are excited, but it seems so meaningless in light of Hope's condition. Packing has become more of a pain and less enjoyable, but is a nice distraction at least. I am completely over having to call Shawn and dump horrible news on him while he's at work. I can't imagine finishing work after a phone call like that. I would likely be in a bathroom stall in tears for the rest of the day.
We just told Melanie (Sadie's Nanny), that we likely wouldn't need her full time in May and June. That has clearly changed and it's frustrating to know that we will continue with that expense. God has blessed Shawn with a great job that allows me to stay home with our kids. We never expected to hire a Nanny when I was at home. Thankfully Melanie is amazing and Sadie is more stable as a result, some expenses are too valuable to remove from our lives.
Please pray for Hope and for our family. Although we have not yet been listed, I already think of the family that will lose a child in order for Hope to get a new heart. Somewhere a family lives with a child that they may have no idea they will lose. That breaks my heart and yet I am already thankful for the difficult choice they will make to donate that child's organs. My heart is in pieces and once again I am forced to find the strength to carry on. Thank you God for giving me that strength.
Subscribe to:
Posts (Atom)