Sleep is important and babies need a lot of it, but when we sleep for 48 hours and are difficult to wake up, there's something wrong. Hope continues to sleep all the time. She is slightly more alert today when she is forced to wake up by the doctor or nurse moving her a way she doesn't like. I held her for a brief period of time, but once again she cried out in pain and I had to transfer her back to bed. I'm fairly sure it's the fact that both sides of her body have uncomfortable things coming out of them and she can't get comfortable while held. On her right side she has the PICC line that is almost in her elbow pit and her arm is taped to a board. On the left side she has an IV in her scalp and a chest tube between her ribs. She has every right to be uncomfortable right now.
The doctors are certainly worried about her, but are at a loss for what to do. Last night one of the cardiology residents slept at the hospital in order to be close by in case something with Hope's condition changed. This resident has been a complete gift through our entire time in Edmonton. She was briefly down in Calgary and came in to see us in the PICU after Hope's bleed. Just seeing her face was a comfort in a difficult time. I truly trust the staff that is on and do not feel in any way that they are being flippant with Hope's condition. They have tested everything they can, looked for reasons for her to be like this and are coming up empty. We simply have to wait for it to improve or to start creating symptoms that will tell us more.
Hope's left lung continues to drain fluid. At this point she has drained over 600 mls of fluid from it. It's good to get it off, but if it continues to drain constantly, they will be forced to stop feeding Hope. At this point Hope is taking FULL feeds to her stomach! It's absolutely crazy that this is happening and we praise God for this miracle. If the fluid continues, the next step is to stop feeding the child in order to force the lungs to dry up. Having watched a roommate of Hope's go through this, I am praying that Hope does not need to experience that.
We are still scheduled to go into the OR on Sunday. There is no guarantee that it will happen, but we are planning accordingly. Hope is on a different blood thinner in preparation for the surgery and they are working to make her as strong as possible. She continues to receive full feeds as well as TPN (the liquid nutrients). Being so small, they decided the added calories and nutrients may help Hope put on a little weight or at least maintain what she has.
Many of our friend's children continue to struggle. The little boy I spoke of last week (Joel) is still in the PICU and struggling. Little Jaydyn was re-admitted to hospital today and is struggling to breath. I value the other families deeply as they truly understand what you're going through. I find it impossible to not fall in love with their children and hurt with them for their babies as well. It's a constant reminder that there is suffering all around, we need to support one another.
Thank you for continuing to pray for Hope and for our family. I'm really looking forward to Shawn and Sadie coming back up tomorrow. Please pray for safety as they travel and that I'd be able to balance my time with each of them.
Thursday, 31 January 2013
Wednesday, 30 January 2013
Politics
It appears we are not able to have a drama free day! Today was once again full of drama. In rounds we were told that Hope's surgery for tomorrow is cancelled. I was obviously upset about the change and asked to speak with Dr. Ross directly. The cardiologist agreed to have Dr. Ross come see me and felt that it might help. Dr. Ross was wanting to wait to get a second opinion from Boston and Toronto. Although this sounds wonderful, he also said he thought they would tell him what he already knows.
Shortly after this the nurse came to tell me that the OR had called and confirmed a surgery time of 7:20am tomorrow. I was thrilled! Then 10 minutes later the OR called to cancel that time. The roller coaster never ends with this child! Dr. Ross came by at noon to say that he was too busy to sit down and properly talk about things so he would be back at 4pm. He arrived early at 2:30 and sat down with me to talk about Hope's surgery.
An emergency case came up during the day and Hope's spot was no longer even available, she would have been bumped regardless of Dr. Ross' hesitation to do the surgery. I voiced Shawn's and my opinions about waiting to do the surgery. We want to do the surgery while her PICC line is working, and while her body doesn't have an infection. This surgery is the only thing keeping us in Edmonton and apart as a family. Once this is finished, there is nothing to keep us from being transferred back to Calgary to continue Hope's care there until she can go home.
Dr. Ross agreed with all of my concerns and felt that Hope could benefit from going into surgery. Unfortunately he has 10 other families in the same position. He was clearly angry about the position he is in, not at me, but at the government. I totally agree with him and am a witness each day to how bad the situation is. The Stollery has the highest success rates for cardiac surgery in North America, but you would never know it. The richest province in Canada is home to one of the worst PICU's you've ever seen. The infection risks are crazy high because the beds are feet apart! They need a new hospital in Edmonton desperately. Apparently there are planned budget cuts for the Intensive Care in order to open more clinics. This is going to be devastating for families like ours.
He has agreed to come into the hospital on Sunday, even though he's not working, in order to operate on Hope. This is obviously still dependent on a PICU bed being available and other logistics. If this date is bumped, Hope will be taken at the first available slot next week. We are praying that it works out for her to go on Sunday and that we're not waiting until next week. It's sad to think that so many heart children are left untreated for a time because of lack of nurses, bed availability and OR time. One day I should go back to school and get into politics, I have a lot to say! We all think tax cuts sound amazing, until we need services and the government can't afford to provide them. I would surely pay higher taxes in order to have my child receive the care she needs.
After sitting down with Dr. Ross I asked to see the cardiologist. Hope had been sleeping almost the entire day. I was worried that something was wrong, she was too settled, too sleepy and lethargic. They agreed that something was weird and drew more blood from Hope's PICC line. Everything came back normal. At 4:30 she continued to sleep and was slow to respond. The doctor was getting more worried, as was I, and ordered a CT Scan of Hope's head to make sure she wasn't bleeding. By the time Hope had the CT and the results were read and reported back to me, it was 7:30pm. The resident stayed late just to give me the results, it was truly compassionate as she knew we were worried. The scan was all clear.
One of the ICU doctors came up and suggested that with her liver issues, perhaps the anesthetics from yesterday are lingering longer than they should be. This is possible, but after 15 anesthetics it's hard to be sure if she's doing something new or if she is showing signs of a problem. Seeing as no one had any new ideas of what to look for, Hope will have to show us. If she perks up tomorrow we'll know that she was just sleepy. Please pray there is nothing new going on.
Please also pray for my mom. She was extremely tired all day today as well and we worry she could be getting sick. She went straight to bed and is hoping that sleep will cure her. I figure if we get the masses praying, she may wake up feeling like a new woman! I really need the support and would struggle to be alone at the hospital and to know that my mom came all this way and has to be sick without the comforts of home.
Today was an incredibly long day. I cried as I pleaded with our surgeon to operate on Hope. I sat for over an hour to find out if my child was bleeding from her brain. I planned to leave the hospital at 5 but left closer to 8. I'm tired, I need to get back to Calgary where I have a more normal routine going and can be with Shawn and Sadie. I had told Sadie yesterday that she would see me tonight, and once again she went to bed without kissing me goodnight. This is not easy and we would not have the strength to continue without the power of God and the prayers of his people.
Shortly after this the nurse came to tell me that the OR had called and confirmed a surgery time of 7:20am tomorrow. I was thrilled! Then 10 minutes later the OR called to cancel that time. The roller coaster never ends with this child! Dr. Ross came by at noon to say that he was too busy to sit down and properly talk about things so he would be back at 4pm. He arrived early at 2:30 and sat down with me to talk about Hope's surgery.
An emergency case came up during the day and Hope's spot was no longer even available, she would have been bumped regardless of Dr. Ross' hesitation to do the surgery. I voiced Shawn's and my opinions about waiting to do the surgery. We want to do the surgery while her PICC line is working, and while her body doesn't have an infection. This surgery is the only thing keeping us in Edmonton and apart as a family. Once this is finished, there is nothing to keep us from being transferred back to Calgary to continue Hope's care there until she can go home.
Dr. Ross agreed with all of my concerns and felt that Hope could benefit from going into surgery. Unfortunately he has 10 other families in the same position. He was clearly angry about the position he is in, not at me, but at the government. I totally agree with him and am a witness each day to how bad the situation is. The Stollery has the highest success rates for cardiac surgery in North America, but you would never know it. The richest province in Canada is home to one of the worst PICU's you've ever seen. The infection risks are crazy high because the beds are feet apart! They need a new hospital in Edmonton desperately. Apparently there are planned budget cuts for the Intensive Care in order to open more clinics. This is going to be devastating for families like ours.
He has agreed to come into the hospital on Sunday, even though he's not working, in order to operate on Hope. This is obviously still dependent on a PICU bed being available and other logistics. If this date is bumped, Hope will be taken at the first available slot next week. We are praying that it works out for her to go on Sunday and that we're not waiting until next week. It's sad to think that so many heart children are left untreated for a time because of lack of nurses, bed availability and OR time. One day I should go back to school and get into politics, I have a lot to say! We all think tax cuts sound amazing, until we need services and the government can't afford to provide them. I would surely pay higher taxes in order to have my child receive the care she needs.
After sitting down with Dr. Ross I asked to see the cardiologist. Hope had been sleeping almost the entire day. I was worried that something was wrong, she was too settled, too sleepy and lethargic. They agreed that something was weird and drew more blood from Hope's PICC line. Everything came back normal. At 4:30 she continued to sleep and was slow to respond. The doctor was getting more worried, as was I, and ordered a CT Scan of Hope's head to make sure she wasn't bleeding. By the time Hope had the CT and the results were read and reported back to me, it was 7:30pm. The resident stayed late just to give me the results, it was truly compassionate as she knew we were worried. The scan was all clear.
One of the ICU doctors came up and suggested that with her liver issues, perhaps the anesthetics from yesterday are lingering longer than they should be. This is possible, but after 15 anesthetics it's hard to be sure if she's doing something new or if she is showing signs of a problem. Seeing as no one had any new ideas of what to look for, Hope will have to show us. If she perks up tomorrow we'll know that she was just sleepy. Please pray there is nothing new going on.
Please also pray for my mom. She was extremely tired all day today as well and we worry she could be getting sick. She went straight to bed and is hoping that sleep will cure her. I figure if we get the masses praying, she may wake up feeling like a new woman! I really need the support and would struggle to be alone at the hospital and to know that my mom came all this way and has to be sick without the comforts of home.
Today was an incredibly long day. I cried as I pleaded with our surgeon to operate on Hope. I sat for over an hour to find out if my child was bleeding from her brain. I planned to leave the hospital at 5 but left closer to 8. I'm tired, I need to get back to Calgary where I have a more normal routine going and can be with Shawn and Sadie. I had told Sadie yesterday that she would see me tonight, and once again she went to bed without kissing me goodnight. This is not easy and we would not have the strength to continue without the power of God and the prayers of his people.
Tuesday, 29 January 2013
Chylorthorax :(
I'll need to be creative in order to fit the craziness that was today into one blog post! I knew it was not a good sign to see the X-ray machine over Hope as we walked in. The nurse said, "I'll explain in a minute." She pulled me aside and explained that Hope was labouring to breath and that they were quite worried about her. We were quickly told that her left lung showed a large amount of fluid and a small amount on the right as well. Hope was having this problem in Calgary and the doctor tapped her left lung to remove the fluid a long time ago. The fluid did not look like Chylothorax, but was sent away for testing. With a great deal of Lasix, the fluid was removed and I never heard anything about the test results being noteworthy. FAIL. Apparently the results showed that it was Chylothorax then, but it was missed by the doctors and therefore never treated.
Chylothorax is a side effect of heart surgery. It is apparently very rare, but not in my world. I live with all heart families each day and tons of them have it! It is essentially leakage from the thoracic duct into the lungs. The fluid needs to be removed in order to make it easier for the patient to breath. Knowing that this is a side effect of heart surgery, Hope has had this since November. It helps explain why we've had such drama with her feeds. The treatment of it requires a completely fat free diet. Hope's current feed has a high level of fat in it, so she will no longer be able to have it. She is being switched to a fat free feed that we have tried, and failed at using, once before. PLEASE pray that her body miraculously accepts this feed if Hope has Chylothorax. Although the doctors are 99% sure that she does, we are waiting for lab results from the fluid to be sure.
Around lunchtime, our miracle vet doctor came in to put an IV in Hope. He was able to get one in her head, after shaving more of her hair off. When I got back to the room, I often leave to avoid having my heart broken once again, I found some tape on her bed. The tape was full of her hair! I almost broke down knowing that it had been removed from her head and had worked as a waxing strip to tear her hair off with it. This was obviously not intentional by the staff and explains why they decided to shave some of her head. It still breaks my heart to have her hair shaved.
The head IV was essential because Hope's magnesium levels are dangerously low. The oral magnesium they were giving her was giving her terrible diarrhea and not working. This is incredibly dangerous for Hope, as low magnesium causes irregular heart rhythms and could easily take her life if not treated quickly. She is already receiving magnesium boluses through the IV line and will continue to receive them every 6 hours until her level stabilizes.
After this drama was complete, Hope was taken for an ultrasound to see what access points were available for a PICC line. We know that IV's are short lived with Hope and something more permanent was required. When this was discussed at morning rounds, we were told that if they had to use her jugular vein in her neck, a clot would be deadly for Hope. This is the only source of blood to Hope's brain currently. The other side is already clotted off and this is truly our lifeline. They thankfully found a potential vein a little further down on the right arm. This is still incredibly dangerous if it clots, but we'd still have a slight chance of saving her.
At 2:30 Hope was brought down to be put to sleep and have a chest tube put in her left side. This was to drain the fluid from her left lung and will be in for a few days at least. They were also going to attempt to get the PICC line, but were unsure if they had enough OR time. Hope was clearly not previously scheduled for these procedures. Hope came past us 30 minutes later with her chest tube in, but they had not been able to attempt the PICC. She was taken to recovery and I was sent back upstairs. 5 minutes later the anesthetist walked in and said, "Miracle of all miracles, an OR just opened up and we are taking Hope now to put her back to sleep and attempt the PICC line." This was amazing news!
Already exhausted from the emotions of the day, my mom and I had not moved when 2 minutes later a nurse walked in. We were told to run down to the radiology desk as I had not yet signed consent for this second procedure. It was a bit disorganized but we eventually found the doctor and I was able to sign consent. Then the waiting continued. Thankfully this time I was not in ear shot of the OR. The first time, I had to listen to Hope scream until the medications took over and she went to sleep. It was a horrible form of torture, but I couldn't bear to get up. I just wanted to know that she was no longer screaming and waited for what felt like eternity to hear her voice quiet.
At 4:30 we got word that Hope was back in recovery and doing well, the PICC had been a success! We are praising God for this PICC line and also begging Him to not allow it to clot. The doctors have been very honest today, Hope is up against a lot of hurdles. We have much to overcome before she is truly stable, but the fight is not over until God brings her home.
The cardiologist came to see us around 6:00 to let us know that Hope will likely be having her heart surgery on Thursday, this Thursday. If she could have gone home to gain weight, they would have preferred that. Since it does not look possible at this point, we are going to move forward with the heart surgery.
I think the most difficult part of today, was hearing Sadie in the back of my head. I had told her last night that Mommy and Hope would likely be coming home later this week. She was so excited, she squealed and said, "baby Hope all better?" It broke my heart to know that I wouldn't be able to come home, or bring her sister back to her house either. Sadie is so longing to have us back together as a family and is getting better at expressing it as the days turn into months!
I'm exhausted, I have never felt like I needed a vacation more. This journey is exhausting and my reserve energy is running low. I'm so tired of getting excited, and shortly after being devastated by bad news and set backs. I am truly hoping that this surgery makes a world of difference and that each day after, we are only waiting to heal before we can finally go home as a family. We are still in need of your continued prayer.
Chylothorax is a side effect of heart surgery. It is apparently very rare, but not in my world. I live with all heart families each day and tons of them have it! It is essentially leakage from the thoracic duct into the lungs. The fluid needs to be removed in order to make it easier for the patient to breath. Knowing that this is a side effect of heart surgery, Hope has had this since November. It helps explain why we've had such drama with her feeds. The treatment of it requires a completely fat free diet. Hope's current feed has a high level of fat in it, so she will no longer be able to have it. She is being switched to a fat free feed that we have tried, and failed at using, once before. PLEASE pray that her body miraculously accepts this feed if Hope has Chylothorax. Although the doctors are 99% sure that she does, we are waiting for lab results from the fluid to be sure.
Around lunchtime, our miracle vet doctor came in to put an IV in Hope. He was able to get one in her head, after shaving more of her hair off. When I got back to the room, I often leave to avoid having my heart broken once again, I found some tape on her bed. The tape was full of her hair! I almost broke down knowing that it had been removed from her head and had worked as a waxing strip to tear her hair off with it. This was obviously not intentional by the staff and explains why they decided to shave some of her head. It still breaks my heart to have her hair shaved.
The head IV was essential because Hope's magnesium levels are dangerously low. The oral magnesium they were giving her was giving her terrible diarrhea and not working. This is incredibly dangerous for Hope, as low magnesium causes irregular heart rhythms and could easily take her life if not treated quickly. She is already receiving magnesium boluses through the IV line and will continue to receive them every 6 hours until her level stabilizes.
After this drama was complete, Hope was taken for an ultrasound to see what access points were available for a PICC line. We know that IV's are short lived with Hope and something more permanent was required. When this was discussed at morning rounds, we were told that if they had to use her jugular vein in her neck, a clot would be deadly for Hope. This is the only source of blood to Hope's brain currently. The other side is already clotted off and this is truly our lifeline. They thankfully found a potential vein a little further down on the right arm. This is still incredibly dangerous if it clots, but we'd still have a slight chance of saving her.
At 2:30 Hope was brought down to be put to sleep and have a chest tube put in her left side. This was to drain the fluid from her left lung and will be in for a few days at least. They were also going to attempt to get the PICC line, but were unsure if they had enough OR time. Hope was clearly not previously scheduled for these procedures. Hope came past us 30 minutes later with her chest tube in, but they had not been able to attempt the PICC. She was taken to recovery and I was sent back upstairs. 5 minutes later the anesthetist walked in and said, "Miracle of all miracles, an OR just opened up and we are taking Hope now to put her back to sleep and attempt the PICC line." This was amazing news!
Already exhausted from the emotions of the day, my mom and I had not moved when 2 minutes later a nurse walked in. We were told to run down to the radiology desk as I had not yet signed consent for this second procedure. It was a bit disorganized but we eventually found the doctor and I was able to sign consent. Then the waiting continued. Thankfully this time I was not in ear shot of the OR. The first time, I had to listen to Hope scream until the medications took over and she went to sleep. It was a horrible form of torture, but I couldn't bear to get up. I just wanted to know that she was no longer screaming and waited for what felt like eternity to hear her voice quiet.
At 4:30 we got word that Hope was back in recovery and doing well, the PICC had been a success! We are praising God for this PICC line and also begging Him to not allow it to clot. The doctors have been very honest today, Hope is up against a lot of hurdles. We have much to overcome before she is truly stable, but the fight is not over until God brings her home.
The cardiologist came to see us around 6:00 to let us know that Hope will likely be having her heart surgery on Thursday, this Thursday. If she could have gone home to gain weight, they would have preferred that. Since it does not look possible at this point, we are going to move forward with the heart surgery.
I think the most difficult part of today, was hearing Sadie in the back of my head. I had told her last night that Mommy and Hope would likely be coming home later this week. She was so excited, she squealed and said, "baby Hope all better?" It broke my heart to know that I wouldn't be able to come home, or bring her sister back to her house either. Sadie is so longing to have us back together as a family and is getting better at expressing it as the days turn into months!
I'm exhausted, I have never felt like I needed a vacation more. This journey is exhausting and my reserve energy is running low. I'm so tired of getting excited, and shortly after being devastated by bad news and set backs. I am truly hoping that this surgery makes a world of difference and that each day after, we are only waiting to heal before we can finally go home as a family. We are still in need of your continued prayer.
Monday, 28 January 2013
Escaping Hope's Room
We are now at 18 mls an hour! This deserves celebrating as it is getting us closer to potentially taking this little lady home. We would love to have Hope at home with our family, even though we'd have to bring her back in a month for her heart surgery. I'm skeptical that she would be strong and healthy enough to stay at home, but I'd take one night at this point. Hope has had 2 spit ups and one throw up in the last 24 hours, this is minor in comparison to her history. We continue to hope and pray that she will tolerate her feeds.
The blood cultures came back and are officially negative! Praise the Lord for that result, as we don't have a line to run antibiotics. Unfortunately, the results also showed that Hope's magnesium levels are very low. They need to give her some supplements of magnesium, but don't have a line to put them into her blood. As a result, she will need to take them orally/through her feeding tube. This is known to cause diarrhea, something we are already battling. Please pray that this will not dehydrate Hope as we don't have a way of increasing her fluids. Many people have asked me if Hope could take probiotics to help with her stomach issues. In short, probiotics have a potential to kill Hope. The doctors are not even willing to consider them as the risks outweigh the benefits, I agree.
The most exciting part of today, was taking Hope out in a stroller for an outing. Now that she is off oxygen, we were able to walk around the hospital with her for 15 minute intervals. It felt so good to get out of her room and to stimulate Hope with some new sights. She absolutely loves it and stays wide awake the entire time. With all the excitement of going for a walk and the need to digest her food, Hope is napping more frequently throughout the day.
I got to be a part of Sadie's bedtime routine over Skype tonight. It's so nice to feel like I am still a part of her day from so far away. Thank you for continuing to pray for our family as we raise our girls, often in different cities. Thank you for continuing to pray for Hope as well, we have seen so much progress in the last couple of weeks. We still have setbacks, but overall we feel that every step forward should be celebrated and that God should receive the glory.
The blood cultures came back and are officially negative! Praise the Lord for that result, as we don't have a line to run antibiotics. Unfortunately, the results also showed that Hope's magnesium levels are very low. They need to give her some supplements of magnesium, but don't have a line to put them into her blood. As a result, she will need to take them orally/through her feeding tube. This is known to cause diarrhea, something we are already battling. Please pray that this will not dehydrate Hope as we don't have a way of increasing her fluids. Many people have asked me if Hope could take probiotics to help with her stomach issues. In short, probiotics have a potential to kill Hope. The doctors are not even willing to consider them as the risks outweigh the benefits, I agree.
The most exciting part of today, was taking Hope out in a stroller for an outing. Now that she is off oxygen, we were able to walk around the hospital with her for 15 minute intervals. It felt so good to get out of her room and to stimulate Hope with some new sights. She absolutely loves it and stays wide awake the entire time. With all the excitement of going for a walk and the need to digest her food, Hope is napping more frequently throughout the day.
I got to be a part of Sadie's bedtime routine over Skype tonight. It's so nice to feel like I am still a part of her day from so far away. Thank you for continuing to pray for our family as we raise our girls, often in different cities. Thank you for continuing to pray for Hope as well, we have seen so much progress in the last couple of weeks. We still have setbacks, but overall we feel that every step forward should be celebrated and that God should receive the glory.
Sunday, 27 January 2013
50% Good and 50% Bad
Today was split, the morning was not very good, and the afternoon was not very bad. Hope's PICC line continued to leak and was no longer useable at all. They had to pull the line and in doing so, found that it was no longer even in her vein. After the line was pulled, her leg was found to be leathery and firm. Please pray that this fluid would quickly leave her body and not cause any damage. The cardiologist, who also does heart caths and is great with IV's, tried to get an IV on Hope 6 times. None of them were successful and Hope fell asleep in exhaustion when they finally gave up.
At noon an anesthetist was brought in to attempt an IV. He managed to get one in Hope's right arm on his second attempt. They began running fluids for a couple of hours and then started her IV antibiotics. After a mere 3 hours, it was clear that the IV was failing and the line was pulled. We are now without access to Hope's body and we know that access if extremely difficult to find.
However, the afternoon was amazing. For the first time since we arrived in Edmonton, Hope was settled. She has only been happy while sleeping for the last two weeks. It makes me wonder if the PICC line was causing her pain and making her uncomfortable. I am praying she will not have any lines put it and that they wouldn't be necessary. She seems to be so much happier without something sticking out of her body!
It takes 48 hours for the blood cultures to truly come back negative. They are given that long to grow bacteria. Hope will reach the 48 hour mark at 6 am tomorrow morning. If her cultures are negative, we will not need line access and can leave the poor girl alone. Our other problem is feeding. At this point, Hope is receiving only 8 mls an hour of feed into her stomach. She needs to receive 24 mls an hour in order to avoid the use of TPN. We are moving her up slowly, please pray that we have success in her feeds. This would be the first time Hope has tolerated full feeds since August, we need a miracle!
If Hope can tolerate her feeds, we can bring her home to await her next heart surgery. If we cannot get her to feed, the heart surgery is a must at this point as she won't grow in the hospital. Please pray for the doctors as they make decisions about Hope this week. Please also pray against infection and the need for antibiotics.
I don't know how long I can handle our family being in two cities. As I loaded Sadie into the car with Shawn this evening, she said, "I don't want to go home without you. Why can't you come?" I explained that I needed to be here for baby Hope and she said, "but baby Hope isn't even at home with you here!" I cried as Shawn and Sadie pulled out of the driveway and started the drive back to Calgary for another week apart from Hope and I. I would love to make the drive back to Calgary this week with Hope in my backseat!
At noon an anesthetist was brought in to attempt an IV. He managed to get one in Hope's right arm on his second attempt. They began running fluids for a couple of hours and then started her IV antibiotics. After a mere 3 hours, it was clear that the IV was failing and the line was pulled. We are now without access to Hope's body and we know that access if extremely difficult to find.
However, the afternoon was amazing. For the first time since we arrived in Edmonton, Hope was settled. She has only been happy while sleeping for the last two weeks. It makes me wonder if the PICC line was causing her pain and making her uncomfortable. I am praying she will not have any lines put it and that they wouldn't be necessary. She seems to be so much happier without something sticking out of her body!
It takes 48 hours for the blood cultures to truly come back negative. They are given that long to grow bacteria. Hope will reach the 48 hour mark at 6 am tomorrow morning. If her cultures are negative, we will not need line access and can leave the poor girl alone. Our other problem is feeding. At this point, Hope is receiving only 8 mls an hour of feed into her stomach. She needs to receive 24 mls an hour in order to avoid the use of TPN. We are moving her up slowly, please pray that we have success in her feeds. This would be the first time Hope has tolerated full feeds since August, we need a miracle!
If Hope can tolerate her feeds, we can bring her home to await her next heart surgery. If we cannot get her to feed, the heart surgery is a must at this point as she won't grow in the hospital. Please pray for the doctors as they make decisions about Hope this week. Please also pray against infection and the need for antibiotics.
I don't know how long I can handle our family being in two cities. As I loaded Sadie into the car with Shawn this evening, she said, "I don't want to go home without you. Why can't you come?" I explained that I needed to be here for baby Hope and she said, "but baby Hope isn't even at home with you here!" I cried as Shawn and Sadie pulled out of the driveway and started the drive back to Calgary for another week apart from Hope and I. I would love to make the drive back to Calgary this week with Hope in my backseat!
Saturday, 26 January 2013
The Hope 180
I have decided that a 180 is too simple of a term for what Hope does. She needs to have her own phrase to describe the antics that she pulls on my heart. I have decided to call it, The Hope 180. It is not a complete turn around because first you have to pretend you are doing much better, then make a huge turn around and do the opposite.
This morning we got the call from my mom that Hope was not doing well. Her work of breathing was up, she'd thrown up most of the night and was no longer being fed. Her oxygen levels were poor and her heart rate was high. The cardiologist came on the phone and told me she did not look good.
When Shawn and I arrived at the hospital we could see that she was not as strong as she had been the day before. The PICU had already been up to see her and they were talking about whether or not she needed to be taken down there. Hope was no longer looking like she may be headed home with us, some things are too good to be true.
What happened?? At this point they aren't sure and we're looking for answers. They have 3 possibilities of what went wrong.
1. Hope aspirated on vomit in the night and has fluid trapped in her lungs as a result.
2. Hope's line is severely infected and has passed into her blood, causing her to be septic.
3. Hope had a rare reaction to the blood transfusion and it should resolve in 24-48 hours.
Hope's X-ray does not look good, but I still don't feel that she aspirated. It simply doesn't fit with what I've seen her do and how she often responds to vomiting. I'm willing to admit that I could be wrong. I feel like the line infection makes the most sense. The doctors took blood from Hope's neck this morning and sent cultures that should be back in 48 hours. She was started on two broad spectrum antibiotics as well. She appeared to improve by the afternoon and I wonder if the antibiotics are already touching the infection.
Our major issue once again, is the PICC line. We are now in need of access to Hope, again, in order to run the antibiotics. We may also need to start TPN if she is not able to tolerate her feeds. There is a question of whether she has feeding intolerance, or was only vomiting because of being sick. Time will tell I guess. The PICC line is already leaking and cannot have TPN run through it as it would cause a burn on her skin. We need a new line and this issue will likely be addressed on Monday. There is no one on this weekend that would consider touching Hope, it's simply too dangerous at this point. Hope is already so skinny, I can feel every ridge of her spine as I rub her back and see every rib. Even a weekend without proper nutrition is not good for such a thin baby.
Please pray for us. We are so discouraged. Hope (not the person) is a dangerous thing, it can be the strength that carries you through, but can also be so painful to have it taken away. There is still a chance that the infection, aspiration or blood reaction will clear and we can get back on track to take Hope home. It's just a whole lot less likely. Is this the answer to our prayer and the way to push us to have Hope's surgery? We are not sure quite yet and will likely have to wait for the cardiologist to comment on that Monday morning.
Today I watched a mother grieve after being told there was nothing more the doctors could do for her son. We know that we are so close to that place with Hope and I cried seeing her pain and knowing that it could easily be mine. I want a miracle for them, a miracle for Hope and my family back together again in Calgary. We need a multitude of angels to storm the ICE here at the Stollery Hospital. We want to see God move in a powerful way in the lives of these kids and we believe He is able. Would you please pray that this would happen? I would love to have a picture of Hope with this little boy in 5 years. A true testament to the medical community that miracles happen, even when there is nothing they can do.
This morning we got the call from my mom that Hope was not doing well. Her work of breathing was up, she'd thrown up most of the night and was no longer being fed. Her oxygen levels were poor and her heart rate was high. The cardiologist came on the phone and told me she did not look good.
When Shawn and I arrived at the hospital we could see that she was not as strong as she had been the day before. The PICU had already been up to see her and they were talking about whether or not she needed to be taken down there. Hope was no longer looking like she may be headed home with us, some things are too good to be true.
What happened?? At this point they aren't sure and we're looking for answers. They have 3 possibilities of what went wrong.
1. Hope aspirated on vomit in the night and has fluid trapped in her lungs as a result.
2. Hope's line is severely infected and has passed into her blood, causing her to be septic.
3. Hope had a rare reaction to the blood transfusion and it should resolve in 24-48 hours.
Hope's X-ray does not look good, but I still don't feel that she aspirated. It simply doesn't fit with what I've seen her do and how she often responds to vomiting. I'm willing to admit that I could be wrong. I feel like the line infection makes the most sense. The doctors took blood from Hope's neck this morning and sent cultures that should be back in 48 hours. She was started on two broad spectrum antibiotics as well. She appeared to improve by the afternoon and I wonder if the antibiotics are already touching the infection.
Our major issue once again, is the PICC line. We are now in need of access to Hope, again, in order to run the antibiotics. We may also need to start TPN if she is not able to tolerate her feeds. There is a question of whether she has feeding intolerance, or was only vomiting because of being sick. Time will tell I guess. The PICC line is already leaking and cannot have TPN run through it as it would cause a burn on her skin. We need a new line and this issue will likely be addressed on Monday. There is no one on this weekend that would consider touching Hope, it's simply too dangerous at this point. Hope is already so skinny, I can feel every ridge of her spine as I rub her back and see every rib. Even a weekend without proper nutrition is not good for such a thin baby.
Please pray for us. We are so discouraged. Hope (not the person) is a dangerous thing, it can be the strength that carries you through, but can also be so painful to have it taken away. There is still a chance that the infection, aspiration or blood reaction will clear and we can get back on track to take Hope home. It's just a whole lot less likely. Is this the answer to our prayer and the way to push us to have Hope's surgery? We are not sure quite yet and will likely have to wait for the cardiologist to comment on that Monday morning.
Today I watched a mother grieve after being told there was nothing more the doctors could do for her son. We know that we are so close to that place with Hope and I cried seeing her pain and knowing that it could easily be mine. I want a miracle for them, a miracle for Hope and my family back together again in Calgary. We need a multitude of angels to storm the ICE here at the Stollery Hospital. We want to see God move in a powerful way in the lives of these kids and we believe He is able. Would you please pray that this would happen? I would love to have a picture of Hope with this little boy in 5 years. A true testament to the medical community that miracles happen, even when there is nothing they can do.
Friday, 25 January 2013
A Miracle in 2013
Hope was taken down to the OR at 11am this morning. The liver specialist in Edmonton and the one in Calgary told us that the varices would take numerous treatments to heal and were a grade 4. The fact that we waited so long to treat them this time was potentially risky, she could have had another large bleed. Around noon the GI doctor came out of the OR with pictures from the scope he had just put down Hope's throat. The varices, which he showed us, were there once again. They were now only a grade 1 and were not even bad enough to inject. This is truly a miracle and not what anyone expected, other than those that believe in a powerful God!
Hope has varices, yes. These varices are nothing like they were the first time and should be so much worse. She will not have to go in for another look for 2-4 months. We were originally told that she would need to go in every 4 weeks for 6 months. We are praying that Hope's liver clot is improving and that this is evidence of another miracle happening in the portal vein of her liver. A mom can certainly hope for the impossible when it comes to her baby. Especially a baby that she entrusts into God's care, the author of impossible.
Another thing that needs to be mentioned is Hope's ascites (fluid in the belly). This was a major issue in the summer and we were told that it would take a few years to improve. This fluid is currently VERY minimal in Hope's abdomen. It has improved in a major way and is no longer one of our challenges. This is a sign that Hope's liver is growing new veins to get the blood where it needs to go and will give her more time. Praise the Lord!
After her procedure, Hope had another reaction to the anesthetic. She turned completely red like a tomato and was very lethargic. The same reaction we've had numerous times after anesthetic. An hour or so after some Benadryl, Hope's body pulled through and the reaction subsided. I believe the difference between the last anesthetic and this one, was the Benadryl. Last time I asked the anesthetist to give Hope Benadryl right after extubation. That appears to be the difference between the last two procedures and her bright red face.
This afternoon we were thrown a huge curve ball. The cardiologist pulled me aside to talk about next steps for Hope. Although this doctor is new on the scene, I have a deep trust and peace about him working with Hope. Something that only the Lord could put into me and I'm assuming it was for our conversation today.
Our surgeon, Dr. Ross, met with Dr. Kantor and another cardiologist that we trust and value her opinion. They looked at the pictures of Hope's aorta from the echo, CT Scan and heart cath. They are not firm on their decision and have once again asked us to decide what to do next. They feel we could wait a month for Hope's heart surgery, but are also willing to do it now. Here's the catch...they feel that waiting at HOME may give Hope a bit of time to grow and develop. This would give her a better chance to pull through the surgery well and heal more quickly afterwards.
They are recommending that if Hope can tolerate these feeds and get off, or to a minimal level on her oxygen, that she be discharged next week. She would be discharged from Edmonton and we would drive Hope back to Calgary to live in our house until her surgery!! They are not positive that this is possible and would wait to see what Hope's little body does and let her decide. If she is not able to tolerate her feeds and cannot get off oxygen, we would go in and have surgery next week or early the following week.
If we get Hope back to Calgary, but she doesn't do well at home and is re-admitted to the hospital, we would be brought back to Edmonton and she'd have surgery ASAP. We are not sure that Hope is strong enough to come out of the hospital and be at home, but we're thinking we may try. Shawn is currently driving up and we plan to sit down and have a good discussion about what is best for Hope when he arrives.
If Hope were to go home next week, we would be brought back in a month to have a sedated echo. If the aorta continues to look kinked or is looking worse, she'd go in for surgery at that point. If by some miracle, which we know is possible, the aorta looked better, surgery would be delayed once again. Our ultimate dream would be for Hope to NEVER have this extra open heart surgery. Our God is able and we pray that His plan is for Hope to come home and not need this surgery. If that is not His plan, we trust that His ways are greater than our own and that He will carry us through that difficult journey. It does not make the pain any less, but it gives us the strength to walk through it.
One more thing...Hope's PICC line is leaking. As a result, they have decided to give her a blood transfusion this evening before pulling the line tomorrow morning. Please pray we can remain off TPN and do not need to get a new line. We would love our friends to give blood as well, Hope has sure used a lot of it and we appreciate the sacrifice of every donor.
We are anxiously excited if this works. At the same time, we do not want to minimize the severity of Hope's condition. We still have a lot of hurdles to overcome and are still in need of your continued prayers. Hope's liver clot is a major issue and life threatening. The kinks in her aorta and the need to reconstruct it is not good, we pray her heart grows in a healthy way and that she can pull through another open heart surgery if she needs it. We are also praying that the varices continue to stay small and do not get worse. This way we are at a lower risk of another major bleed.
As you can see, today we have much to praise God for. We also have many things to pray that God gives us wisdom for. Would you join us in asking God to allow Hope's body to decide what we should do? We pray that if she needs this surgery right away, that her body would reject her feeds and her oxygen rates would drop. If she is not meant to have the surgery, please pray that she would be home and living with our family by the end of next week. Hope, it's time to show those doctors what a miracle is!!
Hope has varices, yes. These varices are nothing like they were the first time and should be so much worse. She will not have to go in for another look for 2-4 months. We were originally told that she would need to go in every 4 weeks for 6 months. We are praying that Hope's liver clot is improving and that this is evidence of another miracle happening in the portal vein of her liver. A mom can certainly hope for the impossible when it comes to her baby. Especially a baby that she entrusts into God's care, the author of impossible.
Another thing that needs to be mentioned is Hope's ascites (fluid in the belly). This was a major issue in the summer and we were told that it would take a few years to improve. This fluid is currently VERY minimal in Hope's abdomen. It has improved in a major way and is no longer one of our challenges. This is a sign that Hope's liver is growing new veins to get the blood where it needs to go and will give her more time. Praise the Lord!
After her procedure, Hope had another reaction to the anesthetic. She turned completely red like a tomato and was very lethargic. The same reaction we've had numerous times after anesthetic. An hour or so after some Benadryl, Hope's body pulled through and the reaction subsided. I believe the difference between the last anesthetic and this one, was the Benadryl. Last time I asked the anesthetist to give Hope Benadryl right after extubation. That appears to be the difference between the last two procedures and her bright red face.
This afternoon we were thrown a huge curve ball. The cardiologist pulled me aside to talk about next steps for Hope. Although this doctor is new on the scene, I have a deep trust and peace about him working with Hope. Something that only the Lord could put into me and I'm assuming it was for our conversation today.
Our surgeon, Dr. Ross, met with Dr. Kantor and another cardiologist that we trust and value her opinion. They looked at the pictures of Hope's aorta from the echo, CT Scan and heart cath. They are not firm on their decision and have once again asked us to decide what to do next. They feel we could wait a month for Hope's heart surgery, but are also willing to do it now. Here's the catch...they feel that waiting at HOME may give Hope a bit of time to grow and develop. This would give her a better chance to pull through the surgery well and heal more quickly afterwards.
They are recommending that if Hope can tolerate these feeds and get off, or to a minimal level on her oxygen, that she be discharged next week. She would be discharged from Edmonton and we would drive Hope back to Calgary to live in our house until her surgery!! They are not positive that this is possible and would wait to see what Hope's little body does and let her decide. If she is not able to tolerate her feeds and cannot get off oxygen, we would go in and have surgery next week or early the following week.
If we get Hope back to Calgary, but she doesn't do well at home and is re-admitted to the hospital, we would be brought back to Edmonton and she'd have surgery ASAP. We are not sure that Hope is strong enough to come out of the hospital and be at home, but we're thinking we may try. Shawn is currently driving up and we plan to sit down and have a good discussion about what is best for Hope when he arrives.
If Hope were to go home next week, we would be brought back in a month to have a sedated echo. If the aorta continues to look kinked or is looking worse, she'd go in for surgery at that point. If by some miracle, which we know is possible, the aorta looked better, surgery would be delayed once again. Our ultimate dream would be for Hope to NEVER have this extra open heart surgery. Our God is able and we pray that His plan is for Hope to come home and not need this surgery. If that is not His plan, we trust that His ways are greater than our own and that He will carry us through that difficult journey. It does not make the pain any less, but it gives us the strength to walk through it.
One more thing...Hope's PICC line is leaking. As a result, they have decided to give her a blood transfusion this evening before pulling the line tomorrow morning. Please pray we can remain off TPN and do not need to get a new line. We would love our friends to give blood as well, Hope has sure used a lot of it and we appreciate the sacrifice of every donor.
We are anxiously excited if this works. At the same time, we do not want to minimize the severity of Hope's condition. We still have a lot of hurdles to overcome and are still in need of your continued prayers. Hope's liver clot is a major issue and life threatening. The kinks in her aorta and the need to reconstruct it is not good, we pray her heart grows in a healthy way and that she can pull through another open heart surgery if she needs it. We are also praying that the varices continue to stay small and do not get worse. This way we are at a lower risk of another major bleed.
As you can see, today we have much to praise God for. We also have many things to pray that God gives us wisdom for. Would you join us in asking God to allow Hope's body to decide what we should do? We pray that if she needs this surgery right away, that her body would reject her feeds and her oxygen rates would drop. If she is not meant to have the surgery, please pray that she would be home and living with our family by the end of next week. Hope, it's time to show those doctors what a miracle is!!
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