These posts are getting further and further apart mainly because we've been so busy chasing our little boy around. Life has seemed so "normal" these last couple of months!
Since my last post:
Emerson's liver biopsy went smoothly without any complications. We spent the night on Unit 1 afterwards chasing our busy boy around. The next morning they drew blood work and we were able to go home. That week Em was in quite a bit of pain. Every time he would bend down to pick up a toy or move the wrong way he winced and cried out in pain. This lasted almost two weeks, poor guy. We received the results from the biopsy a week later. They were inconclusive.. It was not GVHD and it was not a virus which was good BUT we were still left clueless as to what was causing the elevation. The only good news we got from the biopsy was that the liver damage (shown by the elevated enzymes) was reversible.
In the following weeks his liver enzymes continued to remain elevated but were stable and not climbing higher. Now that we were certain the elevation wasn't being caused by GVHD we were able to start weaning Emerson's immune suppressant drug he has been taking since transplant. This is done at 6 months post transplant (Day +180) and is a HUGE milestone as it means his immune cells will finally have a chance to grow without anything slowing them down. The wean is done over a course of 8-12 weeks and we must watch closely for any signs of GVHD/signs of his body rejecting the transplant.
Each week as we weaned his medication we saw an improvement in his liver enzymes and kidney function. In a month his liver enzymes were back to NORMAL! They won't say that the immune suppressant drug was the cause because there has been no other documentation of that happening but I dont know what else it could have been. Since his numbers were looking so good we went down to bloodwork every 2 weeks for two months. At each appointment our visits became shorter. We no longer needed to see the dietitian because Emerson was back up to the 90th percentile for weight and was crushing food and fluids. He was finally starting to feel like himself again. The physical exams were quicker because we had no concerns and it was just a quick check-up. At each visit they would comment at how big he's getting and how good he looks, what a nice change.
The only negative that came out of the immune suppressant wean was that Emerson eczema came back. It started on his calves and traveled up to his back and stomach, then to underneath his PICC line dressing. We tried for a couple weeks using a breathable dressing which meant sterile dressing changes once or twice daily. This was extremely worrisome because it increased the risk of another line infection which would mean another hospital stay and the potential for sepsis again.. During the last week of the wean Emerson's doctors and us decided it would be safest to remove Em's PICC line. This took a bit of preparation because the removal meant he'd need to be poked for all of his blood work. We scheduled his normal blood draws for a couple days later and also included his T-cell function test. This test is very important because it lets us know if the new cells growing are also able to function and fight an infection. This test can only be drawn on Thursdays as thats the only day the lab can process it. The labs were drawn and we went in to have his line removed. Hallelujah!! NO LINE! Em celebrated with his first full bath where he was able to splash and be worry free. Em would be able to go swimming and play in his water table for the first time!
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Emerson is now a healthy 5 year old boy. He will be entering into Kindergarten in the Fall and we could not be more proud. We have been transferred to the long term follow up clinic and are seen by an oncologist every 6 months and still see Dr Wright, our Immunologist, once a year. The entire thing now feels like just a bad dream. We are so busy living a "normal" life that its easy to forget what our sweet boy went through. We are reminded when we go back for appointments, when we see posts on social media of newly diagnosed SCID babes, or when facebook sends "memories" from years past. During those moments the past pain floods in and you feel like you're drowning. This only lasts for a brief moment until one of the kids shakes you from your thoughts and its right back to that happy busy life. This past year we were also able to find out who Emerson's bone marrow donor was. To be able to personally thank him for what he gave our family and show him the little boy he saved was something I prayed for for a long time. We hope that we are able to instill some hope into the world of any newly diagnosed SCID babies and families. That those first couple years are tough but that it will get better and that one day you will be living such a busy normal life that you too will forget about the heartaches.
Emerson & Daddy
Sunday, 25 August 2019
Tuesday, 5 January 2016
Last leg of the marathon.
No one warns you of the "post-transplant" period. They don't tell you that your child will have even less of an immune system then they had before transplant and that it will feel like an eternity until any cells begin to trickle in. They don't tell you to expect numerous complications and bumps in the road. I wish we were warned that the worst was yet to come.. Not that I would have believed them.
Our Immunologist had come in to go over Emie's 100 day Chimerism/Immune Panel a while back and said she's heard lots of families describe this awkward period as the last leg of a marathon. I couldn't describe it any better. I feel like we've been running full tilt for so long and the end is still not in sight. We are completely and utterly exhausted- physically, mentally, & emotionally. If you were to ask me before diagnosis if it were possible to survive all we've been through I'd say not a chance.
Since my last update - Em's new PICC line was working great. We were discharged home and were in and out of clinic what was suppose to be twice a week. After a couple visits they noticed his urea/creatinine (markers of hydration and kidney function) to be high and his bicarb (acid-base regulation) was extremely low. These are indicators that his kidneys were unhappy. They tried treating it with saline boluses and eventually tried a few doses of oral bicarb. His numbers continued to worsen and we were readmitted after being home for less then 2 weeks. He was hooked up to continuous fluids and bicarb supplementation to try and get his numbers up. They also tested his urine for bacteria which could be affecting his kidney/making his numbers off. They were unsuccessful with the catheter so a bagged sample would have to do. It came back positive for a bacteria but its hard to know if it was contamination or not. He was started on a week of antibiotics which would worsen his already loose stool and make his kidney even angrier. Em was hooked up continuously for a week in hospital before his numbers began to improve. They started letting him be unhooked for a couple hours a day and working up as long as his bicarb stayed at an ok level. By the time Halloween came we were able to leave on an 8 hr pass :). Em was able to experience Halloween and it was magical. He was SO excited every time the doorbell rang. He would grab a hold of our fingers and race to the door giving the kids the biggest smiles as they collected their treats. Em dressed up as a little monster and we took him out to a few of the neighbours houses (keeping him at a safe distance). I've never seen such excitement on his face, it was priceless :).
A few days later they trialled him on an overnight pass. It was so nice being able to put him to sleep in his own bed and spend the night as a couple for the first time in weeks. I can't stress enough to everyone to not take for granted the little things in life. We went in the next morning to check his levels and they had dropped from 19 to 12 (Normal levels are 18-26). It was absolutely devastating. We were back at square one with no end in sight. They took away our passes once again and Em was hooked up 24hrs a day.. This was one of my lowest lows. To make things worse the Oncologist on was insensitive and made a tough situation even more horrible. It took a couple days to get his bicarb back up to the level they wanted but the Oncologist refused to let us out even for walks. He said he felt more comfortable being able to monitor us. Another week passed until they allowed us to go out on a 2 hr pass. We did that for a few days and then they allowed us out for 4 hours at a time. These small escapes are what kept me sane and able to survive this never ending hospital stay. Grandma came to visit and within this period Emerson celebrated his day+100 post BMT. We brought cupcakes to the unit and did crafts in the room until we were able to go home on a pass. It was a really nice day.
What is the significance of day+100 post BMT. It really only meant being able to wean a couple of the medications Em was on. We had thought it meant that we were out of the woods for acute GVHD but were told otherwise. I guess they have seen cases of GVHD post day 100. It was fairly anti-climatic. They sent off his immune panel (breakdown of the specific immune cells growing) and chimerism (tells what percentage of the immune cells are from the donor or from Emerson). The results came back and those were also anti-climatic. He still had less cells then he did before the transplant however there were a few immature t-cells which weren't present before. We were told that this is exactly what we should expect at that point but in my head I was hoping for so much more. I wanted them to tell me he was fixed, that we wouldn't need to worry any longer. His chimerism results were more assuring. He was 100% donor cells for his t-cells and b-cells meaning the transplant had taken and the chemo did what it needed to. They will now draw an immune panel/chimerism every 30 days.
In the next couple weeks we kept increasing the length of our pass. We were now only spending our evenings/sleeping at the hospital. As tough as this was it was so much better then being stuck there 24hrs. Emerson was feeling great and was so happy and "normal" at home. I feel like he learns something new each day and is developing so quickly now. On November 26th Emerson decided it was time he walked on his own :) He had been taking steps alone between us since before his transplant but that evening he started to walk from room to room upstairs all on his own. I can't begin to describe the joy and pride that was oozing out of me. That little boy amazes me so much everyday with his strength and happy-go-lucky demeanour. Things finally started to feel like they were going in the right direction. His bicarb level had been stable in the 20's even with us weaning the length of the infusion. They had come to the conclusion that his kidneys were still under stress from the injury they underwent with the immune suppressant drug in combination with dehydration from his persistent loose stool. Things were falling into place and we began discussing discharge home on oral bicarb. They were still being very cautious with weaning the bicarb and were going at a very slow rate. We were down to a 4 hr infusion and three oral doses. This allows us to spend our nights at home and just come in the morning for the infusion. On Dec 2nd we woke up at 3am to find Emerson had soiled his jammies up his back and down THE ONE SLEEVE that had his PICC line....... I still to this day do not understand how this happened or how we can have such bad luck. We called the Unit and they walked us through a sterile cap change at home. I barley slept that night re-living our last septic attack and hospital stay. I felt like crawling into a hole. I couldn't go through that again. Em woke up in a good mood and we went in for our bicarb infusion the next day. The nurse drew off a little extra waste that morning as a precaution and everything seemed to be ok. We went home and Em had his nap. He woke up super flushed and without fail he had a temp. I was dizzy with worry and hatred at myself for doing the cap change.We brought him in and the nurse took his temp and got 37.4 (normal). I started sobbing.. I couldn't believe it. I still had an awful feeling that something wasn't right. We stayed a few hours and he had a low grade temp of 37.6 but nothing over 38. We went home and tried not worrying too much. Em went down at his usual time but woke up at 10:30 pm and he felt really warm. So off to the hospital we went. He was febrile this time. They drew blood cultures and began him on antibiotics. No one slept that night as Em was crying in pain and shaking. We were re-living our worst nightmare. Em was septic for the second time in months. I still don't understand what we did to deserve the hell we've been through. I don't believe everything happens for a reason, there is no reason on earth good enough that this sweet boy has had to endure what he's been through. The next morning (Friday) Ems blood pressure was super low. They gave two fluid boluses and consulted the STEP team. Things were not looking good and we were told Em was one bad blood pressure away from being admitted to the ICU where he'd be sedated, intubated, and given an arterial line. This would be so they could administer medications that would help his blood pressure. On top of everything else, that afternoon Emerson's PICC line stopped working.. They still don't know why but think it might have been from the bicarb reacting with one of the antibiotics given even though they were extremely careful.. So Emerson was now septic with no IV access.... Em was poked too many times for blood work and they needed an IV asap. I requested that Anesthesia come to place the line because of the trouble we've had in the past. They came and got the line the first try, THANK YOU! Things started to stabilize a bit more. His pressure was still on the lower side but he had perked up and was wanting to sit and play. We narrowly avoided the ICU and Em was back to himself the next morning. The antibiotics did their job and cleared Ems blood quickly of the bacteria and he was feeling better. The IV that was placed was holding strong but this meant Em still needed to be poked peripherally everyday for blood work. We needed a central line, bad. Monday came and they had a cancellation in the operating room. Em was able to get in for another PICC line to be placed! AND not be red listed!!! The line was placed without complication and the oncologist was so happy with the way things were looking that he allowed us to go home on an overnight pass! Things had gone from horrific potentially ICU admission to back on pass in 3 days. It was truly a miracle.
We were home for Christmas :) JPs entire family was able to fly in and spend a few days with us. Emerson was over the moon excited to be around his aunties. It was so so nice to have everyone together. My mom and family came up just after Christmas to spend time with Em. The love was non-stop and Em could not have been happier. As lovely as the holidays were I felt a sense of relief as they ended. I said goodbye to the most horrible year and welcomed 2016 with open arms. This year HAS to be better then the last.
They had drawn off Emerson's 4 month post BMT immune panel/chimerism while we were still in hospital and we received the results a bit ago. Emerson FINALLY HAS T-CELLS!! (que happy dance) His CD4 count (the immune cells that he needs to fight viruses) at 100 days were 40 and only one month later were up to 270! (normal is 400-1600). We had noticed Em's nose wasn't runny any more. They did a swab and it came back negative. He cleared his cold viruses!!!! He was cold free for the first time since we was months old!!! I feel like things may finally turn a corner. Now all we need is the damn noro-virus to scram.
With this good news came bad news. They informed us that his liver enzymes (a marker that the liver is under stress) were climbing. Normal is under 50 and his were in the 500's. These can climb for many reasons. In Ems case it could be a virus or GVHD of the liver. Both of these causes should manifest differently though. If it were viral you'd expect him to show symptoms of being ill, fever ect. and if it were GVHD his bilirubin would also be elevated but his was normal. They did an ultrasound of his liver and it came back normal. They then sent off every viral study they could think of as well as a few other liver markers. So far everything has come back negative or normal. They are completely clueless as to what could be making his liver so upset. His numbers now are around 1000. Our only option now is to have another surgery and do a liver biopsy. This will tell us if it is a virus we haven't been able to test or if it is an unusual case of GVHD. The operation is tentatively scheduled for Friday or Monday. This will mean another night in the hospital but hopefully it will also mean an answer. The constant stress and worry we've been living under has been unbearable. I dream of the day where we can stop worrying over every little thing and just enjoy life with our little boy.
I want to thank our families for helping us survive the last few months. We would not have been able to get through the last while without you. Whether it be putting your own lives on hold so you can come stay with us while admitted in hospital so JP could work to the emotional support you've all provided. We are so luck to have you all.
Thank you for everyones support and prayers. Please say a little one that we find some answers to Ems elevated liver enzymes and for his cells to grow, grow, grow!
D,xo
Our Immunologist had come in to go over Emie's 100 day Chimerism/Immune Panel a while back and said she's heard lots of families describe this awkward period as the last leg of a marathon. I couldn't describe it any better. I feel like we've been running full tilt for so long and the end is still not in sight. We are completely and utterly exhausted- physically, mentally, & emotionally. If you were to ask me before diagnosis if it were possible to survive all we've been through I'd say not a chance.
Since my last update - Em's new PICC line was working great. We were discharged home and were in and out of clinic what was suppose to be twice a week. After a couple visits they noticed his urea/creatinine (markers of hydration and kidney function) to be high and his bicarb (acid-base regulation) was extremely low. These are indicators that his kidneys were unhappy. They tried treating it with saline boluses and eventually tried a few doses of oral bicarb. His numbers continued to worsen and we were readmitted after being home for less then 2 weeks. He was hooked up to continuous fluids and bicarb supplementation to try and get his numbers up. They also tested his urine for bacteria which could be affecting his kidney/making his numbers off. They were unsuccessful with the catheter so a bagged sample would have to do. It came back positive for a bacteria but its hard to know if it was contamination or not. He was started on a week of antibiotics which would worsen his already loose stool and make his kidney even angrier. Em was hooked up continuously for a week in hospital before his numbers began to improve. They started letting him be unhooked for a couple hours a day and working up as long as his bicarb stayed at an ok level. By the time Halloween came we were able to leave on an 8 hr pass :). Em was able to experience Halloween and it was magical. He was SO excited every time the doorbell rang. He would grab a hold of our fingers and race to the door giving the kids the biggest smiles as they collected their treats. Em dressed up as a little monster and we took him out to a few of the neighbours houses (keeping him at a safe distance). I've never seen such excitement on his face, it was priceless :).
What is the significance of day+100 post BMT. It really only meant being able to wean a couple of the medications Em was on. We had thought it meant that we were out of the woods for acute GVHD but were told otherwise. I guess they have seen cases of GVHD post day 100. It was fairly anti-climatic. They sent off his immune panel (breakdown of the specific immune cells growing) and chimerism (tells what percentage of the immune cells are from the donor or from Emerson). The results came back and those were also anti-climatic. He still had less cells then he did before the transplant however there were a few immature t-cells which weren't present before. We were told that this is exactly what we should expect at that point but in my head I was hoping for so much more. I wanted them to tell me he was fixed, that we wouldn't need to worry any longer. His chimerism results were more assuring. He was 100% donor cells for his t-cells and b-cells meaning the transplant had taken and the chemo did what it needed to. They will now draw an immune panel/chimerism every 30 days.
In the next couple weeks we kept increasing the length of our pass. We were now only spending our evenings/sleeping at the hospital. As tough as this was it was so much better then being stuck there 24hrs. Emerson was feeling great and was so happy and "normal" at home. I feel like he learns something new each day and is developing so quickly now. On November 26th Emerson decided it was time he walked on his own :) He had been taking steps alone between us since before his transplant but that evening he started to walk from room to room upstairs all on his own. I can't begin to describe the joy and pride that was oozing out of me. That little boy amazes me so much everyday with his strength and happy-go-lucky demeanour. Things finally started to feel like they were going in the right direction. His bicarb level had been stable in the 20's even with us weaning the length of the infusion. They had come to the conclusion that his kidneys were still under stress from the injury they underwent with the immune suppressant drug in combination with dehydration from his persistent loose stool. Things were falling into place and we began discussing discharge home on oral bicarb. They were still being very cautious with weaning the bicarb and were going at a very slow rate. We were down to a 4 hr infusion and three oral doses. This allows us to spend our nights at home and just come in the morning for the infusion. On Dec 2nd we woke up at 3am to find Emerson had soiled his jammies up his back and down THE ONE SLEEVE that had his PICC line....... I still to this day do not understand how this happened or how we can have such bad luck. We called the Unit and they walked us through a sterile cap change at home. I barley slept that night re-living our last septic attack and hospital stay. I felt like crawling into a hole. I couldn't go through that again. Em woke up in a good mood and we went in for our bicarb infusion the next day. The nurse drew off a little extra waste that morning as a precaution and everything seemed to be ok. We went home and Em had his nap. He woke up super flushed and without fail he had a temp. I was dizzy with worry and hatred at myself for doing the cap change.We brought him in and the nurse took his temp and got 37.4 (normal). I started sobbing.. I couldn't believe it. I still had an awful feeling that something wasn't right. We stayed a few hours and he had a low grade temp of 37.6 but nothing over 38. We went home and tried not worrying too much. Em went down at his usual time but woke up at 10:30 pm and he felt really warm. So off to the hospital we went. He was febrile this time. They drew blood cultures and began him on antibiotics. No one slept that night as Em was crying in pain and shaking. We were re-living our worst nightmare. Em was septic for the second time in months. I still don't understand what we did to deserve the hell we've been through. I don't believe everything happens for a reason, there is no reason on earth good enough that this sweet boy has had to endure what he's been through. The next morning (Friday) Ems blood pressure was super low. They gave two fluid boluses and consulted the STEP team. Things were not looking good and we were told Em was one bad blood pressure away from being admitted to the ICU where he'd be sedated, intubated, and given an arterial line. This would be so they could administer medications that would help his blood pressure. On top of everything else, that afternoon Emerson's PICC line stopped working.. They still don't know why but think it might have been from the bicarb reacting with one of the antibiotics given even though they were extremely careful.. So Emerson was now septic with no IV access.... Em was poked too many times for blood work and they needed an IV asap. I requested that Anesthesia come to place the line because of the trouble we've had in the past. They came and got the line the first try, THANK YOU! Things started to stabilize a bit more. His pressure was still on the lower side but he had perked up and was wanting to sit and play. We narrowly avoided the ICU and Em was back to himself the next morning. The antibiotics did their job and cleared Ems blood quickly of the bacteria and he was feeling better. The IV that was placed was holding strong but this meant Em still needed to be poked peripherally everyday for blood work. We needed a central line, bad. Monday came and they had a cancellation in the operating room. Em was able to get in for another PICC line to be placed! AND not be red listed!!! The line was placed without complication and the oncologist was so happy with the way things were looking that he allowed us to go home on an overnight pass! Things had gone from horrific potentially ICU admission to back on pass in 3 days. It was truly a miracle.
We were home for Christmas :) JPs entire family was able to fly in and spend a few days with us. Emerson was over the moon excited to be around his aunties. It was so so nice to have everyone together. My mom and family came up just after Christmas to spend time with Em. The love was non-stop and Em could not have been happier. As lovely as the holidays were I felt a sense of relief as they ended. I said goodbye to the most horrible year and welcomed 2016 with open arms. This year HAS to be better then the last.
They had drawn off Emerson's 4 month post BMT immune panel/chimerism while we were still in hospital and we received the results a bit ago. Emerson FINALLY HAS T-CELLS!! (que happy dance) His CD4 count (the immune cells that he needs to fight viruses) at 100 days were 40 and only one month later were up to 270! (normal is 400-1600). We had noticed Em's nose wasn't runny any more. They did a swab and it came back negative. He cleared his cold viruses!!!! He was cold free for the first time since we was months old!!! I feel like things may finally turn a corner. Now all we need is the damn noro-virus to scram.
With this good news came bad news. They informed us that his liver enzymes (a marker that the liver is under stress) were climbing. Normal is under 50 and his were in the 500's. These can climb for many reasons. In Ems case it could be a virus or GVHD of the liver. Both of these causes should manifest differently though. If it were viral you'd expect him to show symptoms of being ill, fever ect. and if it were GVHD his bilirubin would also be elevated but his was normal. They did an ultrasound of his liver and it came back normal. They then sent off every viral study they could think of as well as a few other liver markers. So far everything has come back negative or normal. They are completely clueless as to what could be making his liver so upset. His numbers now are around 1000. Our only option now is to have another surgery and do a liver biopsy. This will tell us if it is a virus we haven't been able to test or if it is an unusual case of GVHD. The operation is tentatively scheduled for Friday or Monday. This will mean another night in the hospital but hopefully it will also mean an answer. The constant stress and worry we've been living under has been unbearable. I dream of the day where we can stop worrying over every little thing and just enjoy life with our little boy.
I want to thank our families for helping us survive the last few months. We would not have been able to get through the last while without you. Whether it be putting your own lives on hold so you can come stay with us while admitted in hospital so JP could work to the emotional support you've all provided. We are so luck to have you all.
Thank you for everyones support and prayers. Please say a little one that we find some answers to Ems elevated liver enzymes and for his cells to grow, grow, grow!
D,xo
Wednesday, 30 September 2015
Quick Update.
Quick Update-
Emerson spent a total of 20 hrs NPO waiting for his turn to go into the OR. It was 8pm by the time we were called down and we were all exhausted & cranky. At 9:20pm the Surgeon came out and said the procedure went well and Emerson was in the recovery room. They had removed his Broviak line and placed a PICC line (peripherally inserted central line). Close to 10pm a nurse walks through the doors. I thought she'd be telling me I could go in and see my baby. Instead she tells me Unit 1 is looking for us.. They had let Emerson wake up without us there and taken him back to his room where no one was waiting for him. I was LIVID. On top of my rage, Emie's poor eye lids got really swollen from fluids and he could hardly open them. It was a late, stressful night for us all and Emerson didn't sleep the best. The next morning went fairly routinely. His eyelids were still extremely swollen but we were told they should go down throughout the day. His stooling had begun improving a bit and they were not giving him as much replacement fluid. At about 2pm Emerson's pumps started beeping "downstream occlusion" which was weird because the flow had been perfect minutes earlier. The nurse came in and couldn't flush or draw back on his line. She thought maybe he'd clotted so she went to ask someone about potentially TPA'ing (clot busting med) his line. JP was asking the nurse if a clot would be sudden because our experiences in the past had not been like this. She said no and left the room. A short while later our nurse and the charge nurse came into our room. The charge nurse said that the sudden occlusion triggered a red flag for her. They went back and looked at what infusions Emerson had been receiving and noticed that our nurse had made a MAJOR error. She had been running two incompatible products through his brand new line and it was now completely blocked with crystallized medication....... I cannot begin to describe the anger, pain, hatred, sadness, and helplessness I feel. I understand that everyone is human and errors happen.. but it is hard to accept when that error happens on your baby. We had just been through the ringer with trying to get this line removed and a new one placed and not even 24 hrs later she ruins it.. I am still at a loss for words and I don't know if I will ever be able to look this woman in the face. They tried putting hydrochloric acid in the line to bust up the blockage and let it sit for 2 hrs. It didn't work.. So we tried once more letting it sit for 4 hrs. In the meantime we had to give Emie his meds he'd missed getting through his IV so at 11pm we had to wake him up to give him oral cyclosporine and his antibiotic. Then at 2 am two nurses and the bedside physician came in and turned the brightest lights on to take out the HCL acid. Again, it was unsuccessful.. My heart is still in a million little pieces. My poor babe doesn't deserve this.. They then came and woke me up at 3 am telling me I wasn't able to feed E past 6am because they wanted to leave him NPO incase he was going back into the OR.
So today started off really, really bad. The Oncologist came into our room before rounds with a bunch of different plans all depending on what the Infectious Disease (ID) Drs had to say.. He told us we may be going in to the OR today to get another Broviak line (tunnelled double lumen central line) put in or he wanted to look further into what was causing Es fevers by sending him to get a CT scan to rule out a fungal infection. Both involved fasting and poking.. two of my least favourite things. So we sat and waited for IDs phone call.
We were called into rounds still very unsure of where the day would take us. GOOD NEWS. Finally! The ID Drs did not think it would be safe to put a new line in until Emie has been afebrile for 48hrs bringing us to Friday. Our Oncologist was okay with this and also said we could potentially get a scheduled time and not be put on the red list. He also said they told him E did not need a CT scan because the likelihood of it being fungal were slim and he didn't need to be exposed to radiation. We also decided Emie didn't need IV access until Friday because his stooling/fluid needs (so far) have gone down and he's able to take all of his meds by mouth. This may change depending on how his pooping goes. So we spent the day not hooked up to anything! They came and removed the PICC line in our room without complications. Today is the first day E has been tubeless in 5 months. Emie also hasn't had a fever all day! Which meant we were able to spend an hour outside. It was absolutely glorious :)
So now we wait and hope Emie doesn't require an IV before Friday. They told us they hope to get him in for his line placement at 2pm. We are praying for no fevers, a quick OR visit, and that we get to go home in the near future.
Thank you to everyone who gave words of encouragement and sent prayers/positive vibes our way. They mean the world to us!
D
Emerson spent a total of 20 hrs NPO waiting for his turn to go into the OR. It was 8pm by the time we were called down and we were all exhausted & cranky. At 9:20pm the Surgeon came out and said the procedure went well and Emerson was in the recovery room. They had removed his Broviak line and placed a PICC line (peripherally inserted central line). Close to 10pm a nurse walks through the doors. I thought she'd be telling me I could go in and see my baby. Instead she tells me Unit 1 is looking for us.. They had let Emerson wake up without us there and taken him back to his room where no one was waiting for him. I was LIVID. On top of my rage, Emie's poor eye lids got really swollen from fluids and he could hardly open them. It was a late, stressful night for us all and Emerson didn't sleep the best. The next morning went fairly routinely. His eyelids were still extremely swollen but we were told they should go down throughout the day. His stooling had begun improving a bit and they were not giving him as much replacement fluid. At about 2pm Emerson's pumps started beeping "downstream occlusion" which was weird because the flow had been perfect minutes earlier. The nurse came in and couldn't flush or draw back on his line. She thought maybe he'd clotted so she went to ask someone about potentially TPA'ing (clot busting med) his line. JP was asking the nurse if a clot would be sudden because our experiences in the past had not been like this. She said no and left the room. A short while later our nurse and the charge nurse came into our room. The charge nurse said that the sudden occlusion triggered a red flag for her. They went back and looked at what infusions Emerson had been receiving and noticed that our nurse had made a MAJOR error. She had been running two incompatible products through his brand new line and it was now completely blocked with crystallized medication....... I cannot begin to describe the anger, pain, hatred, sadness, and helplessness I feel. I understand that everyone is human and errors happen.. but it is hard to accept when that error happens on your baby. We had just been through the ringer with trying to get this line removed and a new one placed and not even 24 hrs later she ruins it.. I am still at a loss for words and I don't know if I will ever be able to look this woman in the face. They tried putting hydrochloric acid in the line to bust up the blockage and let it sit for 2 hrs. It didn't work.. So we tried once more letting it sit for 4 hrs. In the meantime we had to give Emie his meds he'd missed getting through his IV so at 11pm we had to wake him up to give him oral cyclosporine and his antibiotic. Then at 2 am two nurses and the bedside physician came in and turned the brightest lights on to take out the HCL acid. Again, it was unsuccessful.. My heart is still in a million little pieces. My poor babe doesn't deserve this.. They then came and woke me up at 3 am telling me I wasn't able to feed E past 6am because they wanted to leave him NPO incase he was going back into the OR.
So today started off really, really bad. The Oncologist came into our room before rounds with a bunch of different plans all depending on what the Infectious Disease (ID) Drs had to say.. He told us we may be going in to the OR today to get another Broviak line (tunnelled double lumen central line) put in or he wanted to look further into what was causing Es fevers by sending him to get a CT scan to rule out a fungal infection. Both involved fasting and poking.. two of my least favourite things. So we sat and waited for IDs phone call.
We were called into rounds still very unsure of where the day would take us. GOOD NEWS. Finally! The ID Drs did not think it would be safe to put a new line in until Emie has been afebrile for 48hrs bringing us to Friday. Our Oncologist was okay with this and also said we could potentially get a scheduled time and not be put on the red list. He also said they told him E did not need a CT scan because the likelihood of it being fungal were slim and he didn't need to be exposed to radiation. We also decided Emie didn't need IV access until Friday because his stooling/fluid needs (so far) have gone down and he's able to take all of his meds by mouth. This may change depending on how his pooping goes. So we spent the day not hooked up to anything! They came and removed the PICC line in our room without complications. Today is the first day E has been tubeless in 5 months. Emie also hasn't had a fever all day! Which meant we were able to spend an hour outside. It was absolutely glorious :)
So now we wait and hope Emie doesn't require an IV before Friday. They told us they hope to get him in for his line placement at 2pm. We are praying for no fevers, a quick OR visit, and that we get to go home in the near future.
Thank you to everyone who gave words of encouragement and sent prayers/positive vibes our way. They mean the world to us!
D
Monday, 28 September 2015
Deja vu
We were warned when Emerson was discharged on Aug 25th (Day +18 post transplant) to expect to be back in for a few bumps along the way. That being said, I didn't expect our first bump to be so soon..
Our first days home were amazing. The second we walked through our doors at home Emerson was more himself. His energy level was through the roof and he was so much more verbal/chatty. It was so so good to see him so happy and "healthy". We visited the Clinic a couple days after being home for a checkup and routine blood work. They noticed his cyclosporine (an immune suppressant drug to prevent graft vs host disease) levels hd fallen. Simple fix- we increased his dose. A couple days later we went in to check the levels and again they were dropping even with the increased dose. They increased the dose again. At this point he was taking the same amount as some of their larger teenage patients. It was getting harder and harder to make him take the med. Its not water soluble so they have to mix it in fish oil and the taste is horrendous. Most kids need gravol or another antiemetic before taking the cyclosporine because it is so putrid. We went in to check his levels once more and they had not budged.. Something wasn't right. With this huge dose of cyclosporine we noticed his stool begin to loosen also. The doctors made the decision to admit us back to Unit 1 on Sept 4th just so he could have the cyclosporine IV to get his levels back up. This meant packing up our day bag, all his meds, and enough toys every morning from 8-11am then go home and have to do it again for 8-11pm. It was exhausting. On tuesday morning while we were in getting his infusion Emerson spiked a fever. My heart sank and the lump in my throat was throbbing fiercely. I knew what the fever was from.. The night before Emerson had a stool that covered him from head to toe at 3am. We stripped him down and noticed that his central line caps had also gotten covered in poo. We cleaned them well and replaced the caps. Unfortunately one bacteria particle is all Emerson needs to get infected. The nurse drew blood cultures from both of his ports and they started him on heavy hitter antibiotics. 9 hours after the cultures were sent gram negative and gram positive bacteria had begun growing. We later found out he was positive for 3 separate bacteria.
The next morning Emie woke up okay but by the time JP had gotten to our room E took a hard turn south. He still had a fever and began shaking uncontrollably. He was extremely pale and tachycradic. We paged the doctors in stat. Emerson was having in septic shock. It was absolutely terrifying. The whole thing only lasted a couple of hours and then he fell asleep. The sensitivities (what antibiotic kills the bacteria) came back and we were able to switch Emie from 3 to 1 antibiotic. His fevers went down and he started to perk up as the days went on. He had repeat blood cultures drawn and finally on the third day they came back negative meaning that we were successfully treating the bugs.
Throughout all of this Emerson's stooling increased and became very loose. The doctors started to worry that it was GVHD of his intestines so they made Emie NPO (only able to drink clear fluids). If he did have GVHD his stooling would not improve with NPO. This caused me MAJOR stress.. My maternal instinct to want to nurture my babe was raging and seeing him screaming from hunger is the absolute worst. The next day they started TPN (nutrition through his central line). It helped keep him a bit more comfortable and less hungry. It was also reassuring knowing he was getting adequate nutrition and we were giving his guts a break. He was on the TPN for a total of 5 days. His stooling DID improve and they finally linked his loose stools to the antibiotic they had started.. This meant that we did not have to send him to the OR for a gastrointestinal scope and biopsy to ultimately rule out GVHD. It was a relief to not have to worry about GVHD on top of everything else and I thought it would be a simple fix to switch the antibiotics. However, there was not another antibiotic that would cover all 3 bacteria well enough and they take bacteriemia very seriously around here. So we were stuck with poop, lots and lots of poop.
Emerson was in a great mood once he started feeling better. He was very active and we spent a lot of time helping him walk around the room and follow him with his IV pole. His stooling was improving even on the antibiotic and we began talking about discharge. We also started him on oral Tacrolimus (a different immune suppressant). Its a very small volume compared to his cyclosporine dose and is water soluble so can be made to taste WAY better. Emerson even asks for more when he's finished! His first levels came back a little low so they increased the dose a very small amount. They repeated the levels a couple days after and they were where they needed to be! He's absorbing!! Finally we could see the light at the end of the tunnel.
2 days before the end of his 14 day course of antibiotics was scheduled to end, Emerson spiked another fever.. It was deja vu all over again. They drew cultures from his line, got the lab in to poke his arm, and started him on an additional antibiotic. We were back at square one.. and I was completely, utterly defeated. I have found myself saying "I can't do this" more times then Id like to admit. But theres no "not being able to" because Emerson needs us and so we just keep on. Even though we feel like we cannot possibly take any more hits, any more pressure, any more pain, we hold our heads up and keep going.. 13 hours later a gram neg bacteria began growing from his line that resembled one from his initial infection meaning his line had infected with bacteria that was getting pushed into his bloodstream every time we uses it. They told us we would be removing his line, he'd need multiple peripheral pokes and to keep an IV in place for multiple days until they were certain his blood was cleared of bacteria and they could put in a new line. It was a lot to take in and I was emotionally unstable. I spent the night feeling very sorry for myself but the next morning had my first positive thought. I was going to ask for an IVAD port to be placed instead of another Broviak line. He may have needed a port placed later on as they are much safer while at home and keep infection rates down. Instead of having his lines hanging out of his chest there will be a little button right under his skin that they can connect a line to, draw off blood, and give infusions. It would be so nice for when we are at home because we would not have daily line care, dressing changes, and he could have a bath without having to tape up his entire chest! The downside to having a port placed so early post transplant is that he is still getting weekly blood draws for another two months. This would mean a peripheral poke every time which is painful. We had discussed it and it sounded like that was the plan moving forward. Until the culture came back the next day as a completely new bacteria.. The plan I had brought myself to terms with was thrown out the window. There was now hope we may be able to salvage the line!
He was started on a new antibiotic and plans were made to ethanol lock his lumens (injecting alcohol into one line at a time and locking it in place for 24hrs) to kill any bacteria that might be growing inside the line. We started with his small blue lumen first. When we tried to get it out the next day the lumen was plugged... we couldn't get anything out. They made the decision to just push the ethanol into Emerson. It wasn't ideal but the amount was so small it shouldn't have an effect on him. They did blood sugar levels every 5 mins for 15 minutes just to be safe. He was okay and they were able to draw back blood. They ethanol locked his other lumen and began infusing through his small blue lumen. About an hour in, both channels on the triple pump and the syringe pump started screaming "downstream occlusion". His line had clotted off again. They took the ethanol out of the yellow lumen and TPA'd (clot busting drug) his blue lumen. The next day they drew a repeat set of blood cultures because Emerson was still febrile but acting like his normal self. The TPA was a success and both his lumens are working as they should now. His blood cultures also came back negative! So the only positive cultures he had was from the day he spiked his fever. The blood they drew from his arm also came back negative even from the initial positive making us believe the line was infected.
It has now been 8 days with an ongoing fever and negative blood cultures. They have no idea what is causing the fever. His stooling also increased AGAIN.. (most likely from the new antibiotics he's on) But of course it happened over the weekend and a new doctor was looking after us and brought up GVHD and wanted to make him NPO again.. JP had to warn me to cool it (I think he could tell I was about to go bananas). She agreed to not make him NPO but wanted to keep a close eye on his stooling. The only way to figure out where this fever is coming from is to remove his line. So we sit here and wait to be called into the OR. Emerson has been NPO since last night and is handling it like a beauty. I anxiously sit here and wait.. They can't give us a time but told us it would be in the early afternoon. I sit and wait to hand my baby over once again to the nurses, RT, and doctors in the OR.
They plan to take out his line and we're hoping they will insert a PIC line (peripheral central line) or at least a longer, large bore IV that can be sutured in place. This will make the next few days easier on us with not having to worry about Emerson ripping out his IV and him needing to get poked a million times. Then once we have a few days of negative cultures we can discuss potentially going back into the OR to get a port placed.
In the meantime through all this we have reached day 52 post transplant. Nothing that had happened should affect his new immune system growing inside him. His 21 day chimerism test showed of the immune cells he has 100% are from the donor ( not just his old immune cells coming back), which is as good as we could hope and our immunologist has told us he's doing as well as could be expected on that front.
Thank you to everyone for the continued support. Please pray for strength for JP and myself to get over this road bump and for a smooth OR trip for Emerson.
We WILL get through this,
D
Our first days home were amazing. The second we walked through our doors at home Emerson was more himself. His energy level was through the roof and he was so much more verbal/chatty. It was so so good to see him so happy and "healthy". We visited the Clinic a couple days after being home for a checkup and routine blood work. They noticed his cyclosporine (an immune suppressant drug to prevent graft vs host disease) levels hd fallen. Simple fix- we increased his dose. A couple days later we went in to check the levels and again they were dropping even with the increased dose. They increased the dose again. At this point he was taking the same amount as some of their larger teenage patients. It was getting harder and harder to make him take the med. Its not water soluble so they have to mix it in fish oil and the taste is horrendous. Most kids need gravol or another antiemetic before taking the cyclosporine because it is so putrid. We went in to check his levels once more and they had not budged.. Something wasn't right. With this huge dose of cyclosporine we noticed his stool begin to loosen also. The doctors made the decision to admit us back to Unit 1 on Sept 4th just so he could have the cyclosporine IV to get his levels back up. This meant packing up our day bag, all his meds, and enough toys every morning from 8-11am then go home and have to do it again for 8-11pm. It was exhausting. On tuesday morning while we were in getting his infusion Emerson spiked a fever. My heart sank and the lump in my throat was throbbing fiercely. I knew what the fever was from.. The night before Emerson had a stool that covered him from head to toe at 3am. We stripped him down and noticed that his central line caps had also gotten covered in poo. We cleaned them well and replaced the caps. Unfortunately one bacteria particle is all Emerson needs to get infected. The nurse drew blood cultures from both of his ports and they started him on heavy hitter antibiotics. 9 hours after the cultures were sent gram negative and gram positive bacteria had begun growing. We later found out he was positive for 3 separate bacteria.
The next morning Emie woke up okay but by the time JP had gotten to our room E took a hard turn south. He still had a fever and began shaking uncontrollably. He was extremely pale and tachycradic. We paged the doctors in stat. Emerson was having in septic shock. It was absolutely terrifying. The whole thing only lasted a couple of hours and then he fell asleep. The sensitivities (what antibiotic kills the bacteria) came back and we were able to switch Emie from 3 to 1 antibiotic. His fevers went down and he started to perk up as the days went on. He had repeat blood cultures drawn and finally on the third day they came back negative meaning that we were successfully treating the bugs.
Throughout all of this Emerson's stooling increased and became very loose. The doctors started to worry that it was GVHD of his intestines so they made Emie NPO (only able to drink clear fluids). If he did have GVHD his stooling would not improve with NPO. This caused me MAJOR stress.. My maternal instinct to want to nurture my babe was raging and seeing him screaming from hunger is the absolute worst. The next day they started TPN (nutrition through his central line). It helped keep him a bit more comfortable and less hungry. It was also reassuring knowing he was getting adequate nutrition and we were giving his guts a break. He was on the TPN for a total of 5 days. His stooling DID improve and they finally linked his loose stools to the antibiotic they had started.. This meant that we did not have to send him to the OR for a gastrointestinal scope and biopsy to ultimately rule out GVHD. It was a relief to not have to worry about GVHD on top of everything else and I thought it would be a simple fix to switch the antibiotics. However, there was not another antibiotic that would cover all 3 bacteria well enough and they take bacteriemia very seriously around here. So we were stuck with poop, lots and lots of poop.
Emerson was in a great mood once he started feeling better. He was very active and we spent a lot of time helping him walk around the room and follow him with his IV pole. His stooling was improving even on the antibiotic and we began talking about discharge. We also started him on oral Tacrolimus (a different immune suppressant). Its a very small volume compared to his cyclosporine dose and is water soluble so can be made to taste WAY better. Emerson even asks for more when he's finished! His first levels came back a little low so they increased the dose a very small amount. They repeated the levels a couple days after and they were where they needed to be! He's absorbing!! Finally we could see the light at the end of the tunnel.
2 days before the end of his 14 day course of antibiotics was scheduled to end, Emerson spiked another fever.. It was deja vu all over again. They drew cultures from his line, got the lab in to poke his arm, and started him on an additional antibiotic. We were back at square one.. and I was completely, utterly defeated. I have found myself saying "I can't do this" more times then Id like to admit. But theres no "not being able to" because Emerson needs us and so we just keep on. Even though we feel like we cannot possibly take any more hits, any more pressure, any more pain, we hold our heads up and keep going.. 13 hours later a gram neg bacteria began growing from his line that resembled one from his initial infection meaning his line had infected with bacteria that was getting pushed into his bloodstream every time we uses it. They told us we would be removing his line, he'd need multiple peripheral pokes and to keep an IV in place for multiple days until they were certain his blood was cleared of bacteria and they could put in a new line. It was a lot to take in and I was emotionally unstable. I spent the night feeling very sorry for myself but the next morning had my first positive thought. I was going to ask for an IVAD port to be placed instead of another Broviak line. He may have needed a port placed later on as they are much safer while at home and keep infection rates down. Instead of having his lines hanging out of his chest there will be a little button right under his skin that they can connect a line to, draw off blood, and give infusions. It would be so nice for when we are at home because we would not have daily line care, dressing changes, and he could have a bath without having to tape up his entire chest! The downside to having a port placed so early post transplant is that he is still getting weekly blood draws for another two months. This would mean a peripheral poke every time which is painful. We had discussed it and it sounded like that was the plan moving forward. Until the culture came back the next day as a completely new bacteria.. The plan I had brought myself to terms with was thrown out the window. There was now hope we may be able to salvage the line!
He was started on a new antibiotic and plans were made to ethanol lock his lumens (injecting alcohol into one line at a time and locking it in place for 24hrs) to kill any bacteria that might be growing inside the line. We started with his small blue lumen first. When we tried to get it out the next day the lumen was plugged... we couldn't get anything out. They made the decision to just push the ethanol into Emerson. It wasn't ideal but the amount was so small it shouldn't have an effect on him. They did blood sugar levels every 5 mins for 15 minutes just to be safe. He was okay and they were able to draw back blood. They ethanol locked his other lumen and began infusing through his small blue lumen. About an hour in, both channels on the triple pump and the syringe pump started screaming "downstream occlusion". His line had clotted off again. They took the ethanol out of the yellow lumen and TPA'd (clot busting drug) his blue lumen. The next day they drew a repeat set of blood cultures because Emerson was still febrile but acting like his normal self. The TPA was a success and both his lumens are working as they should now. His blood cultures also came back negative! So the only positive cultures he had was from the day he spiked his fever. The blood they drew from his arm also came back negative even from the initial positive making us believe the line was infected.
It has now been 8 days with an ongoing fever and negative blood cultures. They have no idea what is causing the fever. His stooling also increased AGAIN.. (most likely from the new antibiotics he's on) But of course it happened over the weekend and a new doctor was looking after us and brought up GVHD and wanted to make him NPO again.. JP had to warn me to cool it (I think he could tell I was about to go bananas). She agreed to not make him NPO but wanted to keep a close eye on his stooling. The only way to figure out where this fever is coming from is to remove his line. So we sit here and wait to be called into the OR. Emerson has been NPO since last night and is handling it like a beauty. I anxiously sit here and wait.. They can't give us a time but told us it would be in the early afternoon. I sit and wait to hand my baby over once again to the nurses, RT, and doctors in the OR.
They plan to take out his line and we're hoping they will insert a PIC line (peripheral central line) or at least a longer, large bore IV that can be sutured in place. This will make the next few days easier on us with not having to worry about Emerson ripping out his IV and him needing to get poked a million times. Then once we have a few days of negative cultures we can discuss potentially going back into the OR to get a port placed.
In the meantime through all this we have reached day 52 post transplant. Nothing that had happened should affect his new immune system growing inside him. His 21 day chimerism test showed of the immune cells he has 100% are from the donor ( not just his old immune cells coming back), which is as good as we could hope and our immunologist has told us he's doing as well as could be expected on that front.
Thank you to everyone for the continued support. Please pray for strength for JP and myself to get over this road bump and for a smooth OR trip for Emerson.
We WILL get through this,
D
Monday, 24 August 2015
Grow Cells GROW! (Day -7 to Day +15)
I am still trying to process the fact that we are 15 DAYS POST transplant. What a journey it has been so far..
The days leading up to transplant
With each new day of chemo we could see Emerson slowly start to lose is "umph". He no longer wanted to stand or even sit on his own. I soaked up every second of cuddles I could. As nice as the cuddles were it was so hard to see the life draining out of him. One of the chemo drugs caused Emerson to break out in a nasty rash which we treated with benadryl. He was nauseous from time to time and all of the medications/ongoing norovirus infection have caused him to have persistent loose stool. Even though Emerson felt pretty lousy he was still in good spirits. His smile is the sweetest thing in this entire world. He barely fussed and was content watching the Bee Movie for the 500th time in a row. On our last day of chemo I received the most thoughtful gift from a dear friend. It was exactly what I needed to push through the next few days. It was filled with all of the "essentials" we would require for the next few days- the last day of chemo, our day of rest, and our "New Life" day. It was seriously the sweetest thing and I will cherish the memory forever. (Thank you, K xo)
E's last dose of chemo!
Our special gift
Exactly what we needed!
New Life Day!
We had a pretty low key morning. We were all anxiously awaiting any news from the lab about the stem cells (quality/quantity) and when we would start the transfusion. We were told that the quality was extremely good but there were quite a bit of the donors RBCs that they were not able to remove. They do not screen donors for blood type and Emersons donor was not a match to him. This meant that to be safe we would have to give the stem cells in two batches to reduce the total number of RBCs in the unit. Shortly after lunch, our room filled with nurses and equipment needed for the transplant. You could feel the excitement of our family in the air. The first cells entered Emies body at 2:16 pm. It is mind blowing to think that such a small amount of cells can do such a big job, the total quantity infused was only 30 mL of stem cells! They are transfused into Emies blood stream and know exactly where to go and what to do. Those cells will start dividing and growing creating an entirely new immune system. What an extraordinary process. Emerson tolerated the transfusion well and there were no complications. We ended the day with a nice supper to celebrate what an extraordinary day it had been. Emerson now has a second birth day :) They started the second transfusion early the next morning, again, with no complications.
All "dressed" up for his big day :)
"No more photos mom"-E
New life entering his body
The perfect end to our day
The days following
The bad: The side effects from the week of chemo slowly began showing up. Emerson has not left our arms. Some days even lifting his head up has been too much. He developed blisters on his bottom that have been a nightmare. We have a whole pharmacy worth of things we need to put on his bottom to keep it safe from infection until his cells grow enough to heal it. On day +8 he began losing his hair. It has only thinned so far and he still has a pretty good chunk on the top of his head :) He has needed two RBC transfusions and one platelet transfusion which he had an allergic reaction to.
Shedding baby hairs everywhere
The good: He has only required tylenol for pain management! He has also not required any additional nutritional supplementation. We were told that 99% of children require some from either an NG tube or TPA (nutrition through his central line). I was so nervous of Emerson potentially needing these because I have no experience with them. So for him to keep eating like a champ has me singing Hallelujah. He also did not get any mouth/throat/intestinal mucositis! After transplant our dr also told us we were allowed on "pass" for hour long walks outside. It had been 19 days that Emie had not left his room. We couldn't wipe the smile off his (or my) face the whole hour!
Looking for les petits oiseaux
On our first walk to the duck pond
Pure bliss
This wittle face!
Over the last few days Emerson has officially "engrafted". This is incredible news! It means the cells have made his body their home and are GROWING! His white blood cells and AGC (total neutrophil count) have been in the normal range for over three days and they have stopped giving him GCSF ( a drug to stimulate his body to pump out immune cells). As great as this all sounds we are in no way out of the woods. Now we have to be extremely cautious in looking for any signs of acute graft vs host disease (GVHD). This can show up in his skin (rash), liver (bilirubin levels), and intestine (persistent diarrhea). These can show up any time in the next 100 days. Emerson is on a medication called cyclosporin which is an immune suppressant and helps prevent GVHD. It is not a very pleasant drug and makes E feel pretty lousy the entire time its infusing (2 hrs twice a day). We have been trying to get it to a "therapeutic level" in his body. This means they give an amount and test to see if the level is where they need it to be with blood tests. If its too low they increase the dose and vice versa. They overshot the amount they needed to increase Es dose a couple days ago resulting in his body having too high of a level. He has not tolerated this well at all. He has broken out into large red blotches that fade and appear in a new spots. He's been fussy and lethargic. There is also nothing we can do but make him comfortable until his body metabolizes the drug down to where it needs to be. Aside from that, Emerson is doing extremely well. They are switching most of his medications over to oral doses we can go home on. The last of these switched will hopefully be Monday with the cyclosporin as long as we can get the levels where we need them. If all goes to plan we should be HOME mid next week!!!! PLEASE GOD let us be home next week!! Once home we will be under the same isolation as pre-admission and we will need to make multiple trips a week back up to the hospital for clinic visits but at least we will be home.
REUNITED and it feels sooo good! - Our puppies were able to come home for a short bit while Emie was admitted to the hospital. We walked them up to the duck pond so Emie could see them. He was SO excited :)
The days leading up to transplant
With each new day of chemo we could see Emerson slowly start to lose is "umph". He no longer wanted to stand or even sit on his own. I soaked up every second of cuddles I could. As nice as the cuddles were it was so hard to see the life draining out of him. One of the chemo drugs caused Emerson to break out in a nasty rash which we treated with benadryl. He was nauseous from time to time and all of the medications/ongoing norovirus infection have caused him to have persistent loose stool. Even though Emerson felt pretty lousy he was still in good spirits. His smile is the sweetest thing in this entire world. He barely fussed and was content watching the Bee Movie for the 500th time in a row. On our last day of chemo I received the most thoughtful gift from a dear friend. It was exactly what I needed to push through the next few days. It was filled with all of the "essentials" we would require for the next few days- the last day of chemo, our day of rest, and our "New Life" day. It was seriously the sweetest thing and I will cherish the memory forever. (Thank you, K xo)
(Mondayzzzzz)
My boys :)
Serious sweetness
New Life Day!
We had a pretty low key morning. We were all anxiously awaiting any news from the lab about the stem cells (quality/quantity) and when we would start the transfusion. We were told that the quality was extremely good but there were quite a bit of the donors RBCs that they were not able to remove. They do not screen donors for blood type and Emersons donor was not a match to him. This meant that to be safe we would have to give the stem cells in two batches to reduce the total number of RBCs in the unit. Shortly after lunch, our room filled with nurses and equipment needed for the transplant. You could feel the excitement of our family in the air. The first cells entered Emies body at 2:16 pm. It is mind blowing to think that such a small amount of cells can do such a big job, the total quantity infused was only 30 mL of stem cells! They are transfused into Emies blood stream and know exactly where to go and what to do. Those cells will start dividing and growing creating an entirely new immune system. What an extraordinary process. Emerson tolerated the transfusion well and there were no complications. We ended the day with a nice supper to celebrate what an extraordinary day it had been. Emerson now has a second birth day :) They started the second transfusion early the next morning, again, with no complications.
lazy morning watching flix
The box carrying Emies new immune system
<3
The days following
The bad: The side effects from the week of chemo slowly began showing up. Emerson has not left our arms. Some days even lifting his head up has been too much. He developed blisters on his bottom that have been a nightmare. We have a whole pharmacy worth of things we need to put on his bottom to keep it safe from infection until his cells grow enough to heal it. On day +8 he began losing his hair. It has only thinned so far and he still has a pretty good chunk on the top of his head :) He has needed two RBC transfusions and one platelet transfusion which he had an allergic reaction to.
The rash that covered his back, shoulders, and face
The good: He has only required tylenol for pain management! He has also not required any additional nutritional supplementation. We were told that 99% of children require some from either an NG tube or TPA (nutrition through his central line). I was so nervous of Emerson potentially needing these because I have no experience with them. So for him to keep eating like a champ has me singing Hallelujah. He also did not get any mouth/throat/intestinal mucositis! After transplant our dr also told us we were allowed on "pass" for hour long walks outside. It had been 19 days that Emie had not left his room. We couldn't wipe the smile off his (or my) face the whole hour!
That smile melts me
Soo HAPPY!
Over the last few days Emerson has officially "engrafted". This is incredible news! It means the cells have made his body their home and are GROWING! His white blood cells and AGC (total neutrophil count) have been in the normal range for over three days and they have stopped giving him GCSF ( a drug to stimulate his body to pump out immune cells). As great as this all sounds we are in no way out of the woods. Now we have to be extremely cautious in looking for any signs of acute graft vs host disease (GVHD). This can show up in his skin (rash), liver (bilirubin levels), and intestine (persistent diarrhea). These can show up any time in the next 100 days. Emerson is on a medication called cyclosporin which is an immune suppressant and helps prevent GVHD. It is not a very pleasant drug and makes E feel pretty lousy the entire time its infusing (2 hrs twice a day). We have been trying to get it to a "therapeutic level" in his body. This means they give an amount and test to see if the level is where they need it to be with blood tests. If its too low they increase the dose and vice versa. They overshot the amount they needed to increase Es dose a couple days ago resulting in his body having too high of a level. He has not tolerated this well at all. He has broken out into large red blotches that fade and appear in a new spots. He's been fussy and lethargic. There is also nothing we can do but make him comfortable until his body metabolizes the drug down to where it needs to be. Aside from that, Emerson is doing extremely well. They are switching most of his medications over to oral doses we can go home on. The last of these switched will hopefully be Monday with the cyclosporin as long as we can get the levels where we need them. If all goes to plan we should be HOME mid next week!!!! PLEASE GOD let us be home next week!! Once home we will be under the same isolation as pre-admission and we will need to make multiple trips a week back up to the hospital for clinic visits but at least we will be home.
With each new day we are one step closer. Closer to discharge, closer to having our fur babies home for good, closer to being able to get aunty/uncle hugs, closer to playing with friends, closer to having a working immune system.
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