Good morning all! It is a beautiful day in Seattle and Oliver is doing well, he is a good little sleeper and an excellent snuggler! We went to the lab at the hospital this morning to have blood drawn for his blood counts. His platelets were good (11,000) but his hematocrit was low so we are going back in an hour to have a blood transfusion. Fortunatley for Oliver his PICC line prevents him from having to get poked during these draws and transfusions-so he doesn't even notice they are happening. He curls up blissfully in our arms and soaks up all of the attention he gets for being so dang cute! :)
Sean and I are doing well, with the exception of being a little sleep deprived. Oliver has been using the feeding tube a lot the last couple days as he seems to be uncomfortable nursing. We were warned that the chemo might cause some sores in his mouth (similar to canker sores). I wonder if this is happening because he latches on and immediately opens wide and cries. He was also getting frustrated with the pacifier. We switched to a smaller, softer silicone pacifier and he seems to like that better. Poor little guy! Last night Sean dribbled breast milk into his mouth through the syringe so he could taste it...he really seemed to like that :)
We are missing Jack and Jillian so much! It is incredibly difficult to have our family split up like this and we are all eager to be together again. Spring break is right around the corner and if everyone is healthy and Oliver's white blood count isn't too low we will bring Jack and Jillian to Seattle to visit for a couple weeks. In the mean time we enjoy our daily chats!
Well, I have just enough time to get a good cuddle in with the boy before we head back to the hospital. The blood transfusion has to go very slowly through the line, so we will probably be there several hours, but tomorrow the day is ours! No appointments until Monday morning! I do believe we will have a family nap :)
Saturday, March 15, 2014
Thursday, March 13, 2014
March 13 - Adjusting!
We were able to leave the hospital with Oliver for the first time on Tuesday. I'm sorry I have not been keeping you posted, we have been super busy adjusting to having Oliver 'home' with us. Sean and I learned how to check his feeding tube placement, how to use a gravity bag and feed him with it, how to give meds and how to flush and lock his PICC. Everything has to be incredibly clean when you are working with the PICC line since it goes directly to his blood. The first time I flushed the PICC I accidentally pushed a little air into the line. Instinctively, I pulled back on the syringe a little to pull the air back out and to my surprise the line immediately filled with blood! I looked at Sean with shock and horror in my eyes...and he just stared back as if to say 'what the hell just happened!' I finished flushing the line and called the hospital immediately to see exactly how bad I screwed up. The nurse laughed and told me to take a deep breath, that it was not big deal. I think that experience took a good 5 years off my life! Sean flushed the PICC the next time and he did a beautiful job...maybe he should be a PICC nurse!
I spent the afternoon yesterday organizing Oliver's medical supplies. This experience is so different than how I imagined life with our new baby. Sean and I can only laugh when we think back on our fantasies of what life was going to be like when our little bundle of joy arrived! Through all of this Oliver has been a great baby! Seriously, he is really, REALLY good at being a baby. He knows how to get our attention if he needs something. He is nursing well most of the time. If he is too tired he gets frustrated and won't latch, but he is only using the feeding tube a couple times a day. He sleeps good 3-4 hour stretches at night, and if he is dry and full he is content! He still likes being swaddled, but is using the swing less and less. He has only ridden in the car once and he fell asleep immediately. He is a pacifier junkie! Sometimes he is working so hard at sucking on the pacifier you can hear him from across the room! We constantly marvel at how sweet he is!
Oliver had platelets drawn yesterday and today. Yesterday they were at 10,000. Today they were less than 5,000 (the machine doesn't pick up anything less than 5,000) so we are going back to the hospital this afternoon to have a platelet transfusion. His other blood levels look good today. Even though Oliver is out of the hospital we still spend a decent amount of time there. We were there from 9:00am-1:00pm yesterday for labs and to meet with people from Oliver's team. This morning we just had labs but will go back for the transfusion. Tomorrow we have to be there at 7:30am and have a full morning... I don't think much happens on the weekends so we might get a couple of days of down time and then he is scheduled for a dose of chemo on Monday. It is difficult to understand why we are keeping Oliver with us instead of at the hospital when he still needs so much care. We were told that his risk of infection is lower at home (Ronald McDonald house) and that he is more likely to thrive in a home-like environment. I hope that's true!
Sean and I have met a few other families that are staying here-it's nice to visit with other couples who have children going through similar treatments. Almost every kid here has a feeding tube, and PICC lines are common. Everyone is aware of germs, so people already know not to touch Oliver-or even breath on him! It's been nice having other parents to chat with during meals and not worry about having to explain why they can't come within 10 feet of our baby :)
Well, as we settle in I hope to make updating the blog part of our daily routine. Please forgive me if I choose nap over blog! I promise not to go too long without posting! :) :) :) Love and blessings to all!!!
I spent the afternoon yesterday organizing Oliver's medical supplies. This experience is so different than how I imagined life with our new baby. Sean and I can only laugh when we think back on our fantasies of what life was going to be like when our little bundle of joy arrived! Through all of this Oliver has been a great baby! Seriously, he is really, REALLY good at being a baby. He knows how to get our attention if he needs something. He is nursing well most of the time. If he is too tired he gets frustrated and won't latch, but he is only using the feeding tube a couple times a day. He sleeps good 3-4 hour stretches at night, and if he is dry and full he is content! He still likes being swaddled, but is using the swing less and less. He has only ridden in the car once and he fell asleep immediately. He is a pacifier junkie! Sometimes he is working so hard at sucking on the pacifier you can hear him from across the room! We constantly marvel at how sweet he is!
Oliver had platelets drawn yesterday and today. Yesterday they were at 10,000. Today they were less than 5,000 (the machine doesn't pick up anything less than 5,000) so we are going back to the hospital this afternoon to have a platelet transfusion. His other blood levels look good today. Even though Oliver is out of the hospital we still spend a decent amount of time there. We were there from 9:00am-1:00pm yesterday for labs and to meet with people from Oliver's team. This morning we just had labs but will go back for the transfusion. Tomorrow we have to be there at 7:30am and have a full morning... I don't think much happens on the weekends so we might get a couple of days of down time and then he is scheduled for a dose of chemo on Monday. It is difficult to understand why we are keeping Oliver with us instead of at the hospital when he still needs so much care. We were told that his risk of infection is lower at home (Ronald McDonald house) and that he is more likely to thrive in a home-like environment. I hope that's true!
Sean and I have met a few other families that are staying here-it's nice to visit with other couples who have children going through similar treatments. Almost every kid here has a feeding tube, and PICC lines are common. Everyone is aware of germs, so people already know not to touch Oliver-or even breath on him! It's been nice having other parents to chat with during meals and not worry about having to explain why they can't come within 10 feet of our baby :)
Well, as we settle in I hope to make updating the blog part of our daily routine. Please forgive me if I choose nap over blog! I promise not to go too long without posting! :) :) :) Love and blessings to all!!!
Monday, March 10, 2014
March 10 - Last day in Seattle Children's?
We are scheduled to be discharged tomorrow...bittersweet indeed! Sean and I have learned how to flush and care for Oliver's PICC line, how to check his feeding tube placement and how to give his meds. We will be coming to Seattle Children's several times a week for clinic visits to have labs drawn and to receive his chemo infusions. We are happy to get to have a somewhat 'normal' routine with Oliver in a home like setting, but we will miss our nurses here at Seattle Children's. A couple of our primary nurses have come to see Oliver in the cancer care unit. I hate to say it, but we absolutely have our favorites! Oliver had a couple nurses who went above and beyond while he was here...not just for Oliver but for Sean and I. Being on the floor has made us appreciate our NICU nurses even more. That's not to say the nurses on the floor aren't wonderful-they are-but Meg, Susan, Shaune and Sam you girls ROCK! I couldn't imagine going through the last few weeks without nurses like you! If you're reading this I hope you know exactly how much we appreciate the level of care you provided for our precious boy!!!
Oliver's platelets went down a little today (11,000) but all of his other labs look great. He is off the diuretics completely and we are lowering the steroid dose. He is eating almost entirely by nursing and his bili continues to decline. He is definitely aware of the power he has to demand being held, nursed or changed and he takes full advantage! :)
Overall he is getting better. We still don't know why. He still doesn't have a concrete diagnosis. But he is improving...and we couldn't be happier!
Oliver's platelets went down a little today (11,000) but all of his other labs look great. He is off the diuretics completely and we are lowering the steroid dose. He is eating almost entirely by nursing and his bili continues to decline. He is definitely aware of the power he has to demand being held, nursed or changed and he takes full advantage! :)
Overall he is getting better. We still don't know why. He still doesn't have a concrete diagnosis. But he is improving...and we couldn't be happier!
Saturday, March 8, 2014
March 8 - Training begins
We had our first crash course in taking care of Oliver today. We talked about different blood counts, his risk of infection, how to give meds through the feeding tube, how to flush the feeding tube and what to do if we suspect Oliver is coming down with something. Monday will be a busy day for us-finishing our 'training' and it looks like they will discharge Oliver on Tuesday. Sean and I are both still nervous about leaving the hospital with Oliver still being so fragile and his immune system being so compromised, but it's not really up to us!
Oliver is truly a little champion! He made more platelets last night and his platelet count was up to 13,000 this morning. He is nursing more and more, and using the feeding tube much less. He also has discovered that he can demand to be held. If he can't be in our arms or on our chest he will settle for laying next to us, as long as we are touching...occasionally he enjoys being in the swing or laying in bed looking around-but he has figured out when we are trying to trick him into falling asleep without us...and he is persistent in his request to be snuggled! Fortunately for Oliver there is no shortage of people just waiting to hold him. I think the nurses in cancer care like it when we leave because they have an excuse to hold him. He is the youngest kid in cancer care and he gets a lot of attention. He has been dubbed 'the golden child' partially because he is so charming, and partially because...well...because he has a beautiful golden yellow glow :)
Oliver is truly a little champion! He made more platelets last night and his platelet count was up to 13,000 this morning. He is nursing more and more, and using the feeding tube much less. He also has discovered that he can demand to be held. If he can't be in our arms or on our chest he will settle for laying next to us, as long as we are touching...occasionally he enjoys being in the swing or laying in bed looking around-but he has figured out when we are trying to trick him into falling asleep without us...and he is persistent in his request to be snuggled! Fortunately for Oliver there is no shortage of people just waiting to hold him. I think the nurses in cancer care like it when we leave because they have an excuse to hold him. He is the youngest kid in cancer care and he gets a lot of attention. He has been dubbed 'the golden child' partially because he is so charming, and partially because...well...because he has a beautiful golden yellow glow :)
Friday, March 7, 2014
March 7 - Nursing extravaganza!
Oliver is a nursing fool! The lactation consultant came today and watched him nurse and was very impressed with his skills :) We used a scale to weigh him before and after he nursed to get an idea of how much he is eating and within 24 hours he built his endurance from being able to eat 20ml to 72ml (a full feed!) He is a little rock star! We also got to give him his first REAL bath today. He looked a little confused about what we were doing to him when we first dipped him in the baby bathtub, but he didn't cry-in fact, I think he liked it :) When Sean and I are there we are able to walk around with him completely unattached to any monitor. It is so much easier to snuggle a wireless baby!
His platelets dropped to 10,000 this morning- he will have the platelets checked again at 4:00am. Besides that he is doing great! His bili continues to slowly decline and he received his second dose of chemo yesterday evening. He seems to be tolerating it well so far and has not had any of the nasty side effects (fingers crossed). The Dr.'s have been talking a lot about letting us leave the hospital with Oliver. It sounds like this could happen as early as next week! As exciting as this is, Sean and I are also nervous about taking our baby, with zero immune system, out into the world! If (or should I say when) we leave the hospital we will have to stay within an hour of Seattle Children's until they give us the thumbs up to go home...so far we have not been given a timeline for when this could be, as it depends on his labs and how he responds to treatment.
Well, I am heading back to the hospital to spend the night with Oliver...love to all!
His platelets dropped to 10,000 this morning- he will have the platelets checked again at 4:00am. Besides that he is doing great! His bili continues to slowly decline and he received his second dose of chemo yesterday evening. He seems to be tolerating it well so far and has not had any of the nasty side effects (fingers crossed). The Dr.'s have been talking a lot about letting us leave the hospital with Oliver. It sounds like this could happen as early as next week! As exciting as this is, Sean and I are also nervous about taking our baby, with zero immune system, out into the world! If (or should I say when) we leave the hospital we will have to stay within an hour of Seattle Children's until they give us the thumbs up to go home...so far we have not been given a timeline for when this could be, as it depends on his labs and how he responds to treatment.
Well, I am heading back to the hospital to spend the night with Oliver...love to all!
Thursday, March 6, 2014
March 6 - Cancer Care
We spent our first night on the floor last night. The cancer care unit is brand spanking new and lovely! The room is spacious with a large window, two television sets, our own bathroom with a shower, a swing and crib for Oliver, a bed and rocking chair for us...even a small fridge and two closets! We are welcome to stay here as much as we like so I spent the night with Oliver last night. It was the first time we've ever nursed on demand and we both enjoyed having those midnight snuggles! Oliver's platelets were at 23,000 this morning. He hasn't has a transfusion since the 27th of February! His red blood cells were low so he will have a blood transfusion tonight. Other than that he is doing great! A woman came by today to talk to us about home care. She is going to meet with Sean and I tomorrow and Saturday to teach us how to insert his feeding tube, how to use a machine to supplement his feeds and how to care for his PICC line. She seems to think we will be bustin' out of here next week! We will have to stay in Seattle a while longer (exactly how long depends on how Oliver responds to the chemo) but we are heading in the right direction! We appreciate all of the prayers and well wishes! Thank you!!! :)
Wednesday, March 5, 2014
March 5 - Back up and running!
I want to start by saying how sorry I am that the blog has not been tended to-and that we didn't give any advanced notice! I know how worried many of you must be and I blame Sean! I left the blog in his hands while I made a quick trip back to Sandpoint to visit Jack and Jillian and he didn't make an entry the first night...after that he had trouble getting on the internet...long story short, it's all his fault :)
I JUST arrived in Seattle and haven't seen Oliver yet, so this entry will be short, but I wanted to let you all know that he is doing great! I will fill you in with all the details later, but he is responding very well to the medications they have given him and his platelets are at 27,000!
Much love to all of you! Will write more soon!
XOXOXOXO
I JUST arrived in Seattle and haven't seen Oliver yet, so this entry will be short, but I wanted to let you all know that he is doing great! I will fill you in with all the details later, but he is responding very well to the medications they have given him and his platelets are at 27,000!
Much love to all of you! Will write more soon!
XOXOXOXO
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