Tuesday, March 25, 2014

March 25 - Oliver gets a new PICC

Oliver is getting his new PICC right now...he went back at 5:00-we expect him to be done any time now. His belly is continuing to grow so he is still on the diuretic. When they took his PICC line out yesterday that meant they had to draw his blood for his labs by poking him. His blood clotted ( I know that doesn't make sense since his platelets are low, but that's what happened ) His platelets came back at 17,000 but they transfused him anyway in preparation for the PICC placement. The results of the second EKG came back, and the cardiologist wants to look at his heart on an echo. They said the muscle surrounding his heart looked large, possibly because his heart is having to work so hard to push blood through his swollen organs. I believe the word she used was hypertrophy...I haven't researched this yet. Oliver is scheduled to receive chemo tomorrow and will have an MRI done on his brain this week. The heart and brain are two systems that have not been explored in detail at this point. I am trying not to let my fears get the best of me, but it is difficult!

We have an account on GoFundMe now, and I will be switching my updates to that site so that I only have to post in one place. We have already been here almost two months, and we are looking at several more...this is a long road and our finances are running low, I hope the GoFundMe site helps up be able to stay in Seattle with Oliver while he continues this fight!

If you wish to keep following Oliver's story feel free to check in at http://www.gofundme.com/7t5kik

Thank you!!!


Monday, March 24, 2014

March 24 - The battle continues

There's so much to say, I don't even know where to start! Oliver has been busy making platelets, yesterday they were at 30,000; today they were at 22,000. I mentioned before that Oliver has a blood infection. In order to be declared cleared of the infection he needs to have three blood cultures in a row come back negative. Yesterday the blood culture from a few days ago grew some bacteria which proves his blood is still infected. There is some concern that the PICC could be responsible for the infection so it was removed this morning. He is scheduled to have a new PICC placed tomorrow afternoon. In the meantime he has an IV in his leg. The nurse said he didn't even cry when they placed the IV. He is a tough little cookie!

The results of Oliver's EKG came back and there were some waves in the reading...I have absolutely no idea what this means, but they are repeating the EKG this week. I'd be lying if I said this didn't have me worried-but if there's one thing I've learned through this it's not to get worked up about the 'could have's'...so often the tests come back and there's nothing to get excited about.
< br /> We haven't heard anything more about the Niemann Pick test that's out, or the HLH tests...Jack and Jillian arrived last night. It feels so good to have our family together. I asked Oliver's Doctors how long we should expect to stay in the Seattle area-they can't give us a very good estimate, but the Hematologist said he'd expect to see us stay in the hospital for a few more weeks and then stay outpatient (but close) for a few more weeks...maybe plan on 2-3 more months. All I could do is take a deep breath and let it sink in. It is incredibly difficult to be so far from home. It is even more difficult having our family split up. Sean and I are thinking of ways to have Jack and Jillian finish school from Seattle. Please keep praying for our family. Through all the scary stuff we are still holding strong-keeping our hearts full of love and gratitude for the people we are blessed to have in our lives. We are doing our best to cherish every moment we have together.

Saturday, March 22, 2014

March 22 - Oliver is a sleepy bear!

We met with Oliver's Hematologist/Oncologist, Immunologist, Geneticist and several other Doctors yesterday. We decided that it is almost definite that Oliver has a form of HLH. There are 4 tests that can determine if he has HLH and if so, what type. Three of those tests have been sent to Cincinnati and the 4th one will be sent next week. We should see results in the next 1-4 weeks. The Geneticist also has a test out to see if Oliver has a 'deleted' companion gene that matches up with the positive Neimann Pick C gene we found in one of his tests. The thought is that just because Oliver doesn't have 2 of the gene's for Neimann Pick, he could have one and the other could be like a blank-allowing some of the Niemann Pick symptoms to present in his illness. Long story short, Oliver's liver function has improved and they are going to try the chemo again. Some of Oliver's test results have come back so high they are off the charts, so we can't really tell if the chemo lowered them...but for now everyone agrees that it's out best chance at beating this!

Sean is picking Jack and Jillian up today and they will be spending the next two weeks with us. We are so happy to be able to have the next couple weeks to spend as a family. There is an amazing photography business here that does free photo's for families in our situation. We scheduled an appointment and are looking forward to our first family pictures with Oliver :)

Thursday, March 20, 2014

March 20 - update

After talking to Oliver's Doctors today it is quite clear that we are all still confused about what it going on in that tiny body if his. It doesn't sound like the geneticist thinks it's Neimann Pick-but we are still exploring Oliver's gene's just in case. So...we are back to square one. We know Oliver's body is destroying platelets. It is not doing a good job of keeping a balanced white and red blood cell count. His liver and spleen are enlarged and bogged down...but we don't have a clue why.

We are having a meeting tomorrow at 3:30 with lots of Oliver's Doctors-hopefully we will come up with some new tests or disorders to explore.

Oliver had an EKG which showed that his heart is doing a wonderful job!

Meg is one of Oliver's favorite NICU nurses! We miss you Meg!!! Please come visit :)

This is Oliver's sick face...not feeling well yesterday :(

Sleeping like a baby today!

March 20 - The search continues...

At rounds yesterday morning we met our new HemOnc Dr. who let it slip that we are shying away from the HLH diagnosis. Sean and I tried to hide our shock and wait until the appropriate time to ask questions...but inside I was unbelievably curious! I still don't completely understand what changed their minds. I know Oliver has only received 3 doses of the chemo drug-and they were very small doses-so I can't imagine that was a fair shot at testing how his body was responding. I know there is concern that his liver isn't able to handle the etoposide (chemo) and because of that he hasn't been able to receive the doses on a normal schedule. Whenever you are admitted through the ER and previously an ICU patient you are assigned a 'RISK' nurse. There is a RISK nurse working 24 hours a day and they come by to check on Oliver and assess if he needs to be back in ICU. Yesterday we were asking if the Cancer Care unit is still the best place for Oliver. Sean and I feel that since he's not receiving chemo and he doesn't have cancer there must be another floor that would help us figure out what's going on with him. He isn't sick enough to return to the ICU and the only other floors are surgical and medical. The medical floor is not nearly as clean and isolated as the cancer care unit so it turns out we are exactly in the best place for Oliver. I think the only reason he qualifies to be on the cancer care floor is because he is on a chemo dose of steroids. So if Oliver doesn't have HLH (we still aren't SURE, but we're leaning away from it) what the heck is going on with this sweet baby??? In one of the genetic tests we found out that Oliver is a carrier for a disease called Neimann Pick. In order to have the disease you must have 2 genes; Oliver only has one however there is a chance that the 2nd gene could be blank and therefore allow some of the symptoms to present. I am not at all clear on how this works and we are meeting with the Genetics Dr. early this afternoon. Please continue praying for Oliver...he felt terrible yesterday and didn't even want to be swaddled or have his binky. He seems to be feeling better today and we are extremely thankful for that!!!

I apologize if this post is scattered...so much to tell and only a few minutes to post! Love to all XOXOXO

Tuesday, March 18, 2014

March 18 - Oliver has acute face... ;)

Oliver did well through the night. He stopped bleeding and this morning he was granted permission to eat more. He is very pleased with this news! He still is no where near full feeds, but he's getting closer. We are slightly concerned that he hasn't had a soiled diaper since 4:00 this morning so everyone will be watching his output very closely today. Every drop of fluid going into or out of Oliver is carefully weighed to make sure he is balanced. His heart rate dropped a little several times last night. At rounds this morning they ordered an EKG and more blood cultures. I am not completely sure what they are checking for-the EKG is scheduled for 2:00 this afternoon-but the heard rate decels don't have me too worried at this point...all of Oliver's cardio stuff has looked great since he was born. Oliver's urine culture came back positive with the same infection that is in his blood. There was a change made to his antibiotic prescription this morning so that we can treat the urine infection as well. He is also starting to wean off the of Dex (steroids). His platelets were at 8,000 this morning which is higher than the threshold of 5,000 to transfuse but they went ahead and transfused anyway (only 1/2 of what he's been getting).

Despite all of this Oliver is doing remarkably well. He is lethargic but starting to have short periods of being awake-usually only when he's trying to convince the nurse to sneak him a little breast milk-but awake just the same. He still has a pacifier in his mouth 90% of the time and he spends most of the day in our arms. :)

Monday, March 17, 2014

March 17 - More prayers please!!

So much for our day off! We were scheduled for a lab draw yesterday morning and because it was Sunday & the lab has limited hours we had to stay while we waited for results...platelets came back at about 7,000-for some reason there was question about the accuracy of the count and the nurse wanted to do a platelets transfusion even though Oliver wasn't below his threshold of 5,000. Sean and I talked it over and decided we should wait until our clinic appointment it 7:30 Monday morning to assess his platelets again...the nurse we were scheduled to see on Monday morning deals with all of the HLH cases at Seattle Children's and since Oliver's belly has been getting bigger we didn't want to overload his liver & spleen with more platelets. The Dr.'s on our team were consulted and everyone agreed he could wait until morning so we went back to Ronald McDonald and took a nap.

The last two nights Oliver has been a little fuss bucket at bedtime. Sean and I can usually sooth him, but he was crying out as if he was in pain so we gave him a little pain medicine and that did the trick. During the day today we noticed Oliver was having slightly increased difficulty breathing. His chest was sinking in slightly and his head was bobbing a little. By bedtime we realized that over the course of the day his breathing became more difficult and we decided to page the oncology fellow to ask how they would like us to proceed. She suggested we come in to the hospital, so we did. When we arrived we were promptly greeted by Dr. Evans who did a rotation in the NICU when Oliver was a patient there. We were THRILLED to see him! He was one of our favorite Dr.'s when we were in the NICU and he knew Oliver's history. What luck! The nurses checked his vitals and he looked good except his temp was too low...They did blood work and an abdominal x-ray. His platelets came back at 8,000 and his blood gas was beautiful. The x-ray showed no significant changes to his liver or spleen...he was definitely having some trouble breathing but his blood was well saturated with oxygen and we were thinking we would go home, get some sleep and come back first thing in the morning for our scheduled appointment in the clinic. Oliver had given a urine sample and Sean was going to change his diaper...he noticed Oliver had pooped so he turned around to grab some wipes and when he got back to the diaper it was full of bright red blood with some rather large clots. This would be concerning in anyone, but especially in a baby that can't clot. Where is this blood coming from?? Because it was so bright in color the Doctor was confident that it was not coming from his intestines. At this point we think it may have been from the rectal temp. Oliver had when we first arrived in the ER. Oliver has never had his temperature taken rectally (and probably won't again!). He has had about 5 bloody diapers since midnight. He was immediately admitted and transferred from the ER back to the Cancer Care unit where he received a platelet transfusion followed by a plasma transfusion. During his ER labs they did a blood culture which came back positive. Oliver has a blood infection, so they needed to start antibiotics. With everything that needs to go into Oliver the PICC can't work fast enough so he got another IV. We are taking great care to keep Oliver from bearing down which means we don't want him to cry. He did great during the IV placement and barely squawked (we gave him some sugar water to ease the pain). The IV nurse took some more blood and Oliver will get a red blood cell transfusion after the plasma.

He has been sleeping almost the entire time we've been here. You can tell he doesn't feel good but I think he is relatively comfortable here. We haven't given him anything for pain and he is (mostly) sleeping.

They are going to be rounding on Oliver soon and I don't want to miss it, so I am going to get back in there-but I will keep updating the blog as things progress. Please keep us (and Oliver's Doctors and nurses) in your thoughts and prayers today.

Love to all!!!

Saturday, March 15, 2014

March 15 - Another day, another transfusion

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 :)

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!!!



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!





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 :)

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!






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