April 5 - The journey continues

I hope everyone has been able to keep up with the posts on GoFundMe, but I just felt like I should update on here...I found a great website that gives accurate info about HLH...here's the link

http://www.hlhjournal.com/2010/04/hlh-a-simple-description/

Oliver's test results aren't back from Cincinnati to confirm the HLH diagnosis, but his Doctors are confident that he has it. We are currently looking at Familial HLH. Recently, Oliver's Doctors have started further investigating other genetic disorders with the thought that Oliver may actually have two separate but similar diseases. We are still waiting for the second Neimann-Pick C test to see if he really just has one of the genes.

In the meantime, Oliver is back on oxygen and high flow. Breathing with all of his organs in the way is taking too much of his energy. He is still receiving chemo and steroids along with a beta blocker for his heart, a medicine to protect his stomach from the steroids and a medication to help his liver. He also takes vitamins. :)
The odds of a baby being born with the troubles Oliver is having are literally one in a million, but I believe Oliver is one in a million and I see no good reason we can't beat this! With amazing medical help, an abundance of love, and the power of prayer I just know Oliver will win this battle and live to do amazing things with his strength and courage. WATCH OUT WORLD!

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!!!

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.

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 :)

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

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. :)