Oliver is doing well today...he was a bit gassy when I was there, so he needed extra snuggles to calm down and fall asleep. We are constantly getting compliments on how happy he is! He is smiling ear to ear every day now. We are trying to give him more of a schedule, which is surprisingly difficult with all the specialty doctors stopping by to see him. He does have a bit of a routine though. He wakes up in the morning around 7:30 and after snuggling and waking up slowly we get ready for his bath. He generally enjoys the bath as long as the water is VERY warm. We have to take off his leads that monitor his heart rate and respiratory rate and his pulse-ox that monitors the oxygen saturation of his blood. Next, his PICC line has to be wrapped up like a cast so it is not exposed to the water. We leave his nasal cannula and feeding tube hooked up and wheel the bath tub out to his bedside. He has to have a bath every day to prevent his skin from breaking down from the medications he's on. After his bath, the nurses bring in warm towels (this is CLEARLY Oliver's favorite part) he gets wiped down with chlorhexidine wipes to remove any potentially lingering bacteria from his skin. He gets weighed and we measure his belly, then we put all of his wires back on (leads and pulse-ox) and he gets a massage. By now he is snuggled in warm blankets and only the part of his body that is getting worked on is exposed-he almost always starts to fall asleep during this part :) We have to do some stretches that the physical therapist taught us to keep his arms and legs loose since he is snuggled up so often he hasn't had a chance to really use his limbs. After all of this Oliver usually stays awake a little while longer and socializes with anyone who looks his way. Rounds are usually between 11:00 am and noon and any procedures, tests, changes to medications or transfusions are scheduled. Oliver often sleeps until mid afternoon and will have another period of being awake for a couple hours. He is so charming and content, I think he is the most tolerant person I know!
We are STILL waiting for the HLH tests from Cincinnati to clarify what form of HLH Oliver has...we will be getting chemo every two weeks now-for the next 21 weeks no matter what, but if Oliver's HLH is genetic he will need a bone marrow transplant to cure it. Many of you have offered to be tested and we are so very appreciative, however the test is expensive and it is not likely that we would find a good match for Oliver on our own. The best way to find out is to join a bone marrow registry like Be The Match. It's super easy-go online, fill out a quick form, they send you a packet in the mail with 4 swabs-you swab your cheeks and send it back in the envelope they provide and you're done. If you're a match to Oliver (or anyone else) they email you and you have the option of donating at that time. I have been on the registry for over a year and have not been contacted, but I would love the opportunity to donate if it ever came my way!
Jack and Jillian have been with us for a few weeks now. They are adjusting well but miss their friends dearly. We have found some fun (free) things to do here in Seattle-their favorite spots so far were the zoo, the Burke Museum and the gum wall-YUK!!
TODAY on GoFundMe
Oliver got another chemo dose yesterday, and platelets today. He is still dazzling everyone with his toothless grin and starting to take an interest in the world around him. We are still waiting for the HLH tests from Cincinnati to determine if Oliver's HLH is genetic or infectious...in the meantime Oliver will continue receiving his chemotherapy treatments. Through all this he wakes up happy every morning and is almost always content. Given all he has to complain about-he rarely fusses...my inspiration!
APRIL 12 on GoFundMe
Oliver had a wonderful morning, he made platelets last night (up 1,000 since yesterday) and he's been smiling at all the nurses! :) No transfusions or tests today...just a lazy Saturday napping in my arms while Jack and Jillian watch Saturday morning cartoons. Yes, we are making Oliver's hospital room feel like home!
APRIL 8 on GoFundMe
Oliver slept well last night, I got scolded by the night nurse for falling asleep with him, but it was worth having those extra snuggles! He had another abdominal ultrasound yesterday to check on his liver and spleen & to look at his gall bladder to make sure he didn't have any stones or 'sludge'. I'm not exactly sure what 'sludge' is...but it sounds less than desirable. The ultrasound showed no changes in his liver or spleen since the ultrasound a month ago, and no stones or sludge in his gall bladder. There is slightly more fluid in his belly, but the quality of the fluid is also...you guessed it...unchanged. I'm beginning to sense a trend here. Day to day things seem to stay the same for Oliver. He gets transfusions some days (platelets today) and we continue to run lots of tests-I pray that things start moving quickly in the direction of health for Oliver!
We have a care conference this afternoon with several of Oliver's doctors. I hope to find out more about his MRI results, learn what exactly is happening with his heart and more about the heart medication he started last week.
We are taking a tour of a school here that teaches students who have a sibling in Seattle children's. I am optimistic that this would be a good way for Jack and Jillian to meet other kids and keep up academically...Thank you to everyone who's helped us make it this far, I couldn't imagine not being here for Oliver through this and we're still able to stay because of the generosity of our friends and family-and even people we've never met! Oliver is truly loved.
APRIL 5 on GoFundMe
Oliver did not have any transfusions or tests today, he just got to be himself :) He is on the transplant list for bone marrow and we are checking to see if Sean, Jack, Jillian or I are possible matches. The type of HLH Doctors think Oliver might have is Familial HLH 5. Many of you have asked what this diagnosis means-and there is not a lot of good information about it on the internet because it is so rare...I found this website that describes it quite accurately and is easy to understand...
http://www.hlhjournal.com/2010/04/hlh-a-simple-description/
Thanks to everyone who is keeping Oliver (and us) in their prayers!
APRIL 3 on GoFundMe
Oliver is increasingly uncomfortable and his poor belly is bigger than it's ever been. Because of this it is becoming more difficult for him to fill his lungs so he is back on high flow through the cannula. Also, the MRI results came back and although Oliver's brain is slightly smaller than it should be there are no signs of disease in his brain-thank God! No transfusions today, but we had to increase his pain meds a bit because he's so uncomfortable. Poor little guy!
APRIL 2 on GoFundMe
Sean stayed the night with Oliver in the hospital last night. The nurses brought in a swing for him and he seems to like it. We can't help but feel like we are in limbo just waiting...Oliver still hasn't been scientifically diagnosed and it will be weeks before the test results are back. We are going to continue giving steroids and chemo for the time being. Feels so strange giving our newborn baby chemo. He is scheduled to get another dose today as long as his liver can handle it. *fingers crossed that we're doing the right things to help him get better*
Oliver has a big day today-he had his chemo this morning and will be having a platelet transfusion and MRI of his brain this afternoon. I do my best to be strong, but every once in a while I can't help but be sad for my tiny baby boy who's life didn't start out the way we intended. He is a tough little cookie and although I wish he didn't have to fight so hard I am unbelievably thankful he is fighting this disease.
MARCH 31 on GoFundMe
Our family has a tummy virus that has prevented us from spending time with Oliver for the last couple days. We miss him terribly and hope he isn't feeling abandoned. I talked to his Doctor today and she told me they changed Oliver's platelet transfusion threshold to 10,000. He received a platelet transfusion yesterday, in the arms of a volunteer who stepped in to take our place since neither Sean or I could be there. One of the HLH tests came back normal...there are two more tests in Cincinnati that should be back in about 3 weeks...also, the results from Oliver's second EKG came back, an ultrasound was done and Oliver's cardiologist said the wall on the left side of Oliver's heart is thickening. She will likely recommend medication to help his heart continue to do it's job without being overworked. I'm not positive, but I think she said the medication is a beta-blocker...I was hoping to get through this without the cardiologist getting involved...so far his brain and his heart have not attracted any specialty Doctors. Keep praying for this baby of ours!!!
MARCH 29 on GoFundMe
We had the best day yesterday! Oliver was feeling well, awake & alert. No tests, no transfusions...a great day to be a baby. :) I slept at the hospital again last night. Oliver sleeps so well we actually have to wake him to change his diaper! Sean is sick-so far he's the only one in our family - here's hoping no one else gets it!
Oliver's platelets went down to 10,000 today and his crit was low so he needed another red blood cell transfusion. No new tests today...we are hoping to see results from one of the HLH tests on Monday or Tuesday...fingers crossed we will get Oliver figured out soon so he can be home with his family! We appreciate all of the positive thoughts and energy that have come our way from our friends and family!! Thank you!
MARCH 28 on GoFundMe
Good morning! Oliver is doing great today, I slept with him in my arms most of the night and we both woke up happy...yes, it is going to be a fantastic day!
MARCH 26 on GoFundMe
Oliver is doing well today, he is getting an anti-nausea medication right now and will have another dose chemotherapy afterwards. He hasn't had the echo yet-it may be pushed back another day or so and Oliver's doctors have decided to hold off on the MRI of his brain for now.
Sean's mom flew in from California and is enjoying bonding with her newest Grandson. Jack and Jillian are making friends here at the Ronald McDonald house. We are so thankful for all of the support, prayers and well wishes!
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