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Saturday, February 22, 2014
February 22 - Oliver gets a private room
Our sweet Oliver has quite a temper! I think the steroids are to blame...we held him for more than 9 hours yesterday and as the nurse said he fussed for almost an hour and a half after we put him down. She gave him a little benedryl to see if that would help (one of his medications is known for making your skin itch) but that didn't help. She fed him, but that didn't help. She eventually gave him morphine and he calmed down and slept.
The physical therapist came yesterday and measured Oliver to make him a more elaborate bed...she used a wedge of foam and carved out a hole for his belly so that Oliver can lay on his tummy without putting pressure on it. The goal was to let gravity pull his organs down and create more space for his lungs so that he doesn't have to work so hard to breath. He didn't seem thrilled about it...so they made another one that would support him on his back (or side) with straps to help keep him swaddled. He seems to enjoy this bed a little more.
Medically things are changing for Oliver. He has been on the steroid dexamethasone (dex for short) for almost 5 days now. Yesterday we saw a significant jump in his platelets-he went up to 34,000-but at 5:00pm yesterday he was back down to 13,000 and at 4:00am he was at 6,000. His Doctors and hematologists have decided to lower the threshold for giving platelets to 5,000 so he hasn't had any blood products for 24 hours now. The thought behind this lower threshold is that his liver could be bogged down trying to get rid of all the platelets we're pouring into him. He will have his platelets checked again at 4:00 this afternoon. They will almost certainly be below 5,000 and he will get another platelet transfusion. The transfusions will only contain half the number of platelets he was being transfused with before.
Oliver still has not been diagnosed with anything. There are very few, specialized tests that are still being done but it is common for infants not to present with textbook symptoms of a disease or disorder. The closest we are to a diagnosis is a disorder called HLH (Hemophagocytic lymphohistiocytosis). There are 8 characteristics of HLH and in order to be diagnosed with it you must present with at least 5 of the symptoms. Oliver has 4. My basic understanding of this disorder is that the immune system goes haywire-the best treatment they have is a form of chemotherapy. Just to be clear, Oliver does not have cancer. In this case the oncologist would use chemotherapy to lower his immune system and sort of 'reset' it...Oliver's Doctors do not feel comfortable diagnosing him with HLH, but are keeping a close eye on him and continuing to study his blood work closely. He was moved to his own private room (aka-isolation) in case they decide to begin chemo. The dose of dex that he receives is consistent with the dose given to children on chemo and only his hematology-oncology team administers it. We continue to pray that Oliver's Doctors are able to treat him and that we will be home soon with a healthy, happy Oliver.
We miss the heck out of Jack and Jillian and are so thankful for Jenni who has taken them under her wing. Hearing the joy in their voices when they tell me about the adventures they have been on with their friends and the excitement about their days at school lets me know that this is much harder on me then it is on them! Thank you Stacy for sending pictures and videos of them...It truly does take a village to raise a child and I really couldn't ask for a better village! Much love and thanks to all of you!
The physical therapist came yesterday and measured Oliver to make him a more elaborate bed...she used a wedge of foam and carved out a hole for his belly so that Oliver can lay on his tummy without putting pressure on it. The goal was to let gravity pull his organs down and create more space for his lungs so that he doesn't have to work so hard to breath. He didn't seem thrilled about it...so they made another one that would support him on his back (or side) with straps to help keep him swaddled. He seems to enjoy this bed a little more.
Medically things are changing for Oliver. He has been on the steroid dexamethasone (dex for short) for almost 5 days now. Yesterday we saw a significant jump in his platelets-he went up to 34,000-but at 5:00pm yesterday he was back down to 13,000 and at 4:00am he was at 6,000. His Doctors and hematologists have decided to lower the threshold for giving platelets to 5,000 so he hasn't had any blood products for 24 hours now. The thought behind this lower threshold is that his liver could be bogged down trying to get rid of all the platelets we're pouring into him. He will have his platelets checked again at 4:00 this afternoon. They will almost certainly be below 5,000 and he will get another platelet transfusion. The transfusions will only contain half the number of platelets he was being transfused with before.
Oliver still has not been diagnosed with anything. There are very few, specialized tests that are still being done but it is common for infants not to present with textbook symptoms of a disease or disorder. The closest we are to a diagnosis is a disorder called HLH (Hemophagocytic lymphohistiocytosis). There are 8 characteristics of HLH and in order to be diagnosed with it you must present with at least 5 of the symptoms. Oliver has 4. My basic understanding of this disorder is that the immune system goes haywire-the best treatment they have is a form of chemotherapy. Just to be clear, Oliver does not have cancer. In this case the oncologist would use chemotherapy to lower his immune system and sort of 'reset' it...Oliver's Doctors do not feel comfortable diagnosing him with HLH, but are keeping a close eye on him and continuing to study his blood work closely. He was moved to his own private room (aka-isolation) in case they decide to begin chemo. The dose of dex that he receives is consistent with the dose given to children on chemo and only his hematology-oncology team administers it. We continue to pray that Oliver's Doctors are able to treat him and that we will be home soon with a healthy, happy Oliver.
We miss the heck out of Jack and Jillian and are so thankful for Jenni who has taken them under her wing. Hearing the joy in their voices when they tell me about the adventures they have been on with their friends and the excitement about their days at school lets me know that this is much harder on me then it is on them! Thank you Stacy for sending pictures and videos of them...It truly does take a village to raise a child and I really couldn't ask for a better village! Much love and thanks to all of you!
Thursday, February 20, 2014
February 20 - A thankful day...
Sean and I spent some time today counting our blessings. Through all of this we are realizing how fortunate we are to have such amazing friends and family who have all reached out to us through prayer, helping with loose ends back home, financially and taking care of Jack and Jillian. We have love and support everywhere we look and we can't begin to express how comforting it is to know how many people are cheering for us.
Having the Ronald McDonald house has been priceless. Having a place to rest is so important. We are within walking distance of the hospital and they prepare meals here several nights a week. Staying this close to Oliver would be out of our reach without a program like this.
Also, to have a baby born in a country with amazing medical facilities and for Oliver to be receiving care at the best children's hospital in this corner of the country. To have kind, caring nurses and Doctors who involve us in Oliver's care. We are extremely thankful!
Oliver seems to be doing a bit better today. His belly is slightly smaller than it was yesterday. Because of his swollen spleen and liver his abdomen is distended and was growing about a centimeter each day. He was at 45 centimeters yesterday and today he went down to 44 centimeters...the first decrease in girth he's ever had! His breathing is still strong and today his Doctors allowed him to go back to full feeds of breast milk. We still aren't fortifying my milk with formula-and the most exciting part of the whole day? The Doctors agreed I could let him try to latch and do a little nursing! He hasn't nursed before, and they expected he would tucker out rather quickly but we tried and he latched beautifully! He ate for a few minutes before falling asleep. A big, exciting day for all of us! Since Sean can't nurse Oliver he called dibs on burping him and was able to get a big burp from little Oliver right away ;)
P.S.
A special thank you to Elyjah for the beautiful painting you sent to Oliver. It is the very first masterpiece to be hung on his wall and I am sure he will love it as much as we do! Thank you for thinking of us! We appreciate your thoughts and prayers.
Having the Ronald McDonald house has been priceless. Having a place to rest is so important. We are within walking distance of the hospital and they prepare meals here several nights a week. Staying this close to Oliver would be out of our reach without a program like this.
Also, to have a baby born in a country with amazing medical facilities and for Oliver to be receiving care at the best children's hospital in this corner of the country. To have kind, caring nurses and Doctors who involve us in Oliver's care. We are extremely thankful!
Oliver seems to be doing a bit better today. His belly is slightly smaller than it was yesterday. Because of his swollen spleen and liver his abdomen is distended and was growing about a centimeter each day. He was at 45 centimeters yesterday and today he went down to 44 centimeters...the first decrease in girth he's ever had! His breathing is still strong and today his Doctors allowed him to go back to full feeds of breast milk. We still aren't fortifying my milk with formula-and the most exciting part of the whole day? The Doctors agreed I could let him try to latch and do a little nursing! He hasn't nursed before, and they expected he would tucker out rather quickly but we tried and he latched beautifully! He ate for a few minutes before falling asleep. A big, exciting day for all of us! Since Sean can't nurse Oliver he called dibs on burping him and was able to get a big burp from little Oliver right away ;)
A special thank you to Elyjah for the beautiful painting you sent to Oliver. It is the very first masterpiece to be hung on his wall and I am sure he will love it as much as we do! Thank you for thinking of us! We appreciate your thoughts and prayers.
Wednesday, February 19, 2014
February 19 - A room with a view!
When we went to visit Oliver last night we found that he had moved to the other side of the room...right next to the window! It has been unusually sunny here in Seattle, and it's nice having the natural light in our room. Oliver also got a bigger bed! I think he's schmoozing the nurses ;)
Oliver started steroids last night, but he was still a little snooze puppy this morning. He will probably have more periods of being awake after the steroids are in his system. His stools are clear of blood and he was allowed a small amount of breast milk this morning. If he tolerates it well he will be allowed to eat more and more! On Friday all of the doctors and specialists who have been watching Oliver will be meeting with us to see how he's responding to the steroids and decide how to further treat Oliver. He still falls short of being diagnosed with anything, but there are some things on the table that can't be ruled out...we will see where the conversation leads us on Friday.
Yesterday my brother Jonathon and his friend Stephanie came to visit Oliver. I think Oliver was happy to meet them :)
Jack and Jillian have aged considerably since we've been gone. Their teacher recently sent me this picture of them in their 100's. Poor Jillian is missing all of her teeth, but they appear to be happy and that's what truly matters!
Oliver started steroids last night, but he was still a little snooze puppy this morning. He will probably have more periods of being awake after the steroids are in his system. His stools are clear of blood and he was allowed a small amount of breast milk this morning. If he tolerates it well he will be allowed to eat more and more! On Friday all of the doctors and specialists who have been watching Oliver will be meeting with us to see how he's responding to the steroids and decide how to further treat Oliver. He still falls short of being diagnosed with anything, but there are some things on the table that can't be ruled out...we will see where the conversation leads us on Friday.
Yesterday my brother Jonathon and his friend Stephanie came to visit Oliver. I think Oliver was happy to meet them :)
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Stephanie and Oliver
Tuesday, February 18, 2014
February 18 - The battle continues!
Our sweet baby has been so sleepy lateley but that hasn't stopped us from snuggling him! We've seen some changes in Mr. Oliver in the last couple of days. As I mentioned before he has quite a bit of blood in his stool. His medical team decided to stop feeds and let his tummy rest. When we start feeds again he will have less formula in my breast milk. Until then he gets nurtition through an IV. This morning he had a tiny, blood-free smear in his diaper. His bili level dropped a little more, but some of the other blood levels (like red blood cells) have started dropping-Oliver recieved a red blood cell transfusion this morning following his morning platelets. His belly is continuing to grow causing Oliver to work harder to breath. They have increased his oxygen level to 30% and his high flow to 6 liters.
He had another blood gas which looked good and his heart rate is stable and strong. From a cardio perspective he looks great. Because of the recent changes in Oliver's health his Doctors have agreed that starting him on a steriod would benefit him. More info on this to come-I will try to update again tonight. Right now Oliver is getting his new PICC line so I had a few minutes to update and wanted to fill you in. We will be meeting with the Hematologist, Oncologist and maybe even the Rhumatologist this evening to discuss any possible diagnosis they can collectively come up with. As of now I think almost every other department is out of ideas.
I had blood drawn today to check for Lupis. Oliver isn't presenting many signs that would suggest he has Lupis, but it's something that hasn't been ruled out.
We are crossing things off the list left and right! We appreciate your support and prayers and take comfort in knowing how many of you are cheering us on! We expect victory!
Sunday, February 16, 2014
February 16 - Slow Sunday
It's official-our little Oliver thoroughly enjoys being held. He has started to show us that he strongly prefers being in our arms and sleeps much more soundly and for longer stretches when we're holding him. If we aren't there he is happiest on his left side. He will tolerate being on his right side (though not for nearly as long) and he absolutely does not like being on his back. He also doesn't mind having his blood pressure taken but taking his temperature really gets his goat! It is so fun to learn his little quirks ;)
Rounds were pretty unexciting this morning. Oliver had a little blood in his stool early this morning so they are not going to feed him today in order to give his tummy a break. There is question about whether it's irritating his digestive system to have so much formula in my breast milk so when they start feeding him again they will lower the amount of formula they are giving him-which makes me happy because I really don't like having the formula in my milk in the first place. :)
Oliver's platelets were 11,000 this morning. The orders state that he gets platelets if he is under 10,000 but he got them this morning anyway. We have to wait until Tuesday for his next bili level but I am praying that it continues to drop. Otherwise we are just enjoying gazing at our little fighter and waiting for tests to roll in...
Rounds were pretty unexciting this morning. Oliver had a little blood in his stool early this morning so they are not going to feed him today in order to give his tummy a break. There is question about whether it's irritating his digestive system to have so much formula in my breast milk so when they start feeding him again they will lower the amount of formula they are giving him-which makes me happy because I really don't like having the formula in my milk in the first place. :)
Oliver's platelets were 11,000 this morning. The orders state that he gets platelets if he is under 10,000 but he got them this morning anyway. We have to wait until Tuesday for his next bili level but I am praying that it continues to drop. Otherwise we are just enjoying gazing at our little fighter and waiting for tests to roll in...
Saturday, February 15, 2014
February 15 - Weekend update
Mr. Oliver is just over 9 lbs. now! He has been more alert the last couple mornings and we've really enjoyed interacting with him. We have been blessed with fantastic nurses and the hospital tries to keep Oliver's nurses consistent, so they are really getting to know him-his likes and dislikes and can easily detect small changes in his behavior. He is in excellent hands!
I am beginning to second guess our decision to cloth diaper this boy...he seems to poop about every 15 minutes....something tells me we're going to be doing a lot of laundry ;)
Oliver's bili went down again today! His Doctors suspect his high bilirubin is from in utero hemolysis and bile sludging. My understanding is that this means there was an overload of blood cells and his spleen (and liver) were-and continue to be-overloaded with the task of breaking down and removing the extra cells. If this is the case, his bilirubin level should drop when his organs start to catch up and the problem should fix it's self.
We will be getting a new and improved PICC line-right now it's scheduled for Tuesday. Until then we are limiting the amount of blood draws...which means he will probably only have routine labs done until next week. Weekends drive me crazy! All the progress happens during the weekdays!!!
We got test results back today-not one positive result. I think HLH was a top contender but as far as I know HLH was crossed off the list today. We took him off the antibiotics, his platelets at 4:00 AM were 6,000, he received 2 platelet transfusions today and a blood transfusion (his blood count came back low this morning). Other than that everything is...exactly...the...same!
Sean and I are doing our best to be patient. We spend hours every day holding Oliver and smiling at his perfectness. He is quite the character and we love every minute of being his parents!
I am beginning to second guess our decision to cloth diaper this boy...he seems to poop about every 15 minutes....something tells me we're going to be doing a lot of laundry ;)
Oliver's bili went down again today! His Doctors suspect his high bilirubin is from in utero hemolysis and bile sludging. My understanding is that this means there was an overload of blood cells and his spleen (and liver) were-and continue to be-overloaded with the task of breaking down and removing the extra cells. If this is the case, his bilirubin level should drop when his organs start to catch up and the problem should fix it's self.
We will be getting a new and improved PICC line-right now it's scheduled for Tuesday. Until then we are limiting the amount of blood draws...which means he will probably only have routine labs done until next week. Weekends drive me crazy! All the progress happens during the weekdays!!!
We got test results back today-not one positive result. I think HLH was a top contender but as far as I know HLH was crossed off the list today. We took him off the antibiotics, his platelets at 4:00 AM were 6,000, he received 2 platelet transfusions today and a blood transfusion (his blood count came back low this morning). Other than that everything is...exactly...the...same!
Sean and I are doing our best to be patient. We spend hours every day holding Oliver and smiling at his perfectness. He is quite the character and we love every minute of being his parents!
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