Just a quick update to calm nerves! J has had a great weekend. He has been breathing well on the vent and even got down to 35% fiO2 for a bit Saturday! He's been at about 55% fiO2 all day today and satting in the 90's. Good things! His blood pressures started to go low Saturday and last night they started to get too low so he is now on norepinephrine(sp?) and doing great on it.
His heart rate and temp also went up, up, up Friday night. He hit 38.9C and it now on the heavy hitting antibiotics again. They are also running cultures on everything, but just like the last time he was septic, no one is expecting anything to grow. J is a mystery! The only great thing about the fever is that his saturations get better. At one point when he was hot (38.9) he actually satted 100% on 60% fiO2. Wow. 100%. Awesome, except for the whole high fever thing. But today he has been good on temp and saturation. And the Vikings won in OT. We were so excited and celebrating so much the intensivist actually came in the room to tell us to quiet down. Not sure if he was kidding or not. And our Supernurse wore her AP jersey. Loved it. We actually have Supernurses on during the day and at night this weekend. Awesome. So yes, great news all around, minus the possible infection thing.
Really excited to get to Wednesday and not have fieldtrips for awhile. Not sure what the plan for lung radiation is yet but as soon as we find out, we will let you know. At this point, he is in slight bone marrow failure from the radiaiton and some of his medications so I think we have to wait until his marrow gets a little better before we can start the lungs. Hopefully by that time we'll see reduced belly fluid and see that radiation is working for our little man!!
Oh! I almost forgot! Other big news from the weekend is that when Hubs was gone, I cut Jameson's hair a bit. Hopefully this week on the road, people will stop whispering about "the sweet baby girl" in the hallways at Abbott. Seriously. Even with long hair he looks all man to me, but I caved and cut. He still looks super cute and I'll have to take a picture and post it to prove it. How could J ever not look cute. :) So much for a quick little note....hope you all had a great weekend!! Love, Meghan

J has a rocky night and morning as far as oxygen saturation goes; He was sitting at 100% O2 and still desatting this morning. Last night he spent most of the night on his tummy and even that way they couldn't get the O2 below 75%. But we still went to radiation as planned and now he seems to be doing a little better. He is down to 65% O2 and satting 89ish on his belly. No other news. We are hoping and praying for a very quiet weekend. Monday and Tuesday are the last radiation days for his abdomen. Hopefully soon we will start seeing signs that it is working.
We wish you all a blessed weekend and hopefully you won't hear anything from us until after radiation Monday. :) Happy Friday

Tummy time was good for J all afternoon and he was stable enough to head over to Abbott for radiation. Praise Jesus. We just got back and he's doing alright...still not great, but I'll take what I can get. He's not desatting but still at 80% O2. Hopefully we can get down to at least 60% by bedtime and then get to stay there or keep going down. The past few days I've been having awful dreams about coming back to see J and having ECMO back in the room. I sure hope his lungs can strengthen up and heal on their own so we don't have to head back down that road again.
Nothing new to add, still issues with poop, gas, and chyle. I know it can take a few weeks but I'm anxiously awaiting positive results from the radiation. This just has to work!
Our lovely nurses are doing their best to untangle Jameson and get him settled in for the night. I'm always amazed at how awesome the staff is here. Team J rocks, bigtime.

We are still having saturation issues. J is on 100% O2 and still desatting. While he isn't setting the alarms off he still hasn't gotten above 89 today. Crappy.
Even with colon cleaner he still isn't having great poop either. Right now he isn't stable enough to go to radiation so we've rescheduled for 4 pm today and the goal of the day is to get him stable and satting at least above 85 consistently and not on 100% O2 so we can keep his appt. His girth is still up- 61 cm. We are checking abdominal pressure right now and will probably be getting an ultrasound to see if there is a fluid pocket the abdominal drain can't get to. If so, he may take a quick trip to the OR to either get a belly tap or another belly drain put in. Joy. Okay, just got the pressure and it was fine, so this plan is on the back burner...we are going to turn him on his tummy right now to see if that helps and try to pull more fluid off the belly drain.
Today is green day at school for Little Man and we are both decked out in some great Irish green. I'm praying for the luck of the Irish to be with J today. We know that we have a great medical team and powerful medications and procedures to work with but only God can save. Ultimately, His plan will prevail and His plan is good. We cannot praise Jesus for the good in our lives and curse him for the suffering. He is the same God today as He was the day he gave us our Baby J. And I am thankful for that. I praise Him in this storm and pray that he sustains our family, heals our Jameson, and that all of this suffering and pain will ultimately glorify Him. And today we have extra prayers for lungs to work. Thank you for praying with us and for us.

Today was a little rocky for the travel. Nothing bad happened but his saturation levels have been down for the past 24 hours and we just can't seem to get him ventilating as well as we want him to. During his roadtrip, he was on 100% O2 and only satting in the 80's. Not that we are back in the room and settled in bed he is down to 70% O2 and satting high 80's/low 90's. I would love to get back down to the 35%O2 we were at a few weeks ago.
No one knows for sure why he his lungs are being slightlly naughty but it probably has a lot to do with fluid, gas and poop. His girth is up to 63cm and it needs to shrink! We need this boy to poop and fart. And stop making chyle. Hopefully today we will have some good luck with cleaning the system out and his saturations will improve.
Little Man asked me at lunch if today is Wacky Wednesday...I sure hope you are all having some wacky and silly fun. We are watching Veggie Tales with Jameson; he is sleeping through it and hopefully Little Man will follow suit. Have a wonderful day and God Bless!
Meghan

We are back from radiation again today. Today was day 7 of 12 and again it was a smooth ride. Tomorrow the Radiation Oncologist will decide if we need to complete all 12 treatments or only do 10 treatments. From the information she gathered at the Boston conference, it sounds like not everyone required as much radiation as Jameson is getting so she is hoping we can cut it short. However, in order for that to happen, we actually need to see improvement and see that his body is not producing the chyle in such large quantities, his girth goes down, and his overall condition starts to improve. As of now, that hasn't happened. Jameson still has a very large girth, is still requiring a number of transfusions(mostly platlets), and still have a lot of chyle pouring out of his chest tubes and belly tube. I would be shocked if they cut the treatments to 10. We are still optimistic that radiation may still work, though; sometimes it can take weeks after treatments have ended before things start really turning around.

Chances are we will start radiating the lungs before we even know if the belly radiation has worked. At this point, we are just so happy that Jameson has remained critically stable. This is the longest stretch we've had since he's been in the hospital where we haven't seen deterioration; there hasn't been any dramatic improvement, but as long as we don't start sliding backwards and his pain is under control, we are happy to have the time to wait it out and see if something begins to work. And pain and sedation have been managed wonderfully this week. Jameson is really under with his pentabarb and precedex and very comfortable. Most days, he just sleeps with an occasional eye opening, lip flutter, or finger squeeze. He isn't really awake at all, but he isn't in pain either. No teeth grinding, no grimacing, no writhing. It is a relief for everyone.
I'm at home with Little Man right now. He has really been struggling the past few weeks with our family situation. I think the stress of everything and the lack of normalcy has really caught up with him. It has been over two months now. Yuck. We are really trying to spend more time with him and have him at the hospital more to see his brother, but it is difficult to ask a 4 yr old to sit on a couch in a room and talk and read books to his sleeping brother for long periods of time. We have started to embrace family movie time at the hospital often; Little Man's brain may just need a little rotting in front of the TV during this time so he can be close to his brother and get extra snuggles with mom and dad. One of the things he seems to struggle the most with is sleeping at night. He and J share a room and he really seems afraid of sleeping alone. We have totally upped snuggle and story time, but I have a hard time deciding when to stick with the rules and when to be a softy...I just keep praying I'm doing the right thing and don't screw him up too much. It is so hard to have my babies in two places. I can't really be with both of them at the same time and I have such guilt and anxiety about the one I'm not with whenever I'm away. I logically know I'm doing a good job- at least the best I can, but it still pulls at my heart strings and I feel so badly for Little Man.
There really isn't any part of this whole thing that is easy. I'm so glad God is carrying our entire family through this time, because I'm not this strong on my own. Hopefully this radiation will start to work and we can start thinking about bringing J home and being a family under one roof again.

Again, sorry for not updating earlier. Jameson has had a good day and did really well on his field trip to radiation. We are now halfway done with ab zaps! My mom went back home for a few weeks so we tried taking Little Man along for the ride today and he did really well. They sweet ladies in radiation oncology even let him pick out some sweet treasures and stickers for himself and J. Then we ate lunch together at the cafeteria and Little Man watched a movie in J's room while I got in my kisses and love with J. The highlight of the day was putting Jameson on his tummy. It was awesome! First time since we've been at Minneapolis Children's that J's been flipped over. Our Supernurse made it look so easy too. Why, you may be asking, is it difficult? Well, first off his trach site still isn't healed all of the way and very sensitive and needs to be kept pretty still and straight on. Secondly, chest tubes with drainage lines hooked up to large suction/storage containers. Thirdly, IVs and lines everywhere. J's on a tight leash. But she did it and he promptly feel asleep and seemed oh so happy to be on his belly. Hopefully we can do this almost every day.
Thank you for checking in. God Bless! -Meghan