Jameson has been doing so well with his sleeping and waking the past two days. Last night he slept through the night and he is still sleeping now. He wakes up and looks around for a few seconds and drifts off again. He is so stinking cute. We has also been having decent awake time during the days without a lot of pain. He still has his moments of stomach cramping, but overall, he is doing well with pain management. We've been holding him every day for an hour here and there. It is quite a production and takes a few people to hold lines and limbs and tubes to get him from the bed to the chair and back again, but it is well worth the effort. Holding him is such a gift and we are so thankful for every moment with our sweet baby J.
I jinxed him by talking about not needing blood products in that last post. Sigh. Later that day he had a bloody stool and needed packed red cells and platlets. He is getting platelets often, as well as chryo to help with clotting. He is still having bile and some bloody drainage out of his NJ (feeding tube) at times. Feeds are still stopped but I think the plan is to start up very slowly today and see how his gut handles it. I guess we'll see how that affects belly pain and cramping.
His white count is down to .3, which is really low. We suspect tomorrow he will be under protective isolation and everyone coming in will have to gear up in masks, gloves, and gowns.
Jameson has developed some kind of rash diffusely over the past few days and we aren't sure what it is or what is causing it. Go away, rash! We have enough to deal with already!
We still haven't seen any definitive signs that radiation has worked and Hubs and I have decided to hold off on chest radiation until we see some results from abdominal radiation. Jameson has so much wrong, but right now his lungs aren't part of the problem. And radiating them may very well take away his ability to ventilate well. At this point it seems the that the risks of radiation outweigh the benefits. Hopefully in a week or two or five we will start seeing positive results from the abdominal radiation and we can then start plans to move forward with chest radiation. We just pray Jameson can just keep fighting and give us the time we all hope will help. Hubs has read that it can take up to 6 months for radiation to start helping. God, please give us 6 more months.

Jameson likes his ketamine; it seems to give him that little something something to take the edge off, although I think he may be watching purple elephants dancing on the ceiling. He is dazed and confused for sure.
The GI doc came by yesterday and gave us a few more drugs to hopefully help with the abominal cramping and pain that amazingly still breaks through his arsenal of drugs. He is now on octreotide to help with the diarrhea and lomodal to help with the cramping. Feeds are still on hold but he may start trophic feeds again tomorrow or the next day. He'll be the only turkey in the room tomorrow. At least he is still allowed to have his lollipops and he loves them.
His NJ clogged and needed to be replaced yesterday. I was hoping the nurse would let him yank it himself but that would only reward sassy behavior. :) Maybe when he doesn't need it anymore.... The new NJ took forever to get in; J just wasn't cooperating. But we did get it in so he can at least get his oral meds. He is still bleeding out of it but the GI doc thinks scoping it would be too much of a risk at the moment; radiation has made everything inside very fragile. And he must not be losing too much blood because his platlets and hemoglobin were both surpisingly good this morning. I can't remember the last time we've gone 2 or 3 days in a row without getting something transfused. If you are looking for an inexpensive, yet priceless gift to give this season, please consider donating blood.
On Sunday Hubs and I both had a chance to hold Jameson. He was in a lot of pain that day and we were all hoping extra cuddles might help. I hope you enjoy the picture of me holding Jameson. I haven't held my baby since the beginning of September and it was wonderful and scary all at the same time. Then he got too hot and pooped so cuddle time was over. Hopefully we'll be able to hold him again when he is more comfortable.
Thank you for your prayers and love. We wish you all a Happy Thanksgiving!

J slept through the night last night now that his pentabarb is back up to higher levels. He needed three huge boluses to get him back down...it probably wouldn't even take one of them to put me out for days, but my kid chews through his sedation. He's getting bigger pentabarb boluses, on a higher pentabarb drip, and on a ketamine drip, plus they went up on his scheduled methadone and he is still on the highest dose of precedex available. And the fentanyl drip and boluses are also bigger...tripled, I think. Special K seems to be making the difference...that and the bigger fentanyl boluses.
The underlying issue- abdominal pain is still there...hopefully it will go away soon.
SuperDoc ordered an echo today and it turned out fine. We found out the tentative schedule for radation....next Monday he will have the planning CT scan and radiation will start on Wednesday. I think it is only 8 sessions this time. He now has two trees with 4 brains, holding 16 pumps, plus his vent so roadtrips to Abbott should be that much more interesting. Last time he just had one tree. I guess that is why the nurses get paid the big bucks. Ha!
He was in a somewhat happy place this afternoon and Hub's parent's loved on him while Hubs, Little Man and I went out to lunch with some family. It was so great to get out and have a nice lunch at our favorite restaurant, knowing that J was in an okay place. Hopefully the new drug combo will allow more uneventful days and nights.

J's had a really rough day. Sedation and pain have been a major problem over the past 24 hours. Jameson spent most of last night and today with heart rates above 180, sometimes up to 210. He has moments were he just writhes and is in so much pain and it happens so fast. It all seems to be related to abdominal pain. He seems to have some relief after having bowel movements but the relief doesn't last long.
We've tried upping his fentanyl and methadone; we have given chlorol, vallium, ketamine and nothing gives him relief for more than an hour. Even with both vallium and ketamine in his system at the same time his heart rate didn't get below 160 and less then an hour later he was back up to 210 and writhing in pain. Our SuperDoc is putting him back under with pentabarb. Which means we will probably be back on norepi for soft pressures shortly.
Jameson also started having blood in this urine last night and tonight he started having blood bubble(slowly but still a significant amount) out of his NJ (feeding tube). He is no longer being fed anything and they are running cultures on the blood coming out of him. He is also getting platelets and packed red cells right now.
We've done extra abdominal xrays tonight and SuperDoc looked at his heart with an ultrasound as an informal echocardiogram. She thought it looked alright so we aren't having a "real" echo done anytime soon.
Please pray that our sweet Baby J can get some comfort and relief soon and rest. Thank you for checking in and God bless.

Jameson slept all night long with only a few brief and calm wakings and he put himself back to sleep without needing any bumps or even hand holding.
Right now he is sitting up in his bed watching a movie. The intensivist last night found a pocket of fluid in his belly and went to put a new tube in but very little was actually in there so she just drained it with a needle.
Enjoy the picture and may God bless you!
 

The care conference went okay today. We had both our SuperDoc and SuperNurse there and it was wonderful to have their support and knowledge. It was good hear that everyone is on the same page and hopeful that radiation could still work.
Jameson's biggest issue is that his immune system and bone marrow are both compromised, but not from the radiation as I originally thought. It is from the lymphangiomatosis. He is leaking too many essential things into the chyle and then it leaves the body from the chest and belly tubes. As a result, the rebound we have been waiting for before radiating his chest won't happen. Instead, until his disease in stopped/slowed he will continue to become more and more immune compromised, which is already a tough thing as he is almost bottomed out. Infection may be one of our biggest fears and problems; if he were to get a bad one, it would be extremely difficult for him to recover. The plan is to start radiation of the lungs and chest cavity after Thanksgiving. Waiting longer only lessens survival chances.
We are also starting back up on the rapamiacin (sirolimus). I am at home with Little Man but it may have already been started back up today. This drug is immunosuppressive, so there is risk but we have to try everything to stop this disease. He has been taking the inferon as well over the past few weeks.
There are no other options left on the table. If sirolimus and/or radiation do not work as we hope they do, we will put a plan in place to keep him as comfortable and happy as possible and enjoy every precious second God gives us with him.
Please pray that Jameson stays well and infection-free. At this point, infection may even be a more dangerous enemy than lymphangiomatosis. And please continue to pray that radiation works and heals our sweet Jameson. God bless and thank you all for your prayers and love.
Addition: I just got off the phone with Hubs and J's belly tube has stopped working and was pulled out. He will most likely be getting another one put in tonight or tomorrow morning. Poor J.

Jameson has done alright over the past day. Still off the norepi with decent blood pressures. We are going down to 2.0 on the pentabarb today. Hopefully it will be a smooth transition. He does still have bouts of irritation and agitation and they do seem to correspond to rumbling and gurgling in his precious tummy. He is obviously experiencing pain in that region. But usually after a few minutes, it calms down a bit and he settles. He does need occasional bumps and he gets tylenol and chlorol at times and his precedex was upped again, but overall, he's handling the detox and pain fairly well.
Yesterday he was opening his mouth really wide and we noticed he has a brand new molar on the top. And later I noticed that he has two more on the bottom just breaking through. Poor kiddo. We tried baby orajel and he is not a fan, but I don't blame him; it tastes awful. He much prefers the jolly rancher suckers we've been giving him to lick whenever he sticks his tongue out. :) I don't know anyone who deserves a little sweetness more than Jameson.
He has needed blood about every other day and the docs are thinking that it is related to the belly chyle's brighter red color. It seems he is leaking a little more than usual. Not much we can do about it and I'm not sure if the output has actually gone up or not. Sorry.
Tomorrow we have a care conference in the afternoon with all of Jameson's doctors. I am a little anxious about it. Overall, we are in a better place and Jameson seems to be in better health than he was at the last care conference- which had me in tears for days afterwards- but we cannot deny that fact that his disease is still uncontrolled. Pray for us and for our doctors as we discuss J's health, options, and future.

Sedation and blood pressure issues....again. His blood pressures are still very soft -when he is asleep- but when he wakes up they jump up too high so he's on and off the norepi a lot(like 60s at rest and 160's minutes after waking). Last night SuperDoc started to change up the meds again so he is a little more even keel and the pressures won't change quite so fast.
Methadone was increased and dilaudid was also increased and is now given continuously instead of a just bumps when he gets agitated. They also went up on the precedex and down on the pentabarbitol. When he wakes up, he doesn't seem like he is in pain, but irritated and agitated. He seems itchy too and his eyes are really blood shot. Some of it may be withdrawal symptoms. Some of it may also be an inrritation to the dilaudid. Dilaudid is in the morphine family and morphine makes J throw up, so... The pain docs doubled his oral narcan to see if that will take away some of the itchines sand irritation. They are also looking into dilaudid a little more and possible solutions and alternatives if this is indeed causing his problems. The pain and sedation plan is a work in progress, as always.
Yesterday his belly fluid grew a culture. He may have a gram positive rods infection and we should find out more today. It could really be an infection or it could have been from a contaminate somewhere when culuturing. I guess this type of infection isn't very strong so it seems unlikely for him to have this on the antibiotics he is on. They took more cultures of the fluid and also took viral and fungal cultures to see if anything grows. Additionally, he had abdominal xrays last night looking for pockets of air but they showed nothing.
Mid-update- sedation woes continue. We're in the throes of pentobarbital withdrawal, sensitivity to dilaudid in the form of itchy eyes/face and probably nausea (similar to his vomiting episodes in St. Paul with plain morphine, but knowing for sure he is wretching with a trach and NG tubes is not perfectly clear). Yes, a crappy day so far as his breathing rate gets into the 50s, heart rate in the 180s, blood pressure in the 160s. Now it's a matter of adding more meds to try to mitigate the side effects before abandonig his current regimen of pain killing and sedation.

Jameson is having a bit of a rough day. He is having low blood pressures, 60's/20's so he is back on norepinephrine. He also having higher heart rates and fevers (above 39C) and showing some signs of discomfort during his more frequent awake times.
We all think it is highly unlikely that this is a result of an infection. Jameson just completed 8 days of vancomiacin and is still on mirapenum. But just in case, the intensivist ordered one more dose of vanc today.
It is a possibility that this is pentabarb withdrawal. He spent a long period of time in the pentabarb coma and it could be that we need to wean him a little slower. His methadone was upped today and he's been getting a lot of dilaudid bumps so we are able to keep him comfortable most of the time. He also his getting to spend more time on his belly, which helps(yay for flexitrach!). He saturates better and seems more comfortable whenever he has tummy time.
Hubs just took Little Man home to make snowmen and play outside in the winter wonderland and I'm going to stay here with J tonight. As we were driving in this morning and trying to stay on the unplowed roads, I was thinking about how the last time Jameson was at home it was "diaper weather." And now it is snowpants weather. This coming Tuesday marks 11 weeks in the hospital. 11 weeks since we've all been a family under one roof. 11 weeks since I've gotten to hold my baby and see him smile and make him laugh. I am so grateful we have this time here for Jameson to heal and get better, but, man, I'm really looking forward to bringing him back home as soon as possible.

Flexi-trach is in! As in, in Jameson's throat. And everyone loves it. Especially Jameson. And it is just in time since he is starting to have some awake periods. Not much yet but we are lightening sedation this week. It will take a full 8 days to wean off the pentabarb. He was up to 4 mcg/hr and they can knock off 0.5/day. He's now on methadone and we gan give him boluses of diluadid if he needs a little something something every once in a while. Hopefully the waking up of our comatose baby will go smoothly. The last time we switched everything up was a disaster but I'm hoping that now that his trach is finally healing well and more comfortable that he won't be in as much pain. He will still have loads of pain for a while- chest tubes are excruciating and I imagine a belly tube isn't much better.
Oh and speaking of that peritenial drain (aka belly tube), the nurses have had a hard time pulling fluid off so they put on a gravity drain so it can flow as needed. It is different than the chest tubes because there is no vacuum seal, no extra help. Just a tube with a urine bag at the bottom.
And speaking of urine -he has been a peeing machine. We are getting out good amounts; so much so that the bumex has been dialed back down. The stool is also on the move so J is doing well with removing the fluids, etc that need to go. He still has some cheeky jowls but the cankles aren't bad. And for the record, the cankles were never all that bad, but the word is way too fun to pass on... In just two days, he is down 1 kilo. Still has some to go to get to his normal weight, but this is a great start.
Still no change on the chyle output. I am trying my darndest to be patient but that one is difficult. I suppose as long as he is venting well and staying stable, I'm glad we have the time and happy to wait but at the same time, oh, it would be so sweet to see it go away and not come back. But we do have time right now. His lungs are happy; not happy like he can come off the vent happy, but he has been satting well. Today he has been down to 40% fiO2 and he was satting in the mid/high 90's. At one point when Little Man was telling him stories about crazy legomen getting eaten by sharks he actually got up to 98% satuation. I took a picture of the monitor to prove it but left the camera at the hospital. Patience isn't my virtue of choice, but I'm happy to wait and see as long as we are in this good place. I am learning a bittersweet benefit to the patience lesson; waiting is good because that means J is still here and in a critically stable place.
We had a really special visitor today. Very special. One of our intensivists introduced us to a healthy, beautiful, and vibrant teenage girl and her sweet father today. And it was so wonderful. Wonderful because she is beautiful. And vibrant. And healthy. And last year she was in the PICU with 6+ chest tubes and almost on ECMO. And not able to even speak. And she has lymphangiomatosis. And today she was here for a check up and xrays, etc to see how she is doing. But you don't need to see her bones and pleural spaces to see she is alive and well and thriving. She is a glorious miracle. The same miracle we are praying for. And while every case is so different with this nasty disease, it gave us another glimmer of hope. Some people do pull through the darkest times. Some people can survive. Miracles do happen.
And no matter what happens with us, no matter how this all turns out, please pray for a cure. Because we are just one family that you know of out there, struggling to understand, struggling to survive, struggling to hope. But there are many more out there fighting this daily battle and hoping for a miracle too. So in 6 months, and even in 6 years, please still think about J. But not just J. Think about this other beautiful, amazing young woman and countless other families who are losing their mothers and fathers and spouses and sons and daughters. Think about the families who have already had to say goodbye to their beloveds. And please, stop and say a prayer for peace and healing and for a cure.

Today was the last day of abdomen radiation and it went well, with no hiccups. Now we wait and hope for the best. We don't have a plan for the chest yet; I think it really depends on how fast his body rebounds from this radiation.
His weight is up even more today. Yesterday he finished the day fluid positive(over 700mL) and even with his bumex doubled he still isn't peeing as much as we had hoped. He has so much extra fluid in his body and the edema is just awful. His skin feels like jello; it is the first time my skinny boy has ever has jowls and rolls...rolls of puffy, fluid-filled skin. Everywhere. To the point that he may even be bruising from the edema. Cankles, jowls, shoulders, arms, legs...you get the point. Poor J.
One of our intensivists who was not working today stopped by to chat and get some candy this morning and Hubs mentioned a new belly tube might help since the old belly tube is old and not working. He popped right back in the room with an ultrasound machine and put a new one in right then and there. And promptly pulled off 200mL plus whatever initially came out when they put it in. That candy basket is worth the money! :) Hopefully this new belly tube will make Jameson a bit more comfortable.
Sedation is hopefully going to be lightened tomorrow. We really want to get Jameson as awake as possible and get him using his body again. He has been heavily sedated and paralyzed for most of the last 2+ months and has very little muscle-power left. Even his bowels have fallen asleep from the sedation drugs and we need to get this boy up and moving a bit so we can start back on the road to recovery. The physical therapist and I were talking this morning and she said it typically takes kids 2-3 times as long as they've been sedated to get their muscle strength back to where it was. That means it will take about 8-12 months to get J walking and running and climbing again. We start slow with baby things, like tummy time and learning how to roll over again. I can't wait to get to the point where that is what we can focus on.
One of our specialists came in to talk with us this morning and wanted to get a feel for how we are feeling about everything. Basically it came down to wanting to know if we were still hopeful or giving up on the idea that this could still turn around. While that may sound really callous, it is a valid question. A few weeks ago we had a care conference with all of our specialists and there was very little hope left for our sweet Jameson. It was to the point that they flat out said they would understand if we decided to let him go that day. Yes, it has been that bad. And every day, we are aware that he is here by the grace of God(as we all are...) and it could take a turn for the worse at any moment. Her questions kind of caught me off guard because -while nothing with his disease has actually improved- J is doing okay and we are still in experimental treatment. Of course we still have hope! I guess in a way, getting grounded once in a while isn't a bad thing but it does carry a nasty sting. I do still hope and believe that we can beat this -even if only for a few more years- but I want to be realistic too. J has been diagnosed with a terminal disease and he has been fighting for his life for over two months. How do you come to terms with that? Right now, hope and faith are just about all that keep us going. We hope radiation works. We hope his body heals. We hope his lungs strengthen. We hope a freak infection doesn't sneak in and ravage his body. We hope he keeps being the amazing fighter he has been. And we hope this buys us enough time for a cure. It is a tall order and he has already defied all the odds by making it this far. Jameson is a living, breathing miracle and I have faith that God can continue this miracle. And I hope that is the plan.

Jameson did well on the radiation trip yet again. We made it there and back uneventfully and tomorrow is that last day of ab zapping!
He is saturating well- 95% at 55%fiO2. Not too shabby.
He is still showing signs of infection even though nothing has grown on any of the cultures sent out. He is now ruddy again just like the last time. He hasn't had a fever in over a day now. We just don't know what is going on with him. He is on vancomiacin and mirapenum (heavy duty antibiotics) and it is causing some kidney distress. His creatinine was up to 1.2 and BUN was also high...I'm blanking but I think it was in the 60's or 70's. And I can't spell medical terms- sorry to all of Hub's friends.
The past few days he has been very fluid positive which isn't great. He is getting bumex(to make him pee more) but every day for the last three days it has leaked at one point or another...we've had these problems in the past and J's bed and floor have been heavily medicated during our stay. He also isn't pooping much. We had a few days where it was looking better but not enough is coming out of J. His chest tube sites are putting out about 1/2 of what they used to hourly and today they haven't been able to get anything out of his belly and just 2 days ago they were pulling out 400mL at a time(every 8 hours). While this at first seems great- maybe he isn't making the fluid- it isn't the case. He is up almost 2 kilos in weight. So, the pee, poop, and chyle are in there and just not wanting to leave his body. I don't get it.
Sigh, at least he is breathing better... With Jameson, if it isn't one thing, it is three others. My poor baby. The other day when he was in radiation I just dropped to my knees in the middle of the room and begged God to please heal Jameson and let us keep him for so much longer. On the way back to his room from that trip he started breathing better. I believe with all of my heart that God hears me and loves me and loves Jameson. I believe that Jameson will live. But I can't help feeling bad for all of his suffering in the mean time.
After radiation, Little Man and I went to the Como Zoo for the afternoon. We enjoyed watching the polar bears and giraffes. The last time I was at the zoo, Jameson was with us and we had a wonderful time and picnic lunch with great friends. I can't wait to get back there with both of my boys next summer.

 
Jameson has had a big morning! Daddy actually held him in his arms without even sitting in a chair. I think they both adored it equally; Jameson gave his first big smile since we've been in when Daddy put him down- almost like saying "I loved it, Dad!" It was the most beautiful thing I've seen in a long time. Then he watched Toy Story 3 in his little red chair. Okay, he slept through most of it, but I know he loved it. Then PT came by and we got him sitting up on the edge of the bed! He doesn't have the torso strength yet, but he was able to hold his head up by himself and move his arms and arch back a bit. He continues to absolutely amaze everyone with his strength and feistiness. I am SO proud of my boy! After that he fell asleep and slept through Santa's visit, but we can show him the picture later. :)
The liver is the biggest concern of the week. The echo turned out fine and today he had a dopplar of the liver and the flows were all fine. His liver function is fine, but it.is.huge. And it got huge fast. No one understands what is going on with it. Could it be a drug toxicity? Or a delayed reaction from radiation? Or could the lymphangiomatosis be the cause? Those are just a few of the many questions our team of doctors is researching and mulling over. SuperDoc really wants to get a biopsy to see if that tells us anything about it. We aren't so sure about that yet and need to think about it and hear a little more info from our specialists first.
His girth and weight are still way up. He is up to 17 kilos and his dosing weight is 15 kilos. (They actually just upped that yesterday, the original dosing weight when he was admitted was 13 kilos.) He hasn't been peeing well and had to get the catheter put back in last night. It is helping but he is still fluid positive again today. He hasn't stooled since yesterday. Hopefully we can empty him out a bit and get that girth and weight down. Please pray about that liver.
Hubs and I are humbled and grateful for your continued support and prayers and love thoughout this rocky time in our lives. We appreciate each and every prayer you say for our amazing Jameson and for our entire family. Thank you so much and may God bless you as well.

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