In Lieu of Flowers

Yesterday I contacted Reece's Rainbows to let them know that we chose their charity to honor the memory of our beloved Jameson. I just want to share with you all that all donations given in honor of our Jameson with go into the adoption fund of their little Jamison. He is also 3 yrs old and I believe he is in a Russian orphanage, waiting for someone to want him. He is waiting for a family to love him and claim him and bring him home. I feel so much joy in my heart as I see the way God is using our pain in such a beautiful way to help others. This little Jamison deserves to experience the same love and life that our Jameson knew and I love that we have the opportunity to help in that process.
http://reecesrainbow.org/jamison-3g

Little Man asked if we could bring him home since J is in heaven. He is having such a difficult time understanding what is happening and why he feels the way he does. He was extremely concerned that Jameson has no toys in heaven. We've started a little "game" with him whenever he gets really worked up about Jameson. We think of what J is doing in heaven right now and present Little Man with wonderful pictures of his brother playing on the beach, making sand castles with Jesus or eating chocolate milkshakes with Great Grandmas and Grandpas. It is actually nice for me too. Everyone keeps telling me that this is the hardest time and it will get easier. I hope it gets easier for Little Man too.

Home

Jameson went home this morning. He is now in heaven; a prince living with the Prince of Peace. We rejoice in knowing that his suffering is over.

We want to thank all of you from the bottom of our hearts for your prayers and support over the past 4 months. As soon as we make arrangements, I will post information. Today we are with our families remembering and celebrating Jameson's life. God bless you all as He has blessed us. And Jameson, welcome home.

Jameson is still hanging in there. He has horrifying amounts of edema all over his body but we are able to keep him comfortable with the pain medications. He is still breathing well and able to crack his eyes open and squeeze our fingers once in a while. Yesterday Little Man opened most of his presents at the hospital and we both came home with him for a bit last night to play and tuck him in. I am still at home and we skyped with Daddy when Little Man opened more presents and his stocking from Santa this morning.

I am trying to focus on the true meaning of Christmas more than ever this year. We celebrate this day because our Savior was born on this day. Because He came and lived on this earth and died for us, we have redemption. God is the only one who can redeem us, redeem this nightmare we are living, redeem our broken hearts. And so today, I will do my best to overlook the pain and sadness that accompanies this Christmas and focus instead on the beauty and love of Jesus' birth. Merry Christmas; may you find peace and love in your hearts on this special birthday. Love, Meghan

Jameson continues to amaze everyone with his strength and determination to do this his way. He always has been an independent child and that hasn't changed one bit. He is quite sedate, but today he has been squeezing our fingers and trying to open his eyes to check us out when we talk to him and sing to him. Hubs and I spent hours last night cuddling with him and remembering all of our amazing and wonderful adventures over the past three years. Jameson has had such a full and wonderful life; while we will always regret J not having a future here, we have no regrets for the past three years. Jameson fully knows love and happiness and fun and adventure. He has camped, swam in oceans and lakes and rivers and fished and canoed and enjoyed smores and dinner parties and campfires and rainbows and friends and fireworks and walks and waterfalls and cookies and State Fair milkshakes and Disney and Gator football. He's been to Alaska and seen whales and bears and moose. He has a passport and has been to Canada and gone boating in some of the more beautiful places on this earth. He has a best friend in his brother and life has been one big sleep over party for the two of them. He's enjoyed cheesecake and souffle and eggs florentine and cheese curds and birthday cake. He's had too many dance parties to count and spread more sunshine and smiles than I ever thought was humanly possible. Last year he even had a modeling shoot with Target. Today a wonderful person at Target emailed me the photos from his shoot. The picture above is my favorite. He is a natural in front of the camera.
Here are a few things from this week that have made us smile. We let him pull out is own NJ tube. He has been trying to rip it out since it went in. We also gave him some chocolate ice cream. He liked licking his lips but wasn't able to swallow it. And every day this week he has gotten to snuggle with his brother and watch movies together.

Yesterday morning our pain specialists did indeed have some new ideas and Jameson has been much more comfortable. We added versed back and went up on the pentabarb and the fentanyl. While this could never be easy, we are glad to have him pain free. He is -in true Jameson fashion- doing this his own way. Hubs has been reading his favorite books to J and we have been holding him and snuggling him all of the time. Again, thank you for your continued prayers and support. God has blessed us to have such wonderful friends and family.

We've had a lot of family in over the past two days and it has been good and sad and helpful and sad. Little Man has spent a lot of time here and he loves being with his brother. Jameson and Little Man are best friends and it just shatters my heart when I think of what we are going to have to tell him. I hope he is able to heal and have happiness easier than we will. I feel like for me the fog started to roll in yesterday and I am just so very sad. So very sad. I have this thing in my gut and sometimes it moves into my heart. It feels like a black hole and at any given moment I feel like I'm either going to vomit or implode. And it is so hard to breathe. I look at J and I just don't how we will make it without him here. He has been nothing but joy in our lives and I don't see how the world will ever have the same appeal ever again.

Last night and today have been painful for Jameson. We've had to up his pain meds and give him a lot of bumps. It is so hard to see that he is suffering. Even more then I want him to live, I want him to not suffer. And every time he grinds his teeth I feel my heart breaking and I'm always surprised because it already feels like it has been crushed in a grindstone. How are there even pieces left big enough to break any more? Tomorrow our pain team may have some new ideas to keep him more comfortable. I just don't want my baby to suffer any more.

We have had some good moments over the past two days. Hubs held him yesterday, I slept with him last night and probably will again tonight. Auntie K and Little Man both had turns snuggling with him in bed today too. And Little Man got to take his brother for a wagon ride. It was beautiful and heart wrenching. J is still sleeping in the wagon right now. He loves it! Geez, I wish we would have though of this sooner. We are savoring every moment we have left.

I think this might be the second most difficult entry to write, the most not being here yet. Jameson's doctors met with us today and we talked about his declining condition and his failing liver and kidneys and there is nothing left they can do. My baby can't be fixed. He is broken and only God can fix him and it looks like His plan is to fix him in perfection where I can't go yet.
We aren't sure how much time we have left; he may be in the beginning of multi-organ failure or it may be an infection that is causing his liver and kidney distress, but either way, it isn't good for Jameson.

We are still praying that God will heal him miraculously on this earth and we are still treating him and hoping he is able to muster the strength to come back to us. My God is good all of the time and I am so thankful and honored that he chose us to have Jameson. I don't blame Him for wanting him back so soon; my son is the best gift ever given. Thank you for your prayers and support; we need it now more than ever.

Jameson's effusion did not grow so he will not being having a chest tube placed today. The intensivist checked it out on ultrasound and the fluid he did find appears to be loculated, meaning there are little pockets of fluid, not just one big one. That makes it much harder to drain. Since Jameson is ventilating well, it isn't worth the risk to go after the fluid today.
The docs are going down on one of his IV diuretics today. He is peeing great, but his body isn't doing it the right way. His kidney function is decreased and he is intravascularly depleted. Basically, the diuretic is pulling the fluid from his veins and he is peeing it out and his body is supposed to be then pulling fluid into his veins from all of the extra places he has it to replenish the veins but it isn't doing that. The edema is still there and he needs blood to replenish his veins. He has gotten platelets, chryo, and packed red cells this morning. His body isn't cooperating and it is hurting his kidneys to dry them out this much. Hopefully his kidney function will improve now they we've backed off on the diuretic a bit.
His coags were all off this morning and the intensivist said it can be caused by a few different things. Infections can cause coags to go crazy and so can liver disfunction. I'm really hoping it is just infection. That liver scares me and so far it has been big but still functioning fine; that has made the docs scratch their heads, but no one has been really scared about it it yet. However, if his liver function is truly diminished, that is another story. The liver isn't something we can mimic with technology and it would be very scary and devastating if his disease is causing his liver to fail. We are all hoping and praying that is not the cause. Again we wait and pray and hope.

Jameson has been running a fever all day today. It got up to 39.6 and has been above 39 all afternoon even with tylenol and ice packs. His heart rate has been high all afternoon despite bumps and his CRP is up again today. The docs have switched around his antibiotics a bit. The vancomiacin is on for 9 more days and they've added mirapenum as well. They also added an antifungal but I forgot the name. Sorry.
He also lost his NJ tube (clogged up) and is in the process of getting a new one. Right before the new one went in, we were suctioning and he vomited. A lot of what came up was mucous and secretions and he may have aspirated some of it but Dad kept his cool and kept right on suctioning through it all. He seems to be doing better now; he may have gagged when coughing, not sure.
He has been fairly agitated all day long. The upside is that J is no longer alarmingly lethargic. Everyone is pleased to see him awake and alert; he no longer seems to be "out there" all of the time. I just hate that agitation and pain seem to be what brings him back to reality.
We anticipate the surgeons putting in a left chest tube tomorrow but we won't know until we see his morning chest xray. They may try to do it bedside, which is preferable. Hopefully we won't have to take a field trip to the OR.
Hubs was so relieved to come back and see Jameson and not have this big test looming over him. He passed the test, praise Jesus! I just sent him home to eat, relax, and sleep.

Take Two. The effusion is up on the left side so a different intensivist is going to try to put a new chest tube in in a few minutes. Please pray it works so we don't have to head to the OR today. I will update when I get news. Thank you so much for all of the prayers this morning!

Update:
 He couldn't get in it. Sigh. But the ultrasound didn't show a large pocket of fluid anywhere and he is still saturating well so the plan is to wait and see how it looks tomorrow and if it is bigger, Jameson will most likely head to the OR. He has been poked so many times and has had three attempts to get chest tubes in in just the last 24 hours. I'm so glad we have great pain meds.

The intensivist was able to rewire the subclavian and put in a new right femoral line to replace the left one. He couldn't get a chest tube in the left side and when he ultrasounded it, he didn't see a lot of fluid so we are going to monitor carefully for the next few days and if he needs another left chest tube, he will try again or let surgery try in the OR.

Sigh. Jameson's left chest tube fell out sometime in the last day and he is in the process of getting a new one put in. This will certainly set him back a bit; chest tubes are excruciating.
He is also having his subclavian central line rewired and a new femoral line placed. If he can't get it in, the intensivist will rewire the existing femoral central line. The infection is culturing from both lines and not clearing even with high doses of vancomiacin, so the lines have to go. Replacing the subclavian is too risky with his edema so hopefully rewiring it will do the trick.
He slept most of the night but was agitated while stooling this morning. He had another big one today with more tissue. His temp also spiked up again this morning to 39 and he still is having green goobers from his trach when suctioning.
Little Man is home with a cold and Hub's final exam starts at 8 am tomorrow morning. I'm doing fine, just tired and wondering when we get to catch a break. When you carry a burden this heavy, it still weighs you down, even when someone else is carrying you. I know God is carrying us through these times and we will survive, but will my shoulders ever feel light again? Ever?

Jameson is still sleeping all of the time. The intensivist is a little nervous about it as he is so sick and has that infection. The nurses are taking cultures from both central lines daily to check on the staph. (He has a triple lumen in his left femoral and a double lumen in the right subclavian.) If this infection doesn't clear up soon, they may have to give him all new central lines. He's had a few since we've been here so it won't be an easy task; his edema makes it even more difficult and riskier. Hopefully we won't have to cross that bridge.
Jameson is still way up on fluid, but thanks to stooling over 500ml today he is negative on the day. He passed a good amount of tissue in his stool. Everyone is always so disappointed whenever there is tissue as we all keeping hoping the worst is behind us. The only good thing I can report is that there was not noticable pain this time. No rise in heart rate, writhing, cramping, rumbling, nothing. In fact, he just slept through it. Because he sleeps all of the time. We have gone down on all of his pain and sedation drugs and it doesn't seem to have made much of a difference. The fentanyl will be gone tomorrow, the pentobarb will be done on the 28th. The precedex is getting weaned and is scheduled to be off on Christmas day. I don't think we will be off the ketamine(which will be weaned the slowest of all) for a long time. But at least we are able to start the weaning process. I just wish is meant he would be more wakeful, not more sedate. Wish we knew why.
We have maxed out the bumex to get him peeing and it wasn't enough so dopamine was added to raise his pressures up enough to make him pee. But it wasn't enough so a second iv diuretic was added. And now he is peeing. Fluid is much harder to take off than put on...just like those christmas cookies are for me. :) I digress, but I think the Ronald McDonald House's goal is to make all of us moms fat and happy. We've had 2 fluid negative days in a row and his weight was down to 17.9 kg this morning from 18.5 yesterday. Now to get back to that 15kg weight... He still is super puffy and his lungs are still having a hard time working as well as they were before; he really needs to dry out!
In liver news, his ferritin level just came back today at 9899. If you remember last Thursday it was 2850. Hmmmm. No idea. Haven't had a chance to talk with the docs about it yet.

Still huge belly, still not peeing well, still very, very sleepy. Docs went down on the precedex again tonight to wake him up a bit more, added dopamine to raise his blood pressure to hopefully help him pee, and we are venting his NJ at awake/moving times to hopefully help gas escape. His girth was up to 70 this morning. I gasped when I heard that. When we were first in St. Paul, I remember getting close to 60cm and thinking holy huge belly! and now here we are at 70cm. I think that is almost my waist. And I'm like 3 feet taller than him. We will probably be getting an ultrasound to check out the contents of the abdomen; if there is ascitis in there, a belly drain would be a quick and slightly easy way to relieve pressure and take off fluid. Every time they've looked in the past two weeks there hasn't been much ascitis- which is great- but that means the rising belly is a little more complicated and not as easy to shrink. I think Jameson gives his doctors headaches. His parents too. :)
I do have some good news to share! The staph infection is not a bad one!! Thank you, Lord, for answering this prayer! The vancomiacin should knock it out soon and hopefully he will recover quickly. Amen!
I am back at the hospital and plan to stay here until Friday so Hubs can have more time to study and concentrate for his test. His big final is Thursday(16th) and he needs all the prayers he can get. Thank you for praying for all of my boys. I feel somewhat rejuvenated after spending a few days at home. Playing in the snow, snuggling with my Little Man, Mom and the dogs on my own couch, and sleeping 12 hours a night(seriously) fed my body and soul. Your love and prayers have helped as well. We are always so humbled and amazed by the love and support you all give to us. From stangers praying for our family, to neighbors we barely know but already love snowblowing out our driveway 3 times in one morning thanks to the plows, and everything in between, we are so utterly thankful. God has surely blessed us; through you, we see Him as we walk through this valley. Thank you and may God bless you as you continue to bless us.

Jameson is not having a great weekend. I'm at home with Little Man and getting short reports from Hubs, so I can't share in great detail, but from what Hubs has said, he is +300 fluid positive today and he keeps desatting even though he is now up to 55% fiO2. He has been at 35% fiO2 for weeks and saturating around 99%. And now 55% fiO2 isn't good enough to keep his saturations above 88%. Gah! Part of that is becase he has so much extra fluid in his body, but certainly part of it is because he is sick.
His blood culture from yesterday grew staph. We won't know what kind of staph it is for a day or so. Some staph is very resistant to antibiotics and that would be really, really bad. He just started vancomiacin again today to hopefully treat the staph. God, please let it work.
He also isn't peeing well. Part of it may be pressure from the extra fluid. He has never peed well when he has a lot of pressure from a full belly. But it could also be because he is sleeping all.of.the.time. Part of that is probably because he is sick and needs his rest. But we need him to pee so the docs are planning to go down a bit on his precedex. He is very sensitive to precedex changes...he is so sensitive to all sedation/pain changes, God help him.
He was doing so well and now things are kinda scary. Please pray that he heals and pees and breathes well and his liver shrinks and his radiation enteritis goes away and his bowels heal and that radiation worked.......... He is still in a critically somewhat stable place, but he can crash so fast. It just haunts me to think how fast we almost lost him in September the day before his birthday. He was doing okay and 4 hours later he was on ECMO and the doc was telling us he just barely made it.
Thank you for your prayers. I know God is in control and I know he listens when we pray! Lets make sure he hears us with J's health needs tonight more than ever!!

Yesterday Jameson slept away the day. Everything was great except that he was fluid positive. Hubs and I have been very concerned about keeping him even or negative every day; the fluid has to go somewhere and his abdomen is already really full of bowels and liver, so that leans towards fluid going into the lungs. His breathing volumes are down already today so SuperDoc is ordering a chest xray to see if that shows anything. We also realized this morning that he wasn't getting the correct amount of bumex over the past few days and that is one reason he has been fluid positive. We are so frustrated that our child has gained over 5 extra pounds of fluid on his tiny body in the past two days because the pump wasn't running at the correct rate. SuperDoc upped the bumex and hopefully it will come off soon. Fixable, but also totally avoidable. Grrrr.
On the liver front I need to pretty much retract my entire last post except for the edited part that it could be something different. SuperDoc, hematology, and a liver specialist from a different hospital have all looked at his info and tests and none of them think hemochromatosis is a slam dunk at this point. They aren't sure what is going on, but since his liver function is fine and some of the other more worrisome labs are coming back fine, they all feel that we have the time to wait and watch for a while. But a liver biopsy is still in the back of their minds. So we wait.
A trach culture taken yesterday came back positive for gram positive cocci. He is on antibiotics and hopefully they will work quickly.
Today is day 100. Why is it that the round numbers always seem so momentous and heavy? We are so tired and weary from worry and stress and med school finals and this roller coaster of good days and bad days and not sleeping and it goes on and on and on. In the hospital, it is hard to keep track of time; hours and days are lost and jumbled together and sometimes it feels like this has all been just one really long, bad day. Other times it feels like it has been years and I find myself straining to remember what Jameson's voice sounds like, what it feels like to sleep in my own bed with my husband next to me, what laughter is. And I miss being barefoot and having a private shower and not feeling self-conscious if I wear my pajamas all day long. And I miss holding my baby and living out the simple happily-ever-after fairy tale life we had been living. I long for the way it used to be. 100 days is just a really long time to have everything backwards and up-side-down.

Last night sucked. He was up writhing until well after midnight and it wasn't until we gave 2 pentabarb boluses that he was finally able to calm down. Then he started right back up with the cramping and pain at 6 am this morning. Finally around 9 am, he passed a giant hunk of tissue in his stool and the cramping and rumbling finally went away. He has been sleeping since 9:30 or so now. I am so glad that he is able to rest!
Yesterday SuperDoc ran a serum ferritin test and he came back off the charts. His level is 2,850 and normal range is 7 to 142. Yikes! This could mean he has hemachromatosis, which is basically iron overload. He may have this due to the number of blood transfusions he recieves. A side effect of hemachromatosis is enlarged liver. Cha-ching! Abdominal pain is another. Cha-ching! There are medications they can give J to chelate his blood so he poops the excess iron out. And then, hopefully my baby will have a normal liver again and his stomach cramps will be less intense or totally go away! Based on the tissue sloughing, I think he is still in the throes of radiation enteritis, but hopefully this will resolve some of the pain and cramping. I have no idea idea how long it takes before his iron is at normal levels and his liver starts shrinking again. Wikipedia didn't help much with that and the docs haven't been by since we got the lab results. Not like it matters- J never plays by the rules anyway. :)
Thanks for all of your liver prayers and keep them coming. There can be some serious side effects to hemachromatosis and I sure hope he doesn't have any lasting bad ones! And just for the record, I'm done with "tosis" illnesses, thank you very much!
EDITED: Um, just talked with the doctor and it could still be something other than hemochromatosis...I'll update when we figure it out for sure. Sorry for jumping the gun!!

We started out alright this morning but the day got rockier as it went on. And I HOPE we are finished with everything but sleep for the rest of it now. J slept, sat in his red chair, and sat on the edge of the bed again this morning and did well. But.
His heartrates and pressures have been higher today, his saturations have been lower, his lung haven't sounded as great, and he is having some green/yellow/blood-tinged secretions out of his trach. Yesterday we sent cultures and so far nothing has grown. It could be a virus or something else that we will never have the answer to. My child is an enigma more often than not.
This afternoon and tonight he is finally stooling and we are finally having a fluid negative day. If only it didn't also mean that he is having cramping and stomach pain. This evening it was so bad that he was actually crying real tears as he writhed around and his stomach rolled. We gave him a ketamine bolus and it lasted about 30 minutes. It should last waaayyy longer than that. His heartrates were still up in the 190's and he was still writhing in pain and it still felt like an alien was going to pop out of his stomach and then he pooped again. It gave him a minute of relief and he started right back up with the rolling belly, pain in the eyes, high heart rates. We have him chlorol and he also had benadryl (to pre-medicate for platelets) and a fentanyl bump. 30 minutes after all of that, he finally fell asleep. I hope and pray he can sleep all night long now.
We didn't get a chance to talk liver today with any of the docs. Maybe tomorrow. Please pray for J to have a pain-free night. I'm going to try to go to bed now so I can get up with him whenever he needs his momma. Good night, my friends.

The ultrasound yesterday showed an epididymitis and a hydrocyl but no hernia. I haven't seen the urologist today but I'm sure he/she will come by sometime in the next day or so. From what I have read, the epididymitis can be very painful. Our Infectious Disease specialist was surprised to hear he had that with all of the antibiotics J has been on. Hopefully it will clear up soon.
The CT scan went well this morning; Jameson was on best behavior. I think he liked being awake while we rolled down and back. During the procedure he was on propophol and he woke up well before they even got him off the scanner. This child chews through his sedation! Our SuperDoc looked over the scans and said there isn't much ascitis in his belly. His growing belly is all bowel and liver. His liver is huge. Not quite sure why, but J just had an echo cardiogram done to make sure the enlarged liver isn't a result of heart problems. Haven't heard back yet.
Our hematologists/oncologists will look over the scans as well and see how the lymphangiomatosis is doing as well. It is too early to really see any differences from radiation, but maybe we can find out something from the scans that will be helpful and hopeful.
Jameson was transfused this morning with platelets, packed red cells and chryo. Part of the reason his heart rate was up yesterday was because he needed blood. It helped and now he is sleeping in the 120/130's. Much better.
He is still having bouts of pain and cramping when he stools and he is still passing tissue. The bumps only work so much. I feel so bad for my sweet little boy. It is hard to watch him have pain and not be able to do anything about it. I just pray Jesus stays in that bed with him all of the time. Thanks for checking in. I will be sure to update when we get more info. God Bless!!

My child has almost been Sleeping Beauty this weekend. I'm glad he has been sleeping a lot because his very brief awake sessions have not been that great for the most part; he is having a lot of high heart rates, has been fluid positive for two days, last night and this morning had painful stools and stomach cramps that brought on even higher heart rates(over 200). Last night we had to give him a pentabarb bump and he's gotten lots of fentanyl bumps all day long. He's has some fevers up to 39.4 that coincide with his heart rates and they go away after getting pain meds, namely his beloved pentabarb. Even sleeping he can't get his heart rate below 150 today.
As a result of being so fluid positive( he is up almost 900 over the past two days) he has a bigger effusion on his left side and for some reason it isn't draining welll through the chest tube. And his right upper lobe(lung) collapsed again. He is also up on his weight -over 3 kilos above his dosing weight. His girth is the biggest it has ever been, 67 cm this morning. The intensivist ordered at CT Scan for tomorrow morning(7:45am) so we can see what is going on with his fluid distribution and see where the fluid is and why it isn't draining. The night nurse is going to have fun trying to figure out how to condense his pumps. He currently has two trees with four brains and fifteen pumps. And a CT scan is a short road trip so I'm sure they will want to get him down to one tree. It is hard enough to take this act on the road with one tree and the vent and the chest tubes and everything else. The nurses are amazing.
Adding insult to injury, Jameson may have another hernia. His testicles have been swollen and bruised and (unrelated) full of blisters( no idea on the blisters except that he is fluid overloaded). He had an ultrasound this morning and we will get the results when we speak the urologist tomorrow. Forgive me, because they did find something and the intensivist did tell me what is was but I can't remember for the life of me. It isn't anything too serious. He isn't stable enough to head to the OR unless it was absolutely critical, so I imagine we won't be doing anything extreme.
Right now he is sleeping in his little red chair, sucking on a toothette. Every once in a while he opens his eyes and gazes at his Christmas tree. Picture included! So adorable. I'm so glad that he is able to have good peaceful sleep with so much going on.

Okay. As of this morning we are off the norepi, (blood pressures have improved some) but he is still fluctuating so it could go back on at some point if needed.
This morning he lost an IV and his femoral line was iffy. They were able to rewire the femoral central line and it is now working well. They attempted to put in another IV but it wasn't working, so in addition to his femoral line, he now has a subclavian central line. At least he is able to get his medications reliably. Which is good since he is on a lot of stuff.
Sedation and pain meds seem to be doing much better. He is off the dilaudid and on fentanyl. And his dose is only 10mcg/hr! That only means something if you remember that before the pentabarb coma he was up to 250 mcg/hr...which is enough to take down three Hubs. Granted, he is also still on 2.5mcg pentabarb and on a hefty dose of methadone and they upped the precedex, but still, I'm pleased with that. Today we are going to start knocking down the pentabarb, but very slowly. He seems to be incredibly sensitive to even tiny changes in his medications. He was down to 2.0 but was back up to 2.5 when we ran into trouble the other day and we will be going down to 2.25 today. With that change the methadone was upped again. (When he was in his pentabarb coma he was getting 4.0 pentabarb.)
Jameson is also getting an anti-nausea medication but we aren't sure if it is helping or even if nausea is an issue. It is so hard to tell what is bothering him when he can't tell us or even really show us. He does seem to calm down more when he has it in his system, but it also has sedative qualities, so maybe that extra bit of sedation is what is making the difference. The only problem with giving it is that is can also soften his blood pressures, and we've had enough issues with that, thank you very much. We had gone down on his feeds from 20 to 10 two days ago and back to 15 yesterday without issue so today we will also be going back up to 20.
Today we've also been trying to use the power of distraction during wakeful periods. His vision is much too blurry from all of the drugs to really see the tv across the room, but Hubs held his laptop right in front of J and let him watch Dinosaur Train this morning. Sure is better than loking at the ceiling all the time. I think he even liked listening to it when he was too tired to keep his eyes open.
Over the past few days his belly tube output has been a brighter and fresher looking red. We aren't quite sure what to make of it and neither are the docs. Last night he also had about 2oz of bloody bile coming from his NG tube. It hasn't continued and we aren't quite sure what is causing it. Hubs is slightly concerned that is could be radiation enteritis. I hope not; it sounds yucky and we don't need any other problems for our sweet Jameson.
The belly tube and chest tube output has decreased over the past few days, but not dramatically and not enough to convince anyone it is a result of radiation. I pray this trend continues and it IS a result of radiation. I want nothing more than for Jameson to be well and come home.
Thanks for checking in. I'm sorry the updates are always so long, but there is always so much changing all of the time and it is all so very complex. We truly appreciate your willingness to continue reading about and praying for our smiley pie J. God Bless you all!

Jameson is doing alright. Yesterdays labs showed his white count up to 0.5. Wahoo! Keep going, baby! It is so hard to not be hopeful that this is a sign of his body healing and radiation working. Patience.
Going back up to 1.4 on the pentabarb has helped and he has been sleeping well. As a matter of fact, he is still asleep now from last night. It's like we have a teenager today. In other good news, the rash is clearing up. Amen. His skin is creamy and beautiful and he looks like the sweetest and most perfect angel sleeping in his big bed with all of his pillows and blankies. An angel in handcuffs because he is so strong and has such sassy hands. I love it.
Yesterday GrammyBear spent the day here and he sat in a red chair and loved it. He even played a drum. Can't wait to get him sitting again when he wakes up. I will post pictures tomorrow if I can.
Little Man brought a Christmas tree in and we decorated it and put a few festive things in the room. It is nice to see the holiday spirit in the room. Have a nice weekend!

Sigh. Jameson started having a rough time about 5 minutes after I posted the last post talking about how great he was doing. Sigh. He was struggling with withdrawal and pain and poop all day long. It is so hard to seem him writhe in pain, grinding his teeth, watching his heart rate stay in the 180's and 190's and watch him desat as a result of pain. He passed more tissue in his stools today and the cramping and rumbling never stopped. Auntie K was right on when she said it feels like he has a motor in his tummy. His temperature climbed up to 39.5, too, so we took more cultures today. We maxed out his fentanyl bumps and tried chlorol to calm him down so he could catch his breath, but it only worked for 25 minutes. The intensivist thinks we are weaning him from pentobarb too quickly so he gave him a pentobarb bolus and increased his drip to 1.4. It was 1.5 yesterday morning and 1.25 yesterday afternoon when we went down. Pentobarb was really, really great when we needed it, but now it is a headache, especially for J. Hopefully weaning him slower than molasses will work. After getting the bolus, he did calm down and fell deep asleep for the first time all day. Hubs just emailed me to let me know he is now saturating well and his heart rate is down in the 140's. Whew. Hopefully he will sleep all night long so Daddy can get some studying done!! Thank you all for your love and prayers!

I got a talking-to from SuperNurse this morning about waiting too long between updates. :) Sorry. Overall, Jameson is having a good week. His white count went up from 0.2(yes I wrote it wrong before) to 0.4. That is still low, but better. Fingers crossed that it keeps going up, up, up!
We haven't had any more really bloody stools and he seems to be having a more manageable time pooping. It still causes discomfort and pain, but not like it was before. Again, hopefully this trend continues and we are over the worst of it.
Our eye doctor was in this morning and said his eyes are doing well enough to only use drops and salves when he is really red or has discharge as opposed to lubing his eyes with a Vaseline substance every.two.hours.around.the.clock. J hates eye drops, so this is great news!
The rash is still here and looking angry. It has spread and it just looks like it hurts. They ran cultures but nothing has grown. It may be viral. It is worrisome to say the least and we all want it to go away.
We were able to go down a little more on the pentobarb and he is more alert every day. He is strong, too. Everyone is surprised at how strong he is considering how long he was inactive and how many sedation drugs he is still on. He needs wrist restraints now because he can lift the z-flo pillows right off the bed to get his hands free. I LOVE how feisty he is and can't wait for him to keep us even busier with his sass.

We are so thankful that our little guy is still fighting and maybe making progress. Being here all of the time is so hard. "Living" in the ICU is really hard. But leaving the hospital is harder. It is hard to leave J's room and sometimes it is even hard to let go of his hand. Especially when we see people walking down the hallway lost in tears and we know they are walking away for the last time. Walking away without their child. And we watch knowing that every day it is a miracle that we are not that family. And also knowing that any day we still could be that family. But not today, God willing. We have much uncertainty in our world. But one thing I am sure of, is that no matter happens, God will give us our daily bread.

I sit and I think about that. He never promises to give us leftovers, never an extra helping for that midnight snack. He certainly doesn't offer a Costco membership to get us through the month in one foul swoop. He says not to worry because He's got our back. No matter what, I know I can have reservations at the finest table in all of eternity anytime I need them and I will be served what I need and leave full. I can bring all of my fears and worries and anger and pain and tears that leave me empty inside and just leave them in the coat room. And when I leave I will be full. Full of love. Full of grace. Full of mercy, confidence, joy. But I have to go there each and every time and ask for that table for two and sit across from the date who paid the ultimate bill so I may satiate my hunger and leave full. And I know that every time I go to the table, no matter how hungry I am, no matter how long it has been since I was last there, He is enough. I will not leave hungry. I will not leave empty. I will not leave alone. No matter what. And today I sit in this room and I thank God for giving us our daily bread, for giving us the strength we need, for promising to be enough. No matter what.