Happy Halloween! Little Man is going trick or treating tonight for candy and sweets. Jameson hopes for chlorol(HA!) as an extra special halloween treat. Hahaha. But he doesn't need much- the pentabarb and precedex are working well and he is even able to have some awake times without pain. Love it! Our little J-Rex has had an awesome weekend and we are looking forward to another great week of radiation and healing starting tomorrow! God Bless you all and praise Jesus for healing, stability and chocolate. Seriously.

 

Five down, seven to go! Radiation and travel seem to get better and smoother every day. Amen! J's team is always amazing. We love our PICU staff. Jameson is having a great day today and all is well in the world. He has the weekend off from field trips and we will go back on the road Monday around 11:30. Have a wonderful weekend and Happy Halloween!! Love, Meghan

Four down, eight to go! I'm at home with Little Man but Hubs said it went well. I saw J for a bit this morning and he was comfortably sleeping and looking good. Little Man has been needing some extra love this week so I'm trying to spend a few full days with him.
This morning was Little Man's Halloween party at school and the Trunk or Treat in the parking lot. It was so cold and there were snow flurries. I loved watching the 3 yr olds struggling to hold their bags going from trunk to trunk to get candy and treats and think about how cute Jameson would be in his costume as his teachers try to keep him from sitting down and eating the candy the second he gets it at each car. He was supposed to be in that preschool class; maybe he can join late or next year after he gets better. Little Man wanted to be a boat captain and he wore his daddy's Navy hat with some of his old ROTC medals on a blue blazer. He was so proud to be his daddy for Halloween. After getting the treats we all went inside and the kids sang some fall songs for us. It was adorable. Little Man didn't sing the songs during the program; instead he stuck out his tongue and made faces at me in true him fashion. Wish I hadn't forgotten the camera at home. God bless my big boy; he keeps me sane and gives me more joy than anything else could right now.
Stay tuned for super cute Halloween pictures this weekend! Have a great day and I'll update tomorrow after day five of radiation! We love you all dearly and every day we are so thankful for your prayers, love and support.

Three smooth days of transfers and radiation! Be still my beating heart! And it is totally a result of your prayers. And our Supernurse. And Superdoc. We are so blessed to have such an amazing team working with us. On the way back through the tunnels our radiation oncologist caught up with me to introduce herself. She was in Boston all last week at a radiation oncology international conference so we have only met her partners until now. She mentioned that she learned of five other new and unpublished cases of lymphangiomatosis being successfully treated with radiation. Hallelujah! Hopefully we will get a chance to meet with her soon and find out more information.
Jameson just had a chest tube put in a few minutes ago and he's already had about 80mL. The chest x-ray showed it needs to be pulled out a bit so they are working on fixing it right now. Hopefully his stats will improve now that his effusion is on the way down. Just to recap, he now has one chest tube in the right side, one in the left and one tube in the belly. This is the 4th one he's had on the left side.
No other news today...radiation is scheduled for noon every week day and we leave around 11:30am for the trek.
Oh, sedation! He is finally found his happy place last night after 4 pentabarb boluses and lots of hand holding. But they are again changing things up so hopefully it will go smoothly. He is off versed right now and they are dialing down the fentanyl and that will be off by the end of the day. Then he'll only be on precedex and pentabarb for at least 7 days. Hopefully this time the reset will work. Fingers crossed, knees bent. :)
I think Little Man is coming in and we may do a family movie on this cold, blustery day. I hope you all have a great and blessed day and thanks for checking in! -Meghan

So sorry for not updating sooner. Everything went great with transport and ab zapping again. Praise God.
J's left effusion has grown and he is probably going to get a pigtail(chest tube) or they will poke him and take some fluid off. He is satting in the high 80's.
We are weaning off propophol and probably going back to background pentabarb. And Hubs and I did trach cares and suctioning on J for the first time. Our nurse gave us gold stars for the day. Well not really but she said we did good.
Radiation will be weekdays at noon thru Nov 9 and we usually leave the room sound 1130. I'll be sure to check in and let you know how transport goes daily. Love, Meghan

And breathe. We made it there, did the first ab zap and made it back without a hitch. One down, eleven more roadtrips to go. Still not having great lungs, but we did make it through the entire trip without desatting. Tomorrow's treatment is scheduled for noonish. Hopefully it will go just as well. Thanks for all the prayers and God Bless!

Sedation issues -what's new? Off pentabarb and it doesn't look like the receptors have been reset. He's already at 100mcg/h of Fentanyl and it is giving like 5 minutes of relief after bumps. So propophol has been added. Holy canolli it knocked him out the second the line went in! Don't worry, we have way better doctors than Micheal Jackson had. Waaaay better.
Right upper lobe is collapsed again so we are working hard to get him ventilating better before he takes this act on the road. Right now he's at100% O2 and satting around 89. Yuck. They are getting some decent goobers at suctioning so hopefully it's a mucus plug and we can get it out soon.
Since we are off the pentabarb the EEG is gone; no more onion hat. Yay. But based on sedation issues and the fact that propophol is a short term thing, both pentabarb and onion hat may return. We'll see what the pain team comes up with after we get back from Abbott.
As of now and pending desatting issues we are all set to go ahead with radiation today. The trek through the tunnels is scheduled to begin at 11am. Please prays for smooth travels and throw an extra one up there for our nurse today. She just got back from a week in NYC; nothing says welcome back to work like having J plus a long field trip. I hope you all have a blessed Monday morning and I'll make sure to check in when we get back to our room this afternoon.

Today is a little better than yesterday was. Amen! Jameson completely cleared out his bowels yesterday and I think he is feeling so much better. Yesterday he finished the day with -1500 for his ins and outs. So he has a lot less fluid(and poop!) in the system which is a great thing. His overall edema seems less today too.
His chest xray looked a bit better today as well. He still has that huge belly but his pressures are low and the girth is 58, which is not bad for him. Labs were all improved this morning too.
Yesterday the intensivist started him back on Precedex and that seems to be helping. He may have been having some withdrawl from it. This morning he is also back on Fentanyl and Versed. The 30 mcg/h they started today are a far cry from the 225mcg/h he was getting before we switched to the Dilaudid and then the Pentabarb. Hopefully his receptors have been reset and we won't need to escalate too quickly. He was a little awake this morning and not really happy, but not in pain. No unhappy faces, just sticking his lower teeth out once in a while. Now he's in his fentanyl happy place and snoozing with dino and blankey love.
He is still on steriods, insulin, meds to lower his blood pressure(I always mix up the lowering/raising names so I won't even try...), miralax, and about 20 other things that escape my mind. And feeds have slowly started today. Again.
As of right this minute, the intensivist thinks he is stable enough to take his radiation roadtrips. Amen! Now we just have to hope he stays steady or improves over the next few weeks. Thank you for your prayers; the Lord has been so good to us and He is answering our prayers. Team J has been storming Heaven and God is listening! Every day with Jameson is truly a miracle. God Bless and Skol Vikes! -Meghan
 

Jameson is not doing great today. His fever is back. His heart rate is high. His bowels are huge and not working and possibly full of fluid. He seems to be bleeding in his belly and possibly in his bowels but no one is sure how much or where it is coming from. He is in rough shape and the doctors aren't sure if he will be stable enough on Monday to survive his daily roadtrips for the radiation treatment. Avastin is off the table right now due to bleeding, too. We are running out of options. I still have hope but I'm also very scared. I don't want my baby to go to heaven so soon. Please pray that he will stabilize enough to get the radiation.

Jameson had his CT scan this morning and did great. Now the radiation oncologists will work on the plan and hopefully we can start something soon. Still no culture growth and his fever has been down since yesterday. Hopefully whatever he had(has?) was mild and the drugs kicked butt.
Right now, Little Man is here and we just had a family lunch together in the cafeteria (obviously not J) and now we are all snuggled together on the couch overlooking J in his bed watching the Princess and the Frog together. Little Man has been wanting to spend a lot more time here and tells me often how much he misses his brother. Breaks my heart. At least we can all watch movies together. :)
I hope you all have a wonderful weekend; hopefully we won't need to update until Monday after we get the radiation plan.

No CT today, but it probably worked out for the best. Just as the were about to go on the road with the entourage, they found out the CT Lab had no power/lights. Instead, our SuperDoc went to work with the afternoon plan: removing the non-draining left chest tube and sticking a needle in the left effusion and pulling off fluid. The old left chest tube wasn't that old- it was the one put in for his pnuemothorax and it had never drained much and probably did nothing but irritate him so good riddance, chest tube! His left effusion was bigger this morning and needed some draining since it was affecting his ability to breathe so she stuck a needle in his chest and pulled off about 140mL of chyle(the fluid). He is now satting much better but he is still on 70% O2. His post needle-drain xray looked better but they are holding off on the CT until he is more stable.
On the infection front, Jameson has not gotten worse, he may even be a bit better. His fever has been down a bit and he hasn't had tylenol since 3 am. The cultures sent out haven't grown anything yet so we don't know what we are fighting. His white count was way up this morning, almost all nutrifills(90%).
He is now heading into his pentabarb coma today and off all other pain and sedation drugs. The EEG machine is monitoring him continuously and a neurologist will be coming by sometime to check on him.
SuperDoc is going to put in an Arterial Line shortly to continously monitor his blood pressure since it is still low and he's still needing the meds to pop it up.
Hubs and I finished our trach care class in record time. Suctioning and cleaning the trach on a fake, totally still baby was easy! So was the CPR. I have a feeling by the time we will be trying out our new skills on J, it probably won't be so easy. Just getting a diaper on him is challenging enough when he is well! They recommend swaddling hands in a blanket while doing trach care, I'm thinking handcuffs will probably come in handy...
So, maybe CT tomorrow if J feels up to it. Radiation probably won't start until the infection is treated and long gone. Always busy, always changing...hopefully only for the better from here on out! Thanks for checking in and praying. Love, Meghan

PS...Just found out, they are starting him on IVIG to boost his immune system and they are about to get a culture from his lungs through blind lavage. Should be safer and easier than a bronchoscopy right now.

So good to have the pain meds working and a calm and comfortable child. Although, calm probably isn't the right word....comatose works better. I'm not sure if he is technically in a coma, but he is low enough that they are doing continuous EEG monitoring to make sure they don't bring him too low.
All of the nurses who have looked at his trach site today think it is starting to look better. Having him still and not moving his head around and not being in constant pain and discomfort seems to be helping him to heal, which is a great thing. Back to the EEG for a minute: He has electrodes all over his head with a white fishnet stocking over the top of his head and all of the wires coming out of the top of his "hat" and it just reminds me of an onion. What a sweet onion he is. :)
The big news of the day is radiation. We met with the pediatric oncologist and the radiation oncologist this morning and are going ahead with arrangements to start radiation sometime next week. We are still thinking about the idea and letting it sink in, but from the reports we've read, it seems like it might be a promising therapy to try. We are in uncharted territory, prayerfully stumbling through the darkness, hoping we make it down the right path.
The first step is to get a CT Scan this week and the radiation oncology team will look it over and make a plan on what to radiate. His disease seems to be fairly diffuse and they can't radiate his entire body at one time. We all seem to think the disease is doing the most damage in the abdomen so he will mostly likely undergo radiation on his entire abdomen for 13 days at a low dose. If it works and he doesn't have really bad side effects, they will give him a week or two to recover and then start the process on his chest. The oncologists all seem to think this is a less risky option than Avastin at this point and think this is our best next course of action.
I understand that radiation is a risky procedure, but the part that scares me the most is the daily field trip to Abbott to do the procedure. Every day they will take him down to the basement and through the tunnels to Abbott, he will undergo his radiation treatment and then come back through the tunnels to his room. He is much more stable than he was the day he coded in the MRI room, but field trips still make me nervous. The doctors all assured me that he will have quite an entourage the entire time as well. Man, I hope and pray this works. I really want to bring my baby home again.
Again, we humbly ask and thank you for your prayers. We are so grateful for your enduring support and love as we continue on this journey. God Bless you all, Meghan

Okay. So the curcumin (tumeric) listed bloody stools as a side effect so that has been discontinued since Sunday when we noticed problems and he hasn't had any more problems since 2am Monday. Feeds were also stopped but will start back up today slowly.
Sunday night and Monday pain was our biggest issue and the pain and palliative care team almost had to move into the room yesterday. Instead of the coma they upped his methadone and took him off the dilaudid and versed. He wasn't responding at all and spent most of the past 36 hours frowning, grinding his teeth and writhing in pain. They kept upping his dosage and we were bumping him everytime the machine let us with no changes. He was literally getting as much methadone as a 1000 pound horse. And it wasn't working. They even bolused his pentabarb twice and it did nothing. He should have been comatose and it had no effect at all. It was an awful night. Our poor nurse will probably forego her pension rather than be assigned our room again...dysfunctional equipment, an exhausted (well mannered) sailor-mouthed father, and one seriously unhappy child. This morning our Super Doc tried giving him a small iv dose of pentabarb in a different line and he went down for the count in no time at all. Sooooo, it was something with the line and not Jameson being the world's first person to not respond to pentabarb.
This led to an ultrasound and echocardiogram to make sure his femoral vein or abdominal vasculature heading back to the heart didn't have a clot in it. Both came back fine so it may have just been a problem with the meds crystallizing in the old IV line, but everything seems to be okay at this point.
We are slowly starting up feeds again today. We are adding in some iv lipids and sugar to help with calories so he stops withering away. He lost an iv in his foot last night and it is super swollen and puffy and blistery. Poor J.
Yesterday we had another ENT come look at the trach and give us a second opinion. At this point there isn't too much we can do, but he made some good suggestions to hopefully help J be more comfortable and heal better. We are going to get a flexitrach, which is more flexible and softer. This will be so much better for him because he has a super short neck and his trach is always poking into his chin and chest. It can also move side to side a little more and that will lead to easier positoning and comfort too. Hopefully!! We are also going to try wet/dry dressing changes with vinegar(some medical version) to keep it cleaner and healthier.
Right now the massage therapist is working with him and giving him some healing touch and massage therapy. He does really well with it and they stop in our room often.
Handoff, Meghan is apparently now going to get a massage while I (Hubs) scoot further and deeper into the board-like futon. Who wants to bet Meghan becomes a believer in the Chakras and healing touch in about 5 minutes.
So today it looks like we might actually get his pain under control again and the pediatric radiation oncologist is coincidently going to a conference in Boston this week and will present his case to field ideas. Not exactly encouraging news, but at least we know all interventions are being explored, thank you Team J!! Yes, all of Team Jameson has been fantastic - a heartfelt thank you to all of you who have participated in his care!! And thank you for your continued prayers and staunch support! Oh, and it only took Meghan about 29 seconds...I think she may now be more sedate than J...who knew?

Jameson behaved on the road. We are back in the room, the trip was uneventful and his brain is fine- no bleeding. Well, no brain bleeding... He had a very bloody stool while down there and is now getting a blood transfusion. Not quite sure why he's bleeding so much but they are running all kinds of tests to figure it out. Sigh. And I thought Sunday was supposed to be a day of rest...

We are taking an impromptu field trip to imaging to get a CT Scan as soon as they get him ready. Jameson has had high blood pressures and low hemoglobin which has the docs concerned about a brain bleed. Please not only pray that his beautiful little head is okay, but again, please pray for transport there and back. Thank you so much for your continued prayers and support. Meghan

So the plan seems to change daily.... The pentabarb is working well but he needs lots of bumps and he is pretty much maxed out on the other pain meds so there is talk of putting him in a medical coma with the pentabarb for five days and take away all of his other pain and sedation drugs to reset his receptors. That way they can start back up with the versed and fentanyl at lower doses again. We should find out later today when the pain doctors come in if that will happen and when.
The lymphangiomatosis plan is changing again too. We started him back up on interferon today. He is also getting celebrex, steroids, and curcumin (tumeric, yes a spice). We may hold off on the Avastin for a week while he is in the pentabarb coma because once he gets the avastin he won't be able to heal for a while. We want to give his nasty trach site another week to heal first. Avastin works by stopping new blood vessels from forming, which is what will hopefully halt the lymph production, but it works on everything and that is why healing is also halted.
He is also on insulin now because the steroids have raised his blood sugar. And he just got more platlets. Thanks to everyone who gives blood yet again! I think that is it for the med changes...
But we are in flux so this could all be changing again- who knows?! What I can tell you for certainty is that we will be watching football and cheering for our Vikes. Skol Vikes!! J can't clap but he's cheering 'em on in heart! God bless!!

Today is a good day. Yesterday and the day before, Jameson was in a lot of pain and breaking through his mega-doses of pain meds and sedation meds and literally crying with chin quivers and all. It was torture to see him suffering. The pain team and intensivists decided to add Pentabarb to the mix. This is a great sedation med and he seems much more comfortable. He is so sedated, it is like he is just one step away from being in a medical coma. It is helping bigtime. He just looks great today. Now that he isn't hurting all of the time, he is calm and able to concentrate on healing.
Additionally, our awesome Team J isn't ready to pack this in at all! His intensivist spent her night off doing research and we now have a tentative Plan B if the Avastin doesn't end up being the magic bullet we all are hoping and praying for. It feels so good to have another plan and know that everyone is still fighting to get our sweet J healthy and home again. Because this is such a rare and unknown disease with no known cure or even standard treatment that is proven to work, everything is experimental and we just have to hope that something works. Plan B still needs research -and hopefully we won't even have to go there- but if the Avastin doesn't work, we will probably try radiation. My little tough guy is hanging in here! Thanks for checking in and please keep those prayers coming! :) God Bless you all, Meghan

We sat down with J's team today to discuss the MRI and the plan from here. Basically the MRI didn't show anything to be much worse, but nothing is better either. Plain and simple the drugs aren't working. We are discontinuing the interferon and starting back up on the celebrex and also starting up some experimental drugs. On Monday Jameson will get a dose of Avastin(I hope I'm saying/spelling the right drug here). There is a 20-ish% chance of developing a brain bleed from it but at this point it is worth the risk. This is pretty much the last hope we have of turning this around. There was a case in Germany where a very sick little guy became well and lived for 27 months without any lymphangiomatosis flare ups after one dose of Avastin and we hope and pray this works for Jameson. We are praying for a miracle and keeping Jameson as comfortable as possible. Thank you for your continued support and prayers. Thank you and God Bless.

He's back to his room and settling in. All went well during the MRI but they only did the brain and belly because it was just too long. I think everyone was a little bit nervous and didn't want to push their luck. If they need to, they are confident they can pop back down to do the chest another time. We should hear the report tomorrow or Friday. Thank you all for your prayers!! I just heard the nurses talking about how it was the most perfect transport and MRI ever and how it never goes off without a hitch: there are our prayers being answered!!! Thank you, Lord for getting us through this day and this test.

The field trip is officially on! J will heading down for his MRI in about 10 minutes. Please pray that the whole trip down, during and back goes smoothly with no Dr. Blue pages! (That is code for coding.) It should be a 3 hour tour and and we will be sure to update when we can! Thanks and God Bless you all.
ps...he got a left chest tube and the pneumothorax is no more. Yay!

Just a quick update: J had a rough night last night desatted into the 80's and wouldn't come back up. They had to do some deep suctioning and increase the pressure and rate to try to get those lungs to open up. He is now satting in the low 90's but at 65% O2 and a rate of 24. So not ideal. The intensivists are toying with putting a chest tube in his left side to get rid of the pneumothorax and drain off fluid from his effusion. They are concerned that when the air comes out of the chest cavity, fluid will fill in the space. He is getting platlets for the second time today already. He is fluid up and they started lasiks again to help dry him out. His belly is big again(girth is 60 again) and he isn't pooping well so feeds have been stopped. The intensivist also wants to see if feeds have any impact on lymph production. Only "gatorade" for J now. They have also increased the amount of fluid they are pulling out of the belly tube to 200ml/every 8 hours. Sedation and pain meds have been increased 3 or 4 times in the past 24 hours alone to keep up with his needs. His Fentanyl alone is up to 155mcg/hour. Plus bumps. Plus methadone, vallium, versed, precedex...and I know I'm missing a few.
We really need that MRI. But as of now he isn't stable enough to get it. He is tentatively scheduled to get his MRI trach(without metal) put in at 2 and then have brain, chest, and abdominal MRI done around 4pm. (The brain part is only a post ECMO check and we all anticipate that part to be just fine.) Please pray that his lungs improve dramatically over the next few hours so he is stable enough to have his MRI. God Bless!

Today J had his trach fitting changed for the first time, he did not like it. His incision is huge, about an inch or two higher than it should be, and there is some nasty skin breakdown around the site. I'm sure it hurts something fierce, worse than even watching the Vikes. He was extremely agitated by the change and some secretions were loosened so he needed to be bagged a couple times. His MRI didn't happen because his oxygen sats took a nose dive into the 30s and they called a code. They were able to remove some thick secretions by lavage and suction, and he has subsequently been doing well. Unfortunately, he now has a pneumothorax in addition to the effusion (air around the fluid around his lung), talk about deserving a break! Since his tracheostomy a week ago his right upper lobe lung has collapsed again (a familiar battle he's been waging). We've just finished up another transfusion, how many is that now? - 22 transfusions not including probably 50+ albumin and plasma units. If it's been a while since you've donated blood, perhaps you'd consider doing so. Tomorrow we will hopefully get another bronchoscopy to pull out some thick secretions that are blocking his upper right lobe, and we hope his new air pocket in his chest is reabsorbed, the effusions stop growing, his belly stops filling, his pain stops, he ventilates better, his trach infection subsides, his super high triglycerides go down, his fever doesn't come back, his skin breakdown and general condition everywhere improve, his feeds improve, his bowel activity improves, and his eye lesions heal...come on yahtzee! He's a champion hugger, he could do it.

Jameson has had two great days! He had an abdominal drain placed to slowly draw some of the fluid that's been accumulating and distending his stomach. He didn't seem to get any worse, and then after about 16 hours and (3) 100 ml fluid removals his body just seemed much happier. He's ventilating better, his heart rate has come down, he's urinating much more efficiently, he requires less sedation, his feeds have been increased, his dilated pupil has returned to normal, his stools are no longer mucous-like diarrhea, and his chest xrays are better. Almost makes us wonder if we could have gotten around the tracheostomy had we tried to remove fluid from his belly first. So he's traded the basketball in his tummy for a cantaloupe and it's made a huge difference. Since we're removing this fluid and he's not able to recycle it through his intestines, it complicates his feeding requirements, blood dynamics, and blood product requirements. But it seems to be allowing his body to operate better, particularly his kidneys and GI system. Now if only we could get the lymphatic leak into his belly to subside. Tomorrow he'll get a new trach and an MRI after the replacement to get a better picture of the state of his abdomen. Hopes for tomorrow are ill-defined: we would love to see diminished lymphatic nodules in his abdomen suggesting effective drug therapy, but based on the steady build up of fluid this is unlikely; so despite our wishes to keep his spleen, perhaps the second best outcome would be to see heavy involvement of nodules in just his spleen such that a splenectomy might be the battered silver bullet to get him home... or maybe everything will just resolve overnight?!?!?!?! A man can pray, right? A Happy Birthday and Happy Anniversary to a couple readers, and a Happy Sunday to the rest!

J's past day has been rocky, much akin to the Twins's post-season play. Following the tracheostomy procedure on Tuesday his breathing was undermined by secretions and blood from the surgery, but it wasn't terrible. Last night J had to get bagged again as his oxygen saturation dropped into the 70s, suctioning secretions and junk didn't help much. So his mechanical ventilation support was intensified (higher pressures, higher oxygen concentration, and faster rate). This is of concern because this is the same trend that landed him on ECMO 3 weeks ago. His lungs are delicate little balloons easily tattered by higher pressures, high oxygen, and fast inflating/deflating. His belly has continued to be incredibly distended and taut, which is how the disease first manifested so will likely be the last to resolve. Last night's episode was the result of increased pleural effusions (fluid around both lungs). We can't tell for sure, but we suspect the fluid around the lungs is actually high pressure abdominal fluid blowing by the diaphragm separating the abdomen and thoracic cavity. The bright news is his kidney function has seemed better, but sadly this is due to relaxing the diuretics to keep all the IV fluid he's receiving from accumulating in his little body...which is why his abdomen probably became more distended and caused the increased lung fluid.
We've been walking a fine line between maintaining good kidney function and volume overload while trying to buy more time for his medicines to be really effective. Unfortunately, we haven't really seen any progress on his abdominal fluid production. We've long suspected his spleen is the major traitor, dumping fluid into his sweet should-be-little belly and consuming blood products (platelets, RBCs). We've been debating getting another image study (CT or MRI) to assess if the lesions in his spleen have grown or regressed, but the contrast used is hard on his already assaulted kidneys. If they've grown wildly we'll likely remove his spleen, but we've been hoping, praying to hold off on that - organs are nice to keep. We can't do the MRI until Monday so today we're putting a little tube in his belly to pull some of the fluid out, relieving the pressure and hopefully reducing the fluid build-up around his lungs.
For added insult, his tracheostomy appears to be getting infected.
Jameson may be a prince, but his endurance is unbridled Pheidippides (with a wholly different outcome)! Thank you for your continued prayers for Jameson's strength, resilience, and overall recovery.

The trach surgery went really well and Jameson is doing well. He gave us a bit of a scare when he first came back to his room and desatted a few times. Bagging and suctioning for a while helped dislodge a big goober and he seems to be doing much better. He is still on a higher percentage of O2 and higher peeps right now but they should be able to start going down as the day goes on. They also ordered a chest xray and it looked pretty good.
It was hard to not emotionally go back to the desatting and bagging in St. Paul before ECMO and I'm so glad it was a quick incident and he has popped back up. I am starting to wonder if giving me a heart attack is truly my sweet boy's objective. I am utterly spent right now. Emotionally and physically. Even at home sleep will not come to me; I have had such fitful nights, full of nightmares and wakings since J has been in the hospital. I hope and pray that someday the Sandman will befriend me again.
The GI doc came by today and put Jameson on a drug to lower his triglycerides. I can't remember what it is. He is on 16-ish daily meds right now in addition(I think) to his arsenal of pain and sedation drugs. The anesthesiologist told Mike that just his Fentanyl dose alone is enough to completely knock out a large adult for quite some time. And that is only one of the 6 or 8 meds he is on continuously to keep him sedated and comfortable. And he still breaks through enough that he needs to be "roc-ed"(paralytic) at least a few times a day. What a fiery little red-head!
Thank the Lord that Jameson did well in surgery and finally has his trach. I cannot wait for him to "wake up" a bit. He looks really good right now and his sweet little lips are closed and perfect with no tubes in his mouth for the first time in over a month. God is so good. We are so thankful to be where we are. I think the plan for the rest of the week is to rest and get to the point where sedation can be lightened. Maybe when J is done with his Versed momma can have some....haha. We have no idea how long that will take; this is yet again a waiting game. Thanks for checking in and thank you again for all of the prayers, meals, cards, and support. We love you and appreciate you all so much.
 

Jameson had a steady weekend -nice and low key. His belly is still on the rise, full of fluid. It has been expanding for a while now and is actually stretching out his rib cage. The belly fluid is actually the main reason at this point that J is still on a ventilator. It is so full and so big that the fluid can press up and collapse his lungs without the vent pressure. So right now, this is our biggest problem.
His chest xray this morning looked slightly improved and he is doing well on that left side without the chest tube. The site is still leaking and oozing a bit but the hole is almost completely closed now. I'm so glad fluid isn't accumulating there and hope it stays this way. The right chest tube is still draining large amounts of fluid daily. I think his chest tube output has actually increased over the past few days. I'm glad that is is draining well but I keep hoping his body will slow down on making the fluid, meaning the chest tube will have less to drain over time. Sigh.
Balancing his fluids is a daily battle for the Drs. His lungs want to be dry and fluid negative is the goal, but the kidneys like to be wet and do better when he is fluid positive. (Fluid negative means he drains/pees/oozes more out than he gets in through ivs and meds daily. Fluid positive means he gets more in than out). It is a fine line to keep him dry enough without damaging his kidneys. His kidney levels are slightly up today so the bumex(which helps to dry him out) is being dialed down a bit today.
His white blood count was up a bit today, 2.1, which is a good thing. It would be nice to keep seeing that number rise. His triglycerides are also high, which is not good. We will get a GI Specialist in today to see what they can do to lower it. His platelets continue to be low and he is getting platelets once or twice a day. As a result of having such low platelets, he is bruising easily and at risk to bleed so his respiratory treatments (beating on his chest) have been scaled/stopped to limit the risk of bruising/bleeding.
Yesterday our lovely nurse noticed that everytime she gave him one of his sedation meds (atavan, sp?), he always perked up instead of calming down...J likes to be that one in a million kiddo who breaks the rules. That has now been discontinued and replaced with vallium.
Surgery came by early this morning to check on Jameson. We are still on schedule for a field trip to the OR at noon tomorrow. I am so looking forward to seeing his beautiful face without a breathing tube sticking out of his mouth tomorrow. And really looking forward to having J more and more awake once the trach has had time to heal a bit and they can lighten sedation.
My little smiley pie guy is such a trooper! I am super impressed with how strong and brave he is to keep on fighting and healing. And he still manages to look cute as a button and have great hair through it all. I'm not kidding- people comment on how great his hair is all the time. It is almost romance novel length now, too. I adore it. I admit, I am slightly biased -I'm probably the only person who looks at his xrays and thinks about how cute his little ribs are...yes, even his stretched out ribs are adorable. I guess finding cuteness everywhere is one of those mom perks. :)

Jameson is back on interferon, celebrex, and a higher dose of sirolimus. As a result, his kidneys are not happy, but at this point his creatinine is still at an acceptable-for-J level. His lung function is also still doing well. He really likes the pressure SIMV ventilation he is on. His morning chest x-ray also looked fine this morning. The Dr's discontinued a few of the antibiotics he is on, so hopefully that will help to give his poor little heiny a break. You moms all know what I'm talking about! They are hoping to increase his feeds this week as well. Additionally, he continues to break through his sedation so yet another sedative, precedex, has been added to the mix to decrease his agitation. Not sure if we already mentioned it or not, but both red-heads and people with Down syndrome metabolize pain and sedation drugs differently and tend to need more. Of course, in true J fashion, he has to have both both DS and red hair. :) He is quite the addict at this point but we will have plenty of time to wean him once we are over this hump.
If he continues to stay stable and not decline over the weekend, he will have his tracheostomy on Tuesday at noon. While having a trach isn't ideal, none of this is. At least with a trach, he will be more comfortable and won't have tubes sticking out of his mouth any longer. It will allow J to have lighter sedation and eat sooner when the times comes. All around, it will make J's hospital stay more comfortable and healthier, which is the most important thing.
As if this weren't enough to think about, Hubs has a huge final exam for med school next Thursday. These classes started the day before J was hospitalized so Hubs has been trying his best to stay above water, but it hasn't been easy. I know he doesn't want me to mention it because he wants all the prayers to go to Jameson, but God is big enough to handle both things; so if you have a few spare moments, please keep Hubs in your prayers this week too as he attempts to learn it all and pass his all day exam Thursday.
I hope everyone has a blessed and wonderful weekend!