Wednesday, September 29, 2010

Jameson has done fairly we over the past day. The left chest tube that hasn't drained in weeks was taken out this morning. They will continue to monitor the effusion with morning chest xrays and can put a new one in at any time if it is needed. His belly is still large and full of fluid. We keep hoping the sirolimus will be our wonder drug and dry him up but so far we haven't seen a noticable impact. He will be on a vent for a long time barring a miracle so the plan will be to get a trach as soon as he is stable enough for surgery. Hopefully early next week. Even with the trach he will still need heavy sedation for quite some time due to the fluid build up in his body.
Interferon has been held for a few days and he has improved. No more fever, improved kidney function, improved lung function. But he has to get started back on it. Interferon is really the only maintenence, long term drug known to help out with lymphangiomatosis. Hopefully when he starts back on it his lungs will not diminish and after a few days his body will learn how to tolerate and manage the drug.
Today is a "boring" day. No tests to run, no exciting news, no field trips to the OR. Jameson remains in critical condition. Just this morning I read some notes from a Dr stating that he will remain critically ill. Ugghh. Even though I know he is super sick and progress has stalled out, seeing it in writing just stings. And stinks. I sit and wait and pray for healing. Thank you all for your continued love and support and prayers. We are so grateful for you.

Monday, September 27, 2010

Sunday morning Jameson's progress seemed to have halted. He de-satted (oxygen % saturation dropped into mid 80s) several times Saturday night. His kidney function showed further decline (creatinine 1.1 BUN 58). His abdomen actually increased in size. His stool remained watery and became greener. He had a metabolic acidosis. He had a fever spiking to ~101.5, his heart rate was up, and he just generally looked sick. The major variable seemed to be starting interferon therapy Saturday morning, which was the original medication delivered to combat his underlying lymphangiomatosis a few weeks ago in St. Paul. The side effects of the drug are not great, but usually not too bad, giving most of the symptoms of influenza. There are instances documented where significant lung impairment/damage have occurred while on interferon. Given his previous decline on the therapy and his general regression in the first 24 hours of resuming interferon, it was held this morning to discuss more with heme-onc. The bit of great relief for the day was that he does not have C. diff causing his diarrhea...thank God!! He is now off the paralytic, but on more sedation. Last night he actually opened his eyes and squeezed my hands for about 20 minutes, it was great until the sedation took hold again. Yesterday afternoon and last night he actually did very well, but his kidney function didn't improve. Hopefully holding the interferon helps his kidneys today. His xray this morning actually showed the right upper lung lobe opened up a bit, basically the first time in weeks, so hopefully progress continues!! Today, we'll be getting a surgery consult on his left chest tube to do something about it's lack of draining the fluid around the left lung. J-man continues walking a fine line, hopefully he can break into a strut this week (preferably today)! Again, thank you for your all your support!

Saturday, September 25, 2010

Jameson's first day off ECMO was great. After his periodic adjustments by the nurses he kept getting really comfortable -great vitals!! He did spike a fever Thur evening and again early this morning, but we suspect it's not an infection. His kidney function appears to be declining a little bit, but we kind of suspected it might since we doubled his special elixir a couple days ago. J's bowel movements still haven't really returned so he's still not being fed via his intestinal tube anything substantial. Today's chest xray showed mild improvement so hopefully it continues. His nurse the other night was an absolute workhorse so he got a good scrubbing including a hair wash. He suddenly smells less of sterile adhesive and more like a finely primped stallion, more Celtic than Italian. Capping yesterday's steady, relaxed day was a blood gas showing better ventilation allowing even better ventilator settings (those curious - his PIP is only 24, PEEP 10, rate 18, and FiO2 is down to 45- so substantial improvement this past week). We're still holding off on the tracheostomy in hopes he might be off the vent in a week or so. Jameson plans on watching some football today, but insisted we not tune in the Gophers so as to not upset him (he's a realist).
Enjoy your weekend!

Thursday, September 23, 2010

We are officially off ECMO and on a traditional vent! J is doing awesome right now. Praise the Lord for the miracle J is!
J continues to impress us. His labs are all fine, not even immunosuppressed from his new meds yet, hopefully that continues. ECMO did most of his breathing last night to give his lungs a little more rest before his big day today. His chest xray looks ok. The left lung's fluid surrounding it seems to be less, and we are actually seeing some fluid drain from the left chest tube (it's been barely weeping despite the apparent abundant fluid in his chest by xray). The right upper lobe of his lung looked good yesterday afternoon after his bronch, but it was collapsed again on this morning's xray. So we repeated the bronch and sucked out some major nasties, Adam Sandler would be impressed. The most promising bit of this is that he tolerated the bronchoscopy really well on just the ventilator (no ECMO support). His blood gases look good, and assuming they continue to be good at noon he will be removed from ECMO this afternoon! We'll discuss left chest tube placement to get better drainage and tracheostomy later today... knock on wood (my skull). Yes, progress continues!! Thanks again for all your thoughts, prayers, and generous's comforting to know people are rooting for him!!

Wednesday, September 22, 2010

Jameson is at the tail end of a 6 hour trial with ECMO "off". He has done really well but his overall fluid is up for the day and he still has fluid hanging out in his chest cavity on the left side. Yes, that left chest tube that has given us do many headaches is at it again. It seems to be clogged and they can't really do much about it while he is on ECMO. At six they will turn ECMO back "on". The plan is to have him on ECMO for the night and trial again tomorrow morning. If all goes well and his left chest cavity and tube cooperate they will unhook ECMO and take the cannula(sp??) out of his neck.
Tomorrow -or even later tonight we should also find out if the sirulimus level is where it should be. If so his dosage should hopefully be very therapuetic and we should hopefully see our boy improve dramatically over the next week. I am sitting in his room and watching the beauty of his chest rise up with each breath- something that was absent a week ago. Last week at this time his chest didn't move at all and breath sounds weren't present at all. He has come a long way. My little miracle baby. My amazing gift from God.
I suppose it could just be that he heard the Twins won last night. It could also be the Enya ban -but in my defense, I'm not even a huge Enya fan. He needed mellow music and Uncle Nick had Enya on his computer. What's a mom to do?? I guess Dr Daddy wants to stick with all Radiohead all the time.
Praise God! Jameson still has a long ways to go before he will be considered even remotely stable, but we seem to be on an incline instead of a decline.
Yesterday we finally got the Sirolimus level back from Mayo. It was about half way to the target band, so his body's clamping down to slow leakage of fluid (albumin and other proteinacious fluid) out of his vessels into tissue. This is good news. His body is responding to therapy at a low level so hopefully we'll get a more aggressive response in the optimal therapeutic band. He was doing really well yesterday, basically living for several hours without ECMO gas exchange assistance (breathing just on the ventilator). We were actually hopeful this morning that he might be pulled off ECMO, but now we're not so sure. His chest x-ray showed right upper lobe atelectasis (collapsed lung) and moderate effusion in the left lung. So we're doing another bronchoscopy this morning to try to open the right upper and they're just about to fiddle with the left chest tube to promote drainage...hopefully he doesn't bleed (lots of blood thinners on ECMO). Two steps forward one step back. There has been an outright ban on Enya in his room, so we're not sure what's driving the slight regression...did the Twins lose last night? Maybe there was an economic report, a jobs forecast, some news blip on the radio last night. Anyway, today we're praying for better chest tube drainage on the left, clear lungs, and ECMO removal.

Sunday, September 19, 2010

Jameson has certifiably developed some momentum. His labs show his kidney function is still improving. His creatinine fell a little to 0.8, and his BUN came down to 42. He lost about a pound of fluid weight (now below 13 kg - we're shooting for ~12kg) so diuresis was scaled back a bit, and, of course, he's still making plenty of beautiful urine. He had a tidal volume of ~35ml this morning and steadily improved all day following a bronchoscopy that successfully removed goobers dwarfing even those accumulating on the upper lip of PC on a cold January morning. The last time I looked I lost my breath - 117ml at a maintenance ventilator setting while on ECMO!! He's opening more of his airways and actually exchanging more gases. I suspect we won't be off ECMO anytime in the immediate future, but hopefully it's on the horizon now. The little-big news we're waiting on will be coming out of the Mayo Clinic's laboratory. We were hoping for his Sirolimus (aka experimental silver bullet chemo drug of sorts) blood level to assess if he's in the target band for effectiveness. I'm hoping he's sub-therapeutic and his body is re-establishing the equilibrium it had prior to surgery with his disease, and the drug will only enhance his ability to control it (or a low drug concentration is effective without a host of adverse side effects). Either way I'd be tickled. The Heme-Onc doc this morning said she'd just be happy to know the drug is working so he can rely on it whenever he has a flare up. He also got a Roc-holiday (paralytic reprieve) for a good 6+ hours, so I got to see him respond to my voice and hard not to pick him up despite the 23 lines emerging from his body. I like to think he was catching his breath all day so that if the time came when he wasn't so paralyzed he could thank the nurses for their efforts and me for promising not to subject him to his mother's Enya today.
It was a good day, no a great day, and despite still being deep in the forest it seems slivers of light are finding their way through the dense stands.
The night before last Jameson was given albumin to help pull fluid out of his tissue spaces into his vascular space. His kidney perfusion likely improved and he started to pee well for the first time in a long time. He jumped to over 90ml an hour (he had been in the 20s for a long while). His kidney function as indicated by his labs (creatine from 1.7 to 1.4 and BUN in the 50s to upper 40s yesterday) showed improvement. Yesterday seemed like a poke in the right direction, a reluctant promise, but today.... Creatinine 0.9 and BUN in low 40s...J's kicking some serious can!! The previous couple days he's been moving basically 0 ml of air on his ventilator- nearly complete atelectasis of both lungs. Tonight he's been steadily moving over 20ml and his chest film shows his airways are opening up...promise, hope, GREAT NEWS!!!!!!!! He must be a son of a gun (ask Dr. Jain), as this boy's strength certainly eclipses mine by any measure! God willing, he'll keep marching!
Cheers - the first of many,

Friday, September 17, 2010

Back at the hospital. During rounds the Dr said he was pleased with how J is handling ECMO. They are planning on aggressively treating and opening the lungs. So far the cultures from the lung loogies are coming back negative- no infections. We are going to try Metaneb today and see how he tolerates it. Metaneb is a newer procedure and it doesn't look like it has ever been used with ECMO, so we are going to start slowly and cautiously. Hopefully it will work!
I got Little Man into the clinic this morning and the strep test was negative but his throat is still really sore. Fever was gone, though. My brother bought Hubs and me large packs of Emergen C and another Immune booster thing...hopefully it will help us to stay healthy. But just in case, I'm rocking a stylish green face mask in the room and not getting too close to my sweet baby.
I brought him some fun love from home today- dinos galore!! He has soft dinos in his bed, plastic dinos on his shelf, a dino quilt covering his precious tummy and toes. I also brought my ipod and little stereo in so he can listen to some good music even when the awesome music therapy lady isn't serenading him. The doctor asked us to save the AC/DC until he is off sedation, but Radiohead and Bocceli have worked well this morning.
Our nurses are going to go into sugar comas with all the candy we have in the room. So far they like us and we love them, so this is working out well! I cannot say enough positive things about the care Jameson has been getting since this began. We love Children's and I am so grateful that we were here when this all happened. God is so good to us and I absolutely believe he put us here for a reason. Our Baby J is in excellent hands.
I am at home tonight with my Little Man and my mom and dad and Grandma and twin brother and almost sister. It is awesome to have everyone in town loving on us and staying with us. Hubs is staying at the hospital tonight and hopefully getting some studying done and eventually sleeping. It is always weird to leave J and I feel slightly guilty about it but at the same time, it is so nice to come home and see Little Man and snuggle and read books and tickle and laugh. I long for the days when we can all be home and happy together.
Today at the hospital J had a bronchoscopy(sp?). It was really cool to watch. His lungs looked okay on the inside- not red and inflamed and really yucky. The right one has some yuckiness in it- loogeys, if you will. That seems to be the reason for the collapse least part of it. The pulmunologist was able to suck out some of it and spray an enzyme on the parts he couldn't suck that will hopefully break it down so it can be suctioned out later. We are also hoping to start metaneb tomorrow. Metaneb is a treatment that blows high frequency air into his lungs- like 180 breaths per minute- that shake his lungs and hopefully loosens all the junk inside. If they can get the junk out, his ability to breathe should hopefully come back and then we can get off ECMO. If it works. Hopefully. God willing.
The rapamiacin has been in his system for over 24 hours and it is showing on the lab reports. It is very similar to chemo therapy and his white count is dropping a bunch. Starting tomorrow he may have some new room rules because his immune system is so run down. His doors will be closed and everyone will have to wear a mask, gloves, and a gown to get into the room. And by everyone I mean his Drs and me and Hubs because we aren't really letting anyone else in...Okay, Auntie K and Grandma, we will let you come, but that is about it....
And just to prove that timing is everything- after loving on Little Man for about 15 minutes tonight, he starts complaining about a sore throat and has a slight fever... Wow, did I pick a great night to come home or what? I'm now avoiding him and washing my hands every five seconds and praying no one else picks up whatever plague he probably got a preschool Tuesday. Gotta love the inevitable back to school sickness! Praise Jesus and pass the vitamins.
We truly love all of you - even those of you we haven't met. We are amazed and so grateful and so humbled by the outpouring of love and prayers for our beloved J and the rest of this crazy brood. You really can't come close to knowing how much we need and appreciate the prayers and support. So, yet again, thank you. And God bless you all too. Oh, but DB & JB, God bless ya'll.

Thursday, September 16, 2010

The most exciting news I have to share right now is that I had birthday cake for breakfast. J is stable because the machine is regulating everything. The next week will pretty much be a wait and see week. We are still waiting on cultures to see if there is an infection in his lungs. As of right now the drs are still holding off on kidney dialasys.
They might try metaneb today. I'm sure all my St Paul nurses will know how happy that makes me. We love you over there and can't wait for J to be well enough to bring a birthday cake over and visit!!
Now we wait! I'll do my best to update with any news as we get it.

Wednesday, September 15, 2010

So far the ECMO seems to be going okay. I think the goal is to see where we are in a week. Hopefully the rapamiacin will be working and his lungs will have healed enough to come off. The longer ECMO is used to more risky it becomes. Things like blood clots and brain hemmorages can occur and time on the machine seems to make them more likely. Every person seems to have their own ECMO limit. J has two nurses in his room at all times. One is in charge of ECMO and the other takes care of everything else. He gets labs run many times during the day and the amount if information and the number of machines in the room are mind boggling.
We started rapamiacin today and his hematologist is optomistic yet understandably nervous. As are we.
We also had birthday cake today. I'm hoping that got us off to a good start with the staff. Especially since we have yet to buy nurse candy. We'll get there. But seriously- cake. Auntie K ordered this raspberry marble cake decorated with dinos and it was awesome. She went all out. We sat in the family break room and wore party hats and crazy sunglasses and sang happy birthday. We didn't do it in the room- partly because I think it is a cake-free zone but also because Little Man came down and he can't see J like this. It is just too much.
Hubs and I are both exhausted yet not really able to sleep. I keep pacing- I should have gotten a pedometer when we arrived- I have probably walked miles in the PICU hallways of both hospitals already. So far no one has kicked us out of the room we slept in last night...maybe the cake will get us another night or two. Everyone here is awesome and they seem to be doing a great job taking care of my sweet Jameson.
Thank you all so much for your kind words and prayers. I often find myself checking email, facebook, and the guestbook when I need a pick me up. It helps to see your support and know we aren't struggling alone even when we feel like it.

Jameson is now hooked up to ECMO. It is amazing how fast he went from slightly stable to death's door. It is amazing how he found the strength to make it through the transport. Hubs and I both agree that is has never been more glaringly obvious just how tenderly God holds our fragile boy in his arms. How's he held him and strengthened him to make it this far. Literally seconds before the ECMO machine turned on his lungs massively failed. As I sit here listening to the thunder and lightening and think about my babe resting and healing just down the hallway I am reminded of just how awesome and powerful and merciful my God is.
ECMO is a machine that pumps all of J's blood outside of his body, thins it a bit, oxygenates it like the lungs do, and then pumps it back into his body. This allows his lungs to rest and hopefully heal. What this does is buy us is time for the lymphangiomatosis treatments to kick in. We will be meeting with more specialists in the morning and J will probably start a new treatment that will hopefully work more quickly that interferon. Rapamiacin is a medicine we were hesitant to try before as it can cause pulmunary edema and renal failure- both things that J's body have been struggling with already. Miraculously, ECMO will control the lungs so pulmonary edema is not a huge concern and dialysis can be added to ECMO making kidney failure much less of a problem as well.
ECMO is a risky procedure but J was running out of time. We are hopeful that he will be able to heal while his body rests.
We no longer have a sleeping room at the hospital but the nurses generously gave us an empty room last night. J has so much equipment that even fitting a chair in his room is a tight squeeze. At this point, I don't think we are ready for visitors besides family. Please keep the birthday boy in your prayers and praise Jesus for all three glorious years.
Jameson was just transferred to Children's Minneapolis. He is fighting for his life. They are hooking him up to ECMO. It is risky and we need all your prayers. I will update when I am able.

Tuesday, September 14, 2010

Up and down. Up and down. That's the way we roll. This minute is up. Looks like they are planning on replacing his IJ line today with a fermoral central line so his tape wounds on his neck have time to heal before the trach surgery which is tentatively scheduled for Monday. He is also tentatively scheduled to head to the OR on Thursday to get the broviak (tunneled central line) put in.
Kidneys are still not doing great so renals drs are coming to consult again today. They are also doing an abdominal ultrasound to see what is going on with his kidneys and to check out the fluid build up in that area. We just need his body to hold togethr until the interferon kicks in. Hopefully that will happen soon. Until then we just have to keep praying that the drs can keep patching him up and keeping him relatively stable.
Oh and it sounds like the left chest tube is already not draining. What a headache. I hate chest tubes.

Monday, September 13, 2010

I am hesitant to update right now because he seems to change gears so quickly...but good news needs to be shared. The clot buster appears to have worked wonders on the left chest tube. Drainage is improved and lung quality also seems improved. Please don't stop praying though! He is still critical and we have yet to see lasting stability. If he continues to stay about this good he will have his trach surgery later this week. I am so surprised to say this, but I'm really looking forward to it. I am hopeful that it will make him more comfortable, lessen his sedation, and help some things like eating get back to normal sooner rather than later. Which is a good thing because we can't keep 3rd birthday cake on the back burner forever! Wednesday is his birthday...I can't believe he is already three.
We are in a good place this minute and I pray it stays this way. This rollercoaster of good and bad stats is exhausting for everyone.
One of the new chest tubes is already not draining so the surgeons are going to inject a clot buster into it to hopefully clear it out. If it doesn't work we may have to head to the OR for the VATS procedure. But right now, he isn't stable enough for the OR. Everything is so touch and go right now. He seems to be going up and down hourly. I am so afraid and trying so hard not to look down that road but sometimes it is so very close. I keep pleading with God to not take my baby and then I just wait and hope and cry.
He is such a fighter and he has been popping back up every time he comes down and that is so encouraging. They did an echo today because he has been having such high heart rates. His heart is still perfect, praise Jesus. We are all still fighting as we wait for his interferon treatment to start working. Please continue to pray for the treatment to work and lungs to strengthen and work.
High heart rate plus low blood pressure plus rising temperatures plus cold extremities equals an infection brewing in sweet little J's body. Because he wasn't dealing with enough already...

Sunday, September 12, 2010

We have new chest tubes in the old holes that are draining. Sounds like VATS is on hold. The oscillation vent was started and stopped and he is back on a traditional vent system with nitric oxide. It is working wonderfully. Unfortunatly that means that his lungs are constricting as a result of his sickness and he will most likely be on the vent until his treatments have started working. The hemotologists(they are the lymphangiomatosis specialists) are concerned about all these lung issues and the kidney issues that I've forgotten to mention and have asked us to think about a different treatment since it seems he is deteriorating. The kidneys aren't as bad as they were 10 days ago but they are worse than they were yesterday and the day before. We are hoping it is a result of some renal toxic meds he is no longer on and they will improve now that is is taking different meds.
Trach will probably happen later this week. Sedation will still be heavy for a few weeks at the least. Sounds like he may get a new central line tomorrow and then a more permanent and tunneled cetral line surgically put into his chest when he gets the trach.
I hate this so much. I hate that this is long term problem and it needs long term solutions. I hate how much medical info I am learning. I was so happy when House was just a tv show and not my life. I want to bring my baby home and hear him laugh and watch him run and cuddle on the couch and read books together. I don't want to be this strong.
Started oscillation ventillation. He seems to be doing okay. The pulmanolgist said he's going to require ventilation for a long time so he will most likely be getting a trach in the next day or so. To me that sounds so awful and scary but the drs have all said it is more comfortable and humane for him. He'll be more comfortable and be able to eat sooner too. I didn't ask but I'm hoping it means sedation can be lightened as long as his oxygen saturation stays good.
Sounds like he is going to get a new central line too but we aren't sure where the placement will be. Lots of things are going on and lots of things are depedend upon others so our game plan is in flux. Please keep praying. Today and this week are very critical and J needs all the love and strength we can give him to get through.
Struggling bigtime with lungs. The morning chest xray showed a lot of junk in the lungs and the pleural space(outside the lungs). Surgeons are going to put in new chest tubes and if that doesn't help with the pleural space fluid he may head back to the OR for a VATS procedure, which- I think- is like vacuuming out the area outside his lungs.
In order to help with the fluid in his lungs they are going to possibly try giving him nitric oxide to see if that helps with o2 blood saturation. They are also going to try a different type of ventillation called occilation which will kind of shake his lungs and loosen some of the junk in there so they can suction it out. They will have to increase his sedation for this. It isn't very comfortable.
I think the plan today is at least five big steps, so we shall see how it goes. I will do my best to update as this busy day goes on.
I'm still at home this morning watching cartoons with Little Man. Hubs is here too for breakfast. He said J had a rough night and had to be bagged for 15 minutes. Tummy time seems to help his lungs but he had to be paralyzed the whole time so he doesn't shake his head and dislodge the breathing tube. The way he just drops is puzzling the docs...and I don't like it one bit. Hopefully we can run some tests today and figure it out. Off to the hospital!
Oh, Little Man is coughing...please pray we don't get sick.....can't vist J if we have colds...

Saturday, September 11, 2010

Yes, no news is good news...or at least stable news. Blood pressure is still up and down and he has been periodically desatting, but nothing severe. No bagging and no clergy. Amen to that. So, we sit with our critically stable son and wait. And wait. And wait.
Little Man came and saw his brother yesterday. He was intrigued with the drainages tubes and catheter. Typical four year old. He also told his brother to get well soon and kissed him. It was sweet.
Hubs spent the afternoon at home playing with Little Man and kicked me out last night. I tucked my sweet boy in and told him a million stories about boats before bed. He insists on wearing airplane pajamas to bed because he thinks the jammies dictate his dreams. If only it were that easy! I'd go on a Jammie shopping spree...oh peaceful sleep, how I miss you!
Not much else to say. As of now it is a waiting game. We pray that the treatment starts to work soon and that he can stay strong and stable through this critcal period. I look forward to the day when he doesn't need dozens of drugs and machines to keep him going. Until then, we wait.

Friday, September 10, 2010

Today is better than yesterday. His stats and lab are almost all improved. His blood pressure has been diving but they are regulating it with dopamine. They have lightened his sedation a bit to help with the blood pressure and this morning he opened his eyes a few times and saw his mama. He was also squeezing my hand and holding his blankey with all his might. What a gift. But then he got a too spunky and they bumped his sedation up a bit.
Physical therapy is coming to move and stretch him every other day to so he will be able to walk, etc when this is all said and done. So far everyone on Team J at the hospital has been awesome. If we have to be anywhere other than home I am so glad we are here.
We've recieved a number of cards, packages, snacks and meals from our family and friends. Thank you so much for all the love and prayers. We also love to hear from you- emails, facebook, and the guestbook all help encourage us. And now i'm off to get my free chipotle burrito- thanks you MN Wild. TGIF.
J is still desaating but hasn't had any really bad drops since this afternoon. Your prayer help- please keep praying. He just got a new arterial line put in to get more acurate readings. Jameson keeps at least two people busy working on him 24/7. He constantly needs suctioning, moving, tube stripping, medication pumps started/stopped. The beeping is pretty constant. We aren't quite sure why he went from doing pretty well lungwise yesterday to this. It may have something to do with effussion in the pleural space. It may have something to do with mucus build up. It may be him fighting against the breathing machine- sometimes his saturations improve after they give him a paralytic.
I wish I knew where he was to give you a good picture. He isn't really stable, but it isn't terrifying at every moment either. He is very critical and will be for sometime. But my little guy is quite a fighter and doesn't seem to giving up.
It is so hard to be here but even harder to leave. Going home and spending time with Little Man is so difficult because I'm still "here". I wish I could be in two places at one time. My Little Man needs me too but leaving J when it is like this is almost impossible. He is missing his mommy, daddy, and his best friend. This just sucks for everyone.
I hope and pray my little one stabilizes soon. My wish is that we can all be home and together for Christmas. But maybe we can just make it through this night first...

Thursday, September 9, 2010

Jameson seems to think I need more grey hair and possibly a hear attack. He keeps desatting and has had to be bagged twice today. The second time he was bagged for over an hour and someone in PICU even paged clergy. I don't know how anyone thinks that can reduce stress and nerves. Please pray for J to stabilize.

Wednesday, September 8, 2010

One of Jameson's new medications is causing low blood pressure and in order to correct it he had to get a new artery line, a new IV and one more medication.  His poor body now has iv's in both hands, one foot, and his neck.  While the pokes are not great, the medication is keeping him in a stable and somewhat comfortable state and that is great.
He actually had to get a second tree for all of his medication pumps.  That means there are three different computers with 10 different pumps all pumping meds, fluids, transfusions into J- but not all at the same time. And that isn't including the pump for the food going straight into his intestine or the huge computer regulating his oxygen.  I don't know how the nurses keep it all straight.  They are saints!  

Tuesday, September 7, 2010

I am sitting next to J's bed tonight and trying not to think about where we are supposed to be. Tomorrow Jameson is supposed to be in Minneapolis at a Target photo shoot working the camera. Thursday he is supposed to have his first day of preschool. Instead he is lying unconcious in a hospital crib with tubes breathing for him, tubes draining yucky things from him, tubes medicating him. How did everything turn upside down so fast? How did this happen to my happy, healthy baby?
I always marveled at the strength of other people when facing crisis, thinking there is no way I could ever be that strong. But here we are. Alone I am not this strong. But I am not alone. We are not alone. We have family and friends- more than we could imagine- rallying behind us. We have an amazing medical staff helping to heal J's body and soothe our nerves. And most importantly we have our Saviour walking with us through this valley.
I don't even think it is possible for heart to break any more than it has this week. There is nothing more agonizing than helplessly watching your baby suffer. But I have faith that we will make it through this together.
We started treatment yesterday. There is no cure yet, but hopefully Hubs can start pestering researchers at the U! The treatment hopefully will shrink/stall the tumors so they stop leeching fluids/blood into his body. It can take a while to find the right treatments that work and we are hoping that Jameson's body responds well to the interferon(sp?).
The treatment gives him flu like symptoms. He was feverish and shivering for a while last night. Getting another chest xray for diminshed lungs this morning and more FFP(fresh frozen plasma). I know way more med lingo than I ever dreamed. Hubs had to go to class this morning. This will be a very tough year for him.