Monday, February 27, 2006

Alexander's life 2-27-06

MONDAY, FEBRUARY 27, 2006 11:59 AM, CST
Alex had another day of resting yesterday, he woke up some here and there but when he did he wasn't comfortable so they gave him bumps of his pain medicine.

He's not peeing real well unfortunately and he took on some more fluid on Friday night when they had to stabalize him, last night they restarted one medication called Nesiritide which draws fluid out of his tissues, the downside of it is that it's a new medication and not compatible with a whole lot so they have to run it with a lot of fluid, so they had to stop his nutrition to cut back on fluids. Even still it added to his fluid intake, almost seems like it defeats the purpose....

His white cell count today came back elevated which means he's probably fighting an infection so they started another antibiotic along with the prophylactic ones he already gets to try to wipe out whatever it is he's fighting. We were really hoping to get through this and get him closed without an infection.. but what can ya do.

They tell me they are gonna try to close him again tomorrow now. I am very frustrated about the whole thing because of the fluid he's taken on, his heart didn't handle it that well before and now he's even bigger so it will add that much more pressure to his heart for them to try to do it. Friday really set things back.......

Keep those prayers coming that we can get over this hump and they can by some miracle get him closed tomorrow.

Saturday, February 25, 2006

Alexander's life 2-25-06

Alex had a more stable day today. He was pretty tired from all the stress of last night and he's not peeing so well again so he's a little puffy. It's frustrating these backslides but we gotta take what we can get. They did some liver tests on him to figure out why his blood isn't clotting so well and those came back fine, they also did a full body ultrasound to make sure he's not still bleeding in there anywhere but we don't yet know the results of that.

Alex got to move to the side of the room with a window today, that's a nice change of scenery, we've been stuck in the corner for 3 weeks now and now we have more space, hopefully Alex will be happier over there and not pull anymore of his little tricks.

They decided with the fluid he took on that trying to close him now would be futile, if he didn't handle it without the fluid, he's surely not going to WITH it so now the plan is to wait until Monday or Tuesday to try again, give him some time to rest and get rid of some of that fluid.

So were back to praying for pee!

Alexander's life 2-25-06

Well, Alex didn't think too highly of the chest closure attempt. They got him together and he was struggling some so they just wired the top 2 bones together and closed him up. Well........ he decided it would be fun to hemmorage.... It was very very scary, he was riding that line for quite a while. they had to go back in and snip the wires and stop the bleeding.

Looks like they are gonna take another crack at it tomorrow, they wanted to today but the majority said no, let him rest today.

So pray tomorrow goes well!

Thursday, February 23, 2006

Alexander's life 2-23-06

His washout got postponed until tomorrow. They are still planning to try to close him so keep your fingers crossed he tolerates it and they are able. Then we work off the vent and off the narcotics.

We got some good news today. His chromosome study came back normal! He doesn't have Digeorge syndrome which can be associated with the heart problem he has. I don't know much about digeorge, but I know that it can be really bad and were thanking God Alex doesn't have it!!!!

He was good today. Wide awake and being adorable as usual.

Wednesday, February 22, 2006

Alexander's life 2-22-06

Alex had a pretty stable day yesterday. In the evening his blood pressure came down and his daddy of course worried like crazy, I guess one of the docs told him this is actually a GOOD thing, his blood pressure came down to a NORMAL newborn pressure and he didn't drop his sats or heartrate, so that shows a step in the right direction!

They are saying they are pretty sure they can close tomorrow, say a little prayer tonight that they finally can!

Tuesday, February 21, 2006

Alexander's life 2-21-06

TUESDAY, FEBRUARY 21, 2006 09:23 AM, CST
Alex's washout yesterday went well. The night before last he had a bit of a rocky night and they don't really know why. They ran some tests yesterday and didnt' really come up with anything significant and he's been pretty stable since so we just don't know if it's a brewing infection, if it's because he's losing so much fluid so fast that it's taking important things with it, or what exactly so they made a few chances yesterday and are replacing some of his fluids, just to see.

They weren't able to close him yesterday, still a little too puffy. Maybe Thursday, or Monday....but soon!

Sunday, February 19, 2006

Alexander's life 2-19-06

SUNDAY, FEBRUARY 19, 2006 08:36 PM, CST
Alex continues to do well. He has completely given up on sleep though, they added a drug and upped another one today and he slept maybe 30 minutes.... He seems to be saying enough with sleep lets get on with things!

He is peeing a ton and losing lots of fluid through his chest tubes, he's shrinking fast! His little hands are soooo tiny we forgot how small he actually is under there!

Another washout tomorrow. I am HOPING they can close him but not counting on it, he's still pretty puffy in the chest area and I'm preparing for having to wait. We just can't wait to hold him and he has to be closed and stable first. Were told when they do close him it'll be rocky for the first 24 hours, his heart isn't use to the added pressure of his breastbones being over it so it will add some stress to his heart for a bit until he gets use to it all.

He developed a tremor today in his hands, they said it's from the narcotics he's on, much as a drug addict will tremor :( Poor baby.

Saturday, February 18, 2006

Alexander's life 2-18-06

Things continue to go well. Little Alex seems to be at this point healing nicely. One of the docs yesterday made a comment about extubating next week......... we'll see. It would be nice!

There isn't a whole lot to report at the moment, boring is good!

Thursday, February 16, 2006

Alexander's life 2-16-06

a little late on the update today. It's more difficult to get on a computer now that Craig and I have swapped shifts at the hospital. Alex didn't have his washout today because the surgeon was in the OR all night but it's scheduled for tomorrow AM. They did get his NO turned off yesterday and he didn't seem to care one bit! His epi is the lowest it can go and his bp has actually stayed HIGHER than they like.

He's had enough of this whole thing they call sleep and has been awake all day, just wide eyed zoning out on his mobile. He's dropping the water weight nicely, you can really see the changes in his face and hands and feet. They are hoping to close his chest the end of next week.

They did a repeat ultrasound of his head and found that one of the spots that were bleeding cleared completely and the other, although it hasn't isn't of conern! Wonderful news. His leg that had the clot is looking much better, is warm and has good color now so they aren't too worried about that either. His echo today looked great.

The neurologist looked him over yesterday and said everything looks good, he even flinches when they shine the light in his eyes which they say is a great sign. He's also tracking objects with his eyes when he's awake.

when he's awake he breathes over the vent almost 100% of the time. Go baby go!

Wednesday, February 15, 2006

Alexander's life 2-15-06

Alex is doing great today. They are turning his NO machine off today to see how he does! (The nitric oxide helps keep his pulmonary arteries from spasming) His epi is lower than it's ever been and I was informed by his daddy a few minutes ago that he's alert and looking around right now and breathing himself so his nurse got him a mobile to look at. It might not seem like much, a mobile but healthy babies get toys........ that's how we see it.

He's peeing good and the fact that he can open both eyes now shows the swelling is starting to subside. We don't notice it because we see him all the time but the proof is there. Go baby go!

He has another washout tomorrow, really hoping he tolerates it better than this last one.

Tuesday, February 14, 2006

Alexander's life 2-14-06

TUESDAY, FEBRUARY 14, 2006 12:28 PM, CST
Well, 2 steps forward one step back it is. Yesterday he had a good day, even woke up and started breathing, what they call triggering the vent. That was very exciting for me. They had to move his line that carries his heart meds because he developed a clot in his leg though, as far as I know it's just wait and see what the clot does...

He had a washout yesterday and had a tough night. They needed to turn his epi back up tot .3, the highest they can put it because his blood pressure wasn't staying up:( They say these things are expected, but it doesn't make it any less frustrating when you see him getting better and then just like that we backslide. Craig took day shift today because I'm just having a rotten time with all of this so I thought it would be better to just give myself some time to work through my feelings before going in this afternoon.

Monday, February 13, 2006

Alexander's life 2-13-06

MONDAY, FEBRUARY 13, 2006 09:09 AM, CST
Alex had a really good day yesterday. They tested the waters a bit by going down a bunch on the 2 drugs he's been needing to keep his blood pressure up and he did GREAT. They also lowered his vent settings bringing him one step closer to getting rid of that.

His swelling has gone down a little, he's peeing really well now. Yesterday he was actually able to open one little eye and look at us for a bit! It was the first time I'd seen his baby blues since the day he was born and it was really nice.

He's still got a lot of work to do, but the docs say he's realling turning the corner and healing. He has wash out today and hopefully next week the swelling will be down enough that they can close his chest.

Sunday, February 12, 2006

Alexander's life 2-12-06

SUNDAY, FEBRUARY 12, 2006 09:08 AM, CST
Things continue to look like they are moving in the right direction. He's peeing better, his weight was actually down a few ounces today! They have been able to come down on the 2 drugs (epinephrine and nitric oxide) that he was maxed on before, needing them both just to keep his bp and sats up. they might do a wash out on him today, not sure yet.

Today is his big brother Christian's birthday, so he's on order to be extra good today hehe

Saturday, February 11, 2006

Alexander's life 2-11-06

So yesterday was a decent day. The echo showed good flow to both lungs and his heart muscle is pumping well, wooohoooo!

I found out something scary from one of the other former ecmo moms, the day they were thinking about putting alex back on it...... I'm glad they didn't. when her son came off and had problems she was told that they wouldn't put him back on it, cause they have lost every child that had to go back on! eeeeeeeeek I'm glad I didn't know that then!

He still needs to pee more. they turned down his epi last night to see what he'd do and he dropped his bp some, but not drastically although they did have to give him some Albumin through the night to bump it back up which made him gain a little more weight..... as if he needs anymore! He was 10 lbs 8 oz yesterday. He is peeing better, but still not enough to make headway with the fluid he has in his tissues yet, so keep sending those pee vibes.

Friday, February 10, 2006

Alexander's life 2-10-06

FRIDAY, FEBRUARY 10, 2006 09:10 AM, CST
Quiet night and day yesterday. He started peeing! He just needs to do it a little more and maybe he can get rid of the 'michelin baby' look he's got going on. They weighed him yesterday....... 10 lbs 2 oz! Over half that is fluid, so you can imagine how swelled he is.

Not a whole lot to report. He's still got lots of work to do,making his heart do the things it's suppose to. It's hard work controlling all those body functions yourself!

Thursday, February 9, 2006

Alexander's life 2-9-06

busy busy day yesterday. Were off ecmo! He was quite a stinker though yesterday afternoon, his blood pressure and sats dropped very low so they had to max him out on epinephrine to get him to stabalize and he did. He isn't peeing all that great so send Alex potty vibes! He's so swelled up his weight this morning was a whopping 10 lbs 2 oz!!!! More than double his actual weight in fluids. He NEEDS to pee.

This morning he's doing better. Being a little naughty with his blood pressure but his sats look good. This first 24-48 hours off ecmo are rough on him. His heart is, for the first time ever, working pretty much like it should and that's a big adjustment on him. Keep the prayers coming!

Tuesday, February 7, 2006

Alexander's life February 7, 2006

TUESDAY, FEBRUARY 07, 2006 07:34 PM, CST
Sorry i haven't updated. I keep telling myself I'll update after they do this or that and it's just one thing after another and I get snowballed.

Alex has had a good couple of days now. Yesterday was pretty much just a day of rest, they didn't bother him too much. He decided that nap time was over though and freaked us all out. When they went to check his pupils he decided to open his eyes and look at the nurse! They upped his meds though and he's sawing logs again.

Today they did a bronchoscopy because they saw a shadowy area on his left lung and wanted to see what it was. It was some leftover blood and the top part was collapsed so they flushed it out and it shouldn't be a problem. They also did what they call a clamp trial on his ecmo, basically they took him off it for 30 minutes to see what he'd do and he did GREAT! The only thing keeping them from fully pulling him off was the fact that in those 30 minutes he needed a lot of fluid and they figured they'd set him back too much by trying to force it today, she said his heart muscle is stiff and will take a while to loosen up but they are giving him a med to relax it some and we are hoping tomorrow is the day! So keep your fingers crossed that Alex does well tomorrow and gets rid of that awful machine. So that's all pretty good news. His heart has healed, the repair WORKS!

Otherwise not much to report. Alex got a quick visit from his grandparents today, that was nice. Unfortunately the other baby in the room was being naughty again so we couldn't stay in there long :(

More tomorrow, hopefully i'll be able to report he's off ecmo!

Sunday, February 5, 2006

Alexander's life February 5, 2006

SUNDAY, FEBRUARY 05, 2006 04:23 PM, CST
Another long day. He went into surgery at 8am and right now at 4:30 were waiting for him to get up to his room. The repair was successfull in that they were able to widen the arteries and hopefully that will allow the blood to flow more freely through them. They weren't able to take him off ecmo today, as he had some bleeding into his lungs that need to heal. hopefully in a couple days. They did have an odd event in surgery, his spleen started to bleed for unknown reasons, his doctor said he's never seen anything like it. They were able to stop the bleeding though. His cardio says she can hear a nice strong murmer now so he should be good! She seemed much more optimistic than she did on Thursday night.

His head u/s also showed 2 small spots of a brain bleed which is something that is a risk while he's on ecmo due to them having to thin his blood. right now they aren't too concerned with them but please pray they absorb soon!

We added another picture in the photos section. It shows all of Alex's "toys". Just to give you a general idea of what he's doing here.

Thank yo all again for your prayers, and a special thank you today to Jackie for sitting with us and keeping our minds occupied

Saturday, February 4, 2006

Alexander's life February 4, 2006

I'm updating again tonight because there has been a change in plans. His echo today showed his heart is working very well (woohoo) but the repair they did isn't. So they have to go back in tomorrow, go back on bypass and fix it. He goes in at roughly 8am and they said it should take 2-4 hours. Keep praying that they are able to fix it, and that his heart has recovered enough to not need the ecmo machine when he comes back up and that he can be on his way to recovery. A huge thank you to Trista and Nathan for being wonderful friends and taking my other kids while we are dealing with yet another surgery. We hope you never need the favor returned but we owe you one.

Alexander's life February 4, 2006

I've decided to start updating this in the morning since I'm at the hospital during the day and then Craig and I switch places in the afternoon, it's hard to get on the computer at the house with the kids.

Alex had a good night. They had to do a wash out on him last night (they use sterile water to wash out his chest and get rid of any gunk in there) because his blood pressure was having issues. The wash out seems to have resolved it and he's having a bit more of his OWN blood pressure today which is a sign that his heart is doing more of the work on it's own.

Yesterday they did an echo and tried to turn down the ecmo machine (the bypass) but he wasn't ready yet, they are going to try again today. His head u/s came back good yesterday (to check for brain bleeds since they have to thin his blood for the ecmo) so that's good. That too will be repeated today and every day he's on ecmo.

They have to replace a couple of his IV lines today as they weren't working well. He now has one in his head, poor baby.

He's all puffed up like a blowfish which is kind of odd to see since he's so short it looks funny.

they are hoping to start to close him on Monday and hopefully he will be off ecmo soon! Keep those prayers coming!

Thursday, February 2, 2006

Alexander's life February 2, 2006

To say it's been a long hard day is an understatement. Our little man spent 13 hours in the operating room. At 4pm we were told they were finishing up and he'd be in his room in an hour. An hour and a half went by and he wasn't, so we found some information and learned that he had some bleeding issues and they were working on that. We waited with baited breath for what seemed like an eternity until the call came in that they were finishing up and the doc would come and talk to us.

Alex's tissues are so fragile due to him being so small that the stitches started tearing. So they had to put him back on bypass and put in more stitches to make the arteries hold together.

Right now they are getting him situated in his room. He's still on a bypass machine because of the time it took to fix him and having to go on bypass twice, his heart needs to rest for a few days as it is unable to pump strong enough right now due to the stress to provide enough blood to his lungs and body. His heart never stopped, it is just tired from all the stress of the day.

We should be able to see him in an hour. Please keep sending your prayers, he really needs them right now.

Wednesday, February 1, 2006

Alexander's life February 1, 2006

Tomorrow is on for surgery. To say we are worried is an understatement although our little guy has proven many times over that he is strong. He was baptised this morning.

I got to hold him pretty much all day. That was nice. He decided to keep us all on our toes though by dropping his blood pressure. Apparently he just got too comfortable or something. I realy hate those monitors, every time something beeps i don't breathe until it stops.

He is a little jaundiced today, my little pumpkin boy and his eyes are swollen from all the fluids going into him so he can't open his eyes, I can't wait to see his pretty eyes again.

During the cath I guess they did find something unexpected. Alex's pulmonary arteries, which are the arteries that connect the lungs to the heart don't connect to his heart at all. Literally the only thing keeping his blood oxygenated at this point is the PDA which is still wide open as you can hear the whooshing of his murmer anywhere on his chest. So tomorrow they will connect the arteries to his heart and put in a shunt, which is a doctor made PDA. I have been warned that they may have to leave his chest open for a couple days to let the swelling go down, and he may spend the night on ecmo, which is a heart/lung bypass machine. Hopefully neither of these things are required.

The plan is to get him fixed this much, to buy him some time until his little body can grow and be strong enough for the operation that will fix his heart completely.

We are terrified but hopeful. Soon I will be able to see my babies face without the vent.

I apologize for not getting the pictures on this site yet. Craig got the other kids today and I was at the hospital but holding Alex the entire time so I didn't get on that computer, and the computer here at the ronald mcdonald house I can't upload pics. They will come soon.

Please pray for Alex tomorrow. It will be a rough operation on his little body. Send him the strength to endure it.