Doing Better

Seth continues to defy the odds and is improving. We actually got to hold him for the first time in a long time on Tuesday. He's also off the ventilator and now on vapotherm. Yea!! He looks a lot better and has lot some of the swollen weight. So he's not at 8 lbs 15 oz.

He's eating, but still via a tube. And only about 5 cc's. Before he got sick he was at about 60 cc's which is about 2 oz. He seems to be out of the woods for now. They're not keeping him sedated all the time any more, and they are weening him off most of the meds--primarily the pain meds and the sedation medications. He's up a lot. They think it may have to do with narcotic withdrawls. Poor baby addict!! But he doesn't seem to be in pain, so that's good.

Not sure there's much else as far as an update goes. He continues to progress and we are grateful for every day we have with him--especially the good days as have been the case the past week or so. I'l post pictures soon.

Critical But Stable

I went to visit Seth today, as usual. Both last night and today played out pretty much the same. I arrived. He was satting in the 90's. I would put my hand on his head ever so gingerly just to let him know I was there and to show him some "positive" touch. He'd wake up, freak out rebel as only preemie babies know how...breath less, jack up the heart rate, and cause the monitors to beep, bleep, whir and siren. As if they were censoring their own curse words.

Ironically both last night and today the nurse was out on lunch break and another nurse was covering. So they had to call, interrupt her lunch and she'd come to the rescue. Seth would eventually calm down after being suctioned, diaper changed, re-wrapped like a little pig in a blanket and rotated to a different position. After spending 20 minutes satting in the 60's to 70's he'd finally return to the land of 90 just before I would head out each time. All in all it was about an hour adventure each time from start to finish. Makes the time go quickly, that's for sure.

But the other night that I visited, he was alert, looked around and was just calm. It was so nice, and I was so thankful for just that one evening. Just to see him kind of back to his old self.

Okay, I started this hours ago, and now it's late and I'm no longer waxing poetic. So that's it for now. Off to bed.

Surfer Baby

If I took the picture just right, my hair super-imposed on his and he looks like he has blond hair. Kinda funny...

Too Lazy To Write My Own

This was an email Janice sent to a couple of people today. I'm stealing it cause I just feel too lazy to write my own. Some of this will be repeat, but will give you the big picture of the past three weeks and the most recent update to today...

FROM JANICE:

It has been three weeks since Seth first got REALLY sick. Three LONG weeks filled with so many DEEP emotions. I'm sure this email won't even come close to sharing how I've felt. I'm getting teary eyed just typing this. Here's a quick update of our roller coaster ride so far....

Week 1 - The doctors didn't think Seth would make it through the week!...But by the end of the week, he was improving!! The doctor then said Seth was going in the right direction. He was still critical and it may be a slow recovery.

Week 2 - Thursday (10/14) at 4:00 in the morning, I got the first of three calls from the hospital letting us know that Seth's breathing and heart rate were dropping. They did another surgery to put in another chest tube and his breathing and heart rate were going back up, so he was okay....4:50 - Seth had another spell! The doctor was doing another surgery to put in another chest tube!!...5 minutes later - The doctor told us to go to the hospital NOW!!! It didn't look good!! Seth's heart rate was quickly dropping. They didn't think he was gonna make it!...Alex grabbed Lex and Spencer out of bed, put them in the car in their PJs and we were out the door in five minutes racing off to the hospital. (Poor Spencer didn't even have shoes!)

We called(/woke up!) my sister, and Karrie and Bishop Wood on our way there. My sister met us at the hospital and took the boys with her for the day. When we went in and I saw Seth's frail little body and the doctor and a BUNCH of nurses and three respiratory therapists working on him, I honestly didn't know what to think. It didn't look good. Seth didn't look good, his body was a blue/gray color. Tears came rolling down my cheeks as I watched in disbelief. The doctor asked me if Seth had been "baptized" (not a good indication of how things were going!). I told her that our bishop was on his way. Bishop Wood met us there and Alex was able to give Seth a name and a blessing when things were a bit "settled". Alex and I were told that we'll have to take things hour by hour.

That was my longest day at the hospital!...The social worker stopped in and asked if I wanted the hospital priest to come say a prayer. The nurses were somber. Alex and I had a care conference with the doctors and the team. That had to be the most sad meeting in my life! I was an emotional mess that day!!

That evening another doctor performed another surgery to work on the chest tubes again and she switched him back to the traditional ventilator because the oscillator that they put him on that morning wasn't working! I waited outside the NICU for over three hours for this to finish!!

This past week - Seth has still pretty much been sedated. One nurse commented that he is on so much pain and calm medication that he should be in a coma!...I've lost track of how many more chest tube surgeries he has had because his lung repeatedly collapsed!! (He had another (or more?) blood transfusions too.) They've done so much with regards to his chest tubes and his lungs that they've had to do so many x-rays. So many have been done that the radiology department called the doctor to advise her that Seth is having too many x-rays! (I've never looked at so many different chest x-rays in my life!)...One of the main goals for the week was to get Seth off of the ventilator to give his lungs a break. So they had been trying to wean him off that....Sadly, the doctor said that Seth has been through so much since he had been sick with lots and lots of poking with failed IV attempts and surgeries that we also have to work on helping him to trust touch again. Sad, huh?! It's true. When Alex or I would touch him through the incubator, he would squirm thinking that he was gonna get poked again! Oh man, he has been through lots and lots of pain!!

On Wednesday, Seth was taken off the ventilator and put on the vapotherm. This was great news! When I saw him, I cried tears of joy. (The nurse cried with me!) He looked more comfortable. His eyes were open. It was the best that I had seen him all month.

Last night, he wasn't doing so well. His sats were really dropping. So after another x-ray to check his lungs, they had to put a C-pap on him!...Today, he just looks uncomfortable and squirmy again. His body has gotten so used to the calm medication that it doesn't seem to help much anymore! His sats aren't great. =(

Thank you for your continued thoughts and prayers!!

janice

I have some pictures I'll post soon.

Four Good Days

So it's been four good days so far. I hate to get overwhelmingly positive though because as the doctor today told me, "The only thing that happens fast is getting worse."

I went in yesterday and last night. He seemed to be doing well. They are still keeping him very sedated, and the pneumo (air that causes his lung to collapse) tends to accumulate quickly if he moves around.

And so we continue to wait. I'll head in again tonight and will try to post an update a photo or two after that.

Save the Gonads

Today Seth was doing well. His blood gases are at good levels and they've been able to ween him down on his vent settings. They did have to put in a new chest tube yesterday morning. Again with the surgeries! But he hasn't had one today and his lungs aren't collapsed at the moment, so that's good.

He's still in pretty critical condition, in that, if he moves, his sats go down, his heart rate drops, etc. So they pretty much have to keep him sedated at all times.

Poor Seth has had so many x-rays in the past few days, the x-ray department called to warn the NICU. Ya think?!?! Idiots!! It's a good thing I wasn't the one answering the phone. It's because of their moron technicians that he had probably an extra 5 x-rays since they can't do a chest tube without a before and after. And this happened AFTER they took the x-ray that made the chest tube fall out the first time. I guess the one thing that I've thought was funny for the past four months is the shield protector they use...Save the gonads.

I don't know what else to say. We just keep visiting, praying and hoping.

Mad As Hell!!

Oh good grief, where to begin...

Today Seth has been doing better. I'm glad. But I am so sick of coming to terms with being told, and then accepting, "Your son isn't going to make it," and then 24 hours and gallons of tears later everything seems to be fine. Or at least getting better than they were expecting. Sheesh.

However, in spite of him looking better, the lead doctor did walk into our little area, looked at the monitors and said, "Mmph...tough times," and walked out. And that was the only thing he said to us all day. That's not a good sign.

Tonight was interesting. Janice and I went in together and Seth looked so much better. He still had the two chest tubes in, but his coloring is better and his sats and blood gas are all at pretty good levels. The x-ray technician came in tonight to take an x-ray to see how the pneumo is doing. Well, he told the nurses to take out the sheepskin bedding because it shows up on the x-ray. This didn't make sense to me--moving him in a major way to get that out. And they hadn't really ever done that before. And especially because there's a tray in the bed that they can just pull out, put the plate in and take the x-ray without the baby even ever knowing.

So I asked the nurses and said that may not be a good idea and maybe we should ask the doctor. They said, no, it'll be fine. So like an idiot I trusted what they said. Well, after the x-ray was done I went back to his bedside and noticed that one of the chest tubes had just popped out from them moving him.

I've NEVER felt like physically attacking anyone before in my life. Today, I SERIOUSLY considered punching the x-ray guy. Really. I actually thought it was a good idea. In fact, I was trying to find his last name so I could find some way to exact revenge on that idiot, Thomas C. What ever his last name is, he'd better hope I never see him again!!!!!!!!!!!!

So I JUST called back--they had to order 2 extra rounds of x-rays to make sure the lack of that second chest tube didn't make his lung collapse. It did!! I am mad as hell right now!! It took the doctor more than THREE FREAKING HOURS to put that tube in last night. And now they are having to put it back in again. Uugh!! I just want to cuss someone out!!!! And then hit them. With my fist. And then maybe a car. Or a hammer. Or at least a stuffed animal--with plastic eyes. Suck!!

The only saving grace out of that was to see the doctor reprimand the x-ray technician in front of us and tell him to NEVER move a baby with chest tubes. What a freakin' moron!! But the nurses should've known that too.

Poor baby. I can't even count the number of surgeries he's had in the past two weeks. This is getting ridiculous. And now to have to go through another one because of stupid decisions made by those on staff tonight! Oh, good grief...

Wrong Freakin' Theme Park

Yesterday afternoon / evening Janice visited Seth and he was having some desats, but was able to pull out of it. Then I went in last night and he was doing great. He was satting in the low 90s. I came home, worked on some Watch Me Draw! stuff and finally went to bed around 3:15am.

Today I had my day clear of Watch Me Draw! stuff and video stuff. Spencer and I were going to go play and head to Universal
Studios for the day, since it was supposed to be a nice hot day in the valley.

This morning around 4am, Janice got a call from the hospital that he was having some spells and they may have to insert a chest tube. I'm not sure exactly what order things happened in, but the end result was at 4:50 am or so we got another call that said, get to the hospital it's not good. I jumped out of bed, grabbed the boys and put them in the car in their PJs and raced off to the hospital. Poor Spencer didn't even have shoes!!

We called the Bishop on our way there as well as Jackie. Jackie met us at the hospital and took the boys with her for the day. We went in and honestly, I'm so freakin' drained right now, I don't even recall what happened. I know there's a new chest tube in now (the photo), and one that's come out and gone back in and been readjusted "six ways from Sunday"...almost literally.

The Bishop met us there and we were able to give Seth a name and a blessing around 6:30 this morning.

We spoke with the doctors, and they essentially said we're back where we were when he first got really sick. Except in a way worse because this is round two. Also, his Ph Levels were really low--toxicly low--like 6.4 or something like that (for all you nurses). They're afraid this has caused some brain damage, but there's no way to tell for sure. They said they've done everything they can and there isn't anything else that can be done. They said we have three choices:
1. Continue to have them do everything possible regardless of the quality of life outcome--meaning if he has massive brain damage from his gas levels being so off--they'll still do everything to keep him alive anyway.
2. Do not resuscitate. Should his heart give out, that's his body saying that it's time to go.
3. Pull the life support.

I feel like all three of these choices have positives and negatives that are all ethically and psychologically charged with extremely emotional consequences.

But Janice and I talked about it, prayed about it, discussed what the entire medical team felt was best at this point for Seth. He's in good hands. He's still alive and fighting and so now we wait to see what Seth decides to do. Literally it's a take it hour by hour right now.

So we came back to shower, Janice is heading back to the hospital in a bit and I'm going to try and give the boys a little normalcy for the evening, do homework and get them to bed.

And thus we hop back on that stupid, freakin' rollercoaster...just at the wrong freakin' theme park.

Continuing To Improve

We visited Seth last night, and he continues to improve! His saturations are still in the mid eighties, so there are still some things that will need to be resolved, but at least it's in a good range--one they don't feel is damaging.

Yesterday he had an eye exam. Those are so brutal for the poor babies. Think Clockwork Orange. It's like that. Results weren't stellar, but they weren't calling for laser eye surgery yet either. So that's good. He'll have another exam in a week.

They weened down the vent settings yesterday a bit and today they are going to start feeding him again. Cautiously, to make sure it doesn't make everything go haywire.

Not too much else to add. He's doing well for now. So we just keep praying.

Better, But Still Relative

Some days these posts are therapeutic, some days they are burdensome. Today it's burdensome. But the upside is that he's doing better.

I guess I'll kind of give the nutshell version, sicne it's all kind of becoming a blur anyway. I think since I last posted, he's had four more surgeries all related to the chest tube. They've put in new ones, bigger ones, adjusted old ones and taken out ineffective ones. Something like that. He had a couple of them in at one point, but now there's just one. He was still satting in the 60s and 70s for most of the week. He did reach the 80s off and on.

I know today the church fasted for him, as did we. Tonight he was satting in the 90s, so it's truly been a miracle. I still know it can go either way, but at least for now he's not suffering, and that to me is the most important.

He looks better and today he was opening his eyes and looking at us. I'll try to post a video if it'll let me.

He's still intubated. I'm not sure what the settings are right now, but I think they're still pretty high. Tonight was the best he's done since he got sick. So I can't imagine they've weened him down yet. They reopened the third floor NICU and he got moved down and into the private patio. That's good and bad--good that we have total privacy and essentially our own little room. Bad cause it means he's the most critical. But he's on the mend, so that's good.

We were told by the nurse that he's got some heart issues we'll have to work through, but we haven't talked to the doctor about it yet, so I don't have much info on that right now.

I don't know if there's really too much else to report. I guess that's a good thing.

Photos:
-One of the surgeries to insert the chest tube
-After the operation with one chest tube and line to insert meds/draw blood (or something like that)
-The last one is from today where he was finally put on his side. He was so happy--but also on drugs so that's why he's out and probably in happyland.

The Title Was Going To Be Rollercoaster Thrills...But Its Not.

Today started off pretty good. I called this morning when I woke up to see where is sats were and he was in the 80s. So we went in for our meeting at noon and instead of it being a meeting about pulling the plug, it turned into a feel good meeting about how he's on the road to recovery. Yea!!! What a turn around! So that was nice...to feel that stupid, freaking hope for the afternoon.

They did a surgery around 2pm today to put in some sort of line, I forget what's it's called, that is more stable than the ot

her IVs and PICC lines. It's in his chest and goes up through his neck. They brought the whole OR team into the NICU to do it, including the anesthesiologist. That went fine.

Tonight I went in, and his sats were back in the 60s. They did an X-ray while I was there and it turns out his left lung had collapsed. Uugh. So they did another surgery to insert yet another tube, deflate the cavity so that his lung would re-inflate. That worked and his sats went back up to the low 70s.

The first picture is before the second surgery, the second is with the new chest tube and then the x-ray shows the before and after. The left side is the collapsed lung. The right side is after the chest tube was inserted and his lung re-inflated.

Is it possible to be bored of the excitement? Seems like a contradiction.

And now I'm editing a fashion show that's due in a few hours. And I've got a long way to go. It's gonna be a long night!

Rollercoaster Torture

I went to visit Seth both today and tonight. I went during the day primarily to talk to the doctor with the least bedside manner but the most candor. It's kind of like talking to a book...that talks back. He finally gave us some concrete measures that I thought were interesting.
• It's not time to pull the plug until the following criteria are met--from a medically ethical standpoint:
- There is multiple organ failure
- There is brain damage that will lead to a vegetative state

To get to the brain damage level, saturation in the 60s won't necessarily do it. Maybe. But a fetus that is growing has oxygen levels in the 60s. So there's nothing proven that says that's not enough to cause permanent, irreparable damage. If it drops to the 40s, then that's a problem and that will cause that sort of brain damage.

When I went in today he was in the 60s. He'd dropped from our last visit. Also, they've got him on every med possible, and tried everything as far as the oxygen support goes. And now they are merely experimenting. Trying things they wouldn't normally do, because there's nothing else proven left to try. But even those things haven't resulted in increased levels. He still continues to decline.

Tonight his levels were up! In the low eighties and high seventies. And he looked better. So if nothing else, it made us feel better. But it was actually a good sign too, at least for now. He's off the oscillator which just felt so traumatic. So who knows, he may turn around.

I can't tell you how much I hate this up and down when it's this extreme. Its tortuous.

(insert sigh here)

Last night Janice and I were both able to go and visit Seth together, so that was nice. But sadly, his saturations had dropped back into the low to mid 70s. So we are kind of back to where we hopelessly were Monday night. The PIC line failed. They weren't able to get it in. His IVs are failing faster because his veins are just too weak. He's still pretty bloated and quite sedated.

We are having a "conference" setup with the various disciplines to get their opinions and find out our options. Not sure when that will happen--maybe tomorrow or Friday.

A Glimmer of Stupid Hope

I debated for a while on the title of this post and never settled on one, but this is what I feel right now. Stupid, freaking hope. I guess because it feels so deceptive, so temporary, like an outfit from Forever 21 or Vicodin. But for now, I'm feeling less pain.

I paid our poor, drug-induced, medicinally-paralyzed baby a visit today and to my surprise, his saturation had gone up. Giving me that stupid glimmer of hope. As much as I tried to not get my hopes up, it's to no avail. My hopes are up. Slightly anyway. He's at about 80%. Still not great, but better than yesterday. And his vitals-like kidneys haven't shut down yet. So that means the lack of oxygen isn't completely shutting him down yet. So it buys us time to hope that he'll continue to improve and maybe even pull out of it.

On a technical note, his dopamine dosages came down as well as a few other meds, they've weened him down a bit. His lungs have been hyper-inflated because of the oscillator and they've been able to bring that down just a bit too. Which is good, because being that inflated essentially squeezes his heart.

They did shave his head a bit and put an IV in his head. Looks kind of like something out of one of the Saw movies. Creepy, but I guess there are good veins there. They also tried to pit in a PIC line today, but we don't know if it was successful or not. We're heading over there tonight.

So for now, he's doing better than yesterday, which makes today less depressing than 24 hours ago. I guess it's all in perspective.

Maxed Out

I went to visit Seth today a little earlier than normal because I happened to be in the area. I wish I had a more positive post, but there wasn't really anything positive about the visit. Seth looks terrible. He's bloated, looks like a pin cushion and is still completely sedated. His life support systems are maxed out and his oxygen saturations are still low--hovering in the 70s.

I spoke with the doctor and she said let's give it a few days, but his oxygenation can't stay that low, and every day is damaging his future quality of life moving forward because ALL his organs need oxygen and they will slowly die without good oxygenation levels. So if it doesn't come up in the next 48 hours, we may be faced with taking him off life support and letting him go.

And that's where it's at.

On a positive note, I shot a fashion show this morning. It was boring.

The Sand Dollar

I'd been meaning to email this a while ago, but just never did. So I'll post it here...

I got back from Grama's funeral late Friday night. On Saturday, we went to the beach as part of our day of just running errands. We were getting some cupcakes at a place in Manhattan Beach, and it was just a couple of blocks from the sand. So we decided to walk down to the beach, toss off our kicks, roll up pants and try and stay as dry as a 2 and a six year old can playing in the water.

Now, I've always equated sand dollars with Florida--Grama, Aunt Kathy, Dylan and Scotty in particular. I guess because of the wall decorations, and all those sand dollars that Dylan, Scotty and I found all those years ago.

On our last trip to Florida (ironically), one of the hotel activities was to paint a sand dollar, which Lex and I did. Ever since then, Lex has been fascinated with sand dollars. He kept asking where we could find them and I kept telling him, I don't think we have them in California. I think they're primarily in Florida.

So as we're playing in the ocean, Janice looked down, and lo and behold, there was a sand dollar in the sand. In the California sand that never has sand dollars. To me, it was Grama's version of Noah's rainbow. A wink that she's alright. I don't think that a cold, dead sand dollar has ever made a little boy more elated and warmed and lightened the heart of a grieving grandson.

Spent

I'm almost too emotionally spent to even post anything tonight. I went to the hospital for a couple of hours and it was non-stop drama from start to finish. They've been trying to put in an arterial line for the past three or four days and to no avail. Tonight, they FINALLY got it in and so far so good. That means they don't have to stick him as much. They can pull blood from that spot to test all the various things.

He's still on the oscillator. It's does all the breathing for him at such an intense rate, it actually shakes him so he looks like he's on one of those vibrating beds--except that it takes way more than quarters to pay for each minute.

I'm not sure why it's so hard to see him so sedated, so hooked up to machines and just tubes wires and poke holes everywhere. But it just makes the visits that much more taxing. That, and being told to hope for the best but prepare for the worst.

That's all I've got for tonight. I think these signs, kind of sum it all up...

Seth's Gadget Addiction

Seth Update 10.2.10

So although this is my first entry, much has happened since the birth of Seth. I'll give the back story later.

Tonight I went in and in the past 36 hours he's gone from being in pretty good shape to being pretty sick. He was on nasal canula. Then he started desatting and so they switched him back to the vapotherm. That wasn't effective enough. So they put him on the c-pap. That lasted for a few hours, but then that wasn't strong enough so yesterday they intubated him. Then that wasn't enough so they put him on the oscilator. Even that is still not getting his oxygen saturation levels high enough. They've added a NO2 gas, put him on dopamine, and the funniest thing of all, he's on Viagra.

He had a bunch of tests run and he's got an infection of some sort in his lungs. Along with the fact that they're never really fully developed anyway.

He's not doing well. It could come cut either way--he could rebound and be just fine, or continue to digress. So it's a wait and see how effective the treatments are.