Saturday, August 23, 2008

Miracles Happen Every Day

The little girl in the bed across from us drowned in the family pool 3 days ago. Her father and a neighbor rescued her after she had been in the water for an unknown period of time (maybe 5 minutes or more). She was LifeFlighted here the night before last from Santa Rosa. Here's a link to the newspaper story about what happened to her:

Yesterday she was clearly out of it - very quiet, greyish, crying. Today she is a totally normal seeming 3 year old- chatty, singing, going on walks, telling her parents what to do.

It's unbelievable to see what can happen here. We have beds facing each other and have had a few conversations with the Mom to help her get through the first 36 hours after something horrible like this happens. Her parents are doing so much better and really wanted to take a picture of us since we have developed a little bond. We thought we should take one too!

Here is Haylee and her parents tonight, quite alive and happy and probably going home in a few days. Yea Haylee!!!

It's amazing what happens here at CHO- the most incredible stories and the hardest ones. These are the scrappiest kids I have ever seen. A lot of the children here are making it through the most horrible, impossible things and so are their parents. We are doing all we can to support the people that are suffering and borrow joy from those who are making progress. This is truly community in the making.

Pro Bro(viac)

The line is in. After a roller coaster of a day Simon's line is in and he will no longer have to get poked every day for labs and blood work. It's a little intense to see a line that's bigger than his NG tube coming out of his chest but there it is. Yay!! No more poking, no more looking for veins 3,4, 5 times and not getting one!!
It was a tough day indeed with Simon getting his last feeding at 6am, thinking that his surgery would be around 10am and then having it get pushed back to 12 and then pushed back again to 2. I was joking that he must be getting weak with hunger but with the fever that developed and his high level of irritability mixed with exhausted waking and sleeping that's exactly what he was. It seemed even harder given that I was right there with two days of fabulous nursing sessions just behind us. I remembered that Dr Casey (one of his ICU cardiologists) had mentioned that one of the benefits of the Broviac was that if they needed to, they could administer lipids (straight fat) right to his blood stream. Thinking that Simon went 8 hours without eating as well as having a fever and fussing for the entire time, this might be a good thing to get started with once the Broviac line was in. I mentioned it to Dr Hanson who agreed that it was a great way to catch him up on the calories that he'd missed (plus some). The tube of lipids just arrived and really, it looks just like Lard. I can't believe that they're going to pump that right into his blood. Jaime keeps saying that we could walk out of here with a chunky baby. I can't even imagine what that would look like.
Jaime's so tired right now she can't even dictate a blog entry to me.

Hey one more thing. To all you fabulous readers out there, when you're leaving comments on the blog, please let us know who you are. We've had some very sweet comments left by Anonymous and we're just wondering who you are.
So much gratitude.


And So We Wait

So, Simon was supposed to get his Broviak line at 10 this morning, then maybe noon, now maybe 2pm, but who really knows. They're trying to fit him in between surgeries. The hardest part is that he's HUNGRY! He last was fed at 6 am and they won't let him eat. He's supposed to be gaining weight so not feeding him is really frustrating. Argh.

The main possible complications of this procedure involves his blood pressure getting low, which they can deal with and his coming out of anesthesia (he'll be intubated). They have to extubate slowly and I'm hoping we aren't going to have an intubated baby for hours. They initially said the post-op process is about 30 minutes and I'm really hoping that they get the damn tube out as quickly as possible. It sounded like a pretty quick procedure but there's so much to get into and out of it that makes me a little nervous. The reality is that we don't really have a choice, so it's what we have to do.

That's kind of the name of this whole game, right?

Laura Says:
All of that is very real AND the hardest thing for me right now is being around my hungry baby and not being able to feed him. It's gets worse when I get closer to him since he can smell me and clearly associate comfort/relief from hunger with me. It was quite intense for a moment there when my head was telling me all the very real reasons that Simon shouldn't eat anything but my body was saying "fuck that, feed the baby".
I had to leave the room and that's stupid hard given the fact that Simon is about to have surgery.
Fuck this is hard.

Friday, August 22, 2008

Other Great Pics From The Last Few Days

Simon's Auntie Winter, scaring him for life
Mamaw, Mama, Shimmy and Mommy displaying their fabulous hairdo's, courtesy of Carol
(Simon's primary nurse). Note Simon's 2 little pigtails which started this whole thing.
Simon, touching a tree on his walk outside
Our kooky nurse, Carol
Mr. Diva, post spa treatment a few days ago

Great pictures from today

Simon with Mamaw
Dr. Reed (one of the ICU attendings)
Simon, trying to eat Mama's face
Mama, eating Simon's face

Irreconcilable Truths

Simon is still in heart failure.

Simon had a *great* day.

He laughed

He played.

He went for a walk outside.

He was as happy today while in the hospital as he's been out of the hospital.

He nursed like a champ.

Simon is a VERY loved baby. See exhibit A from his friend Theo

Simon is still in heart failure.

TGIF x 3

Wow, what a day. Very good and very hard. After a meeting with my boss, I've decided to start back to work full time starting Monday. I've still been responsible for all my regular work but trying to cram it into 5 hours a day and it just means no one is happy. I'm not quite sure how to not lose my mind, but the demands at work aren't flexible so it's better to just go back to work.

I had a very good cry in the car at the hospital and then, as I was walking down the hall to the ICU I had an experience that made me cry even harder. As I turned the corner from the stairwell, a woman was standing against the wall. I She saw my visitor badge that I put a picture of Simon on. After I had passed her and was about 20 steps away, she said, "Is that your baby?". When I said yes, she said "he's beautiful. What's wrong with him?". I said, "He's in heart failure." Then there was a pause, as it was obviously her turn to say why she was there and she said, "My baby passed. She passed the day before yesterday"

I dropped my bags on the floor and walked over to her and asked her if she wanted a hug. She nodded and we held each other and swayed and didn't cry and didn't talk for about 20 seconds. Then I asked "what was your baby's name?" She told me and we hugged some more. Then I stepped back and told her my name and she told me hers and we shook hands. She told me how hard it is to lose a child. She had to pull the plug and was holding her child when she died. She didn't cry or really even show any emotion the whole time. I gave her another long hug and then I walked down the hall to Simon.

I walked in and Simon was super chipper and cute, hanging with Laura and my Mom. He fed and then we went on a WALK! We were allowed to walk outside of the ICU for 10 minutes so we went to the courtyard and Simon was in heaven in the sun. We get to do that every day! We'll upload pics of the adventure when we get home.

The other news is that Simon is having surgery tomorrow to put in a more permanent IV. It's scary because of course there is some risk involved, but really we have no option and it will mean that they can draw blood and give him meds if they need to without having to stick him anymore. They tried to draw blood 2x today without success and haven't been able to get a PICC, so it's really time.

So so glad it's the weekend.

Thursday, August 21, 2008

Reality Check

Simon is really sick.

I keep wanting to not stay with that information, in general. That's made even easier by the fact that for all intents and purposes he looks and acts like a normal baby. We had a team meeting with our cardiologist, social worker, and the two clinical nurse specialists to discuss his weight gain or lack thereof and to touch base about short term and long term goals.

The short term goal is that he needs to gain at least 15-30 grams a day and this week we've averaged 10. So to accomplish more weight gain, we need to seriously bump up his calories and the only way to do that without stressing him too much is formula fortifier. Laura's really concerned that this will mean the end of breast feeding because the fortifier keeps him feeling really full but they're keeping him on the every three hour schedule so he might not ever really get hungry. We're having to let go of what we want ideally in favor of what's medically necessary for him to have a better chance to heal.

We're definitely not going home next week. Dr Rosenfeld explained whywe might have gotten that message from other doctors. For other cardiac patients the criteria for going home is usually are they gaining weight and not much else. Simon's not dealing with a structural defect or post op recovery, he's dealing with weak, sick muscle and that's different and more complicated than a surgical recovery where the muscle is basically healthy but injured in some way. Ultimately Dr. Rosenfeld is the final say in whether Simon stays or goes, which is good to know, b/c there are so many people in the mix right now. It was a good meeting with a lot of information, some pieces harder to hear than others.

It was really challenging to go immediately from this team meeting about Simon not really being much better, directly into a work conference call that I was already late to. I feel like I should almost just go back to work full time because who knows how long this will go on and at the same time how can I possibly leave Laura and Simon in the hospital for that many hours and not be with them. This whole thing just feels insane. Methinks I should play the lottery.

There's been discussion about Simon getting a more permanent IV line which would involve a surgical procedure (since they can't seem to get a PICC line in despite at least four attempts). It's both terrifying and a little bit of a relief to think of that type of IV. He'd have it for up to 6 months and they'd be able to draw labs and give him medication should he need it. We'll find out in the next day or two. Kind of a rough day.

A sweet note today- Our friends Angie and Elizabeth who have two small boys (four months apart!) brought us homemade food. (You can read their article in the latest Curve magazine as to why it's such a big deal that they made us homemade lasagna complete with noodles that they made themselves).

Laura says: I don't really know what to write. I'm a little tapped out right now. The visits and gifts are amazing.
My heart doesn't know what to do with the sweetness of time with Simon where he presents somewhat normally, nuzzles into my neck, takes better and better to nursing, AND still is a very sick boy on the inside who's heart is not working any where near well enough.
That's all I got right now.

p.s. just had an experience that made me laugh so hard I cried. I was dictating this blog post to Laura while I held Simon and when I went to re-read it, I realized she had types "all intents and purposes" as "all intensive purposes". We had a back and forth for a few minutes before she conceeded that, in fact, the phrase might really be "all intents and purposes". It was one of those classic things like learning as an adult that unicorns, in fact, do not exist (there is a great "This American Life" on NPR about this type of thing that is hi-larious).

Wednesday, August 20, 2008

Two Steps Forward, One Step Back

Another big day in the ICU. We're back in the Annex in our luxurious bay #22 complete with picture window and while it was so exciting to be "wireless" for a while, it was not to last. I came in this morning and had a delightful two hours with Shimmy walking around his bed, dancing, looking out the window, rubbing heads, and just loving not being concerned with tubes. During rounds though a couple of things came up and Simon needs to have his PICC line reinstated and go back on Heparin. His Cumiden levels were not quite up to snuff (that's the oral substitute for Heparin that thins the blood so it can be pumped easier) and the PICC is also an essential piece of equipment on the off chance that Simon's heart gets tired again.
So Toshi was called and I started to feel nauseous just thinking about the 4 hours it took last time to get the fucking line in. It didn't help that at just about the same time all this was decided it was spoken out loud that Simon is in fact still a "very sick baby."
Right. He is.
He's presenting so normal, even better than normal with the turning pages in a book (see video), the more smiles that he's giving, and the new chunkiness he's sporting in his midsection and thighs.
And...he's still weak of heart and not able to sustain his high spirited self without major intervention.
When Toshi came by to do the PICC Simon was fast asleep and that was the condition that I got to hand him off in which was great.
I got a call less than 20 minutes later saying that the line was in and I could come back up and nurse him and gavage him. I was amazed that it took such a short time. When I got back upstairs I was surprised to see his head still free of a line. Meghan the nurse looked a little sad when she saw me and delivered the unfortunate news that Toshi couldn't get the line in but mercifully decided to stop after just two tries. They got a shallow line in to his arm which is a good thing but will be trying to get a PICC in asap which is a crappy thing. It's good that they got a line in because they can start him on the Heparin again which he needs AND when they try for the PICC again they can give him some sedation to make the process a little easier for him (although last time they did the PICC little SHimmy was way pissed and showed it even though he was on at least two doses of different sedatives). The bad news is that they're planning on trying first thing tomorrow and that means that the little man can't catch a break.
My plan is to advocate for them waiting at least a day so that we can space out his more traumatic moments. The nurses say that the shallow line will last at least a day or three and that if need be you can administer Milrinone through it as well a Heparin (the two drugs that he would need to be getting should his status deteriorate). If that's the case then why not wait a day or two before we need to put him through another session of being poked, bled, and crazy out of his mind for possibly hours at a time??
Really, why not?
In other news, we're up to 65 visitors and every body that works here comments on how loved this baby is. They say that they've never had a baby held so much and I can't tell if it's with admiration or some annoyance that they comment "that boy doesn't touch his bed from 7:30 in the morning until 10 at night."
Jaime would like to retract some of the flippant comments regarding the butt hole-less baby. It's quite a bit more serious that we (and the mom) thought and if folks reading could also send some love to baby Brandon and his mom Coco that would be great. He's got a rough road ahead.
My mom and dad are vermont bound and it's been so amazing to have their support through all this. Shimmy had some great moments today soaking up the Fernie and Feileen energy. We'll be conjuring up the Poppa and Mmmmm all the time.
Nursing news: Simon is still challenged and is now liking the pacifier more than the boob. I'm trying hard not to take it personally and not freak out that he's missing out on vital calories. We only get one or two sessions in a day but so far he's still gaining weight at a respectable rate. Amrit says that this is not uncommon and when we're home again we can quickly get right back to it. It will also bring back up the dwindling supply which I'm also trying not to dwell on. Simon is still getting gavaged no matter what every three hours so he's not quite hungry when he's put to breast. And apparently nursing is work.
I never thought so. I leave it at that.
Friends from far away are visiting and it's wonderful to see folk. Hard that it's not a simple catch-up kind of visit but none the less wonderful to see dear friends. (Winter, thank you so much for the Wonder Woman under-roo show. Simon is going to have some odd fetishes when he grows up)

Love to all


Tuesday, August 19, 2008

Progress! Milrinone today, no Heparin today, moved back into the Annex and no PICC LINE!!! It closed off and they decided to just take it out and see how he does (after a 5 hour power struggle with our nurse and the resident, not to mention Laura holding Simon through a partial removal that was aborted midway. Simon did not appreciate it).

If he does need another IV, not sure if it will be a PICC or a regular IV. We think PICC because Milrinone needs to be given into a central or close to central vein. Hopefully we won't have to worry about that.

Those of you have visited in the last few days will be very happy to know that Simon got his stinky, smells-like-frat-house head washed.

See exhibit A (favorite nurse Carol after she washed his little head and wrapped it like a diva).
Then we put him to sleep without having to swaddle him or tie his little hands down because the only bad thing he could grab is his NG tube and that's not a huge deal.

Before PICC removed- see crazy ports and smelly, smelly tape

After PICC- smelling good, silly bald spot, peaceful baby, happy Mommies
Our nurse gave me the ports (they separate) so I can make pasties out of them someday. I think I have a naughty nurse costume in the works. How wrong is that?
Laura's parents leave tomorrow which feels pretty crazy. They've been our right hands through this whole thing. Laura now will be at the hospital most mornings from 7:30 am to 1:30 pm by herself. That might be a good time for visitors if people have mornings free.
P.S. Simon learned how to turn pages while in the ICU. Seriously- look at the video.

Terror and Delight

It's been quite a day here. The biggest news is that this morning around 10am Simon was taken off his Milrinone. He will be closely observed for about 48 hours but if his numbers stay stable and we don't really see a change in his fussiness, sleep, or regular personality, we are that much closer to going home. I have to say that when I heard that a part of me wanted to jump for absolute joy and another part of me wanted to yell at the doctors that they must be crazy and have their heads up their asses.

We're learning how to administer his oral medications (he'll have 4-5) and he may be sent home with an NG tube (feeding tube through his nose). I can't believe that they may discharge him at some point next week. It feels sort of surreal. We still don't really know what the limitations will be in terms of if/where we can take him outside of the house but it's incredible to think that we could have a little bit more normal.

He totally smells like a frat boy right now b/c they don't want to change the dressing on his PICC line because it makes it move and he's a sweaty cardiac baby so he's a little funky. Guess it's just a warm up for Junior High. I can't wait to take a shower with him again and wash all this hospital off...

Another funny note-
Last week Laura called Verizon to see what we could set up for the next month because we were over on our minutes with all this happening. She ended up talking to the rep for like 20 minutes and the woman wanted to know all about Simon and what was happening. We gave her the blog address and yesterday she left a comment. Even the Verizon lady is thinking about him!

Monday, August 18, 2008

Shuffle, Shuffle

So...just as we were getting cozy, they decided the census in the Annex was so low that they needed to move the 2 of us left (out of 6 beds) back into the main ICU where they had empty spots. ARGH!

Simon seems fine over there but it bites for the adults who have to cram and move all the crap we brought to the hospital (taking 1/2 of it home tonight) and deal with the noise and crazy energy. Hopefully it will only be for a day or 2.

Had a bit of drama today, mostly caused by me (Jaime). Laura has had pain in her calf on and off since her pregnancy and it' s back. It was a bit swollen behind her knee and hurt so badly she was limping so I forced her to go to the doctor to rule out a blood clot (my boss had one that caused a pulmonary embolism and put her in the hospital). She's fine and it's probably just a pulled muscle but I was not about to have her drop from an embolism in the middle of all this. I told her it's the price she pays for being married to a slight hypochondriac. It spills over sometimes.

Also, unfortunately, between when she called the doctor and we got to the doctors office, Laura lost her wallet. We're in the cafeteria calling all our dang credit card companies and bank.

Today's theme has been chaos.

Sunday, August 17, 2008

Settling in

Sunday Night:
So here we are at the beginning of week three and Simon, Jaime, and I seem to be settling in here in bay 22 in the ICU Annex. Simon will have another echo tomorrow but we're not expecting to see anything different which is actually a good thing given that they're slowly weaning him from the Milrinone. The wean has also begun on the Heparin (blood thinner) with a subsequent substitution to the oral medication that we can take him home on. It's all good. It's not great but we're hanging on to the theory that every day that he's stable he's actually another day into his recovery.
Monday Morning:
So his echo cardiogram doesn't look any different but they weren't expecting it too (slow and steady, slow and steady). The big news though is that they're starting a more aggressive weaning of his two heart medications. The hope is that if he tolerates that, we can get rid of his PICC line by the end of the week!!! No more needles in his head!! They'll need to give him his Heparin via a subcutaneous line but that's tiny compared to the cyborg like set up he has right now.
The other crazy thing is that they're starting to let Jaime and I take over a lot of care so right now I have three syringes waiting beside me for when he wakes up that I will personally administer to him. Simon will be getting most of his meds orally right now and those are things that they encourage parents to be doing even before he leaves the hospital. It's funny to think that all of a sudden Shimmy's flavor experience is about to triple. He's going from knowing just what breastmilk tastes like to experiencing a minty flavor and couple of different fruity flavors. That's crazy. I guess he also knew what Symethicone tasted like but that was mostly just a sweet tasting gas-be-gone thing that we used to treat him with when he was super farty.
He's still nursing somewhat inconsistently throughout the day but better when he does in fact latch on. The little sucker nearly emptied my boob this morning and took his 75 ML's via his NG tube too. He's gaining weight a little slower than when he was on fortified breastmilk but still at a more than respectable rate. Yay for no bovine powder (for the time being at least- I can be happy with that and just fine if he needs it again).
Still no answer as to how this all started. They're closer to ruling out metabolic with just a test or two due to come back this week and the viral test results should also be back sometime in the next week or two. Dr Kate, when asked by my mom to say the most positive thing she could, said "I think we can be cautiously optimistic." Cautious feels right. I love thinking about Shimmy's first birthday party and his first steps and what type of pork product he'll enjoy the most (remember he doesn't need to be worried about a low fat diet :-) but I am also feeling very tender and raw about what we've been through and don't want to get blindsided by bad news. I want to be somewhat prepared. It's a delicate balancing act and while I'd much rather live in the place of birthday parties and first steps I feel a little need for the protective armor of the other side.
So, I think we're still here for a couple of weeks or more but the sun is breaking through the clouds.

Love to all