From Sonya

On Celebrations of Life
So this week while I've been recovering from my surgery (and feeling very connected to Simon-sharing his spitting up and puking noises and proclivity for food up the nose, as well as the more serious feeling of time being marked by the flow of meds) I've been thinking a lot about your Celebration of Life tradition. In the past 12 years I have mostly thought of it as celebrating the fact that you are still alive. Celebrating the fact of life-your life-and your narrow miss with losing that life. Somehow this year's journey with Simon, and my own journey of recovery have made me think about it as a celebration of more than just the fact of life, but also as a celebration of the nature of life, and the nature of life including this crazy journey of life and death and uncertainty and unknown. It has made me think about the nature of life being like the ocean you swim in every year on your anniversary-so much bigger and wider and more powerful than we are. You can kick and scream in the ocean and she doesn't care. She'll bring you the waves she chooses, not the ones we may want. She'll dunk you under and bring you up again and it'll be both freezing cold and exhilarating all at the same time. And it will be so unknown and so unknowable-the true nature of the ocean. And our relationship to it has to be one of surrender and acceptance. Otherwise you will never catch a wave, never feel the pull of the tide on your body. You can't fight her-the peace comes from the surrender. Well what if the nature of life is also like that? Life brings us the full package, the happiness, the grief, the life and death, and it's all part of Life with a capital L. And we have to have the same relationship of surrender to it-we don't get to just pick the happy and alive-Life comes with all of it. And it is that acceptance that leads us to faith and faith to peace. I've often heard Christians describe difficulties in life as God challenging their faith, a test of faith. Even not in religious terms I think I've come to the same conclusions- that Life (with the capital L) includes it all and takes us down a path, a journey, of surrender and acceptance that leads us to faith in some way. Faith in Life. So this year when I Celebrate your Life with you I'm not just celebrating the fact that you are alive and the fact of your life, but I'll be celebrating the nature of Life and the whole package of what Life has brought this year and where that Life is taking us--into peace and faith. I love you. I'm glad that you are alive. And I'm glad for Life. Love-Sonya

Life truly does give back--many times over--what you put into it. Never forget how amazing you are and have faith that the power within you can create the life you want.-----Maya Angelou

Bed 22, I Love You

Wow, last night was intense in the ICU but not for us. They got at least 8 admissions before 7 pm and it turns out someone passed away at about 6:30 pm. We got moved back to bed 22, out of the regular ICU, at about 9 pm and are THRILLED!

I was over on the other side to check on one of our friends, Mikey, and was chatting with one of the nurses who sometimes has him. She was asking about Simon because she heard he got pretty ill again. His day nurse who had him Mon, Tues and Wed was there and describing how serious it was. It's always eye opening to hear an ICU nurse talk about how sick he is when he really tanks. Thea, the some time nurse, was saying, "really he was that sick"? And Sarah, the one who had him this week said, "uh, yeah. He was grey. Like really grey. I kept saying they needed to move him over to the other side and told his next nurse that they had to watch him and really keep the doctors on this because he was looking terrible".

Megan, our regular night nurse, said yesterday that she wasn't sure when she went off shift on Monday night/Tuesday morning if he'd still be here for her next shift. Also, turns out that about 6 nurses have a Simon phone tree and call the ones who are off if he gets worse just because they all love him. Some of them have only been his nurse one or two times.

It's all so sweet and so terrible.

Our resident, Brian pointed out that Sunday is our *100th* day. Seriously. Yesterday it was 14 weeks and tomorrow it will be 100 days of this. I asked if we get a gold pin with a diamond or something. Unfortunately, I think we just get a really big bill :-) Oh yeah, and an even bigger community and new friends.

Nippling With the Best of 'em

Simon is seriously the scrappiest person I know. Kid is now drinking out of a bottle like a champ (mostly), sleeping really well and awake for about an hour at a time (he was sleeping 24-7 pretty much the last 3 days). While he's sleeping a lot it's a sweet deep sleep, different from the fitful almost catatonic sleep from before. His heart rate is better than it's ever been- maybe it's the Milrinone but he's hardly on any (down to 0.3 from 0.5) . They said if his IV conks out, they'll just leave him alone and not put in a new one. They decided they don't need a central line, so no more procedures on the little man, assuming all stays as it has been!

Looks like the GI bleed is resolving and he's barely lost weight according to the weight we took this morning. They're trying to get us back in the Annex tonight- they have to shuffle people around and get some kids, including Jasmine (!) upstairs and out of the ICU. Jasmine *walked* over to see Simon twice today. She looks great. we'll be really sad to not be neighbors with her anymore. We really bonded with her and her family- It's been sweet to bring each other food and little presents in the mornings and such.

It's amazing to me how quickly kids can get sick and how quickly they can start to bounce back. Laura has the word resilience tattooed on her back to remind her of how resilient she is after her motorcycle accident. I think the little man got some of that from her. They just want to live. All I can say is how grateful I am that they are both alive...

I was thinking today about how every year Laura gathers the group of friends that kept her going right after her accident and they relieve those first moments/days. I wonder how we will integrate all of this with Simon. I wonder what he will remember. Hopefully all the love and fun and sweetness and support. I think that's what I will remember, more than the scary moments. The joy amidst the fear.

Silver Linings

I honestly think optimism and pessimism are hardwired. I feel very lucky to, for whatever reason, almost always have a filter of seeing what is good in any situation. I am so grateful for that ability, especially now. I also think part of why my marriage to Laura works so well is that she has the same philosophy.

We realized that there are 2 silver linings to this most recent development. First, we are SO lucky that this infection presented before we went home. Everyone here has said that it's inevitable for a Broviac to get infected at some point, and that usually kids that go home with one end up presenting in the ER with a raging infection because it takes a few days for parents to notice something is wrong. So we caught this early. Also, even though it will be sort of crappy for Shimmy to have regular blood draws the old fashioned way, it's way better for us to have the Broviac removed than risking it getting infected again. So, Shimmy will go home with no IVs!

The second silver lining is so great. They have been holding Simon's feeds since last night because they want his gut to have a chance to chill out. Today he started getting really fussy and Laura stuck her finger in his mouth. He immediately chomped on it and started sucking. Laura asked for some Sweeties (sugar water) and he went crazy for it. One of the cardiologists was nearby and Laura's sister, Jen, asked her if we could try a bottle. They normally would have wanted to hold all his feeds because he's going to have his Broviac removed soon but she said we could try Pedialite. The kid sucked down 40 mLs! He has had a really major oral aversion for the last 8-9 weeks and the one thing we were pretty worried about in terms of going home was his lack of interest in eating orally (he has a tube that feeds him right now). He's been sucking on a pacifier all afternoon which is so crazy because he abruptly weaned himself a long time ago.

So, when we go home, we'll have an almost totally wireless kid and an eater!

They will put in a Subclavian central IV line tomorrow but for right now he has a good IV in his arm that they can use for his meds. Infectious Disease docs want them to wait as long as possible to reduce the chance of the infection not being totally killed and recolonizing the new central line.
Update: just had a great Celebration of Life dinner celebrating Laura's 12th anniversary of her near fatal motorcycle accident. We had 2 of our hospital friends plus 10 of our "Framily" come which was very sweet.

Simon had his Broviac removed without incident.

Also, my Mom had an incredible conversation/session with her friend Louisa Teisch who is a priestess of Oshun in the Yoruba tradition. Teisch said a lot of incredible things and clearly was "talking" to Simon. She really thinks he's going to make it and she is a very powerful oracle, so I'm going to go with that. She also said we all need to tell him, in our own ways, "We want you to live, we want you to live, we want you be here with us, please decide to stay.” It looks like he has, but he keeps clearly having to decide so let him know we want him to stay.

Simon and the ocean evidently have a connection, so if you have a chance, go to the ocean and send your blessings and requests for him. She also said 7 dimes are something important for him, so if you come, feel free to bring 7 dimes. Really, we're not trying to get our medical bills paid! She also said he is Yemaya's child.

He's on his 3rd bottle of Pedialite right now. Each one is 40 mLs and Laura joked that he's drinking a "40". We're pretty much always able to have a laugh over here, which is quite a blessing.

All seems well in bed 7 and hopefully this setback is actually going to end up being a boost in some way.

Over and out.

Back on the Juice

So the drama continues over here at CHO. We are no longer in bed 22 and Shimmy is back on 0.5 of Milrinone. After he looked like a big ole pile of pale, blue lipped, dark stooled crapola and puking stuff that looked like chocolate pudding, they diagnosed him with bleeding in his gut. His INR which measures his ability to clot was WAY high- we think the infection messed with his ability to metabolize Cumidin, the blood thinner and one of the things that sometimes happens when the blood gets too thin is that you can get a GI bleed.

As of 1 am his Coags (measure of coagulation of the blood) look a lot better and he is getting a blood transfusion to help with the anemia (likely in part because of his bleed).

Lab tests were showing an increase in Creatinine, which indicates that kidney function is not good. They think his perfusion (blood moving to an area) to the kidneys is impaired b/c of the infection and extra stress on the heart, so they put him back on Milrinone.

I'm trying to look at this as a setback. The doctors have said this is very serious but not to the point that they think they're going to lose him. It's crazy to have a doctor say that to me and I don't start crying, I just nod my head and ask more questions. To have someone say, "It's not like I think we're going to lose him" and not lose my crap is bizarre.

Not sure what this all means in the big picture. Hopefully tomorrow they will ID the bug(s) that are making him sick and kick it with more specific antibiotics. They're also planning to pull the Broviac tomorrow and put in probably a femoral IV.

I guess the roller coaster just continues. It hasn't sunk in that we're back in the regular ICU and that he was looking so horrible today- really, just like the night he came in. Right now I'm a little in "busy" mode and should probably try to sleep.

This bites.

Ever Seen The Movie...

Spinal Tap? I haven't but we're down in the cafeteria while Simon is getting a spinal tap to make sure his infection hasn't spread to his brain. The Infectious Disease doctor was worried because he has been out cold for most of the day and extreme sleepiness is a symptom of meningitis, or an infection in the lining of the brain. So...yesterday we thought we were going to go home Thursday or Friday and today Simon is getting treated for a family of bacteria (gram negative) that by their design release toxins from their outer shell and tend to make people go into shock. The crazy part is that I'm barely phased by it.

I was having horrible flashbacks this morning when I had to hold him down while a nurse put a catheter in to get a urine sample (couldn't get one) and stuck another one up his nose to get a mucus sample. I felt those familiar cold fingers grip my gut while the Infectious Disease doctor was telling us that gram negative is really serious and that she wanted to rule out meningitis. It was sickening to walk in this morning to our baby with blue lips, looking pale and ghostly again. We both were having flashbacks to August 1st.

AND we know how this goes. Two steps forward, one step back and we just have to pace ourselves. Everyone here has said how fortunate it is that he got this infection while he was still in the hospital. It's pretty common to get an infection in a central line and kids often don't come back to the hospital until they're pretty sick with it.

I think in the big picture, I'm actually feeling like we'll all be fine and this is just a setback, but right now it sucks.

We're laughing right now, because they had warned us that it might take up to an hour to do the tap and we haven't been gone 5 minutes and they just called to say they're done. YEA!

Just came back up and he is *stoned* on Morphine. It's a little funny and a little disturbing. He's probably just going to sleep for the rest of the night...

Laura Writes:
It's been quite a day but once again I have had my "intuition" backed up after having been placated for most of yesterday that Simon was not really that fussy. I just want to scream "told you so" but I get it. There really wasn't anything to do until he presented with something. When he finally presents, he presents big. It seemed like when we were first told about the bacterial infection and that it was gram negative that it was actually a good thing. Not as serious as a staph infection like last time. It wasn't until the Infectious disease folk came up (and not even the first ID doctor but the 2nd) that meningitis was even mentioned. I felt like a huge bucket of ice water was dropped on me. Really?? Meningitis? Really?? We were just on the brink of getting home. Almost 8 weeks of steady uphill days. Test scores getting better, a successful wean from Milrinone, days/weeks gone by without a symptom....and then this.
I'm crushed. I feel almost, not quite, but almost defeated. I know I'm not and it's just the end of a really rough day but frikkin' A.
Obama better win. Prop 8 needs to be defeated, and Shimmy needs to not have Meningitis. Please.

7:55 pm Test results back- NO MENINGITIS!!!

Update

So we're not going home for at least another week. Simon has a bacterial infection and has to go through a full course of anti-biotics for at least 7 days. It's not a staph infection though so we're still waiting to hear exactly what the bug is. The good news is that right now it doesn't look like we have to go back on Milrinone and we seem to have caught it early so that the bacteria might not be too widespread. We're waiting to hear if it's from his Broviack line (which would then need to come out) or if it's from somewhere else. They key thing we're waiting for is to find out if he'll respond to the anti-biotics if it is in the line (and it could stay in) or that it's not infected the line and is from another entry point.
His fever right now is down to normal and the color is coming back to his face. It was not a pretty picture this morning when we came in. Too similar to three months ago. We're watching his blood pressure and holding off on some of his meds until we see it come back to normal. He's been sleeping almost non-stop since we came in this morning around 7am (it's now almost 12). I'm fine with that. Rest up little man, rest up.
The cardiology team is still thinking positively right now and it's great that he's managing on his own reserves.
Jaime and I are sickly relieved not to be heading home in two days. A week will be just fine. How wrong is that? Not wrong I know. Just part of this whole insane process.
Blech.

Not Gonna Happen

Simon spiked a fever last night. Not sure what's causing it yet. Started him on anti-biotics early this morning.
F**K!
F**K!
F**K!
More news when we get it.
Roller Coaster rides suck.

The Countdown has begun

Jaime and I had our first discharge meeting this morning (Jaime via conference call) regarding our going home. We didn't necessarily hear anything new (broviack care, NG protocol, meds, etc) except for the exciting/terrifying news that we might be discharged on Thursday not Friday and that Susan, our cardiac nurse would actually like to have us ready to go home by Wednesday. I really think I crapped my pants a little after that meeting.

It was already a rough day with Simon being particularly fussy all morning and not napping well (curse the heart rate monitor telling me over and over that his heart rate was just a little higher than what's been typical). By tonight I had talked to enough people and tried enough things that I can feel comfortable chalking it up to teething, but damn if I wasn't a little out of my head with worry.

I know we're ready. I know that I'm more than knowledgeable about how to take care of him and what to watch for and notice. I also know that I am so very frightened of needing to come back here and Simon getting sicker again. It's all right there, I wouldn't even say "below" the surface. It is the surface.

I want him home so badly. I want to be able to control lights and sound. I want to walk him around the neighborhood again and have him see a variation on his world that we haven't had in months. I want him to watch Roxie with delight getting to know her as his dog.

And I am scared. Just scared. I have been doing his meds and keeping him on his feeding schedule for almost two months now. I know how to care for him. AND.... I've always had a second set of very well trained eyes to double check anything and everything with, not to mention the 5-10 folks that come around 2-3 times a day for Rounds, check-ins, and periodic checks or visits and the heart rate monitor, blood pressure checks and pulse oxygen check.

It's too much to think about all at once. At least I have a couple of days too integrate this information and then a couple of days with Jaime home for the weekend to get used to it. It's like right after he was born and Jaime went back to work all over again, but different.

Just working on breathing right now.

That and loving Simon's growing. Check out who knows his name know.

http://www.youtube.com/watch?v=kuW427cDTL0

And some pics

Here's Mr Shimmy enjoying his first Avocado

(either that or we've got the Incredible Hulk for a son.)

Here's Simon and Jasmine our neighbor enjoying one of their last nights together.

Weekend Update

Slightly challenging weekend, but not because of Shimmy. He's looking pretty good- only a little bit sweaty and a bit thrown off by the time change in terms of sleep.

The crappy thing is that Laura's Mom came on Friday and realized she hadn't really gotten over her cold and ended up going home today even though she was planning to stay until Friday. It's a big bummer but ultimately the best thing since we really can't chance it with Shimmy so close to going home. We're both super sad about it though :-(

We had a good weekend- today a bunch of friends came over and we moved every piece of furniture in our bedroom to make way for a crib (donated by a friend) and a few things in the living room. We're both tired and excited about Simon maybe coming home and also pretty stressed about it (esp. Laura). It's hard to have it be this close...

Had a wireless walk with Simon yesterday (look, no IV pole!) and Simon got to be in the rain for the first time.

This is what greeted us when we walked in this morning . Aaaargh. Halloween is never over.

Hello Chubby Cheeks! Who knew Simon would ever have a round face!?!