It's been a while

Thanks for all the gifts and cards - it seems that Briggs loves the packaging the most!

It's been a while since we posted an update, but for good reason - Briggs is totally mobile and fast and it takes quite an effort to protect him from falls where he might land on his chest or run into the corner of a table, etc. So, it takes a bit of concentration that keeps me away from the computer! But, he is doing SO well. We had his Cardiology appointment this week and we don't have to go back for SIX MONTHS!! What a feeling. Now if we could just have a surgery to take away his allergies to milk, soy, wheat and nuts I would sign up! For now I will gladly appreciate the new heart and the fact that his smiling face is still with us :)

Here are few of the latest pictures. I will try to put one up of his incision soon - it's looking great!

Miller caring for Briggs , Briggs with Dr. Chin at Check-Up, Celebrating Merritt's 4th Birthday

Doing well, and a video

Briggs is having a nice weekend and still glad to be out of the hospital. His ear infection seems to be getting better on antibiotics although today (saturday) he was pretty cranky so the pediatrician is going to look in his ear tomorrow to see if it is getting better.

He still has the stitch in his side from the chest tube, but gets it out next Tuesday. Also, his steri-strips are starting to fall off and his incision looks pretty good for just two weeks out. He is finally sleeping pretty well (as you can see), and occasionally will eat some food.

It's almost 100 degrees here right now so we are spending a lot of time in the one room with AC. Miller and Merritt spent the afternoon on the slip and slide yesterday.



Tonight before bedtime he was dancing a bit and I caught it on tape. Check it out...

At least an answer!

We have been really concerned these past few days because Briggs keeps getting grumpier and apparently in more pain. To be sure, we went back to the hospital yesterday for more x-rays and and an echo (which used to be a non-event to Briggs and now he's TOTALLY upset during the procedure, who can blame him?). The tests looked good and they thought one of his chest wounds looked like it might be getting infected, but we left being told to watch for fever. SO, he got a slight fever last night and was VERY cranky and crying all day today so I took him back to the doctor today and he has an ear infection! I was actually very relieved - we have an answer as to why he's so uncomfortable and it's not related to his heart! Also, I am leaving for the weekend and I was afraid to take off without having any answers. Now maybe I can get a bit of rest :)
Pictures tomorrow perhaps...
Goodnight!

Anyone Still Out There?

Well, we're not out of the woods yet. Briggs has been very uncomfortable and waking up every 30 minutes or so at night. I'm at the point where I think this is more than pyschological. We took him in today for another x-ray and echo and it all looks okay. But, they want us to watch him closely for a fever and tonight he seems be getting one. So far just 100.4, but we hope it goes down and not up. I just don't want to readmit him for another terrifying week of IVs and such. If there is an infection, let's pray it can be controlled via oral antibiotics at home. I'm also scheduled to leave on Thursday for a long ago planned girls spa vacation and it's very hard to leave. I really feel like I need it and Daddy is here and totally capable, but I would not want him to leave me wth this. SOOOOO, we'll see what happens tomorrow. In the meantime, here are a few cute pictures!

Miller taking care of Briggs; Briggs likes sealed air more than gifts! ; I hope Miller's not on call tonight :)

Happy Skinny Guy

Briggs is SOOOO happy at home, I swear I have never seen him smile this much. Except for two occasions - when you try to feed him or put him anywhere near his crib. I'm posting a picture of his scar and pretty beat up chest from all the tubes, but it also shows how skinny he is. I think it actually looks pretty good! We have no idea why he is refusing to eat. He's eating a decent amount of baby food (maybe three jars a day, hardly enough), but we are having to syringe liquid into him because he will take nothing in a bottle or sippy cup. Not even straight up juice!! I'm worried he will become dehydrated soon, especially since he has to be on a diruetic for a month or so after surgery. We think this is just stress related and that he refuses to eat because he associates drinking and sleeping too much with bad things at the hospital. I still thing maybe his throat really hurts from two extubations. He also might have thrush...still a few unanswered questions, but he is HAPPY and it's beyond wonderful to see him this way. Tomorrow is Merritt's 4th birthday and I was hoping at this point we could focus on her for a change, and I think we'll meet that goal :) Thank you ALL for so much love and support.

SUPRISE!!

These are the kinds of surprises we like - we're home!!! All the tests came back clear and we were released. I'm still a bit worried that he's not eating at all, but his throat probably hurts from being intubated twice and hopefully his appetite will pick up soon being back home in his own environment (not that it's less stressful here by any means!!)

THANK YOU ALL FOR EVERYTHING. To go from almost losing him to having him home with a new heart is overwhelming. We could not have endured this week without your prayers adn support. Please continue to pray for my friend Andrea and her son Drew - they have been there 3 weeks now and no clue when they will be discharged.

Some coming home pictures and one of Briggs standing by himself in his hospital crib.

Great Day, Lots of Pictures

Today was a great day!! Briggs' blood work is still in progress, but his fever is gone and mood has really changed. This is such a huge deal, going through two surgeries and multiples blood draws, etc. He is so anxious anytime someone walks in the room. So, we got him a bit today and his mood was much better. He even took a few assisted steps, which is a big milestone. Miller came to visit and I had a lot of fun with her. There was fantastic magician here and she has the BEST belly laugh ever, which I heard non-stop and it made me so happy. Merritt stayed home and had a great time with Sonia, so everyone got the one on one time they needed :) I'd say the BEST part of the day was after they gave Briggs his Ativan tonight. He's hysterical!! Falling over, laughing for no reason, trying to put all the wires on this head and laughing...it was worth some video. Alas, as all good things come to an end, he was tyranical going to bed for the lat hour, but now hes's out for the 4 hours or so, so must make my move to slumber now too. I wish I could figure out slide show for the post!

OK picture loading is not working tonight, i will try again tomorrow

We're hoping to be out of here by Friday!!

Doing Much Better!

We got such a great smile from Briggs this morning and he is in a much better mood (could it be the valium?). It's a big improvement though, because even doping him up didn't help before today. Also, so far, the blood culture is coming back negative for infection. We still need to wait and see if anything grows, but it's excellent news. I did break down yesterday and scream bad words at the staff here. Apparently when they took the chest tubes out 2 days ago, some of Briggs' blood got in a nurse's eye. So, she requested an HIV test from him with required another large blood draw. This is terrible for him since he no longer has an IV from which to draw blood. That piled onto a littany of other complaints sent me over the edge. But I am way over that now and so excited that he is seeming more and more like his normal self. Here's a picture of that smile I have been praying and waiting for :)

Girls Visit Tuesday

The girls came to visit and that was great. Merritt has a cold/cough, so she had to wear a Mickey Mouse mask, which made her feel like a doctor. All three kids played in the playroom here and it was nice to be a family again. I will not take that for granted any time soon! We were thrilled that Briggs wanted to move around a bit more to get to some of the toys.

Infection is Likely

According to the blood tests, it looking more like Briggs has an infection. What they will try to do now is determine the source by culturing the blood for specific bacteria so they know what kind of antibiotic to use. There's also a chance that he has a virus, so the doctors wants to wait a day to see if his fever subsides on it's own and he starts feeling better. Waiting makes me nervous if there's a chance some infection is growing in him (likely it's a blood infection, bladder or wound) - but I defer to the doctors and thankfully I have a few doctor friends that are able to walk me through the options with more clarity and peace.

We thought taking him in a wagon might make him happy, but nope! And, certainly this pathetic lunch wouldn't make anyone happy! We had to take a picture of it, it's so funny. They know about all his food allergies, so that's what he got. I think we'll stick with formula and baby food for now!

Who Knows!

Half the night was good - he slept until about 3am, but then he threw up and ever since then won't drink and gags a lot. He's very irritable and the nurse thinks maybe he's going through Ativan withdrawl...his fever is gone, so that is a huge blessing. They just took more blood, so we should confirm there is no infection today I hope. I just wish he was comfortable! He stopped crying for a few minutes to enjoy the books my bought yesterday. The "Ride Along with Thomas" book has lots of buttons that make some fantastic (in his opinion) train sounds. Even the Thomas theme song, which we are hoping to hear all day :) I'm sure our roommates don't appreciate the book nearly as much as Briggs does, but if it stops him crying, we don't care!! We're about to head out to Merritt's birthday celebration at school. Her birthday isn't until Saturday, but tomorrow is the last day of school. She will be excited to see both mommy and daddy at the same time for the first time in weeks.

Okay, Briggs too

Briggs had an Echocardiogram tonight and things looks "tight". No residual VSD, and all the valves look good. He still has a fever, but no increase in white blood cells, so this might be a virus instead of an infection (which would make sense since both girls have been sick lately). I'm a little concerned that he's not able to sit up on his own and hold his head stable, but he's had a rough week and now has a fever, so who knows what is "normal". More later.....I hope it's a quiet night.

The Miller and Merritt Show

Enough of Briggs!! The girls have been happily entertained by Sonia and Gabby (grandma), but they definitely miss the family and their brother. This has been very hard on them. I came home tonight to play with them and watch their fashion show. Oh, and Nordstrom was on the way home, so made the quickest stop ever for the best girls' fashionista attire I could buy in 2 minutes. The results were as expected :) Miller was in charge of tickets, as shown in the picture and Merritt was more than happy to strut her stuff through the sheet curtain "stage" that Gabby put up outside for their runway. They are strong, wonderful girls and Billy and I miss them soooo much. It makes it MUCH MUCH easier to know that they are being well cared for and entertained by Sonia and Gabby.

Merritt on the Catwalk and Miller in charge of Fashion Week Tickets

Good News, Bad News

Briggs was whimpering and lethargic from about 5:30am on today and his heart rate was consistently very high which was the beginning of him getting a fever. He's pitiful and really suffering, so please please pray for his comfort. This could be just a post op fever or an infection of some sort (which wouldn't suprise me I guess since they did emergency heart surgery in a non-sterile hospital room!). I'm very worried, but the doctors seem to think this is not abnormal and can be easily managed. SO, here's the good news. His chest tubes are out and we are able to leave the ICU today, which will be less stressful for him and we can stay in his room at all times. The ICU is bright, loud and noisy. We all need some peace and quiet. And, we'll be on the same floor as my friend Andrea and her son - maybe even roommates, we'll see. Please pray that this is not an infection or something serious. If it is an infection, we'll be here at least another 7 days.

I'm posting these photos more for the documetation of the series of events here. I would NEVER normally post a picture THIS hideous of myself, but I have to say it kind of makes me laugh because it really sums up how I feel. I'm pretty much a wreck. And I really miss the girls. I'm going to get in a post and some pictures of them soon too. But, I'm still so thankful for our friends and support.

Daddy looking handsome still, sweet Brigsy with a fever now and Mommy looking pathetic!

Pretty good night

Briggs is sleeping now again, but has been up on and off for the last couple hours. Now that his central line is out they have to do blood-draws the old fashioned way...with a needle. He didn't appreciate that at 4:30 in the morning. He also didn't feel like getting a chest xray at 4:15 in the morning but that's when the radiology tech showed up for his morning snapshot.

Little Briggs is definitely in some pain, but it seems manageable. He has mostly just been on Tylenol the last 24 hours, but did just get some morphine to help the pain.

Since this is our first time through this we don't know what's "normal," and since his emergency event was so unheard of he is a pretty special patient here. So it's hard to know if he is doing well for having VSD closure surgery, or doing well for having VSD closure surgery and then bleeding out and having another surgery. We want him to be doing well for having VSD surgery, and be at a point clinically where it is as if the second surgery never happened.

Here is a picture of him smiling at Rebecca Foster. Christa may have posted this one already, but i don't care b/c it is cute.

Slow and Steady Progress

We're making progress, but we still need to pray for Briggs' comfort. I think he's in a fair bit of pain, maybe more than the "usual" amount since he had two back-to-back surgeries. He sat in my lap again tonight, which was gerat. But, he's certainly not "himself". It will just take time, but of course I'm eager to be with the little boy I know again.

Time to get some sleep - we hope to move up to the 3rd floor tomorrow - there are quieter rooms where you can sleep in the room with your child. In the ICU, you have to sleep in a community sleeping room with other parents, chatters and snorers. And you would not believe all the sounds of the monitors, alarms, etc. with 4 patients to a room!

Tonight Rebecca came by with yummy chinese food and more importantly, wine! I was so happy to see that she could make Briggs smile so easily and has yet to give one to us. They were right when they told us that even at this age, they have to blame someone and it's usually the parents. I guess some things never change. But, it was nice to see him smile.

For some reason, I can't load the images. I will try again later....

A Few Firsts

Things are moving along here! Briggs got his first bottle and first baby food, we also got to hold him for the first time, which was painful for him and therefore brief. But it was heaven for me. The latest we're hearing is that they will take out his central line (the IV in his neck) today. Briggs already took out one of his arm IVs himself last night. That was not fun at the time, but ended up to be a good idea as he could suck his thumb and get a little rest. He still has some CO2 in his blood, so he's only high flow nasal oxygen. They are weaning him down today, but he can't leave the ICU until he's off that. He also still has an IV in his leg and his other arm, but one of those should come out soon. The trick are the chest tubes. One goes into his heart to drain any leftover fluid from surgery, but he has a second chest tube because he had some fluid in his lungs which has now been cleared but they will leave the tubes in for a while to be safe. He can't really move around much until those tubes are out because they are each connected to large boxes. But, we're eager to see if he can and wants to walk. That will speed healing too if possible. The next day are going to be tough - he is mad, wants to move, has no attention span - it's basically like taking a 4 day plane flight with a 13 month old who has to stay in his own seat wrapped in wires. At least, thanks to friends and family, Billy and I can occasionally get off the plane :)

Here's are a few pictures of our firsts:

Also, I wanted to say thank you to the people of Menlo Park Presbyterian Church for the prayers, the women who make the prayer shawls (shown below with my friend Andrea whose 4 year old son Drew will be leaving the hospital pretty soon), to Frank and Erica for their visits and prayers.

Decent night and finally eating!

more later - the network is broken. He slept some and finally got to drink his formula. he really wants to be held and that is sad. He might get moved out of the ICU later today or tomorrow morning.
It is good to see him with less drugs in his system. Until now he's been pretty comatose. Now he is fairly alert, but annoyed, bored, and in a bit of pain.

Extubation, Round Two

Okay, sorry I haven't posted lately - there is something wrong with the Stanford network. So, Briggs is finally extubated again. YAY! It was another scary experience though. They took out the tube when he was too sedated apparently and he did not breathe on his own for about 15 minutes that seemed like forever. They were going to reintubate him, which brought me to more tears (could I have any left?), but they decided to give a drug to reverse his sedation a bit and he finally breathed. They are watching him very carefully, but he is starting to seem like himself - what I imagine him to be like if he's a grumpy drunk :) He saw the balloons and immediately wanted to hold them, which is a little difficult with all the IV lines coming out of every appendage! And he said "da da". Very cute. He can't eat for another 5 hours, so he's going to be mad again - but hopefully we can find the right balance of sedation so we don't have another emergency episode! In the meantime, we're trying to keep him happy with these lemon flavored swaps (they are like huge Q-tips). Here are a few pictures.

Lovin' the lemon swabs and wanting to hold balloons

It's 3am, I must be lonely

Actually, it's only around 2am, but I always kind of liked that Matchbox 20 song...so, I'm not lonely either, little Brigsy is resting comfortably next to me. He is doing well - all his stats remain good and they are keeping him knocked out to give the little bugger some time to heal. We've confirmed he has a very fast metabolism like his daddy since he breaks through the pain meds and sedatives in less than an hour when they are supposed to last 3-4. They have him on 1 mg of Ativan (basically Valium) every hour if needed. This is bigger than the dose I was prescribed to take as needed this week to calm me down!! Hopefully tomorrow we can take out the breathing tube and we can give him something to eat and he'll start getting back to his old dancin' self. I'm really starting to miss his little personality. Every time he wakes up, he reaches for me and the look in his eyes is so sad, but I know he's getting stronger every hour and I can't wait to hold him finally!! I'm putting a picture of him dancing in hallway here before his operation :)

A big thanks again to Mary and Julie for their visits, and Mary Karen for dinner. Thanks to Katrina and Lynnie for some goodies that arrived at home today. Thanks also Laura for the balloons. In a rare moment of half clarity, Briggs reached for them and we helped him hold one for a few seconds. Hopefully that gave him a smile inside :)

We're about to change the bandage (actually I have nothing to do with it) - I wonder how it looks after being opened twice. I won't post any pictures of that - we'll leave that to the Discovery Channel.

Briggs' Little Pre-Operation Dance

Stable for Now

Briggs is stable now, but needs LOTS of drugs to sedate and paralyze him, otherwise he is MAD, HURTING and/or HUNGRY. In a few moments of semi-clarity, he pointed at the door. It made me happy to see him communicating, but said that he was telling me he wanted to leave. Here is a picture of him trying to suck his thumb with his favorite blanky. The breathing tube makes it a little tricky! You'll see he has new bandaged on his sternum because the surgery last night was a repeat procedure albeit unplanned. Also, a picture of Miller visiting with us in the ICU.

The neurology team came to assess Briggs as best they could given his sedated state. They felt that whatever they were able to test appeared normal. His other metrics are stable or normal as far as we've been told. When/if they extubate tomorrow will be the real test b/c that's when he'll be most uncomfortable and un-medicated. Briggs is quite the topic of discussion in the ICU today. Dr. Hanley said in his thousands of cases, he's never had a child tear a suture out like this from thrashing around. Briggs the Bruiser.

Mary Speiser and Julie Nelson have been a huge help in providing shoulders to lean on, and giving us a break occasionally. We have been so lucky to have so many friends and family members helping out. A huge thanks to Mary Karen Lundh who scrambled in to the hospital last night when Briggs went into surgery and stuck with us through the whole thing. Thanks MK!

We also had a special visit from Dr. Simpson, a family friend, interventional cardiologist, and professor at Stanford Medical school. JBS is quite the man in cardiology, and all of the doctors knew who he is...so they gave the straight scoop and it was great to have his input.

We will keep you posted as things progress...

NEED LOTS OF PRAYERS NOW

Too crazy for pictures right now. We had a scary, scary night - probably the worst night of our lives. As I wrote earlier, Briggs was MAD and HUNGRY, being the strong guy he his. I kept asking for more sedatives and/or painkillers, but they were conservative despite my warnings that he will try to GET OUT if he doesn't get something to eat (and you can't pick him up to soothe him). Technically you have to wait 6 or more hours after being extubated before eating. Finally Billy convinced them to give him food and while he went to get the formula, Briggs sat up, thrashed around on his tummy and had to be restrained. That's when LOTS of blood starting flowing from his chest tube. They told us to get out and that they were calling our surgeon, Dr. Hanley. Thankfully, Dr. Hanley was still here (midnight) and they ended up doing emergency surgery in hospital room to stop the bleeding - there was not enough time to even go to an OR. So, they opened him back up, but the bleeding was so bad that his blood pressure was dangerously low for several minutes. They couldn't put new blood in faster than his blood was leaving. THANKFULLY, he did not die but now we have other potential complications. He is reintubated and we have to wait to see how he comes out today - there's a chance that there could be multiple organ damage, including the lungs, kindney, brain, etc. It seems like he's peeing well (hopefully the kidney is good) and his liver numbers look okay in the blood, not sure about the lungs as he's still intubated and we'll wait to get an exam this morning about his brain from the neurologist. A far cry from our smooth surgery and day yesterday. Up until then, the plan was to send us to a "real" non-ICU room today and then maybe home in the next two. Please pray for his full recovery and his comfort. He is so uncomfortable!! But, we almost lost him and thankfully he is still with us. What a fighter.

Good Night Thursday

Briggs has been moaning and very uncomfortable. He kicked off his ankle lines and generally is not happy. They have been afraid to give him any painkillers that might affect is blood pressure and respiration, but finally they agreed to give him Versed (in is picture) which helped him settle down quite a bit. Now we just have to keep him happy for four more hours until we can give him just a little bit to eat, which is what he really wants. It's been almost 24 hours without food and he's getting MAD! They don't let you eat in case there are any complications that would force you to go back into the Operating Room.

Good News, but kinda sad...

It was finally time to extubate Briggs, which is a huge milestone here and quite early! It means MAYBE we'll got to a non-ICU hospital floor tomorrow. His recovery is going so great and he is such a trooper! Once he was extubated, he seemed very uncomfortable, so they gave him morphine and it's not working. So now, since he can't really cry loudly after intubation, he moans with tears running down his cheeks. It's very sad and hopefully he will find some comfort soon. If not, I'll just ask for the morphine myself!! Here's a picture of Julie and I waiting for Briggs to be extubated (THANK YOU JULIE FOR DINNER!!!), and more pictures of pre- and post-extubation. He's SUCH A TROOPER! Please pray for his comfort.

Waiting for him to wake up

Briggs is doing well so far. He is still on the ventilator, but is waking up here and there. He clearly doesn't like having the tube down his throat and coughs a bit which seems more like a hiccup with the tube in. He is also annoyed by the IV lines in his foot and tries to kick it off. Thankfully he won't remember any of this. The nurses are very nice and paient with our million questions and have been explaining everything they do and give to him.

Right now Briggs has: 1-breathing tube to the ventilator, 2- central line catheter, 3-temporary pacing wires in case he has any transient heart block, 4-two separate IV lines for fluids and drugs, 5-an arterial line for delivery of drugs and monitoring, 6-a chest tube for drainage of blood from around his heart, 7- a foley catheter for urine, and 8-ekg electrodes. Wow, that's a lot of wires!

The nurses think he will be awake enough to extubate tonight sometime. We'll post more as things progress.

He's Stable, Still Asleep

Lost of wires coming from the little guy

Briggs is still asleep, altough he's starting to break through. This should be interesting - I've heard this is the hardest part. Once he wakes up, they will try to extubate him to make sure he can breathe on his own. This is generally when kids are frantic, can't be comforted and want to pull all the wires out while gagging on the breathing tube. I hope it all goes quickly and smoothly and we can post a picture of his sweet face without any tubes in the mouth. Anyway, there's talk that they will try to do this tonight at some point.

He's Done Already!

We are all smiles!! The surgeon came out sooner than expected and said that everything went very smoothly. They fixed the hole in is heart, stopped the valve leakage (as much as they could - there will still be a little bit) and they were actually able to cut out a piece of abnormal muscle that was coincidentally found in this right ventricle. This is great because 20-30% of these growths require surgery at some point in life and he just took care of that now! Next comes the hard part when we see him for the first time - in about 30 minutes or so.

He's In!!

We just met with the surgeon and he's heading in now; Briggs has been quietly asleep in the OR while they prep him for the last hour or so....pray for the diligent fingers. Daddy and Briggs Before Surgery

Briggs Dancing in The Hallway

Briggs after taking some "make me feel groovy" meds :)

What is Open Heart Surgery?

Some people have asked, so here is the best description that I could find of what will happen tomorrow.
http://www.cincinnatichildrens.org/health/heart-encyclopedia/treat/surg/open.htm

Pre-Op Complete

Briggs was such so good today during his pre-op visit - a little nervous around the EKG, more so with the x-rays and screaming with the blood draw. But he is still so smily and sweet. We are just anxious to get to Thursday!

Dr. Briggs

I just had to post this picture - it's very cute and appropriate that Briggs likes to walk around with a stethoscope around his neck. Maybe this whole situation was presented so that he would grow up to be a pediatric cardiologist, which is always what I said I wanted to be as a young girl. I could barely pronounce it, but thought it sounded cool. My mom can attest to this :)

Giving Thanks for Blood

Since no one in Dr. Hanley's office ever told us he required at least 4 units of blood in Briggs' surgery, and I just found out late last week, I had to scramble to find friends with Type O blood to donate within three days. I was very angry because Billy and I could have been donating every week for the last two months, but many friends pulled through and we very thankfully have the blood we need. Here is our friend Rebecca with her "Giving is Groovy" token t-shirt. It's very special to me that a part of these people will be a part of Briggs.

Escaping to Carmel

Miller ended up being sick all week with a very high fever and both the girls have barely left Gigi's house (grandma), so they have been like caged animals. So Sonia and I decided to take them to Carmel for a weekend adventure. It was very fun and they were CRAZY! This has been very hard on them to be sick and away from home for so long. But they are troopers and getting a lot of guilt presents out of the deal! We have decided to keep them away until surgery Thursday, just be safe, so it will be a long few weeks to come for them.