April 30, 2012

April 30, 2012

Life at Memorial Sloan Kettering...different. Lets start with this the view is not as good but the food is much much better. They treat the parents to three meals a day...each. Me...food...George...free food...it just works. They give us a menu and you call down and order your food like room service. Don't worry they take care of Clayton too. He gets his own special menu. They give him anything he wants. Let's face it, he's a rockstar. Always has been ever since they jetted him off to Children's of Alabama when he was a few days old. They roll out the red carpet for their sick kids. Except for wipes. They don't supply wipes or size 6 diapers here at MSKCC...odd.
We have a private room thank goodness, because Clayton has had a hard time sleeping with all of the alarms from the other patients in our PICU room. Hopefully that means good sleep for the whole family tonight.
We'll probably only be in this room for a night or two. Our current unit is the POU (Pediatric Observation Unit). They pronounce it "poo". Ironically, that is exactly what we need Clayton to do. His bowels have been "sleeping" since surgery and we need them to wake up because his belly is very distended from being backed up.
Everything is looking good though. His creatine levels (kidney function) are perfect, he is off all respiratory support, and he is eating and drinking. Yay!
We did find out some new stuff today, but I am exhausted and can feel the black circles growing, so it has to wait until tomorrow. Seriously, it was hard keeping my eyes open for this. First thing though tomorrow...promise.

April 29, 2012

April 29, 2012

Miscommunication. That seems to have been a theme between yesterday and today. The plan yesterday and the plan today aren't quite the same. Change of fellows and residents seems to have aided in the miscommunications. All in all, I'd say we got the short end of the stick with staffing this weekend. Even if you like a hospital, this is a problem your bound to run into.
Let me start by telling you about the doctor. Friday we briefly met her as she was going to be the attending over the weekend. She was wearing her hooker boots with her fish nets as George would say. Saturday was the first day we had her as our doctor and when she rounded, I was too distracted by her spastic behavior to notice her clothes. George would swear she was "on something". Seriously. His words. Today, she came in wearing her jammies or something, acting just as she did the day before. Very spastic. And even though she had on her white coat, it was wide open for a nice view of her stomach which lacked coverage from her shirt.
Now I could have overlooked all of this had she had her ducks in the same row we put ours in with the previous team of doctors caring for Clayton. If you look back, I gave you a brief overview of the plan. Well, her plan and the one we had from the fellow that has been with us this whole time, but is off today, differed. Hers was slower, more cautious. Cautious is not bad, but her plan was unnecessarily cautious given Clayton's progress. She wasn't weaning him off the high flow canula or planning on putting him on the small one today. All things which had been previously agreed upon by other doctors given Clayton was doing good with everything. And he is doing great with everything!
She clearly did not want to compromise easily this morning, so she and I had what George called a "pissing match".
To those it may concern:
If there is ever a "pissing match" involving my child, I will win. I am competent, smart, a quick learner and most importantly, I am not so stubborn that I would ever put my child at risk. I am fully capable of listening to all the factors and making the decision that is best for my child. I know my child. I know his ups and downs and cues and I know when to question a doctor's judgement based on these things.  I live with him around the clock. I know the things they can't.
Note to all parents:
Listen to the doctors, learn about the problem on your own and then pay attention to realize where the doctors advice may need to be customized for your child or loved one. At the end of the day doctors give advice and you get to choose whether you follow that or not. Sometimes their advice will work, but sometimes it doesn't cater to the specific patient. I am not suggesting fighting doctors on everything, but learn about your environment and realize that some doctors have more sense than others.
Doesn't matter if it's a fellow, resident, doctor or nurse, they don't know everything, even if they think they do. And if you want the best care for your child or loved one, then pay attention and learn. I am sure I am starting to sound like a broken record, but with the experience I've had over the past three and half years I have learned how important this all is.

In the end everyone agreed we would lose one of the nasal tubes and the additional IV he had left and we did (he still has his Hickman though). George and I told them we thought it was a better idea to give him a chance to eat on his own during the day rather than do continuous feeds, and that is what we are going to do. Then George and I said that he had proven that he is capable of supporting himself from a respiratory standpoint enough to downgrade to a normal canula, and after a bit of a heated discussion and doubt from the doctor, we have done that and just as I (and the previous doctors) suspected, Clayton is doing great! No problems!

This is my child's health, so we're not keeping score, but if we were it would be:
spastic doctor-0
Clayton- exceeds expectations every time!

April 29, 2012...3:22 am

We've had a pretty good day yesterday. Fairly quiet. Clayton slept on and off which explains the early morning post. He is wide awake right now. The biggest upset we had today was him throwing up just a little a while ago. They started giving him Pediasure through his NG tube earlier and his belly decided it needed a little break.
Aside from that, we got to lose the IV in his foot and since our 24 hour urine collection ended at 2 am, we just got to remove his catheter. Still waiting to lose one or both of the NG tubes.
They also wanted to take their time with his respiratory progress, so they kept him on the high flow canula all day. No reflection on him, his numbers have all been great. Doctors are just being cautious. He has been amazing about the whole thing though! He is so good at not pulling at any of his cords and not trying to remove the canula. Such a trooper.
Now that he's not intubated, George and I have been able to enjoy cuddling with him again. And he's back in action giving hugs and kisses and high fives. His personality is definitely coming back, but smiles are rare to non existent at this point. We'll get there...

Again don't let his temporary canula scare you... Much better than the breathing tube or the mask!

April 27, 2012

April 27th and 28th, 2012

OK. We got him extubated successfully. Now we just have to make it through the evening. We are hoping he continues to breathe strongly. If so, we should transfer back to Sloan Kettering across the way soon.

**Sorry, that was meant to post yesterday, sometimes it doesn't go through**

On to today, Saturday...
We successfully got him extubated and he was put on by-pap (?spelling) overnight. It looks like a fighter pilot mask that gives him O2 and some pressure while his lungs adjust to being without the breathing tube. He has done so well that we can switch him to a high flow canula anytime. All of his blood gases and his stats have been perfect. However, he has been sleeping so peacefully ever since the extubation that we are waiting until he stirs before switching to the canula. I know you would think he wouldn't want to sleep since he has been sedated for a week, but most of that was not good sleep. It was a doped up haze and so his mind and body need this good, REAL sleep. He is now off all his meds except for two; a very low dose of an anxiety med and a very low dose of morphine to help his body handle coming off of all the heavier sedation.
Yesterday was a HUGE hurdle! Thank everyone so much for all their prayers. We needed them! I think Zoe will be extubated today, so please pray for her too!
To review, we lost the chest/drainage tube on Wednesday, we lost the breathing tube Friday, we should be losing at least one of the nasal tubes in the next few hours (remember he has two different types of feeding tubes- one per nostril- only one was suppose to be used for feeding the other is meant to get extra air off his belly put there by the ventilator), the other nasal tube he might lose within 24 hours, we are doing a 24 hour urine collection on him and so we can lose the catheter tomorrow morning, we should be able to lose one if not both of his extra IVs soon as well (the ones he has in addition to his Hickman- one of the IVs went bad yesterday so they removed it and replaced it with another one, so still two extra)...I think that is most of it...
There are typically a lot of little things going on, but it can get hard to update everyone on all of those so I try to cover the bigger things (plenty of those lately).
With the weekend and all, we will stay in the PICU and go back to Sloan Kettering Monday. We shouldn't have to stay there for anything though. It should be a matter of getting our "plans" from them and then getting ready to head home until we start the next phase of treatment. More on that soon...

Don't let the fighter-pilot mask scare you. Much better than the breathing tube and he has been asleep almost the whole time he's been wearing it so it hasn't bothered him too bad.

Extubation Update

We are power weaning him off his ventilator rate getting ready...

April 27, 2012...Prayers Needed!

We are going to try again to extubate Clayton today and we need lots and lots of prayers over the next 3-4 hours. We desperately need this to work! Prayers are welcome all day, but especially in the coming few hours as we attempt his extubation. Please pray really hard this works. We need this. Clayton needs this!

Couple of updates: Clayton had his chest tube taken out Wednesday afternoon. Also Zoe will not be extubated today after all.

Some people might wonder why this is such a huge deal after a tumor resection and some of you might already realize, but just to shed some light... The surgeon did remove the tumor in the abdomen, but he also looked all around chest cavity for any evidence of disease and anytime you open the chest cavity you open the possibility of complications with the lungs. However, it was a necessary precaution.

April 26, 2012

April 26, 2012

So I would be lying if I said the past couple of days had been boring. In fact yesterday afternoon was quite stressful. It has been a battle to find the right combination of meds to keep Clayton sedated. We are far enough out from surgery that pain is not a huge issue. The issue is that Clayton needs to be sedated enough to keep him still. After our second failed attempt to extubate him, our focus has been to keep his lungs dry and keep him still in order to keep the tube from irritating his already swollen throat. You would be amazed how hard it is to sedate this child. Everyone is surprised. As I've said before nothing is easy with this him. Makes for lots of adventures!
In addition to playing with his sedation, we have been combatting some (very common) PICU delirium and some respiratory stat issues. The delirium is just where the babies get dazed from their environment and the sedation. Respiratory issues were also resolved. The details of these things don't matter and are too exhausting to review. We went over and over and over and OVER things last night with the doctors. We resolved some things and had a much better day today. Sometimes it takes a little pushing for the doctors to accept that while they are the medical professionals, the parent knows their child and therefore might know what works better for them. It's a delicate balance figuring out when the doctor is making the right call verses when you should step up as a parent and override them. Because as the parent, you CAN override them. You can say no, the trick is knowing when it is necessary to say no and when you are just being stubborn or nervous. To be successful as a parent at this, you must pay attention. Doctors and nurses aren't always right. They both mess up. And they don't know any more about your child then what they read on a piece of paper and learn in the couple minutes it takes to examine them. Every mother I know whose child has cancer will tell you to trust your intuition. If you feel something is wrong, it probably is. There is never any shame in questioning everything.
Clayton's little PICU sweetheart, Zoe, had a rough time this evening and it is heart breaking. It is heart breaking knowing that could have been Clayton just as easily has it was her. It is heart breaking seeing the anguish on her parents' faces- especially since this world is new to them. It is heart breaking because to it is impossible to see something so sweet and innocent and understand why they are lying in a hospital bed. It was heart breaking because even though it wasn't Clayton, I truly understand how they felt in that moment. It is the moment your world stops. Your head spins. And your heart hurts. Because you have no idea what is going to happen next. But whatever it is, you know it is going to happen fast relative to the situation.
I have had too many of those moments in the past four years of my life. It's funny, when Clayton was just a few months old my sister saw a picture in my house of me and my friend Blair at an Auburn game and she commented how much younger I looked. That was the moment I realized how much being a parent had aged me, because at the time, that picture had been taken less then a year before. My teeth, my skin, my sanity and my heart are all paying a price for being a parent. To think, I'm only a few years into parenthood...God help me.
Anyhow, we hope the third time will be the charm with the extubation tomorrow. Zoe is suppose to be extubated tomorrow as well- not sure if that has changed. Please pray for Zoe and Clayton to both have successful extubations tomorrow!

April 25, 2012

April 25, 2012

Hopefully today will be a slow day for us, so I'll answer some questions. If anybody ever has a question, leave a comment and if it's something I'm comfortable answering, then I surely will.

How big is his incision?
Roughly 8 in. 

Is the RM house close to the hospital?
Yes. It is about three and half blocks from where we are now at NY Presbyterian and five blocks from Memorial Sloan.

What is the hospital room like?
It is a big room with three patient beds and a nurses station. Each bed has a corner with a privacy curtain. There are usually two nurses at the station.

A larger view:
Nurses Station and our area:

and a peek inside our area:

The only other new update is that we now have a neuroblastoma neighbor in our PICU room. It is a two-year old little girl - cute as a button, seriously precious! Dr. La Quaglia resected her tumor yesterday. Ironically, she too has the rhinovirus. Also I didn't get up with the Stapleton family last night, but we will today. George bumped into them though.
All Clayton's numbers look good and we are still looking to extubate him on Friday.

Here are some random trip pics:

April 24, 2012

April 24, 2012

First off, I tried to post yesterday, but it gave me problems and I lost that post. Nothing new happened though. So I'll just move on to today...

This morning was full of anxiety waiting to hear if the doctors were going to extubate Clayton. They made the order to do it and this time asked George and I to step out. Last time they tried we were able to be there. They prepped everything and made sure they had what they needed whether the attempt was a success or a failure.
Knowing how long things take, I set my phone timer for 10 minutes. Nothing. Trying to be patient, I set it for another 10. Half way through the second 10 minutes, George and I were told we could go back, but before we could get down the hall a nurse stopped us saying they needed a few more minutes. So back to the waiting room we went. I set my phone timer for 5 minutes determined I was going to know what was going on. After it went off I walked my axious behind right back there and saw through the window he had a fellow at the head of his bed holding a mask over his face, an attending beside him, two nurses and the head attending there as well. Obviously something wasn't going as planned. I didn't go in in order to not add to the chaos, but I waited in the hall this time. This momma doesn't play. I need to know how, when, what and why. As we were waiting back in the hall, the attending stepped out and let us in. She explained that his airway was too swollen for him to take sufficient breaths. This was due in part to his rhinovirus (mild cold). That is why they don't like to operate on sick children unless necessary. Our case was necessary. They worked nonstop to help him breathe without the tube. The tube was probably out for 20 minutes before his CO2 levels were elevated to a point that can cause cardiac arrest and therefore they asked us to leave and immediately re-intubated him. To answer the inevitable question from that statement though, he is OK though and there was no damage from trying to take the tube out.
Because he has now been intubated for so long, they are going to put in a special feeding tube that goes right past his stomach to avoid reflux. They will use that to give him nutrition the rest of the week.
That will mean he has a tube coming out of each nostril- one to express air from his stomach caused by the ventilator- and one that goes beyond the stomach to feed him. He then has lines hooked up to each of the lumens on his Hickman, IVs in each wrist, a chest tube draining fluid from his surgery sight, a catheter and all of the monitoring devices hooked to his chest and of course the ventilator tube in his mouth. It is not a pleasant sight and I am sure you can understand why I hesitate to show revealing pictures of my baby in his vulnerable state. My peace comes from knowing he will be asleep for a couple of days.
That is the plan. They will put him to sleep for a couple of days, let his body rest, feed him, love him, watch over him, start prepping him with steroids on Thursday and try again on Friday. If we successfully get him off the ventilator on Friday, then the duration of our stay shouldn't be much different then originally expected. Maybe a day, maybe nothing. There is no point speculating beyond that though.

This situation sucks. It sucks to walk into the dining room at RM house at dinner time and see as many as twelve kids with cancer. It sucks to walk into the day clinic at Memorial Sloan and see 20 kids receiving some kind of treatment. Sometimes the kids have the energy to play and sometimes they don't. It is sad knowing the battles they and their families have to endure, yet it is heart-warming to see the resilience and optimism with which these children face each day. That's the thing about childhood cancer, it is both heart-breaking and heart-warming.
Sometimes it's hard to imagine that we are going through this. Is that really my child laying in that bed? Is this really my life? The answer is always yes. That is my child, this is my life. It is what it is. You wake up, you get dressed, you love your baby and you go to work or the hospital or play in the backyard. Whatever the day holds, you do it. Because whining about it and crying about it doesn't change it. Sometimes it's necessary to cry. After all, you don't want to go crazy. I had a phase a couple of weeks ago and I distinctly remember crying four separate times in one day. (I even came back from my lunch break one day and forgot I had been crying and had to duck back out for a minute to fix my face.) Tears or not, at the end of the day your life is your life and as the wise Rafiki from the the Lion King says, "You can either run from it or you can learn from it". Learn to be stronger, learn about a cause that needs help, learn everything there is to learn about it because knowledge is power. Whining about things doesn't make them better. Crying is just a temporary release. But learning something and using that knowledge to advocate for positive changes, now that is worth any exhausted parents' time. It will change you, and depending on what you choose to do with that knowledge it could change the world.

But let me get off my soap box...

Everything else with Clayton is doing good today. Kidney function great, healing fine, etc. Now he is resting peacefully as he will stay for the next couple of days.

For now, I am going to go for a walk so I don't come home looking like I just ate my way through a bakery. Then I am going to be meeting the family of a little neuroblastoma survivor from Stapleton. They are coming up here today for scans, so we are going to finally get to visit face to face rather then by text.
More later...

April 22, 2012

April 22, 2012

Tonight will be interesting. Clayton has been more awake today than any other time since surgery. Keeping in mind he is sedated fairly well since he is still intubated. Despite that, he has been itching his nose, reaching for his iPad, opening his eyes from time to time, trying to get the O2 stat reader off his toe, and showing a little of his personality through the haze.
His creatine has continued to fall, putting it closer in line with his base line levels. The last check showed it was 0.75 and his normal is 0.3 to 0.6. He is also peeing like mad getting rid of all that extra fluid on his body. All good things. For now the plan is to extubate him again tomorrow. Hopefully for good this time. Which means an early morning for me and George. I have been staying in the PICU with Clayton every night and George comes from the Ronald McDonald house every morning. Then I go to the RM house around 6ish and clean up and snag a couple hours sleep and go back to the PICU. In the morning however, we will be moving our routine up a couple of hours so that we will both be there from 5 on as they prepare him for extubation. It's a process that seems to take a few hours, so they start early.
As far as our experience here goes so far, I have to say that it has been good. I have been very impressed with both hospitals here in NYC. The set up of the facilities and the staff have both been awesome. Now when I talk about how the facility is set up, I mean the particular units we're in. The hospitals as a whole are crazy. They are great big white mazes of different elevators, wings and towers. Hopefully we'll be out of the PICU and back to Memorial Sloan soon!

April 21, 2012

April 21, 2012...Recovery cont...

So things didn't go as we hoped and Clayton had to be intubated once again. There is a delicate balance between managing pain and having Clayton come off respiratory support. Now, from what I witnessed today, there was a small window when Clayton was off the ventilator that they could have medicated him safely while maintaining his respiratory progress. However that didn't happen and now we're back at square one.
As for his kidney, it is doing great. His creatine level has been slowly making it's way back to normal throughout the day as his urine output has increased.
So let's see... Safely remove tumor- check, sufficient urination and kidney function- check, getting off respiratory support? We could use some help...a few more prayers for healthy breathing?

Truth be told I am tired and grouchy and the PICU is the type of place to bring you down. We had just 5 hours of surgery, but we are already past 24 hours of recovery ups and downs and not sure when the end will be.
So far we have been trading off time between here and Ronald McDonald House. One of us is always with Clayton.
More later...

April 21, 2012 ...Recovery

OK, we made it through the night with no major problems. Clayton is still on the ventilator, but the main concern was his kidney. The kidney endured trauma from being moved around during surgery, so a lack of "liveliness" following surgery was expected. The important thing was to ensure there was no unexpected damage. So we spent the night waiting for him to pee-pee. He gradually produced a little more and more throughout the night. To be on the safe side though, the doctors ordered ultrasounds and a sonogram to ensure the kidney looked good and had sufficient blood flow. His creatine (marker of kidney function) was slightly elevated this morning, however, Dr. La Quaglia is not concerned and feels that is expected after yesterday's surgery. George and I have complete confidence in Dr. La Quaglia.
From a respiratory standpoint he was sedated and on minimal ventilation. They have since reduced his ventilation rate further and taken him off of his previous sedation meds and switched to propofol while we wait to come off the ventilator. From there he'll get morphine as he needs it for pain.
I am getting a little frustrated with the doctors here in the PICU about how long it is taking them to round on Clayton. Where we are right now is actually across the street from Memorial Sloan at the New York Presbyterian Hospital in the PICU. Today's doctors are taking their sweet time rounding on Clayton and it's pissing me off. He is more awake then he was overnight and yet they haven't bothered to stop in and say let's try to take him off the ventilator since we already reduced his sedation.

OK so we talked to the Peds attending and the nephrologist and we're all on the same page now. We are giving him a chance to breath on his own now, and we'll check his blood gas (?) in a little bit to be sure his levels all look good. Right now though he is holding his O2 at 100%, but his respiratory rate is a little high- that could be from the extra fluid on his body though.

More later...

Here is a pic from yesterday. And his view- which lots of New Yorkers would pay a lot of money for...

April 20, 2012

April 20, 2012...Tumor Free!

We made it through surgery. What was expected to be a 6-11 hour surgery, took under 5! George and I were scared to death when they said the surgeon wanted to speak with us. All we could think was that it was too soon. Thank God he wanted to tell us it was over and that everything went well. He was pleased with the surgery and Clayton was stable as a rock during the whole thing. He was able to get the whole tumor without any apparent damage to the kidney or it's arteries. He also looked around his abdomen and chest cavity for any other evidence of disease. He removed anything he thought was a threat and even biopsied his liver to be sure it is cancer free.
This doctor is amazing. His experience, surgery demeanor and focus along with Clayton's stability during surgery allowed this risky surgery to get completed in such a short amount of time. The short surgery time is good as far as Clayton's respiratory situation goes.
We are in the PICU now and probably will be for another 48 hours and then we should get to move back across the street to Memorial Sloan.

April 20, 2012...Surgery Update

They successfully got him asleep and ready for surgery (tubes and all) at roughly 10 until 10. So the actual surgery has been underway about an hour and half.
He did great this morning getting ready for everything and they started sedating him before he left us, so it was traumatic to be taken from us.

April 20, 2012 ...Surgery Prep

He's been in good spirits this morning. Getting ready to head downstairs...

April 19, 2012

April 19, 2012

Sometimes a person's heart doesn't know how to deal with what their head knows. Or maybe it's the other way around. Whatever it is, I know that tomorrow is one of the biggest days of mine and George's life. Nothing seems sufficient to say or do.
Thoughts of tomorrow are meaningless. The most important thing in the world to us will be lying on table like a cruel episode of Grey's Anatomy. Nothing seems right to do. If I had the strength and my running shoes, I would lace them up and just run. Not away, just around. Silly as it might sound, running -even if it were just around the block again and again- is the only thing that feels as though it would make any sense. I do not however have my running shoes and am not sure that I will have the strength to leave the building housing my precious baby in such a vulnerable state.
The thing I am dreading the most at the time is sending him off to surgery. He is at the age where we can't say, "your going to go to sleep for a little bit, but mommy and daddy will be here waiting for you". At the same time, he is to old to not realize something going on as well. And then of course I dread him waking up with a tube down his throat. The next 48 hours will be tough.
Right now I am laying in bed with this sweet thing laying beside me and tomorrow is so hard to imagine. But tomorrow will come and George and I will be armed with anxiety meds to tackle the day....

April 19, 2012

So we had to go in for a last minute echo this morning in preparation for surgery. Seriously they called at 9:25 and said our appointment was at 10; And that was the first we heard of it. The surgeon, Dr. La Quaglia, is very thorough. Though his reputation precedes him, he still managed to impress (and even intimidate) you with his genius. Surgery is this man's life. It like the Ron White joke talking about bouncers who hang out with their bouncer friends and talk about bouncing. This man is that, only about surgery. And you never know when he might spout out a random fact about surgery.  Anyhow, the man is on the shorter side, has hands smooth as a baby's butt, is impeccably thorough and is a genius. But he wants you to be prepared for the bad. He doesn't want you to be blindsided, so he is blunt. So I'm going to tell you like he told us because I have a lot of respect for being told like it is.

This is a major surgery. It is life threatening. The tumor is no longer wrapped around his vena cava, but the artery to his kidney does run through it. There is a 3% chance of losing the kidney. He will be losing his adrenal gland which is OK, we are hoping that his left adrenal gland will function fine. If not, he'll just take a pill everyday. He will have a lot of tubes coming out of him after surgery and his eyes will likely be taped shut. He will most likely be sedated and on a ventilator for two days. We discovered yesterday that he has rhinovirus (mild cold) and if that causes any problems, then he could be on a ventilator longer. Hopefully it won't. It will not be easy to see him this way, but we know he has the best people in the world looking after him.
George and I also got a good look at the tumor on the CT scans and can see how considerably it has shrunk. We also had a long talk with the neuroblastoma doctor and confirmed what we already knew and shed some light on a few things as well. More on that later...nothing big to report there.
Right now our mothers and grandmother should be arriving and we are going to take him to the park and let him run around and be a little boy!

Here are some pics of his first trip to Memorial Sloan:

April 18, 2012

April 18, 2012

Today will be a process. We are waiting now to do an x-ray. So far we have drawn blood and met with the surgeon's nurse practitioner and gone over Clayton's history.
This whole place revolves around risks. Clayton has some snot and a little cough that he has had for a while now. Even though he has not had a fever at all and his snot is clear and his lungs have sounded clear as a whistle, we have to be isolated. Better safe than sorry and we totally respect that. They are even running flu and RSV tests on him just to be sure. Then they are going to test again for the BK virus. It's not just Clayton though, they just called Clayton back for his x-ray and asked me to stay out in the waiting room just in case. Usually they ask women if there is any chance they could be pregnant, in this case they just avoid it all together if dad is around. Lots of precautions!
We haven't met with doctors just yet. We do know to expect to be here at 6:30 Friday for surgery if things go as planned. From there it is a 6-8 hour surgery if there are NO complications. So it is likely to be longer. After surgery we are looking at a 7-10 day hospital stay. Again if there are NO complications. That's the key...
George just walked out with Clayton. I could hear Clayton screaming as they tried to get him to be still and I can now see George covered in sweat. Good times...

April 17, 2012

Ronald McDonald House NYC

So here are the digs. Unfortunately, doing posts from my phone, I have to put all the pictures at the end- it also changed the order of them, sorry about that. So you are about to see our room, our little bathroom, the Ronald McDonald hospital transit, the sun room on our floor, one of the kitchens and the playroom (some of it). I'll try to get on my computer and organize these better later. And add more too!

The playroom is pretty great. They have sections for every age group a d an art section too. And you'll see they're offering music in the playroom too!