The Incredibles...

Yesterday was a mixed day.

I got out of the hospital for the first time since Monday, to meet up with my mom and sister and niece for breakfast and some Christmas shopping, while Steve hung out with Max.

When Max is in the hospital, I rarely leave his room. I don't like going down to the cafeteria, I don't like walking across the hall to get a cup of ice or water. I need to be right by him to make sure he's okay, and knows I'm there with him.

I forget the outside world, but when I walk through those doors it's like a million tons picks up off my shoulders. Then I'm only left with a million more to carry around when I'm away.

I tried to make it to the car before the waterworks started. It's been an incredibly emotional stay this time. I've been angrier than I've been in a long time. I've been more scared than I've been in a long time. I've been sad, and frustrated, and felt sick with worry. But, in the hospital room, in front of nurses, and doctors, and surgeons, and Max...I have to keep a straight face and try to not let my emotions poke through too much. I have a harder time with it than Steve does, but I've held it together fairly well.

I got to the car and called my sister to tell her I was on my way. As I started driving and was listening to NPR's weekend edition, they were talking with the founder of Island Records, so naturally, they were playing a few Bob Marley songs. I have to admit I am terribly uncool, and know very little about Bob Marley, other than a poster or two hung in my brothers room with black lights through our youth. But, they started playing "Three Little Birds"...

"Don't worry about a thing,
'Cause every little thing gonna be all right.
Singin': "Don't worry about a thing,
'Cause every little thing gonna be all right!"

Rise up this mornin',
Smiled with the risin' sun,
Three little birds
Pitch by my doorstep
Singin' sweet songs
Of melodies pure and true,
Sayin', ("This is my message to you-ou-ou:")

Singin': "Don't worry 'bout a thing,
'Cause every little thing gonna be all right."
Singin': "Don't worry (don't worry) 'bout a thing,
'Cause every little thing gonna be all right!"

And a week's worth of tears, snot, and sobs came out. Just like that. I guess I finally felt the magic of Bob Marley, won't my hippie brother be proud?

I cleared my eyes before getting to breakfast, because I was really so excited to be out. I snatched my niece up as soon as I got to the restaurant, because with illnesses floating around, I haven't gotten to see her in a month. We played, and tried to blow the fire out of the fire pit, and named all the colors we saw outside...red was her favorite, and yellow was Max's. "Max still sick, in the hospital?". "I tshorry Max isth thsick.". "Me too little bug." She loves her Max.

We had our breakfast, and then went to the mall before mom and I went back to the hospital. When we got here, Max had one less tube. The one running down his nose, through his throat to his stomach was gone. His low-grade fever has persisted, and the pain management team was worried about infection at the epidural site, so they pulled that later in the day. And overnight, his foley catheter came out since he was emptying his bladder fine.

Right now, the name of the game is watching and waiting. The motrin and tylenol have done the trick so far with pain management, we haven't had to give him the morphine. Which is fantastic! No narcotics, means less time to get out of here. We'll see how he does today, but as of 9:00am, still no big gun pain meds.

He's sleepy, and still recovering, and it might take a little longer than we wished for, but he's sure fighting in his regular Monster fashion. He let go of two monster poops this morning, which is fantastic after intestinal surgery! We're just hoping for the pain to not be terrible for him, and that we're going to be getting home before Christmas.

Abbey gets here tonight...and we're nervous about how much she's going to be allowed to be up here with restrictions in place. Just one more piece of the puzzle to juggle until we get him better and home. But, if anyone can do it, we can.

Emergency Surgery...

Last night, Max was taken into emergency surgery to investigate what had made his abdomen swell beyond it's normal size of about 50 cm, to nearly 80cm within 24 hours. It was an awful day full of butting heads with doctors, increasing pain and discomfort for Max, and an overall feeling of being out of control. It finally came to a head when at 8:00pm they finally got a good picture of the blockage and saw that he needed to be taken in for emergency surgery to remove a blockage. They weren't sure what they would find when they got in there, as a picture, CT scan, xray, and barium images can only tell you so much.

By the time we got to the OR, he was getting a fever, and was so, so miserable. I was worried senseless, and had already found myself a blubbering crying mess all over his sweet metabolic nurse's nice sweater. I just couldn't stop crying. Friends were texting and calling, family was texting and calling, and I just couldn't hold it all together. I had to have Steve call everyone because I knew I couldn't even get the words out.

In all of the surgeries Max has had, I think we're at 6 now, this is the only unplanned one. And it really threw me. Steve was, as always, perfectly calm in the midst of our storm. And I was hoping they weren't going to find something unfixable in Max during surgery.

After they took him back, we went to the cafeteria to eat some really awful food while we waited to hear from the nurse after the first hour. She called and said in that first hour they had set the arterial line, given him a catheter for urine output, given him the epidural to block pain to his mid-region and were just finishing up the central line. Then, they were going to cut open his abdomen and see what was going on in there.

The nurse came out with some blankets and pillows for us, and put us in a private family room to rest. I tried for about an hour, but then startled awake because I didn't hear my phone ring at midnight, so I stayed awake until I heard from the nurse again. (She was to call every hour on the hour.)

She did call and told us they were closing him up, and should come out to talk to us within the hour. I think they took him in at 10:00pm, and at midnight they were finishing up surgery!

The surgeon came out and talked with us. She was happy that his distention had gone down, but confused about how they fixed it. As soon as they opened him up, the pressure kind of moved through and the place that was kinked fixed itself. There are a lot more terms that I could go into...but mostly a portion of his colon got too full and collapsed down from the weight, causing the obstruction. When they opened him up, it worked out that they didn't need to really do much but clean out the liquid inside of his bowels. They got a liter and a half of fluid out of him.

We went back about an hour later to see him kicking the covers off and trying to put his left hand up to his mouth to tell us something. And he was hollering for us, Momma, Dad-Dad! Once we got to him, he calmed a lot. Enough to go back up to the floor and avoid the ICU altogether! When we got to the floor at about 3:30am, and he had one short seizure, which is not unexpected after an operation, and then he went to sleep.

He's been resting pretty good today, and not in too much discomfort. I don't have my camera chord up here at the hospital, but I have photos of the "before" shots of his huge belly. I can't believe how big it got!

Today is a day of resting, and maybe tomorrow too. We're so thrilled the problem seemed to have corrected itself, and hoping he can quickly wean off of the epidural, and get back to eating by his gtube before we get home...hopefully in time for Christmas.

An update...

when we came in through the ED, we suggested an obstruction, as the last time we were in that's what it was. Somewhere in the chain of "playing telephone" they ruled out metabolic, and seizures, so we went to the floor, where they called it a gastro virus, and we'll just have to wait it out. I kept on suggesting the bowel obstruction, because once he stopped vomiting (from the zofran), his stomach started stretching. He's now 73cm around...where his pants he came in wearing have a circumference of 50cm...and are loose on him.

They still didn't think it was an obstruction, as the enema didn't produce anything. So they gave him a dose of miralax.

At 3am, they thought maybe they should do an xray...which they still thought didn't show a blockage. But, rather, ileus...which is a slowing of bowels, so they were filling with air. And again....told to wait it out.

That's when the fury hit and we made sure he told his superiors as soon as they came in we wanted a consult from GI...his metabolic doctors in here...and a plan before they even started to round.

Sure enough, his nurse this morning came in and said radiology was trying to get ahold of his docs because they saw an obstruction.

Dr. Vahove came in (metabolic) and said he definitely has something blocked, but thankfully metabolically he is still within very good levels.

So, yes, I mentioned it when we came in...continued mentioning it throughout our stay so far, and really frustrated that it takes us getting on people's cases the way we had to to get some action going. Very very frustrating indeed.

Green soap...

Green soap...that stinking bacti-stat dry your hands out to cracking after washing your hands a hundred times in one day green soap. I hate that green soap. But, right now, the smell is in my nose. The crackly hands are back. We're at Children's Hospital where the Green Soap lives.

This morning we had to bring him in since he was getting sick over and over without being able to keep his medicine or food down.

We quickly got ourselves together and medicine thrown in his bag, along with his treatment letter, and off to Children's we went to the emergency department.

We made sure to call all of his doctors/specialists on our way, because it's always good to give them the heads-up that we're going to be in there, and they will be called at some point by the resident doctors who have never heard of Max's metabolic disorder, and are a little unsure about all he's got going on.

Once he was triaged, we were told it would be a few minutes while they cleaned the rooms, since they had none. An HOUR later, we were finally in the room, and a half hour after that, I was pulling out my bat-phone to get the doctors down to see him. They were on it, as Max's dr's had called over an hour prior to tell them what needed to be done as soon as we got to the ED.

When that was sorted, they came in to see Max, and ordered a load of tests. They wanted to rule out the biggies, and when the abdominal xray came back, they were able to. He just had a LOT of gas in his belly, so we vented his g-tube to let the gas out.

Because he continued to vomit, he got the anti-vomiting medicine, and admitted him.

So, we're now holding down the 8th floor.

On our way up, we ran into the social worker that helped us so much 6 years ago this time of year. She was so surprised to see us, and Max. She just looked at him and said "MAXIMILIAN!...I have never forgotten about him, or you guys.". We walked through two more doors and ran into an attending doc that came to our house last week as part of residents training program here, teaching new docs about the lives of the families who have kiddos with chronic illnesses. When he left our house last week, we said hope we don't see you soon...as we do with most of the doctors who see Max. In the way only he can he says..."What the hell happened!". He's not the attending on the floor right now, but he said he'd check in on us later.

After we got settled in, Max's neurologist came by before he headed home. He's also not on call, but when Max is in the hospital, he always checks on him. He got a quick assessment of what's going on, and since Max is not and has not had any seizures, he just talked with us for a while. It was good to catch up...and also good to not be worrying about seizures! He told us to cancel our appointment for an EEG this Friday. He doesn't want us to have to go in later in the week for that.

After he left, we stopped to eat, but needed to meet with his metabolic doctor who came in again to see how he was, and go over the plan for the night and tomorrow.

It's so good to have the doctors that know Max...and us come in even when they don't necessarily need to. It helps the other doctors because they hear how Max usually is, and who he is now compared to that. It calms the newbies nerves...they learn from some of the best about a really involved kid...and a lot of the nonsense is taken out of the equation.

He's been okay tonight. Not great...he's still throwing up about every hour. Even with the magic medicine...so we think he might actually be fighting a bug, rather than just one of his cyclical vomiting spells. It's 11:00pm and he's still not gone to sleep, so I'm about to ask about getting him something a little stronger so he can actually sleep tonight.

We'll see how he does in the morning to see if we will be starting him on any food...or keep him on IV fluids for another day. We're in no rush to get him home when he's vomiting like this. Every medicine he's on has to be kept down to work, so if he's not able to keep it down, no point in being at home, as we'll just have to come back.

I do hope we're home before the end of the week. My mom is supposed to be here, and then Abbey will get in this weekend. Then Christmas is supposed to begin. And I would indeed like for us to be home all feeling well for that!

A rough go...

Wow...I haven't posted anything new in 10 days.

Perhaps that is because it has been a wee bit stressful around here lately.

Okay, a lot bit stressful.

Max is on this crying jag lately. Not just a little bit. But, wakes up crying...goes through the day crying and throwing fits...then cries until bedtime because he's tired - no doubt from crying all day - then crashes HARD in his bed. Only to wake up again around 11:00pm and cry through the night until morning. He does have his moments of sweetness, and playfulness, but mostly we're just walking on eggshells around him, trying to not get him going.

He's not in any pain that we can figure out. He has choices on his Dynavox computer that let him tell us if/where he is hurting, and he hasn't given any conclusive suggestions that he hurts. He likes to tell me he is hurting and sick mostly during therapy and school...then he's fine. ;)

His sore gums could be bothering him...those teeth...good gracious those teeth have still not come through. September 16th he had those bad boys pulled, and still toothless. But, it looks like they want to break through any day. He's seven years old, and teething like a baby again. I don't remember much of his teething experience as a baby, as far as if it made him cry a lot. I don't think Max did a lot of crying back then. He just had a lot of seizures. We still have not seen seizures this time around, but again, they haven't broken through.

Throughout the week, he's a lot better. He has his routine, apart from his teachers being out all last week. His homebound teacher was out of town all week, and his classroom teacher needed to have emergency surgery and is still recovering. He misses school a lot, and I don't know when he'll have it this week. When he does have it, I am going to try to record it so we can watch the videos through out the holiday break of two weeks without school.

It's exhausting and frustrating for all of us to not be able to communicate with him. I thought earlier this week, if I got a magic wish, to fix any one thing about Max, I would make it so he could talk where we understand it. Isn't that nuts? Maybe it's just what we're struggling with right now. But, I would like so very much to know what he's trying to tell us. And if we're getting anything right, or just bumbling our way through it, like it feels most of the time anymore.

But, there is no magic wish. And, there is no easy fix. We're just trying to get through this rough patch like any other. Hoping to get in soon to his pediatrician, who is hoping to set up an appointment with a behavioural psychologist to help us navigate these fits he's having. Because, we do think it's mostly behavioural. He's not getting something he's wanting...and he's terribly frustrated that we don't understand what he wants. We are terribly frustrated too.

I suppose I'll go for now. I have about an hour left of quiet before he wakes and wants either me or Steve in his bed in order for him to sleep. Really hoping for an easier week. Because, while he's cute as he can be snuggling with George in the middle of the day, I would think he'd be happier too if we could just figure out what's going on inside that precious head of his.

To Make A Wish...

We got the official word today...



When summer rolls around, and the sniffles and coughs have subsided, we will take our boy on his wish trip to San Francisco.

He has wished to hear a performance by the San Francisco Opera, go on a boat with a fog horn, see sea lions, go to the Monterey Bay Aquarium, and visit the ocean as much as he can.

We had initially thought of going to Hawaii, but once we started thinking about all the things Max loves, that was close enough to travel with him, we knew his wish trip needed to be in San Francisco. And, since this trip is all about him, and his loves, that's what we requested for him.

There will always be Hawaii for us to enjoy another time. But, we are excited to go as a family on such a special trip together. And to take Max on a trip that will be catered to him and will be made accessible for him to enjoy all the things he loves in San Francisco.

Happy Extubation Day!!!

December 1st the world over this year is getting attention for other things. World Aids Day, and the start of Hanukkah, to name a couple. But, in our house, it is the day the lion roared. The day our Max got up the strength to show us all he wanted to live. And in doing, coughed out the ventilation tube that was supplying his breaths for a month. The day of surgery to give him a breathing tube out of his neck, a tracheotomy, he coughed the tube out, and avoided it.

So, today, we say HAPPY EXTUBATION DAY!!!!!!!! Now, to celebrate by letting Max chat with his friends over Skype...then speech therapy...then school. Three things I never would have imagined would be happening 6 years ago.



~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

The day the lion roared.

December 1, 2004

I woke up with a new nurse leaning down beside me asking if this was Max's medicine he got now. My eyes focused and saw it was Max's emergency seizure medicine. “ No, put that back...he doesn't need that. You can go get his medicine out of the fridge, I will give it all to him." I don't like new nurses. We have our favorites. The ones who know Max. The others we tolerate. This one was rubbing me the wrong way. I'm sure I was just edgy from the activity of the day.

The doctors had all rounded off for the month...a whole new crew. Just as we are headed into the hardest part of our life all new people to deal with. The new attending came in to introduce herself and get the skinny on Max. She told me it looked like we were still on the schedule for surgery, but she didn't know when. I was sitting resting while Max slept. I still was in a fog about the day's events. Steve had to be working so he was at home. I sat and read a bit, watched some tv...just tried to get my mind off of it.

The nurse came in and told me he has been bumped from the schedule today, so they will take him to surgery tomorrow. For crying out LOUD!!!! Get it over with already! I had a lousy night's sleep and since Max was sleeping I decided to go back to sleep. No big happenings today. I laid down and tried to get to sleep. But Max was coughing a lot.

I called the nurse in and said maybe he needed some suctioning. She suctioned and said she was going to get him some tylenol just to help calm him down. I've never seen him coughing so hard. He was kicking his legs up in the air. He would lift his head up( a big deal for him) and would cough and cough and tears would come out and slobber all around. What in the world was going on. I started to get a little worried. The nurse decided to go ahead and tether his arms because he was reaching for the tube a lot. I was instant messaging Steve while this was all going on.

He started a big coughing fit...then the last cough...hhhiiiiiiiSSSSSSSSSSSS What was that noise??? Oh my gosh...he got that tube out. He COUGHED IT OUT!!!! The nurse FREAKED!!!!! She said some curse words...not the best attribute for a nurse at the Children's Hospital. I told her it was fine...he can breathe on his own. He is fine. I told Steve I had to go...he just got the tube out...shut the computer.

She still hit the emergency button that got all of the nurses and doctors running into our room. I grabbed my cell phone. I knew the drill. They were going to knock him out and throw that tube right down his throat again. I told the head nurse I would be right outside waiting. I tried to call Steve but my cell phone battery died. He was also freaking out. I just kept laughing. I couldn't believe Max coughed that tube out. A good three inches of tube he coughed out. Max is such a strong kid!

A nurse came out to the hall to get me. When I got into the room it was full of people. Residents and Interns, nurses and respiratory techs. “Are you mom?“hi I'm Anjali...I'm the new chief resident on this month.“
"Hi Anjali...we were going to name a baby girl Anjali...what's going on?“
I was trying to see Max. There were so many people around him. That's when she said,
"before this hospitalization, he could breathe fine on his own?“
"Yes of course.“
"And why are we doing the tracheostomy?“
"They couldn't get him off of the vent.“

That's when I got a view of Max. He was fighting with the respiratory tech trying to put oxygen on his nose. Then I heard a cry...no tube...what's going on???

Anjali said, "Well...I think he's breathing fine right now. Let's watch him on just some oxygen for a while and check his levels to see how is doing before we intubate again. Consider it one last day of freedom with him.“

"Ummm...okay...thank you...“

I was stunned. I felt like we had just pulled one over on them! The nurse immediately got a blood oxygen level to measure his carbon dioxide and was given orders to do it every hour to see if they went up. While she was doing this I called Steve...filled him in. He was already on his way up to the hospital.
The nurse finished and I picked him up. No tube...just me and Max. He had to be calm...he needed me to hold him.

As soon as I sat down he went to sleep. Deep deep sleep. Big breaths sleep. I did cry...just a bit. I was so happy just for today I got to hold him one more time without that tube. Then I prayed..."God, you gave him the strength to cough it out...give him the strength to keep it out!“

Steve got there and was amazed. Max was just quietly sleeping. Steve wanted to hold him and give my arms a rest. I had been holding him for a good hour at this point. They checked his levels...they went down. Then another hour went by and they went down again. "Okay, we need to turn this oxygen down though...he is getting too much.“

We were stunned...STUNNED!!!!!! Did this really happen? All of this worry and turmoil and the little turkey coughed it out the day of surgery?

We held Max tight all day. I called the grandma's and had them pass the word around. What a big boy we had!

Around 5:00pm the ENT surgeon came in to tell us we were on for tomorrow. The lights were lowered because Max was sleeping. We exchanged niceties and she said..."WHY IS HE OFF THE VENT?“

"He coughed it out this morning.“

"He pulled it out?“

"No, he COUGHED it out and they just put oxygen on him and he is doing great...his cO2 is lower than it has been this whole hospitalization.“

"I'm not performing a trach on a kid who can cough a tube out...he looks way too good to need a tracheostomy.“

She talked to the doctors and told me she would see me again if she needed to, but it looked like Max didn't want to have a trach tube.

The end of the day they moved us to another room. It looked like Max was pretty stabile so they were going to put him with a nurse who could have two kids that night. It was Tammy...the first night nurse we had back in March. She came in and came over to give us a hug. She knew surgery was today. She looked at Max and said...where's the machine? What happened? Why is he just on O2? We filled her in and she cried. She was so happy. She told us later that night she has rarely gotten so attached to a kid like she has with Max.

Dr. L. came down to see how surgery went. He came in and looked at the machine that was off and looked at Max. He smiled and looked at us and waited for the story. We told him...he just nodded and said...we knew he could do it...WAY TO GO MAX!!!!!