A Visit from Hope

Plans for our March trip to Hopkins are already starting to come together, appointments are being confirmed, test results are being FedEx'd around (yes, I finally got the discs from PCH!), and insurance companies are being notified. This leaves us with the logistics of travel plans. These plans are probably the toughest part of our trips to sort out because after four years of "back and forths" to Baltimore the bank and credit cards have run dry, but hope has not!

Last week we had a visit from our friends at Hope Gives Ministries, Max was as always happy to entertain his visitors and we were thrilled to hear that they would work with us on travel plans. What a Christmas blessing! I don't know if I can adequately express just what this support means to us because without it I don't know if we could provide Max with the medical care he needs and deserves, thank you so much Michelle, Kelly and Joni!

Max with Michelle and Joni

Max and Kelly

'Twas the Night Before Christmas....

...and all through the house not a creature was stirring.....except for me because there is way too much to do before the short people awaken from their slumber expecting to see that a jolly old elf and his eight tiny reindeer have paid them a visit....

.......so dash away, dash away I must but not before leaving a few pics of Max and his entourage getting into the Holiday spirit!

Max unwinding after a wild 4th Grade Christmas Party!

I know, I know....I'm too cute for my hat!

One last chat with the "Boss" before the BIG night!

Merry Christmas to all and to all a good night!!

And so the Nightmare Continues

I spent a lot of time today trying to figure out how to write this post. I am beginning to feel like all I can share is “doom and gloom”. I’ve turned into “Negative Nelly” and it hurts that I haven’t been able to post much good news lately but there just hasn’t been much of it to post.

We had our follow-up appointment yesterday with the general surgeon we have used in the past. I have to admit that this guy has never been Max’s biggest fan, from birth it has been as if he isn’t happy if he’s not giving us some horrific diagnosis/prognosis for Max. That first year when we were inpatient, although it was his partner that was Max’s primary care provider, this doctor insisted on testing Max for several horrendous disorders. Often not once, not twice, but three times. Each time he almost seemed disappointed when the test results came back “negative”. He was part of the team of doctors that used to tell us, “It’s just Max” because they didn’t really know what Max had and they didn’t want to admit their own medical ignorance. Anyway some things never change…..

After a ten second conversation with me and without even acknowledging Max’s presence in the room, he ran off to read the CAT scan that had been done while Max was in the hospital last week. It seemed as if the exam room door had barely shut when the medical student was sent to summon me. There was the doctor in front of a computer screen shaking his head, “Do you know what this is?” he nearly screamed at me. Before I could answer he said, “This is pseudo-obstruction of his bowels and it’s a miracle his intestines even work. Although it’s only a matter of time before they don’t work anymore and he’ll be completely dependent on IV nutrition.” He continued abruptly, “...and there’s nothing we can do for this…enjoy this time because it’s only going to get worse.” All of this without taking a breath or noticing that I was about to faint, he probably didn’t care because he was too focused on delivering another horrific diagnosis – after all it’s been nine years and he needed to get another one in.

I am rarely, if ever speechless but I have to tell you this time I was. Max stood beside me and had heard everything so I was forcing myself to hold it together but I just kept imaging Max no longer being able to eat and it took everything I had in me to not scream or rage at this doctor. In the end it didn’t really matter, he was already out of the room with his entourage complaining to them about how long this dictation would take!
Today is a new day and I’ve decided that this is just another “fire drill” sparked by one man’s desire to see Max as nothing more than a really bad train wreck. Oddly enough I am doing better than Michele is, I usually rely on him to hold me up – this time we’ve switched roles. I am convinced that if Max had always had this problem, as this surgeon insists he knew all along (strange this is the first time I’ve heard it from his mouth…), some other doctor with more skill and more knowledge would have already picked up on it. I’ll start sending the discs out to Hopkins and wait to see what they say before I truly panic. That is I’ll send them the disc if I can EVER get PCH to produce one!

At this point I am praying for a respite because I am seriously concerned about us and our stress level. We need a bit of peace and tranquility, at least through the end of the year. 2011, here we come! Certainly it has to get better!

It's begining to feel a lot like Christmas....

This weekend, far away from hospitals and doctors, we finally got to have a bit of Christmas fun. On Saturday we went to two Holiday parties which meant two visits to Santa! The first party was at the home of long time supporters of "Max's Market" who give to the kids at PCH so generously each year. The other was an annual super fun event that another "heart" family holds for children with heart defects and many, many other ailments.

These photos are from our first Santa visit, enjoy!

Let's talk about what I'm expecting of you this year, and yes I've been super good all year so there's no need for you to check with my mom......

How can you possibly say "no" to that smile?

You're never too old to believe in Santa!

Quiet Week

It’s been a very quiet week. Max is back to school and finally caught up with all the work he missed. I don’t know who’s more exhausted him or us from it all but I do know that it was priceless this morning watching him bound into his classroom so excited to share his social studies project, an Indian dwelling he made with his dad. By “made with” I mean it was done while Max had IVs in both hands so you can just imagine the help he needed from Michele. I really should have taken a picture because it was so comical to watch the whole construction process. In fact, I was convinced that Max’s IVs were going to be super-glued to his wrists but somehow the nurses were able to remove them.

Max seems to be on the mend, his abdomen only hurts if we press on it so the pain is obviously subsiding. He’s even walking upright again! Unfortunately, we did hear from Max’s surgeon this morning and because we were seen by his partner last weekend and not him he wants to see Max next week to be sure things are resolving. Hopefully he doesn’t find something he wants to fix. He’s a good surgeon but he does love to find things to fix and none of us are particularly interested in giving him any business.

On the Hopkins front the cardiology group has been reviewing the last three years of scans they have done on Max and they find no reason to be concerned about an aortic aneurysm. Just another false alarm in what seems to be nine years of fire drills which, thankfully, seldom amount to much. It never ceases to amaze me how much stress we can build up over nothing, talk about your highs and lows! In the mean time, they have also scheduled all our testing and appointments around Max’s eye surgery so that we can be sure to fit everything in while we’re in Baltimore in March. It seems like we just got home and we’re already planning our next trip!

I’m hoping for the calm to continue this weekend so that we can actually start to get Christmas rolling at the Marangella Ranch. I swear you would never know its Christmas by looking around our place. We’ve given up on the idea of decorating the yard (very much to Max’s chagrin) but I would like to get up a few decorations in the house if for no other reason than to lift everyone’s spirits a bit!

Have a great weekend all!

Fire Drill

We’re home…again. Fingers crossed we’ll stay here because I’m pretty sure none of us could stand another minute in a hospital.

We were packed and ready to go yesterday when the pediatrician approached us with a look of horror on her face, this is never a good sign but when a doctor actually sits down next to you before talking you are in BIG trouble. In her hand was a copy of the final reading of Max’s CAT scan (evidently everybody and their brother had read it except for the pediatric radiologist who has the last word) with certain sections highlighted in yellow. Also not a very good sign.

It seems that Max’s abdominal aorta is dilated which can be a life threatening situation. Once I started breathing again I handed her my cell phone with the number of Max’s cardiac surgeon in Baltimore. Although she was leery of calling a doctor on a Sunday I told her that this was Max and that’s what doctors' cell phone numbers are for. When she got off the phone she remarked that Dr. Vricella had been extremely polite and expressed no concern with the numbers on the report. He told her they would do absolutely nothing for an aneurysm of the dimension reported on Max’s scan and that they would continue to monitor it every six months when we go to Hopkins. For all he knew Max’s aorta may have always measured larger than usual, without looking at previous scans he could not know one way or the other.

Because I no longer believed anything I heard from the PCH doctors and because I was clearly having a breakdown, I handed Michele my phone and told him to call the doctor himself because I wanted to hear the story from the ‘horse’s mouth’. During the conversation the surgeon did confirm to Michele that he was unimpressed with the measurements and the whole mess will be handled at Hopkins in March and May. He also confirmed that he would be doing the valve surgery right after school lets out for the summer.

This leads us to a couple of conclusions:

1. We always seem able to diagnose our son before the doctors can. We have been telling everyone to check the aorta since this whole thing started. Three hospitals and several doctors could not see what we knew by instinct, not medical training, was there. How could this scan pass through so many hands and no one detected an aortic aneurysm? Very scary.
2. As long as it is possible Max will receive all his care at Hopkins no matter which of my organs I have to sell on the black market to pay for it. Pediatric medical care in Phoenix is just too unreliable.

Another day, another fire drill!!

Saturday Evening Post

Here we sit for what is probably the billionth time (exaggeration) in a Hospital on a Saturday night...and no one believes me when I say that I have NO social life!

So far today we've had a ton of blood work, x-rays, and another CAT scan and we're still at 'we don't know'. Why must Max be so difficult to figure out? This morning seemed like a fire drill, everything was such an emergency. The pediatrician led us to believe we'd be in the OR at any minute and thus she was freaking out about some of Max's blood work. She felt there were serious issues with his liver (why is everyone so crazy about his liver if he just had a clean biopsy?) and was afraid of what this would mean for his clotting abilities after surgery. Should I even bother saying that I was completely freaked out at this point?

The surgical service seems to be much, much calmer about the need to cut. Obviously this is a very good thing. In fact, we are waiting for the surgeon to come talk to us about Max's abdominal scan although her resident already talked to us and thought it looked 'unremarkable'. We'll see what his boss has to say when she gets here....

Please, please send Max good thoughts and prayers he is having an EXTREMELY rough time with all of this. As hard as it is for us to see him so uncomfortable and scared I keep having to remind myself that it's nothing compared to what he is enduring. I'll keep everyone updated once we know more.

Here We Are...Again

At 2 AM our hopes of being discharged home from the ER were dashed, we were officially admitted to a lovely double room (dripping with sarcasm) in the back corner of the third floor of Phoenix Children's. Max was obviously not happy about staying but became infuriated about having to share a room and told the nurse, "Take me back to the other room where there was a TV and I could do what I want without being disturbed. I need my privacy." It's been a very long time since Max has had to share a hospital room....

Right now the working theory is that Max has a hernia/obstructed bowel. He's not allowed to eat (another sore point) and they're running some more tests to be certain, the surgeon has also been called just in case......This super SUCKS!!!

Hospital #4

We decided to spread the love a little bit, we're now in Hospital number four -- Phoenix Children's -- waiting for the docs to decide what's next......

Quick Update

We are home….and thrilled to be here! The only part of being home that stinks is that Max is no better than he was earlier in the week, in fact we were only “kicked to the curb” because the doctor’s just didn’t know what the problem was and because they didn’t want to admit that they didn’t know they did two things:

1. They discharged us. YAY!!
2. They suggested that Max was “milking” the situation so as to play video games and skip school. I don’t know that I have EVER been so offended in all my life but my best stupefied answer was, “Really? That’s the best you’ve got? Considering the kid has video games at home and is sitting in bed doing his school work I find it hard to see how your “medical” opinion holds water.” We were summarily discharged; evidently they don’t like sarcastic mothers!

So as of now we have two very frustrated parents because we’re running out of doctors to take Max to and one very sad little boy because he just feels so miserable. By the way, the pain is so bad that he can’t play video games for too long without getting tired so he’s doing his homework instead….maybe I’ll videotape it and send it to the medical genius who diagnosed him with a bad case of “milking it”.