HEART TEST PHOTOS

What a good sport I am! I'm all hooked up and yet I still manage a lil' smile for mommy! The not so fun part is that I have to wear all of this for 24 hours and mom has yet one more machine to carry around with me! But at least it gets me out of "tummy time" for a day!

Play with my wires and tubes...or my toys? Hmmm...tough choice.

Hey mommy, what do these numbers mean again?

MORE HEART TESTS

While sleeping last night Max's heart was dropping lower than ever before...and then today while awake, it dropped low again. At the time, my friend Jen (who is a nurse) was here and we were both like, hmmm...what in the world is going on here? His O2 sats remained stable and he seemed ok, so I wasn't freaking out but it was a little confusing and concerning.

So my PCP called Max's cardiologist so they could put their heads together. They are not overly worried, but since he did have surgery less than six months ago, they want to ensure nothing has happened. Tomorrow Max will be set up with a 24 hour monitoring device that will record his heart rate. I will write every five minutes about his current activity and his vitals. He did this several times in the hospital and it is not very fun...difficult to keep all the leads on.

Actually my dog, Lucy, had to do this before her heart surgery too. For those of you who didn't know Lucy, she was my first beloved dog I adopted. Within weeks of adopting her (and immediately falling head over heels in love with her!!!), she was run over and lost a leg in the accident. Then a year later she and her dog walker (working long hours on Capitol Hill at the time) were attacked by two dogs. Lucy started having a doggy version of a heart attack...and that began a very long, heartbreaking and expensive journey with Miss Lucy. She was diagnosed with a fairly serious heart condition and for a while we controlled it with medication. But as the months went by, it was apparent that she needed more medical intervention. We were constantly at the dog cardiologist and then finally she had to have surgery in Cincinnati, Ohio - the first place in the nation to offer this latest surgery. Prior to that they performed the surgery in France, and I actually did think about taking her there...but her doctor think it was absolutely necessary yet.

Unfortunately she passed away as soon as they were prepping her with anesthesia. It seriously seems like yesterday when it happened, I remember each and every detail. I still have yet to part with her ashes. For those of you dog lovers, you know what I am talking about...and the rest of you are probably thinking I'm nuts! Well, you're right I am a little nutty about my dogs...they are fabulous creatures!

Miss Lucy was an incredibly sweet, loving and absolutely spoiled (well deserving) princess. She certainly helped to prepare me for dealing with all of Max's issues. And actually now that I think about it, perhaps she was training me for this divorce. I took the owner of the dogs who attacked Lucy to court...it was my first experience with the court system.

ANYWAY, I digress with the story about Lucy...but always will use an excuse to talk about her!!! :) Hopefully tomorrow goes ok and Max is not too upset with this process.

* Oh and YAY, I actually slept for three hours in a row and then another two hours later in the night...nearly five solid hours of sleep. First time in weeks!!! YAY! I was sooo excited! :) I am realizing that there is no point in going to bed before midnight because he seems to have the most oxygen and heart issues between 9 - 12, so I tend to spend most of that time running in and out of his room ensuring all is well.

Here's hoping for more sleep tonight!!! And a successful heart monitor test tomorrow!!!

BEAUTIFUL PHOTOS!

The Rixmann family, who I met at Children's, came to visit me and Mighty Max this weekend...so wonderful to see them! Their amazing, talented and beautiful son, Timmy, passed away after a difficult battle with cancer. His room was right next to Max's during part of Max's ICU stay. And they were at his bedside 24/7, so we definitely saw a lot of each other. His parents are terrific and brought me much comfort and spiritual support during our hospital stay and even still today! And their fabulous children always made me smile at the hospital...full of such joy, craziness, and spirit!

Leah is starting a photography business and snapped a few photos of my very favorite subject, Mighty Maxwell, during their visit. It was such a beautiful day, so while their kids enjoyed the playground behind my house (how incredibly convenient is that???), we did a mini photo shoot. ENJOY!!! And thanks again Leah...I love these photos! :)

Oh and I have to share how funny it was when Leah first went to take a photo of Maxwell. He immediately smiled for her...she started laughing and said you're right, he is a ham! Very funny! He definitely loves to have his picture taken! And rightly so, he is GORGEOUS! :)

MAX AND SHAKESPEARE

Hey everyone! Look at me and my buddy Shakespeare! I have decided we are going to be the best of friends...I love grabbing his hair and he loves kissing me!!! Mom thinks we are adorable together! :)

Me and my buddy!

CHEESE! Time to smile...Mom is taking a picture!

Mommy, look what I got! Shakespeare's tail!!! :)

ANOTHER DAY, ANOTHER DOCTOR'S APPOINTMENT!

It seems like we have been living at the doctor's office these past few weeks. Literally we are there almost every other day! Yikes! Max has a bug and it causing some random complications, which is making him quite irritable and uncomfortable. Still having major painful gas, really constipated, congested and coughing terribly in the morning and now he has developed a rash over this entire back and chest due to the virus. Then two days ago, he started experiencing major bradycardic episodes for hours at a time. They would always self resolve but it always makes me wonder what is going on in that lil' body of his. Then when he wasn't having the heart issue, his O2 sats would drop fairly low...again they would self resolve, but he is requiring more oxygen than he has in the past month. So the doctor definitely thought it would be a good idea to see him...AGAIN. Additionally, with the two CHARGErs passing away this weekend, I (along with many other CHARGE moms) am quite paranoid about the health of my fragile baby.

What is the most frustrating to me is how uncomfortable Max is with this virus. He will wake up and just whimper terribly or right in the middle of playtime, he will suddenly get very sad and start crying. This is just not typical Maxwell behavior.

So the doctor didn't have any big answers, he basically just wanted to check him and out and we are going to give Max a few more days before we get too worried and I am supposed to keep a close eye on his heart and O2 sats.

The biggest disappointment of the visit is that Maxwell has LOST more weight. Not gained...not maintained...but lost!!! WHAT IS GOING ON MIGHTY MAX??? Last visit he had lost four ounces and this visit he lost another six. My heart seriously broke when we weighed him. I asked the nurse to do it again and again...I was certain that the scale was broken. They are definitely concerned with this because we actually just increased his feeds again to a pretty high number for a lil' guy like Maxwell. But apparently he burns through his calories! Maybe it's all the OT/PT work I make him do...or perhaps its the calorie burning "happy dance" he now does for me. :) I'll have to post about that sometime...it's absolutely adorable!!! So of course I do everything I can to encourage him to do the dance over and over and over again!!!

So we are not sure what is going on. The only answer the doctor has is that the virus is causing him to burn a lot of calories to heal his body. We are planning another weigh in early next week and hopefully there is progress.

The good news is that we got the EEG results back and as I predicted...NORMAL. The doctor said that doesn't necessarily rule out seizures, and we can do further tests. However, right now I feel comfortable with those results and Max has been doing less and less of the "twitching."

I am HOPING, HOPING, HOPING that tonight Max maintains his sats and heart rate and that he is fairly comfortable. (I have gotten up literally 30 times while writing this post to check on him because his monitor is going off like crazy...fortunately each time he is bringing the sats right back up.) Mommy needs some sleep BIG TIME! We are going on several nights with little sleep and it starts to wear on you after a while. I think I am done with trying to do this on my own. I am researching different ways to get help during the nights.

However, I am worried about the costs because Max's father is refusing to pay for any medical expenses unless ordered by the court. Our divorce hearing is on June 7th and we should have a lot more answers at that time. (Vic is even refusing to pay his share of the expense to get to/from Max's millions of doctor's appointments locally and in Seattle....which adds up to hundreds of dollars every month and it's coming entirely out of my pocket.) If the judge doesn't rule with me, I'm not sure I can afford to pay for help. But I also cannot afford to get sick (my doctor was amazed that I am still healthy after these past few weeks!) and not be able to take care of Maxwell!!! Yikes!

Hopefully Max fixes this situation himself and feels better soon! But even when he is feeling good, he still has some trouble maintaining his oxygen and he requires medications, constant feeds, position changes, and oximeter probe changes through the night.

So we'll see...tomorrow is another day! :) Even if tonight is difficult, hopefully I will get a Maxwell "happy dance" in the morning and that will make me smile!!! :)

*If Max continues to desat, I won't be going to bed anytime soon so I will post some new photos! He is as gorgeous as ever!!! :)

TERRIBLY SAD WEEKEND

Two CHARGE babies, Ryoto and Rebekah, passed away this weekend due to complications from heart surgery...the same surgery that Maxwell had performed in November. Our CHARGE community is in deep mourning over these terrible losses.

It was particularly difficult learning of Ryoto. I absolutely lost it when I read the email this morning and it has consumed my thoughts today. He and Max were born within weeks of each other at Swedish Hospital and then tranferred to Children's.

Everyone was amazed that there were two CHARGE kiddos at Children's at the same time. They actually became a trio when Evan joined us a few months later...which surprised everyone. It's a pretty rare disorder.

Ryoto and his parents were the first CHARGE family that I had met and they were incredibly supportive of me during some very trying days with Maxwell. They often brought presents and cards to Maxwell celebrating his successes or comforting me in scary times. In Japan, they celebrate 100 Days of Life, so that day was particularly greeted with much enthusiasm from Ryoto's family and me too...another excuse for me to eat cake! Ryoto's mom, Akiko, and his older brother even came to the hospital on Max's discharge day to wish us well on our send off.

And now this loving, wonderful family must say goodbye to their sweet angel, Ryoto. I am so sad for his parents...and his adorable brother Souma...will he even remember his little brother? How will he handle all of this?

With Max and Ryoto having such similar beginnings, losing him reminds me of how easily we could have lost my lil' baby too. I feel so connected to this loss and my heart is aching. Life is incredibly fragile and this weekend's shocking news reminded me too harshly of this reality.

Please keep the families of Ryoto and Rebekah in your prayers.