MORE FUN PHOTOS!!!

This is me coming home from the hospital...my very first car ride! I have been transported by helicopter and by ambulance...but never by a car. Pretty exciting! My mom held my hand almost the whole time, which was very reassuring! :)

TUMMY TIME...not again!!! My mom keeps encouraging me to strengthen my neck muscles by putting me in a variety of positions but quite frankly (as you can see by the look on my face), I don't really like "tummy time." But apparently this is really important so I will continue to try. :)

Yummy, these fingers taste sooo good! (Developmentally this is a great sign that I am playing with my fingers so much...so my mom is very excited about this! All I care about though is that finger sucking is fun!!!)

How sweet and cuddly am I? This is me cozying up with my mommy on Christmas morning. What a way to start my day!!!

I absolutely adore my Uncle Jim!!! He is planning all kinds of exciting outdoor adventures for us when I get bigger...hiking, kayaking, climbing...wow, lots of fun awaits us!!! I guess first I need to worry about getting rid of all my tubes and wires! :)

Speaking of FUN adventures, look at me! I am going on my very first outdoors walk! (And how ADORABLE am I in my hat!?!) There was quite a lot of work to get me "mobile" (Mom had to bring the O2 tank, monitors, etc. with us) but we all had so much fun! Thanks everyone for making this happen!

Hope you enjoyed some highlights of my past few days...we have been keeping busy! Today I have my first doctor's visit with my PCP...just like a "normal" baby. Well, except that my mom will be bringing my HUGE medical notebook, xrays, the works...but one good thing is that we don't have to wait. We are not "allowed" to wait with all the other children...because of germs, so I get right in! I guess sometimes my "fragility" can work FOR us. :) We gotta think positive!

Have a great day everyone! We plan to! Well, we didn't have a nurse last night and I kept my mommy busy throughout the night so hopefully she keeps up her good spirits, but I have a feeling she is getting pretty exhausted these days...but fortunately I am super cute and that seems to make up for it. I just throw her my gorgeous smile and she lights up and forgets her sleepless nights!!! :) Off to smile for mom and keep her happy!!! She seems to enjoy me A LOT!!!

ME & MY NEW BUDS

How adorable am I new with my new buddies, Barney & Shakespeare!?! We are becoming fast friends and my mom is overwhelmed with joy every time we are together! She was sooo excited for all of us to meet!

Barney (the white dog on the left) is ok with me being here, but leaves me alone for the most part. Actually I think this is one of the only times he has acknowledged my presence! Perhaps he is a little sad that I am taking my mommy's attention away from him...but give him time and I'm sure he will soon adore me!

Today my mommy is taking him to the doctor's for a biopsy of his nose. The doc thinks he has skin cancer or canine lupus. My mommy is very worried...between you and me though, I think he is just trying to get the attention away from me!!! Nice try dog. But just in case, please do keep Barney in your prayers. My mom loves him very, very much and I am sure I will too.

Shakespeare (the brown dog on the right) is another story. He already adores me! Or perhaps he knows to get my mom's attention, he has to be next to me! Either way, we are having fun. And yes, that is his tongue in the picture. He loves to kiss me...my mommy tries to keep that to a minimum. But I don't mind it! We are already great buddies!

I'll keep you posted on Barney's nose...right now I must run and prepare for my newspaper interview. Mom is going to get me super cute for the photos! That shouldn't take long...doesn't she know it comes naturally for me!?!

ABSOLUTELY ADORABLE CHRISTMAS PHOTOS!

This is me in my Christmas stocking made with loving care by my Grammy Mary. She stitched most of it while she visited my mommy on bedrest in the hospital. Thanks Grammy...don't I look adorable in your work of art?

Again, could I be ANY cuter??? (Mommy had an enlargement of this photo on my hospital door...along with MANY other signs...my mom LOVED to get me extra attention!!! Everyone said it made them smile!!!)

Hmmm....I wonder if Mommy will stop taking pictures anytime soon?

This beautiful white blanket was a gift from my sweet friend, Emma.

CHRISTMAS MESSAGE FROM MAX

MERRY CHRISTMAS EVERYONE!!! My mommy and I are wishing everyone a holiday season of joy, peace and love!

I am thrilled to be celebrating my first Christmas...and at home! WOW! How wonderful is that!?!?

I didn't bother to go shopping for my mommy because I think I am about the best gift she could ever receive!!! (Hopefully she feels the same when I am an ornery teenager!)

But boy, did you all ever go shopping!!! My living room is filled with gifts from all of you...thank you, thank you!!! I am very excited to see all the fun toys my family and friends have sent to me...wow, how generous and thoughtful of everyone! Thank you, thank you, thank you!!! :) Mom says everyone has been absolutely amazing and your prayers have made the difference in my healing. THANKS!!! I still have a way to go, so keep up the prayers if you don't mind!

Love and warm holiday greetings to all of you!
MIGHTY MAX

P.S. Oh and by the way, I will warn you....my mom has literally not put down the camera since my homecoming. So watch out, if she starts putting the pictures up on my blog, you might be a bit overwhelmed...I'll try and keep her posting to a minimum. :)

MORE TV COVERAGE

Yet another Seattle TV station came to capture Max's miraculous story last night...and the newspaper is doing a feature next week! AND one of Max's fans thinks the whole story (from the tumultous divorce earlier this year to Max's genetic disorder to finally coming home) would be perfect for Dr. Phil...so she is contacting him to pitch the story. (I love Dr. Phil, so I think that would be great!!!)

My thoughts are the more we can publicize children with special needs, the better. I want more people to understand what these wonderful and challenged children, like Maxwell, must endure and the incredible lessons they can teach us. The world needs to be more accepting, more loving and more willing to help do whatever possible to make their lives the best they can be. Ok, I'll get off my soap box for now, but just know that you haven't heard the last from me on this issue. Max and I are determined to help the special needs community receive more support...emotionally, mentally, financially, and physically.

I have emphasized to the newspaper that I would rather not focus the entire feature on Max's homecoming (which is of course quite fun but not necessary) but more on CHARGE, Children's Hospital and the special needs community and what we can all do to help. Hopefully the more we talk, the more people will listen.

Below is the link to last night's coverage...enjoy!

'I Got This Little Miracle'
http://www.komotv.com/news/story.asp?id=40941

SOME "LOGISTICAL" FRUSTRATIONS

EQUIPMENT PROBLEMS
I was particularly grateful for our amazing homecoming celebration because we had quite a frustrating day (and night!!!) dealing with the equipment issue. The company gave me little to no training and I had to keep pushing them to actually help set us up. Then on the way home, I am calling them reminding them over and over again that they didn't give us enough oxygen to last the afternoon and we would run out if they didn't meet us at home immediately. Then they did drop off tanks but each only last for hours...so in the middle of the night last night I am trying to change a tank for the first time...Max is having a desat...it was a little scary to say the least. I kept thinking, oh my gosh, what happens if I don't figure this out...am I really going to have to call 911 the very first night I am home???

INSURANCE BATTLE
On that issue, we are struggling because insurance is now denying home nurses beyond the "allowed" week, which is absolutely ridiculous. As the only parent involved in Max's care, that means I have to be at his bedside 24/7. Did that last night and it was quite exhausting already! And if I get sick (which I feel like I am about to), then what do we do? So the hospital and nursing agency are working together to fight the insurance. The insurance company is calling our bluff about having to be in the hospital if we don't have nursing care...and insisting that is where we should be if we cannot manage his care at home. Ridiculous! It costs $5000 a day to be in the hospital and less than $500 for care at home. We have quite a battle ahead of us!

But most importantly, we survived our first night at home. It's quite difficult in the middle of the night to be drawing out accurate dosages of multiple meds...I must have double, tripled and quadruple checked (Max was probably like, hey lady, gimme my meds!!!) and verifying the correct dosages (quite a laundry list of meds...the pharmacy even was surprised!).

WOW, WHAT A HOMECOMING!

Yesterday was a huge day from start to finish! The morning was absolutely crazy busy dealing with faulty equipment (VERY frustrating!), Max's very long of prescriptions, preparing the equipment for the long ride home, etc. and just basically wrapping up Max's six month stay at Children's. Nurses, doctors and patient's families from around the hospital were all dropping by to give their last "congratulations" to Maxwell! It was so heartwarming to see how many lives Max has touched.

THEN we arrive home and WOW, our hearts were once again warmed!!! WHAT A HOMECOMING! My biggest thanks to everyone who participated! I am still overwhelmed! If Max only knew how wonderful his fan club was, he would be sooo impressed!!!

For those of you not in the area, my sister and brother in law had sent the word out to everyone that we were arriving home yesterday afternoon. So when we drove up, there was a huge banner hanging over a main road in town declaring "WELCOME HOME MAX!" And then...we turn on to our street and there was a huge screaming crowd of people with "Welcome Home, We Love You Max" signs!

Then the TV crew came over (they drove from Seattle and had been waiting for hours) to the house and we did another interview there.

It was absolutely crazy, overwhelming and quite simply AMAZING! To see all of these people standing out for hours in the cold rain waiting to greet you and celebrate your son's homecoming....WOW, thank you everyone. You certainly made our day very, very, very special!!! It was absolutely perfect! THANK YOU!!! :) Your love and support these past six months has helped soooo much!

Graduation Day is Finally Here!!!

Tomorrow is Maxwell's big day...he is FINALLY coming home! (Thursday will be his 6 month birthday...finally we get to celebrate a birthday at home! But wow, what a reminder...we have spent the first SIX months of Max's life in the hospital...yikes!)

We are beyond thrilled to be coming home...and yes, a little nervous. While I have been very involved with Max's care, there still was so much more to learn! AND all new equipment...that is the tricky part!

Per my request, I have been meeting endlessly with each of the specialists just to make certain we are all on the same page. And of course, my anal retentive personality has me charting out his medicines and procedures for when we are at home...making up charts and check off sheets, etc. for me and the home nurses. I am doing everything I can to make this transition as smooth as possible. I have heard from every parent who has been through this that it is a VERY difficult transition. Here at the hospital you have a team of supportive nurses and doctors encouraging you, cheerleading your child and serving as a crucial back up when you need help. (It is sooo funny walking around the hospital right now, because there is such a happy buzz about Max's big day...I have definitely been here too long when I have made this many friends!!! They just adore sweet Maxwell!) So while I will miss that support, I think being in the comfort of our own home on our own schedule with family and friends (and my two wonderful pups!) around will hopefully make up for that.

Please keep us in your prayers tomorrow as we make the journey up north. The feeling of walking in my home with Maxwell in my arms is beyond words. It truly is the most intense, exciting, wonderful feeling in the world. I wish I could adequately describe it and share the joy!!!

And when I finally see Max with Barney and Shakespeare...WOW, you might have to scrape me off the ceiling, I will be so overwhelmed with love and happiness!!!

Suzanne Mom and Elizabeth are coming up to the hospital tomorrow to help us get home and celebrate the big day. Should be fun...and yes, a little crazy! Watch out Bellingham, HERE WE COME!!! :)

THE COUNTDOWN IS ON!!!!!!!!!!!!!!

YES, YOU READ CORRECTLY!!! The countdown to Max's homecoming is officially on. NEXT WEDNESDAY IS HIS DISCHARGE DATE!!! Can you believe it??? Can you believe it??? (I have known for a few days but didn't want to jinx myself by telling too many people!)

There is so much planning to do...between final consultations with the many various specialties and training on the equipment and medicines, etc. But we are absolutely 100% thrilled and overwhelmed...and are now officially counting down the days!

YES, Max is coming home for the holidays...he truly is a miracle. If you don't believe in the spirit of Christmas, look into Max's eyes and you will feel the power of love and the Lord. Amazing!

The "only" holdup would be is if Max's cold worsens...so far the infection showed up negative and he is just battling a serious cough and major congestion, which has worsened his breathing. However, he is putting up a good fight and already feeling so much better! Keep up the great work Maxwell...you're coming home!!! YAY!!!

Thank you everyone for the many welcome home cards we have received...will be so fun to have in Max's room. Such loving, positive energy!

FEVER AND INFECTION STRIKES AGAIN

Max always seems to know when something BIG is coming up...heart surgery, going home, etc.! As the day progressed, Max felt worse and worse. A few hours ago he spiked a fever of 102 and heart rate was hovering in the 200s. He was facing respiratory distress...and there was quite the concern. If he continued that trend, he would be back in the ICU. Fortunately, his fever has subsided with the help of some drugs...and he seems much more comfortable. He even was playing with his tongue...a favorite activity of lil' Max. Until then, he had been absolutely miserable all afternoon and evening. Heartbreaking...nothing was making him settle down.

Hopefully he continues to stay stable throughout the night...we cannot afford a serious respiratory infection. We currently are in "ISO" (isolation) until the tests come back tomorrow.

HMMM...MAYBE CHRISTMAS AT CHILDREN'S AFTER ALL

Well, Max has come down with a cold...possibly pneumonia. He has been sneezing, coughing, gagging and just dealing with lots of extra secretions...not fun or easy on a lil' guy with chronic lung disease and narrow airways. So sad to see him struggling...he is having to breathe harder to compensate for the excess "snot." We have been doing A LOT of suctioning, which he HATES...and it is a never ending cycle. I was up throughout the night trying to keep up with it. We did an Xray last night (I got to carry him to the lab...such a quick but fun field trip!) and sure enough, it showed some changes. I had a feeling the past few days he was coming down with something. Hmm....if this continues, we will not be heading home very soon. HOPEFULLY it's a quickie and Max is going to show us how strong he is and will fight this infection well. The attending is coming by again this afternoon to check on his progress. This morning he was reminding me how "crummy" Max's health is..."awful lungs"...I said, don't you mean "awfully CUTE?" :) And overall just warning me how THIN the ice is with Mr. Max. But as of this morning, we were still talking about sending him home soon...however he is sounding worse as the day goes on. A little scary...

In between suctioning his nose and pumping for him, I am keeping busy with making Max's holiday cards for his international fan club. :) His photos are just TOO yummy delicious!!! :) No exaggeration! It's a great distraction from me stressing out about this cold/infection.

C'mon Max...we are soooo close to going home! Get better soon so you can meet your two funny, adorable pups and all the people who just adore you from afar! :)

GOOD FEW DAYS

We have had a good few days...some ups, some downs...but positive for the most part. :)

We are making progress in bringing my lil' guy home. I have been working with the discharge nurse and the team closely to make this happen...there is A LOT to do to get ready! From home nursing and medical equipment to final tests and evaluations, there is much, much to coordinate. Additionally we are getting therapy lined up so we can begin as soon as we get home. Max has a lot of catching up to do. Spending nearly six months in a hospital doesn't allow for much development unfortunately.

Along those lines, I am quite nervous right now about his vision or his ability to process what he sees. I am hoping it simply is a reaction to the hospital surroundings and Max just being apprehensive because of all that has happened to him (rightly so). I have requested several consults. Or perhaps "demanded" is the more appropriate word. I told them I will sit outside their office until Max is seen again...is that considered "demanding???" Oh well! You gotta do what you gotta do! Anyway I have requested/demanded consults with opthamology and neurodevelopmental doctors and am very anxious to hear their thoughts.

Last night Max was able to get a real bath for the first time in two months (in the ICU he was only able to get a sponge bath due to his fragile health and the breathing tube, etc). It was very exciting! Well it was exciting for me, but as you can see in the photos, Max actually fell asleep a few minutes into it! :) It was so funny! He was so relaxed and just zonked out. This also was the first time I was able to give him a bath by myself. Before he had so much "equipment," two people were necessary. Additionally, I know him well enough now that I can safely take him off the monitors for a few minutes and know if there is any trouble. Great to now feel that comfortable.

Max also had fun today in his swing...the first time in over two months. It's wonderful seeing him enjoying typical baby activities! He found his mouth this week and loves sticking his hand into it. I love watching him doing that.

We are working on changing his feeding regime so that he is not stuck to his feeding tube 24/7...so far he is making good progress and can be off the feeds for four hours. That will allow me to take him to the doctors, etc. and not have to worry about bringing his feeds with us. Yesterday we had a little "oopsy!" with his Gtube. I was putting him back in bed and we pulled it out. He didn't seem impacted by it, but it brought me to tears. I was so scared that milk would just start pouring out, but of course we got it under control immediately and his new Gtube is much more attractive. The doctors were teasing me that it was passive aggressive behavior on my part and I should have just asked for the new and improved tube. :) In a month it will be replaced with an even better, more permanent version.

Last but not least, his CO2 numbers look slightly better than earlier this week. That certainly is promising but it still is a concern. Time will tell...

We did a gorgeous photo shoot this week with Maxwell for his Christmas cards. He looks absolutely adorable. WOW! We actually fit him INTO a stocking (made by Mary Mom while she visited me on bedrest!). I will post for the holidays!

Enough for now, I am absolutely exhausted and need to catch some zzzz's. Thank you everyone for all of the "welcome home" letters and emails for Max. He is very appreciative and feels very very LOVED!!! :)

CO2 RELEASE COULD BE ISSUE

Max's carbon dioxide and bicarb levels have increased in recent days, which is worrisome. This is one of the factors that could keep him in the hospital and possibly move us toward a tracheostomy. The doctors have encouraged me to stay positive but that we must follow this closely. I am HOPING that I wasn't getting too excited...too quickly. We are still moving towards a discharge plan, but if this issue doesn't resolve, plans may change.

SPECIFIC PRAYER REQUEST: Maxwell's lungs need healing and growth. He needs to effectively and calmly breathe...inhaling good oxygen and exhaling and ridding the body of the CO2.

Max's Coming Home CELEBRATION!!!

With much hope and faith (and LOTS of excitement!!!), we are emotionally, mentally and physically preparing for Max's arrival at home. (I am hoping we have a tentative date as of this week!) It will be the most amazing (and scary) day of my life...truly!

He has certainly proved worthy of his name, MIGHTY MAX! He is sooo incredible! (This morning I swear he almost smiled...he had such a joyous look about him...maybe he knows today is ICU graduation day!!!)

Since many of you live far, far away (around the world even!) and we are limiting his visitors anyway, I thought it would be fun to find a way to have everyone...near and far...join in on the "Max's Coming Home CELEBRATION!"

For everyone (friends, family and strangers too!) who reads this blog and is an admirer of Max's strength and spirit, please send a welcome home letter to:

Maxwell McKinley
3204 Illinois Lane
Bellingham, WA 98226

Or if you prefer, you can send an email to amysmckinley@aol.com.

His beautiful baby room will be filled with your letters of love and support! How wonderful would that be!?!?

If you don't personally know us but have kept Max in your thoughts and prayers, PLEASE send a note...the fact that you don't even know us but care so deeply about my lil' boy is amazing and I want you to share in this joyous occasion!!!

Thanks everyone! I think the positive energy for Max will be incredible and will add much joy and love to our Coming Home CELEBRATION!

SPECIAL PRAYERS FOR SPECIAL BOYS

Dear Friends and Family,

I have three friends - Lane, Carter and Ryan - in the hospital and I would really appreciate you praying for them. Each of them are experiencing a particularly difficult time right now and they and their families need to feel extra love and support. Thank you so very much! Your prayers have done wonders for me...perhaps a miracle will happen for them too! We are planning a big trip to Disneyworld together in a few years, and I want all of us to be big and strong for that. Lane, Carter and Ryan...(and of course me, Maxwell!) -- these guys all need your prayers tonight and always. Thanks everyone...knew I could count on you!

Love, Max

MISCELLANEOUS MEDICAL UPDATES

Let's see...not A LOT of medical changes the past few days...FINALLY!!! But there are a few updates:

The partially collapsed lung issue seems to be resolving with some treatments. Whew, what a relief! He continues to breathe pretty fast but does not appear too distressed fortunately.

His ear infection appears to be clearing it up. At first they were concerned the ear drum had separated, but they believe it is an infection that can be cleared with antibiotics. Until this is cleared, we cannot use the hearing aides, which is disappointing. But there will be plenty of time, I am just sooo excited to start having Max hear the world!

Max received his vaccinations yesterday (high risk for absolutely everything so we have to get the works!) and had a low grade fever today but it has subsided this evening. He handled it all like a pro...he is incredibly tough. When I got my flu shot the other day (everyone in the family was ordered to by Max's doctors), I was somewhat anxious and then realized Max has to deal with that each and every day and he barely flinches. Amazing, absolutely amazing!

His fluid balance continues to be quite high, but his diuretics cannot really be changed or increased due to his kidney issue. So we are hoping as more time passes after the surgery, this issue gets to be less of a problem. However, he will always retain extra fluids due to his chronic lung disease...I will just have to keep a close eye on that.

He is not growing as fast as the nutritionist would like...but between his recent surgery and his condition, that is somewhat to be expected. I am going to meet with her again tomorrow to discuss our goals and set a plan.

Sedation is always an issue when you have been intubated for such a long time. Before he went to the floor, his sedation needed to be changed from IV to oral (GTube) and on a plan for weaning. That has started and is going well. So he no longer needs the IV...yay! One less "attachment"!!! He will remain on some sedation when he comes home due to his respiratory issue, but we are hoping he comes off of the major doses without too much withdrawal.

Lastly, we are transferring to the floor tomorrow. YIPPEE!!! Everyone is so excited for Mr. Max. The ICU nurses and doctors are astounded at how well he has recovered and the floor nurses keep coming up to visit him...they are getting excited for him to return downstairs!!!

GO MAX GO!!! You are amazing lil' man!!! Hope everyone enjoys all the new photos...Max wanted to share his "gorgeousness" with the world! He is getting cuter and cuter every day, isn't he!?!?!

MORE MIGHTY MAX PHOTOS!!!

Here are the latest and greatest photos of me, MIGHTY MAX! Enjoy!

Tomorrow I graduate from the ICU and head to the floor...one step closer to home sweet home!!! I am sooooo excited...especially because I can finally meet my pups, Barney and Shakespeare. Mom says we have to find a way to not let them eat my hearing aides, oxygen tubes or GTube! They sound a little crazy but Mom sure loves them, so they must be pretty wonderful!!!

Wish me luck this week...I am planning on the getting the heck out of here VERY soon! Have a great week everyone! I plan to!!! Love, MAX (Mommy says hi too and thanks everyone for your prayers!!!)

"Here I am with my infamous 'nose hose' (aka CPAP). Not fun at all, but it did help my lungs recover from such a long intubation!"

"I'm free, I'm free! Time to move and groove...and get out of this joint!!! Today I was making my mommy and grammy laugh and laugh with all my moving. I am a WIGGLER!!!"

"Notice my stereo on my bed? My mommy always plays me lots of sweet lullabies and Christian rock. Despite my hearing loss, I enjoy my music lots! Excited for my new hearing aides, so I can enjoy music even more!"

(Sorry this photo is sideways...mom doesn't have the software at the hospital to change it.)

"Even when I am sideways, I am adorable! Don't you just want to pinch my chubby cheeks??? Better use PURELL first or Mom will panic!!!"

"Yes Mommy, I know you adore me...you have told me about a million times today! You're so silly, but I love you too."

MIGHTY MAX!!! YOU ARE AMAZING!!! WHAT A MIRACLE!!!

Ok, I am told by my doctors not to get TOO excited, but I can't help it! I AM JUMPING FOR JOY!!! (The staff got quite a kick out of me yesterday during rounds, because I simply could not contain my excitement!!!) And actually I just had to leave his room because he was sleeping so peacefully and I just wanted to pick him and smother him with love and kisses! So I thought I would use this time to post the good news and let him get his much needed beauty rest. :)

Max is doing AMAZING!!! He is looking better than ever...truly a miracle!!! AND...drum roll please...he might, just might, be home in time for Christmas!!! YES!!! You read right...possibly home for Christmas. It will be tight, but it might just happen! CAN YOU BELIEVE IT? My baby is coming home soon! Holy moly!!!! Can you sense our excitement???

Everything isn't perfect by any means...but he has made tremendous progress. Most importantly, he is officially off of CPAP. That happened yesterday at noon and so far so good. There are a "few kinks" with his lungs that we still have to work out and if they get worse then we might be here for several more months, but I just don't think that will happen. Mommy's intuition is that Max is on the road to recovery and on the road to Bellingham sooner than later!!! YAY!

I don't want to dismiss the few kinks, because they could be somewhat serious. First, a portion of his right lung has collapsed because of his shallow breathing. They did another xray this morning to determine if that is stable or worsening. We should know shortly. Additionally he continues to breathe fast but that has slightly improved so we are pleased with the gradual progress. However, we have to make sure it doesn't worsen as he is off of support for longer periods of time. His oxygen needs have increased slightly, so we are not sure about that. However, he will need that for quite some time due to the pulmonary hypertension issue.

Another issue is that he continues to retain a high level of fluids...despite the diuretics. This will continue to be an issue, but it does present some problems. We are watching this very closely because most importantly, it impacts his breathing.

Lastly, we must determine that he can grow without the ventilator. THIS IS THE BIGGEE. However, they don't believe they need to keep him in the hospital to watch this. He could come home and if he doesn't grow adequately, then we will return to the hospital for breathing support (tracheostomy). This would allow his lungs to not work as hard.

And of course he needs to continue keeping his O2 up and his CO2 down...which he is doing well with now.

My pulmonologist warned me yesterday though again...Max is a THIN ICE kid and if the ice starts to crack, you will have little time before you fall in and drown. Pretty scary to think about. So he and the other docs have reminded me time and time again, you will need to be on Maxwell 24/7 oobserving and detailing every tiny little change to ensure all is well. What a full time job...lots of reward but LOTS of responsibility with absolutely no breaks. But I will do whatever is necessary for Max to come home and start living a "normal" life (well between weekly doctors visits, clinics, daily therapy appointments, the works!) :)

So that is the amazingly wonderful news. We still have many "kinks" to work out...but I am feeling sooooo confident about Maxwell right now. I had this same positive feeling before heart surgery and I was right, so hopefully my intuition is right on!

This weekend we will probably graduate from the ICU and head back to the floor (YIPPEE!!!) and then we will see how he does in the upcoming weeks. HOW EXCITING IS THIS??????????? :)

TRIAL OFF OF CPAP

After MUCH begging, the doctors finally gave in to my requests and we gave Max a trial off of CPAP for a few hours. AND sure enough, he proved me right...he did well! I held him and it was so wonderful to not have any barriers (well besides the million wires, IVs, oxygen, etc.!!!) and be able to just smother him with love. Such a joyous time! Then when the trial was over (we just wanted to test him briefly), he had to have the CPAP mask and hat on again...and he was not happy at all. (I'll try and post some photos soon...quite comical get up!) Since he appears more agitated with CPAP, they are hoping to get him off sooner than later. Soooo...there will another trial in the middle of the night and if he does ok and if his lung xray looks the same, they are going to take off CPAP. Max will be MUCH happier! I am sooooooooooooooooooooooooooooooo excited!!!! :)

On another issue, Max had an echocardiogram done on his heart today to determine the success of the surgery. All is well...all the patches and dilations are working as they should. However, the echo did show that his pulmonary hypertension (due to his heart condition and chronic lung disease) is definitely still an issue and he will require supplementary oxygen for quite some time. We already knew that anyway, so not much of a surprise. As far as the bradycardia episodes a few days ago, the EKG showed some irregularity in rhythm but no particular reason why. It hasn't happened since those two days, so hopefully it was simply a side effect of one of the medications.

I am also VERY excited for tomorrow for another reason...the audiologist is coming by to work with me and Max on his hearing aides! I have been bothering the heck out of that department and the ear molds are finally in and we are officially getting started. I am thrilled and just hoping this makes a difference for Mr. Max! Hopefully he doesn't think, "Yikes, Mom sure talks a lot...'Yea yea you love me, you adore me, I'm so handsome...yea yea.' Maybe I don't want hearing aides after all!!!" He better not! Anyway, it should be a crazy and hopefully very successful day!

HIP HIP HOORAY! GO MAXWELL GO!!!

Yesterday Max was FINALLY extabated! YAY MAXWELL! :)

It was tough at first and they thought they were going to have to reintubate him and then probably schedule the tracheostomy if he failed again in a few days. However they tried a few measures (different drugs and breathing treatments) and then put him on CPAP (a mask over his nose which provides positive pressure)...and within hours, he started improving! His airway has some swelling and possible narrowing probably due to being intubated for six weeks...but we will know more in the next day or so.

He isn't doing "great" but he is doing good...which is definitely progress. We did a blood gas yesterday after a few hours and it was good. I literally was crying and jumping for joy at the same time...my doctors were laughing at me but they were pretty excited too! It was so amazing to finally see his face again...it is truly like a rebirth, it is soooo amazing. I wish I could adequately describe my joy!!!! He is incredibly gorgeous and even more so than six weeks ago. He found his tongue again last night and had great fun licking his lips....very cute. He looks even more comfortable today, which is very reassuring.

The doctors have reminded me though that while he might not need a trach at this point, it will be discussed time and time again in the next few years because of his chronic lung disease and airway issues. Any time Max gets sick or if he is unable to get weight because of his work of breathing, we may turn to a trach. But that's then...and this is now. So I am focused on today and TODAY Max looks great! (Well great for being in the ICU!)

Max has had a million and one visitors today...all of his adoring nurses and doctors wanting to see this gorgeous lil' boy without his breathing tube. Everyone is soooo excited to see his sweet mouth again! So nice he has such a big fan club in the hospital! Fun to have people share in our progress!

The last 24 hours have been very critical in knowing how well he could do being extabated...now it's a wait and see game if he can keep his CO2 stable and his weight increasing. C'mon Max, keep up the great work!!! You are one miraculous lil' man!!!

Please keep praying for Max's improvement and progress (specifically easy and effective breathing) and also keep our friend Carter in your prayers. He is a 6 month old in the IICU here and he took a turn for the worse last night, and we are hoping he can fight off the infections and resume stability soon. His parents and I have been become close through the month and they are very worried about their lil' angel. Thank you everyone!

EXTABATION POSTPONED AGAIN

I was going to post late last night because there was a decision to extabate early this morning...but I was too tired so I thought I would just this morning. And sure enough, the situation changed YET AGAIN over night.

His extabation has been postponed for several reasons. One, he continues to be fluid positive for many days now, despite his powerful diuretics. Two, he experienced many bradycardic episodes throughout the night. Today Max will have an EKG to see if they can determine any issues. This is a first for over a month, and there is a lot of confusion on why it is happening this time. Three, there appears to be an issue with his upper airway due to the absence of a leak around his breathing tube. The airway may be slightly collapsing or perhaps swollen due to his activity and the tube moving around. They put him on a steroid yesterday and we are hoping it makes a difference today. There was talk of just doing the extabation regardless...just to give him a try, but then the heart irregularity started. Hmm...

Additionally I consulted with the ENT yesterday to discuss numerous plans for Maxwell's ears...we will know more in weeks and months to come. From possible surgeries to tubes to mechnical devices, there is much to do yet for Max.

Hopefully I have better news on the lungs and heart later to share later today.

LUNG CONDITION

The bottom line is that Max is still intubated. He has recovered wonderfully from his heart surgery, however his preemie lungs continue to be a problem. We have tried a million different things this past weekend but he continues to breathe very fast. I met with the pulmonology team this morning and of course interrogated them...that whole team just gets a kick out of how many questions and ideas I have! I absolutely love those doctors and they are so willing to accept my active involvement and thoughts, which is wonderful!

Today Max will officially leave the Cardiac ICU since he is doing so great in his cardiac recovery and will be transferred to the medical team of PICU. We are making progress...

It is possible we will try extabation today or tomorrow and just see what Maxwell does! If all goes OK (as far as no emergency reinbutation), we will then just watch and monitor his rate and growth and then determine if a trach would help.

EXTABATION POSTPONED

Well Maxwell is not going to be extabated today...not a big surprise but still disappointing. There was a complication with his PIC line yesterday so we thought that and the drug wean were two factors in Max acting like he was in withdrawal. However, today he continues to breathe very fast when he is awake. So we are quite confused! I am sitting with him studying the respiratory rate and his behavior constantly so I can figure this out...I am determined!

Fortunately his blood gas numbers are looking much better than in the past, which is very encouraging! Hopefully we can figure this out soon and he can be successfully extabated in the next few days. We were talking about that this morning and I was just bursting with excitement...and Max's doctor was laughing saying I looked like a kid in a candy store. I am just thrilled with the thought of him POSSIBLY not having to get a trach and possibly coming home before Christmas. It would be so incredibly amazing...WOW!!! Trying to not get too excited, but as you can tell, I am!!! :)

GREAT RECOVERY / EMOTIONAL WEEK

Max's recovery is going really, really well. Actually one of the doctors said they wished all the cardiac patients did as good as MIGHTY MAX! :)

He has had a few complications, but we believe most have been resolved. There was fear of some clotting yesterday (most likely no longer a concern) and then he maintained a fever for several days (now it is back to normal). They ran some tests and indeed his urine had an infection, so we redid that today and will have results back tomorrow. If positive, we will start yet another antibiotic.

His breathing was doing pretty good until today. They have been weaning him off the ventilator and it doesn't look like Max likes all the new lower settings...which might not be promising news. But he might still just be getting used to the changes or be dealing with narcotic withdrawal. (He was weaned a little today in preparation for extabation, so we are giving him extra meds through the night to see how he does.) He is good when he is sleeping, but as soon as he wakes up, his respiratory rate shoots up. This afternoon I was holding him (first time post surgery...was so great!) and every time he closed his eyes for a quick snooze, his rate would immediately drop down to a normal range, but then sure enough it would spike as soon as he woke up. I reminded him how wonderful it would be to come home without a trach. We'll see if he listens!

As far as me, this week has been difficult emotionally. The anticipation and nervousness around the surgery was extremely intense...and then celebrating Thanksgiving in the hospital and Ronald McDonald House, all while going through a tumultuous divorce....made for a pretty emotional week. Who would have guessed? I look back a year ago at Thanksgiving time and I thought I was happily married...we were finally pregnant after two painful miscarriages, our businesses were doing great, and we were preparing for an incredible Christmas vacation to celebrate the year...I thought all was wonderful! And then a few months later I find out it was all a sham. Hit me like a ton of bricks...completely unexpected. WHAM. And then Max arrives months early with a million and one health complications. WHAM. WHAM.

One particularly surreal moment, which for those moms who have pumped will find quite humorous, was earlier this week. I am in the hospital's "pump room" making my milk for Maxwell, which is typically supposed to be a relaxing time so you can "express" easily. (Sorry men for all the details!) However, there I am pumping, sanitizing the room (I am definitely OCD now when it comes to germs!), and talking with my divorce attorney preparing for the hearing in a few weeks....all at the same time. Such a crazy surreal moment. I came out of the room shaking my head in disbelief...crying and chuckling....thinking "is this really my life???"

So needless to say, it's been an emotional week...a lot of ups and a lot of downs. But most importantly, Max's surgery went well and that was the best news for a LONG time!

For all of you still celebrating the holiday, I hope you have a weekend of relaxation, health, joy and peace. Please be thankful for all that you have! Let us all learn a valuable lesson from sweet lil' Max. My weekend will be absolutely perfect if Max is successfully extabated, but that will be up to him! That will definitely be something to celebrate!!!!

Last but not least (what a super long post this is!!!), I hope everyone enjoyed the new photos...isn't Maxwell just absolutely gorgeous!?! And what a champ! :)

MESSAGE FROM MAX

Here are lots of photos of me, sweet lil' Max. Mommy says all of you have been thinking and praying about me lots and lots...thanks! I am doing just fine. I still have a long road ahead of me, but at least the heart surgery is out of the way. I must admit, that was kinda scary. To bring a smile to your face, we thought you would enjoy some adorable photos of me!

Mommy is giving me a pep talk before surgery!

A few hours before surgery...I'm movin' and groovin' and ready to roll!

How cute am I in my lil' hospital gown? I'm getting prepped for my big surgery!!!

Just a few hours after my heart surgery...yep, that's me underneath all the tubes and wires! Mom thought twice about posting this photo, but I think it shows how tough I am! It was quite a surgery, but don't worry...Mom says it was a big success!

Mommy was really, really, really excited to see me after surgery! :)

Two days after surgery and I am already feeling so much better...and looking good without all those tubes and wires! See my incision? Mommy says that will get me sooo much attention and respect at the swimming pool someday!

Hope you enjoyed my photos! Have a happy Thanksgiving! Love, MIGHTY MAX

DOING GREAT!

Max is still doing really well...actually he is doing BETTER than the doctors expected. How wonderful is that!?! :) He has had several items removed in the past day...including his chest tubes and pacemaker wires. He will not need a pacemaker thankfully. So great to see more and more things come off of his lil' chest! The incision is quite large but will certainly earn him a lot of attention at the swimming pool someday!

He is currently running a fever, which they are not overly worried about it at this point. If it continues much longer, they will run some tests for infection. He is sleeping peacefully for the most part, but when he wakes up or do a procedure on him, he is very fussy so they are keeping him fairly sedated. He did enjoy watching his mobile for awhile this morning, which was fun to see.

In preparation for Thanksgiving (ok, not really...but the timing is right!), Max started his feeds again yesterday...just at a very, very slow rate...enough to keep the stomach and bowels working. We are hoping to be able to slowly increase the feeds today and tomorrow. I have quite a collection of breast milk stored up at the hospital from the past week! (Actually at home I have a huge deep freezer of frozen breast milk...quite a comical sight!)

My sister, Suzanne Mom, and lil' Thomas (who turned 4 months yesterday!) will be joined by Jackson and Jim tomorrow for Thanksgiving. We will celebrate here with Maxwell and then enjoy dinner at the Ronald McDonald House with other families. A little different Thanksgiving than last year (the time of Max's creation!), but we certainly have much to be thankful for...especially with such a successful surgery this week!

Hope everyone enjoys a Thanksgiving of gratitude, health, peace and joy!!! And of course lots and lots of yummy food! :)

HAPPY BIRTHDAY MAX

Today marks five months for Mr. Maxwell...and he is celebrating with a successful heart repair! Happy Birthday Max! We are so proud of you!!!

All is still well for our sweet lil' man. He did spike a fever and had a high heart rate throughout the night but both issues are looking better this morning. A LOT more sedation (they did not have to paralyze him) finally did the trick for his restlessness and he is sleeping quite peacefully. He looks a little worse this morning...they removed his dressing around the incision (quite large) so perhaps everything it just a bit more visual for me. He may have some of the chest tubes (which drain the blood) removed today...and quite possibly start feeds later too! Wow.

The nurse and I were just joking about how strange it is that I am like wow, he is doing so great...and yet here is my lil' guy with a million and one tubes (and I am not exaggerating...wait until you see the photos!) and blood and IVs all over him and I am ecstatic. Still terribly scary but joyous at the same time. It is very surreal. But I just know how important this surgery is and I am just so incredibly relieved it was a success. Plus I have seen him undergo so many surgeries that seeing him this way (even though it is about a hundred times more intense) is not a complete shock for me, like it would be for some parents.

I am running back downstairs to make it for rounds...but I wanted to at least give you a morning update so you wouldn't be worried! Max is doing great! GO MAX GO!!! Can you tell I am just glowing this morning!!! I am sooooo proud of my lil' man...what a WARRIOR!!!

FIESTY LIL' WARRIOR

When they wheeled Maxwell back out of the OR, the anethesiologist chuckled "he's quite the fighter, isn't he? what a champ." He was amazed at how active he was being after heart surgery and MUCH sedation. I think he was a little frustrated too...they have had the most difficult time relaxing Max. He is worming around like crazy. While this is great because it shows his brain is doing well and he is strong, his heart and body most definitely need a rest.

The doctors are consider "paralyzing" him to calm down his body...but first they are going to max out his sedation and see if that does the trick.

Additionally, his heart rate is a little on the high side. Some meds worked well to bring it down but then it dropped down too much so they had to stop it. They are hoping it will decrease to a more normal rate once he relaxes.

Despite the massive amount of wires, blood, draining, etc., he looks surprisingly good. Thank you everyone for the wonderful prayer chains...they are doing the trick! Between God's love for Max, his strong spirit, amazing nurses and doctors and the love of friends and family, Max is doing pretty darn good! Let's hope this trend continues...

SURGERY IS A SUCCESS

YAY! Surgery is over...and it was a success! :) We just met with the surgeon and he was very pleased. I cannot even begin to describe how ecstatic we are!!!

It took longer than they thought because of his fragile veins, AND sure enough, he had an ASD in addition to his sizable VSD. So the heart was in a little worse shape than we thought, which is actually what I was oddly hoping for....hoping that if the heart was in pretty bad shape, then perhaps the surgery would make a BIG difference in his overall health and lung ability. I am hoping, hoping, hoping!

The next 24 hours (and especially the immediate six hours) will be the most critical...so it certainly will be a long night. But I feel very confident that Max and his new and improved heart are going to do great!

He is supposed to be back in his room in the next ten minutes...so we are very eager to see our lil' man. I will share your love and prayers with him...

MAX GOES TO THE OR

After much preparation throughout the day, Max is officially in the operating room. We walked with him and the crew to the OR...what an emotional journey. It was so hard to let go of him and know what his body will endure this evening. I smothered him with kisses and reminded him of the hundreds of people sending tremendous love and prayers to him.

I feel so confident that this surgery will be an amazing success. He was so alert and strong today. We had a good snuggle time together and we just gazed at one another...it was wonderful. Tears are overflowing right now as I write this...I am so in love with this lil' guy. Maxwell is a truly incredible warrior. We both are so in awe of the amount of love and comfort we have received from friends, family and strangers. Thank you, thank you.

We should have the first call from the OR within the next hour or so...and then it will be several more hours until the surgery is completed. For those of you in Bellingham and familiar with Treasury of Memories, you will appreciate that we are distracting ourselves with putting together a beautiful scrapbook for sweet Maxwell.

SURGERY STILL ON

So far, so good. We are just hours away from surgery and everything is still on. However, tonight Max gave us a bit of a scare when his temp went to 100. But a cold bath and a few hours later, he was pretty much back to normal. We'll see!!! If he manages to have the surgery cancelled again, he must have truly magical powers and I will have even more appreciation for how special he is!!!

The nurse said tonight (half jokingly) that they will probably take him regardless because the surgeons are tired of waiting!

Thank you everyone for your encouraging emails! Very appreciated! I'll try and keep you posted throughout the day tomorrow!

MAX'S FRIEND PASSES AWAY

Another sweet lil' baby at Children's Hospital left his earthly body today....Jacob Dennis Sullivan. He was seven months old...born three months early and had experienced multiple complications due to his prematurity. Like Maxwell, he had yet to go home.

His parents and I had spent time together supporting one another and discussing our sons' futures. When they returned to the ICU on Saturday, I knew it couldn't be good...but I had no idea how serious things had become that day. The ICU staff always says that babies get better very fast and they can get sick very, very fast. Sure enough things went downhill quickly for lil' Jacob and he passed away this afternoon...and the doctors still have not identified exactly what went wrong. The parents came and found me so that I could hear the news directly from them. Obviously they are extremely distraught and heartbroken but are also comforted knowing that Jacob is whole and healthy again. Please keep their family in your thoughts and prayers.

SURGERY TOMORROW

Every day is a new day here. As of yesterday we thought the surgery might be postponed again because of his vomiting issues, however we believe that may be resolved so we are moving forward with the surgery and actually moving it up a day.

As far as the Nissen, the Xrays show that it appears to be working. However he had an incredible amount of air in his abdomen, which was making it difficult for him to digest food and keeping him pretty uncomfortable. He just would not settle down all day yesterday. He has been NPO (without food) now for almost 36 hours and will remain that way until after surgery. They have been venting and suctioning his GTube to release the pressure and extra air. This is something I will have to learn how to do as well when he comes home.

So we are officially on for tomorrow and I believe it will indeed FINALLY happen. Please once again gear up all the prayer chains throughout the world and let's pray for a very successful, uncomplicated surgery and an amazingly speedy recovery for sweet Max...AND let's pray that this makes a tremendously positive difference for his lungs and overall health. We love you Maxwell! You are our hero!

DIFFICULT NIGHT IN THE ICU

No news yet on the Xray. The doctors were overwhelmed tonight with some very sick kids in the unit so they haven't even had a chance to review it. It was quite a crazy night...several patients were coding and everyone was running around crazy. Max wasn't have the best nights either, but he was stellar in comparison.

One of my friend's children was readmitted to the ICU and the parents were very upset...I am quite worried and didn't have an opportunity to talk with them yet. Lil' Jacob and Max were both born around the same time with neither leaving the hospital yet. Additionally another lil' guy I know was having a very difficult time today. Quite an emotional and exhausting evening.

Hopefully tomorrow brings peace and comfort to many sick children. Please keep Jacob, Carson and Maxwell in your prayers.

POSSIBLE NISSEN COMPLICATIONS

Max has been having some vomiting in recent days, as well as increased secretions. A few days ago they thought it was he was experiencing withdrawl because they were attempting to wean some of his sedation. However, the signs are different this time, which leads the team to suspect there may be something wrong with his Nissen (the wrapping of the stomach around the esophagus to prevent reflux/vomiting). That was the surgery about a month ago.

They are doing an Xray on Maxwell this afternoon. They may need a surgery consult on it as well which won't be able to happen probably until Monday. This MAY cause yet another delay in the heart surgery...but I am keeping my hope that we are still on for Tuesday. We'll see what Maxwell says!

SNUGGLE TIME!

Yea! Max and I finally got to snuggle tonight! It was WONDERFUL!!! First I gave him a very messy sponge bath (a little difficult with the numerous IVs and tubes but manageable!) and then after we got him all cleaned up and weighed (just under 10 pounds still), I held him and just loved, loved, loved on him! Our snuggle time was followed by a gorgeous photo shoot! The nurses all were laughing at how many kisses Max got between each picture. I couldn't get enough of him tonight. :) He is sooo yummy cute.

I will post the pictures later this week...his shirt reads "Hello, my name is SNUGGABLE." And boy is he ever! He looks so good! I put his mobile back up today and he really seemed to be looking at it and paying attention...which is great considering the sedation and tubing he has going on. We also started back with his OT and doing his bed exercises. It must feel good to move around more...I remember how stiff I felt on bed rest in the hospital and that was just three weeks. Yikes.

He is doing so much better, well besides the fact that he still is breathing 100 breaths a minute! Geez Max! We are hoping, hoping, HOPING that the surgery makes a big difference in his breathing, but if not, the doctors and I discussed again today the probable need for a trachestomy. I am up for anything that will help Maxwell grow, develop, be happy and healthy...and COME HOME!!! A trach will certainly be difficult in many ways, but I will do what we must do.

*I posted earlier about a wonderful story...definitely read...too cute!!!

A SWEET, SWEET STORY

Several of you have told me that your children pray for Maxwell every night...which I love!!! Thank you for keeping my lil' guy in your daily thoughts...greatly appreciated! One particular story truly touched my heart....from the family of a fellow "CHARGEr." Thought some of you would enjoy it too!

"My girls continue to lay hands on his picture every night and pray for him. One night they were getting to bed WAY late and we forgot to grab his picture. They were freaking out when we started tucking them in because we had forgot. So, they got out of bed and said their prayer, and then hugged and kissed the picture. Cassidy is very possessive of the picture. She gives it a hug and kiss, then she passes it around, while still holding it herself, to make everyone else have a turn, then she does it again. She has to be the one to put the picture away too. It's a very sweet process we go through every night."

How sweet is that story? It brought tears to my eyes. The mom and I met one day in the hospital while her daughter was undergoing heart surgery and we have become fast friends. I can't wait until Maxwell can play with her two beautiful, charming girls!

The special needs community, especially fellow CHARGE families, have been so amazing! No one can truly understand the hospital and special needs experience like another parent...the bond is incredible. And since I am the only parent walking this journey with Maxwell, it is so helpful to have others to lean on. It really does take a parent who has "walked the walk" to truly get where you are coming from...it is so difficult to imagine the pain, sadness and confusion without having experienced it yourself.

From offering to sit with me in the hospital, arrange special services and do our laundry to bringing dinner for me and presents for Maxwell, these families have gone above and beyond. Here they are with their own special needs child and busy, demanding lives, yet they make the time to reach out to a complete stranger and offer kindness. Incredible! Thank you everyone!!! You have helped me more than you will ever know. I have always known that there are wonderful people in the world...but I know now that times a million! Max has quite a fan club! And now the club is international, how fun is that!?! I am on a listserv for CHARGE families and there are families in London, Australia, New Zealand...and the list goes on and on....praying for sweet Max! We love you Maxwell!

FINALLY A GOOD UPDATE!!!

Wow, what a difference a few days makes! Maxwell is doing soooo much better! The second ECHO determined that there was not an infection within in his heart...YEA! That was major, major news! That could have been really bad. Additionally, his latest blood draw was negative for infection so the antibiotics are working. Again, what a difference in just a few days!!! We were all so scared earlier this week but I am now feeling so optimistic and faithful. Feels so good to have such positive energy again!

AND...drum roll please...the surgery has been rescheduled. The staff and I are joking that we shouldn't tell Maxwell because he might try and delay it again! So it's hush hush in his room. We are back on the cardiac schedule for THIS Tuesday. One of my favorite docs (there are some truly amazing doctors who are so great to work with!!!) was in today and he was saying how we should start hosing down everyone with Purell as they enter Max's room or maybe put a big bubble around his bed. We cannot afford another setback!

Earlier today I was incredibly disappointed because we thought it might be two more weeks until the surgery and they changed their mind about extabation and wanted to hold off so he could focus on getting stronger. I had been so hopeful Max would be back to himself and we could return to play time and snuggling...well as much as you can do in the ICU! But hopefully we will still be able to arrange some of that for later today.

So that's the news for today...wonderful to finally report a promising update! This trend better continue...I have warned Mr. Maxwell that we cannot have any more fevers, infections, colds...anything. We are doing the surgery this time once and for all. Let's see if he will listen to his momma!!! :)

MORE INFECTION

Max's ECHO on his heart yesterday detected a hint of an infection within in his heart...actually near his VSD which is the most dangerous place, according to his doctors. HOWEVER, they are repeating another ECHO today to confirm that is indeed an infection and not tissue.

Additionally, the culture they drew from his lungs also is growing out an infection.

Today will be a very important day as we learn more. "Clinically" (O2, heart rate, respiratory rate) he is fairly stable, which is encouraging. However, the infections are certainly not good.

BLOOD INFECTION

Unfortunately I don't have good news about the weekend situation. We were HOPING that it was just a crazy "Maxwell spell," and he would be feeling better and we could move forward with the surgery in a few days. However, his blood test indeed came back positive, which is the reason for his high fever that continued on throughout yesterday and today. It did subside finally in the past hour and hopefully it will remain normal with this afternoon's addition of a powerful antibiotic. A blood infection is not a good thing with such a little "teetering" boy, but as we all say, he is quite a fighter and I am confident he will prevail once again.

His central line is being removed tonight and will be tested to determine if that is the cause of infection. He had a new IV placed today and will get a PIC line tomorrow morning. His respiratory rate is so sporadic...sometimes it is relatively "normal" and then other times it is over 120.

Because of the infection, his heart surgery will not happen for at least a week...probably two weeks. Of course we are heartbroken about this...we were so eager to get his heart fixed so that we could make good progress and start thinking about heading home. Max is almost five months old and has yet to see a day outside of the hospital. Unbelievable.

Sorry I haven't posted much recently...the last few weeks have been numbing. Thank you as always though for your loving emails and phone calls.


My mom, Mary, took this adorable photo of sweet Max during her visit last week. We loved having her here, and the nurses enjoyed the extra help of another ICU nurse! Even when Max isn't feeling well, he is still amazingly gorgeous!

And a special thanks to Erin for the shirt he has on (hard to see). It reads: "I'm a miracle baby" (front) and "Please handle with care" (back). How perfect! And Anara, that's the praying bear helping hold up Max's breathing tube! He never leaves Max's side!

MAX REFUSES TO HAVE SURGERY

Well perhaps Mr. Maxwell is trying to tell us something...once again his surgery is going to be postponed.

He spiked a high fever in the middle of the night and continues to have a fever today. Additionally, his respiratory rate, heart rate and blood pressure are higher than usual. He has received a lot of sedation and drugs to calm him down and bring down his temperature. Many tests, as usual, have been conducted and we will have some results in the morning. However, we cannot imagine the surgeons are going to feel comfortable taking Max in this state. So here we go again...

Hopefully nothing is seriously wrong and he will feel better soon. And hopefully we can finally have the surgery in a few days. Oh Mr. Maxwell...you keep everyone guessing, don't you!?!?

By the way, Max is now weighing in at just under 10 POUNDS!!! He is getting sooo big! At least, he is using this extra time to grow and get stronger.

Hopefully I will have promising news to report in the morning.

LOTS OF UPDATES

What a week...it has been truly crazy, discouraging, emotional...the works. I am hoping peaceful days are coming our way. To keep you in the loop, here are a few updates on my favorite lil' man Maxwell:

NOSE: Yesterday he had the procedure done on his nose...we will know in the next few days if that was successful.

EARS: Max will have a BAER (hearing test) performed today. A few weeks ago I received some pretty discouraging news...Max's hearing in one ear had progressed from moderate to severe loss. I was absolutely heartbroken for both of us. Truly heartbroken...I really thought we had lucked out in this department. However we have been dealing with so many other medical issues that I have tried to not think about it. And basically the doctors don't have a clear answer...there are a few possibilities.

So they are redoing the test today. One ear wasn't tested last time because Max woke up...the test only works if the baby is quiet and sleeping. I am HOPING that perhaps 1) the test was wrong last time, 2) the other ear is still only mild/moderate loss or 3) the "bad" ear hasn't gotten any worse than last time.

INFECTION: As far as Max's possible infection, everything so far has come back negative fortunately. What a relief. He is fairly stable right now. However, they are not going to extabate him because they want to keep him stable for the heart surgery. It has now been three weeks since I have held Maxwell...which is unbelieveably sad and disappointing. Hopefully when I am feeling better, he is still stable and we can once again snuggle. I am tearing up right now as I write this...can any of you moms imagine not holding your precious baby for that long? It's so hard to describe the emotions...I just want so much to make him all better.

HEART: The surgery has been rescheduled for next week and I am hoping, hoping, hoping that nothing postpones it again.

SICK MOMMY: As far as me, I came home last night to try and kick this illness. Losing my voice is quite frustrating when you are trying to talk with the doctors about such intense issues! I went to the doctor and got some medicine, so hopefully that will help. Fortunately both of my mothers are here to help...Suzanne Mom is here in Bellingham helping with Eliz's family (they are opening up yet another business this weekend!) and Mary Mom is in Seattle giving lots of TLC to Maxwell. For those in WV, you will appreciate that Mary had on the Mountaineers yesterday in Max's room...so he has been properly introduced to the blue and gold. And last week Max's nurse also had on football and taught him how to grunt! So even though he may not have a father figure around, he is already learning all about football!

ANOTHER SURGERY

Yesterday I ran into one of the ENT doctors and asked if he could swing by and look at Max's nose...just to make certain that everything was still open and clear. It had been on my mind this weekend. Sure enough they came and took a look this morning and one nasal passage has narrowed/partially closed. I about lost it in rounds...cried, vented...the works. WHY is Max not getting a break? WHY did I have to be the one to remind ENT to look at Max? WHY, WHY, WHY???

So this afternoon ENT will perform a dilation (Max will be heavily sedated of course) at the bedside...this is not a fun procedure but better than having to go to the OR. However, the two times in the past that they have tried this, Max still had to go to the OR the next day...so I am expecting Max will have surgery on his nose again tomorrow.

The heart surgery will not happen until next week...they want to ensure there is absolutely no infection in Maxwell. We were hoping we could extabate him today or tomorrow, however now that will be delayed depending on his nose issue.

I met with the ICU attending today and made my concerns heard (me finding the eye gunk, me reminding ENT to come, me noticing his weight was doing odd things, etc.) He is such a wonderful doctor with a terrific bedside manner...and he is now going to serve as the "coordinator" of Max's care (they typically rotate every two weeks, but he will now check up on things even when he is not "on" as attending) to ensure there is consistency and routine involvement with all of the different specialties. The medical team here is truly incredible...I just want them to be PERFECT when it comes to Maxwell.

Today has been an extremely disappointing and emotional day...I am so sad and so frustrated. Thank you everyone for your thoughtful emails and calls. Very appreciated.

SURGERY CANCELLED

Surgery has definitely been cancelled for tomorrow. In addition to the eye issue, an increase in his white blood cell count was discovered.

It will be rescheduled when we learn more about his possible infection. Thus far the studies have come back negative. However, as they remind me a million times "this does not rule out infection...we only test for certain viruses...we must wait and see how he does." So we'll see...as you can imagine, I am quite disappointed and frustrated but very relieved that we caught this if indeed there is an infection.

*A special thanks to all the Treasury of Memories staff and customers for the wonderful, loving red hearts...such sweet messages! Eliz decorated the room as a surprise when I stepped out...looks so great! (It was particularly funny because we were in isolation this afternoon so Eliz was decorating in a gown and mask...part doctor/part decorator!) Max definitely has the best decorated room in the ICU. Thanks again.

POSSIBLY DELAY

So earlier today I am in with Max and I notice a little "yellowish gunk" in his eyes. I mention it to the nurse and she thought it was probably nothing. However, I have memorized every nook and cranny of dear Maxwell and can tell when something is "different," so I asked that we have the doctor look at it. (I felt kind of paranoid for asking, but thought what the heck...I already have a reputation around here for asking lots and lots of questions...might as well live up to it today!) The resident then brought the ICU Fellow, who then brought in the cardiac surgeon...and sure enough, it is of concern. Darnit! I was sooo hoping that I was wrong!

They are sending a "sample" to be tested and results will be in around midnight tonight. The concern is that it may be the beginning of an infection...and they definitely do not want him to undergo such an intense surgery with any type of virus. Even with the test, they won't know for certain that all is well because it takes time for the virus to grow...so most likely it will be a judgement call for the surgeon. He promised me they would make "the best decision." If we delay, it will probably have to be next week because they want to give Max a few days and make sure there isn't indeed any infection.

To put it mildly, the stress level is fairly high right now..."will we? won't we? will we? won't we?" And quite honestly, I am a little frustrated that I am the only one who noticed this. What would have happened if I had just kept my mouth shut or simply not noticed? Oh well...I guess that is why a parent's involvement is so important! We know our children best!

I'll keep you posted.

PREPARING FOR SURGERY...EMOTIONALLY

Wow, tomorrow is the big day...open heart surgery on my sweet lil' baby. Yikes. Quite honestly, I am a little numb about it...it is far too stressful to even truly feel the intensity, the gravity of the situation. So much can happen tomorrow and the upcoming days and weeks...yet all I can do is trust in the doctors and most importantly have faith that God is with Max providing him much needed peace, strength and comfort.

I am still sick which makes these days much more difficult. I have to wear a mask at all times in the hospital and even then I am nervous about spreading germs, so I keep my visits to a minimum. I was praying with Maxwell this morning (with my mask on of course) and reminding him of the hundreds and hundreds of loving people praying for him...wishing him the very best tomorrow. It amazes me how many lives Mightly Max has touched...how we are all reminded to live life to the fullest and be truly grateful for all of our blessings. It is so easy to get caught up with day to day activities and be stressed over minor issues...yet here is this amazing little guy fighting for his life each and every day. And all during this, he manages to be incredibly sweet and adorable! How incredible is he!!!

Tomorrow will be a long and intense day...to say the least. Fortunately both of my moms, my sister, and a few friends will be here to support me and Max. Wewill do our best to keep everyone updated throughout the day.

Thank you everyone for all of your thoughtful calls, emails and cards...each has truly touched me and provided me much needed encouragement. Please rally up your prayer chains...I know I have asked before, but this is now more important than ever. Thank you!

PREPARING FOR SURGERY

The doctors decided not to extabate Maxwell this week so that he can rest up for his surgery. With the help of morphine and adavan, he is comfortable and not fighting the ventilator. It was a tough choice...I wanted him to be extabated for his own comfort (and for mine) but we didn't want to risk anything going wrong (i.e. a Max "episode") and have to delay his surgery.

He is gaining weight, but unfortunately he has also been retaining a lot of fluids too. His face the other day was so swollen he could barely open one of his eyes. The predicament is that he can not be retaining fluids before surgery (because they will be pumping him up with additional fluids during surgery)...but the lasix (which is the best diuretic) can add to the calcification of his kidneys. We had stopped using that drug a month ago when they found the kidneys were really taking a hit from it. So right now we are using small doses just to help Max eliminate better.

The surgery is still planned for Tuesday. I met with the cardiac surgeon yesterday and he reviewed the surgery in detail, as well as any possible risks and complications.

He will go in at 7 a.m. and the surgery will probably begin around 9 a.m. There are approximately 2 hours of "set up" with the anesthesia team, as well as getting Max set up on his lung and heart bypass machine. Basically they stop the heart with the help of medicines and must drain the blood from the organ. Meanwhile they connect his body to the bypass machine which will move the blood and oxygen throughout.

As far as the risks, he was a little more optimistic about the outcome than I have been told by my cardiologists which was good to hear. The weeks following the surgery will be very important because that is when complications (if any) would arise. I feel very confident that everything is going to go very smoothly.

I am worried right now about Max staying healthy for Tuesday. I had to head home last night because I caught a bug (fever, sore throat, etc.)...and obviously it's not a good place for a sick person to be with the cardiac ICU patients. As soon as I started feeling bad, I wore a mask but I was still worried about spreading germs so I finally decided to leave. It was really horrible to leave Mr. Max...but today I feel even worse, so it's a good thing I left when I did. The nurses have promised to give him lots of extra TLC in my absence.

SURGERY SCHEDULED

The cardiology team met this morning, and Max is now scheduled to have his open heart surgery on Tuesday, November 8th. His heart defect may be more complicated than originally diagnosed. The month after surgery will be very, very important for Max's health and recovery. Most problems arise during that time period.

I am obviously very emotional and nervous about this upcoming surgery, however, I know it is something Max needs and we must move forward.

Since his surgery is a week away, we are hoping that he can get extabated for a few days. First they must wean him off the heavy sedation. He has been looking around and much more alert the past 24 hours, which is reassuring. Hopefully I will be able to hold him in the next few days...it's been a week since I have been able to snuggle with my lil' guy.

Please keep my sweet Maxwell in your prayers. As his poster (yes he has a million posters around his room declaring how wonderful he is - the staff gets quite a kick out of them) on his ICU door says, "Please get me better very soon...I have much to accomplish in this world." How true that is...and how much he has already accomplished in his brief four months.

HAPPY HALLOWEEN FROM "ROBOT BOY"

This year Max has decided to celebrate Halloween as "Robot Boy." It's quite a confusing (and quite depressing for Mom) costume and it requires a one on one nurse and a lot of sedation to maintain the "appearance." We hope your costumes are slightly less intense and allow more movement! :)

Max did wear his "My Little Pumpkin" hat yesterday (which everyone loved!!!) but I didn't have my camera with me! He couldn't wear the rest of the outfit because of all of his IVs and attachments. A volunteer made a super fun Halloween quilt for his crib too. (The volunteers here are so wonderful!)

INTUBATION AND SURGERY

Currently Maxwell is still intubated and will remain so for several more days. He is having strange episodes of low oxygen saturations and high blood pressure that are concerning. Until these are resolved, he will not be extabated. He is fairly heavily sedated because of being intubated...but at least he is comfortable. However, it is breaking my heart that I cannot hold him right now. It has been three days since I have held him and it feels like a lifetime.

The urine test came back positive for infection so they are retesting that again this evening to confirm those results. Antibiotics will be changed accordingly. He is also getting a blood transfusion in the next hour. He lost a lot of blood the other day when they were starting an IV and they are thinking that his low O2 sats are partly due to that.

We had our Care Conference today focusing primarily on the upcoming heart surgery. Despite cardiology's initial wish for us to wait until he is bigger and stronger, the team has decided to move forward because of some changes in his lung and heart status. We are HOPING the surgery improves his breathing and better regulates his body. However, the cardiologist continues to warn that we might not see dramatic changes afterwards. We simply don't know at this point what the outcome will be.

Eliz and I had a lengthy discussion with the cardiologist earlier today about the risks associated with surgery, especially on such a small baby. Quite frightening. No mother wants their baby to have open heart surgery, but we have to trust in our team and the surgeons. I agree that something is going on differently with Maxwell and I am hoping that this eliminates at least some of the issues.

The surgery will happen within the next two weeks. I think it will happen the later part of this upcoming week or the beginning of the next. They first want to ensure he is "stable" and that we have not missed anything, i.e. infection. Once he is stable, they will coordinate a day with the surgeons. The surgery will take approximately five hours.

Tomorrow I will be attending the funeral for sweet 6 year old Timmy, who departed his earthly body Monday evening, after a vicious battle with cancer. I took Elizabeth to meet him and his family on Wednesday and we came upon an empty room. It was a devestating afternoon. Please keep lil' Timmy and his loving family in your thoughts and prayers this weekend.

I have seen so much sadness and loss in recent months, I know I will never be the same again. Yet while it can be extremely depressing, it also allows you a clear, fresh view of life and puts everything in true perspective. I know Max...and all the wonderful, inspiring children and families here at the hospital...have changed me for the better. I had the strangest thought tonight as I was putting away my breast milk. In some odd way, I feel like my life has been training me for this....to be Max's mom, his advocate, his strength. Even though there are days when I feel like I just cannot do this, I look at Maxwell and am amazed at his spirit and just know I was destined to be his mommy. He is absolutely incredible.

Please keep my lil' man in your thoughts and prayers...he has a tough couple weeks and months ahead. Thank you everyone!

***And a special thanks to those of you who have sent such fun gifts and cards to Maxwell. Sorry I have been late on my thank you notes, hope you understand! Once Max is no longer "snowed" on sedatives, I'm sure he will love all his new toys and clothes...thank you, thank you, thank you!!! :)

MORE STABLE BUT STILL VERY FRAGILE

Max's fever has subsided thankfully. It started to slowly drop through the night but then spiked again. He has been heavily sedated which seems to be helping his respiratory rate and comfort level. However, his blood pressure is very erratic which is confusing everyone.

The initial test was negative for respiratory infection (which is a huge relief) and we are still waiting on results from the others because it takes 24 - 48 hours for the cultures to grow.

They attemped to slightly wean him off the ventilator this morning, however, he immediately dropped his oxygen to very low levels. It was a very scary moment. The doctors are stumped and are debating whether it is his heart causing these episodes. We just met with the pulmonologist, who I trust very much, and he is inclined to encourage cardiology to quickly move forward the heart surgery. Nobody wants to do the surgery at this point because of his size and weakness, however they believe he will continue these episodes until something is fixed. After the heart surgery, we will decide about the tracheostomy. The pulmonologist thinks that is likely what Max will need. Cardiology is coming by today and we are having a care conference on Friday to discuss the plan.

Right now the plan is to stabilize Maxwell. They are HOPING they can wean him off the vent within the day. It is completely heartwreching to see Max like this...it feels like we are back three months ago. He has IVs coming out of nearly every part of his body, he is completed "snowed" on sedation and he has massive bruises on all over his beautiful body due to all the failed IV attempts.

Fortunately, my sister Elizabeth (and lil' Tom Tom) was able to run down here last night and be with me through all of this. She and her husband have done a wonderful job supporting me during this very lonely journey, and I am eternally grateful. It's crazy to have all of this pressure and responsibility on my shoulders alone. While I think I have a very good sense of all that is going on, it is very, very helpful to have someone else be involved in the discussions and be here to support me and Max.

Thank you too for all of you who have sent loving, encouraging emails and calls...very appreciated. The next few days the doctors and I must make some very important decisions and your prayers are much needed.

VERY SICK - MAX IS INTUBATED

Max is very, very sick. Within an hour of being transferred to the ICU, his fever continued to rise and he was very lethargic even during procedures.

His fever has reached 106, which is frightenly high for anyone and particularly such a weak little baby. There was an emergency intubation (insertion of breathing tube) to help him breathe and hopefully bring down his temperature. As I write this, they are putting in yet another line to his chest area for a specific heart drug. I had to step out of the room basically because there are that many nurses and doctors in there. We are in "isolation" until more of his tests come back.

I am sorry I am not able to call more of the family members individually, but I simply don't have the energy. I will do my best to give you an update soon. If you must know sooner, you can reach us in the PICU.

BACK TO THE ICU

Yep, Max is heading back to the ICU....again. The past 24 hours he has been major fussy and his oxygen requirements have increased. Then today he stayed worked up for hours...and sure enough he started have tachycardia (high heart rate), extremely high respiratory rate and quite a fever. So immediately our room became filled with numerous doctors, machines...the works. He got another chest xray and another EKG...results are pending. Right now the IV nurses are trying to get a new IV in him. I stayed at bedside for the first three attempts but I had to step out a few minutes and catch a breath. He actually was handling it pretty well, but it is very tough for a mom to watch her lil' guy get a needle stuck in his head time and time again. Today has been exhausting (and we were up pretty much all night)...and once again pretty scary.

The ICU doctors and I just met and he will head up there within the hour. They need to bump another kid to make room for Max. Hopefully he will calm down and he will return to the floor within a day or two. Keeping my hope that this is just Max getting worked up. They were referring to Max as having "thin ice disease." Basically since his body is pretty weak he is on "thin ice" and if anything little goes wrong with Max, it becomes major because he has no reserves. Let's hope nothing serious is brewing...

PRAYER REQUEST
Max needs prayers for comfort and peace...and prayers for the doctors that they can decide on a good solution to heal Max's heart and lungs. We need his breathing to SLOW DOWN and his body to grow in length and weight!!!

Additionally, please keep some of our new friends in your prayers: Jacob (28 week old preemie desperately needing a liver transplant but is not eligible b/c he is on a vented trach), Madison (diagnosed with a genetic disorder similar to CHARGE and undergoing a heart surgery as we speak), Timmy (terminal cancer and we need a miracle...quickly), Ben (another preemie with CHARGE who I met online), and sweet little Ryan, the nephew of one of my best friends (a month old baby suffering from major heart complications). Lots of wonderful little boys and girls who all deserve lots of happiness, joy, comfort and peace...thank you for keeping them all (Maxwell especially!!!) in your thoughts and prayers.