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."