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.
Tuesday, December 06, 2005
Monday, December 05, 2005
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!
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!
Sunday, December 04, 2005
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
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!?!?!
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!" 
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."
