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!!! :)
Saturday, November 26, 2005
Friday, November 25, 2005
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! :)
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! :)
Wednesday, November 23, 2005
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!
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! :)
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! :)
Tuesday, November 22, 2005
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!!!
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...
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...
Monday, November 21, 2005
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...
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.
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!
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.
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.
Sunday, November 20, 2005
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!
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!
