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!
Monday, November 07, 2005
Friday, November 04, 2005
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.
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.
Tuesday, November 01, 2005
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.
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.
Sunday, October 30, 2005
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!)
Friday, October 28, 2005
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!!! :)
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!!! :)
