Saturday, November 19, 2005


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.


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!

Thursday, November 17, 2005


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!!!


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 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!


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!!! :)

Tuesday, November 15, 2005


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.

Monday, November 14, 2005


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!

Sunday, November 13, 2005


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. 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.