Friday, October 14, 2005


Just met with the pulmonologist and the doctors in the ICU...they are quite concerned with Max's rate of breathing. (Actually they said he is probably the "fastest breather" they have ever seen...not a good title to have.) They are hoping to extabate him in the next hour or so. He may very well fail and have to be reintubated. We should know this over the weekend. This will depend on his oxygen requirements, his carbon dioxide levels, and his rate of breathing. They will then give him 48 hours to rest and recuperate, but if he fails again...we will be seriously looking at a trachesotomy for Max. And if he has to have a trach, they will move up his open heart surgery. They want to do that surgery before they do the trach because of possible infection. The conversation was not an easy one to say the least. It was very disheartening and scary.

I understand that a trach can be wonderful for a baby...especially as we approach flu season, but there are so many associated issues as well. I'm just not ready to say I'm ok with that...such a big decision.

The attending ICU doctor was amazed that Maxwell is still growing despite his rate of breathing...that was definitely an issue today. When a baby breathes that fast, usually their growth is substantially compromised. Guess he enjoys mama's milk.

I am convinced he is not going to fail, but I could be wrong. He is a strong little guy, but he also has a lot of issues going on and who knows how this surgery impacted him.

Please keep sweet lil' Max in your prayers. We need him to be strong and beat the odds and surprise the doctors with how amazing he does.


Surgery went well...yea! :) So heartbreaking to see Max in pain and with his breathing tube AND with his large incision (yikes)...but the good news is that all the procedures went smoothly. He is on A LOT of pain medication right now.

He is in the cardiac unit of the ICU. Right now we are waiting for him to be extabated. We are HOPING it will be this morning. He is breathing on his own, but with the tube still in. The doctors are concerned because he is breathing so fast. These docs are not familiar with Max, so once I explained to them that "this is Max. Max breathes fast", they are feeling a little more comfortable. But first they want to run some more tests. I feel like I am always calming people down about his breathing! Every time he has someone new look at him, they are so surprised that he is ok with breathing that fast. Lots of work for him!

I met with the pulmonologists last night after they performed the bronchoscopy. There are a few minor issues they detected, but most importantly they determined his lung disease, due to prematurity, is slightly worse than they thought. This is one of the reasons Max breathes so fast...his lungs don't expand as well and as easily.

Many of you, who know my inquistory style, will get a good chuckle out of this. I was asking my usual million and one questions to the pulmonologist and then apologized for asking so much...and he said to not worry about it..."we love how interested you are...that's what is best for Max...," etc. He then followed up by telling me "you are developing quite a reputation in our department." How funny is that! But he promised me it was a very positive reputation and that everyone knows to come prepared when talking with me!!! He said they are surprised with how in depth my questions are...and have I thought about medical school. The nurse was in the room and agreed and said that actually I was developing that reputation in many departments. Mom and I got quite a chuckle from this. :)

The ENT said his nose is looking great...wide open! That is wonderful news! It is very likely he will need surgery again in the future...most likely several more times...but at least that is not an issue for now. YEA!

I haven't received the results back from the CT scan. This may provide answers on his hearing loss (is there a structure issue) and possibly give us an idea on his future balance due to the presence or absence of his semicircular canal. Quite anxious about the results! This is a study I have been begging to have performed for over a month!

I will keep you posted later today with his extabation status. I will be sooo excited to see his sweet little face without all the tubes. They are ALREADY using his GTube...just for medicine, but later today they MAY start feeds. WOW! And if all goes well, he might just be back in his room (which they have saved for him...he has quite a fan club on the floor) later today. The nurses are all excited for him to come back down! :)

Wednesday, October 12, 2005


I hope everyone enjoys these super cute photos! (For a better look, you can double click the photo.) He is getting more and more adorable every day, and I want to share his beauty with the world!

Love from Max to all of you!

We are working on "tummy time" to strengthen Max's neck and upper body. This is very important for babies spending a lot of time in the hospital and also for babies with CHARGE, who tend to have weak upper body strength.

This photo was right after Max's first successful attempt on his tummy. Successful because he didn't cry and he did make a few attempts at lifting his head. We have a long way to go, but he is making progress!

Max has found his tongue and loves it! So funny! As you can see here, Max enjoys sticking out his tongue and looks absolutely adorable doing so! The other night, one of the nurses and I had great fun playing a game with Max asking him questions and he could answer by sticking out his tongue or not...."Am I your favorite nurse Max? Are we beautiful Max? Are you and your mommy going to have a wonderful life? Are you going to be home by Thanksgiving?" We had many, many laughs playing this game with Max! :)

Not only does Max love his tongue, but he also loves his new mirror. When I put this in his crib, he just stares and stares at himself! I picture him saying, "Wow, I am as gorgeous as everyone says! Wooooweee!!!" I love seeing him enjoy his toys!

Max is on a 14 day course of antibiotics and every 2-3 days, his IV goes bad and they have to find yet another good vein...they are running out of veins! They often resort to his pictured here! Sorry Max...but I promise the medicine will make you feel better! (How can someone look soooo cute even with a big IV out of your forehead???)

He might end up getting a PIC line, which is a more long term and stable IV line, so he won't have to continue to be poked and prodded so much.

This is a favorite outfit of Max's nurses and doctors! Note the saying, "I love my nurses and doctors." Always good to kiss up to your son's medical team, right? Elizabeth and I made several personalized onesies for Max that get him lots of attention! Very fun! We are starting a guild to benefit Children's Hospital in Max's name...and we plan on selling these adorable onesies at the giftshop and other locations.

Tuesday, October 11, 2005


Max is really making progress on overcoming the oral aversion! So excited about this! The past two weeks he has really taken to my pinky finger as I have written about, but today the OT and I worked with him taking drops of my milk...and he did great! Everytime we gave him a drop around the pinky, he would suck harder. The OT wants me to work with him on taking the binky (which he doesn't care for) and then we can try with the binky trainer, which is a device that they put small amounts of milk through. Then depending on this, we might do a swallow study to check everything out. We are working very very hard with this issue! It's likely he will take a few steps back after the surgery because he will be intubated for some time, but hopefuly not for too long!!! So proud of you Max!

Oh well, Max gave it a try! He does really well off of oxygen when he is awake and happy, but get him fussing or sleeping and his sats start to drop. So we are putting the nasal cannula back on. He is sooooo close to being free of that...but just not quite yet!

His numbers have not gone down, which is discouraging. But I talked with the pulmonary doctors today and we are not going to "freak out" at this point. We are just doing the "wait and see" game.

Pulmonary is available and will be able to do the bronchoscopy, so the GTube and Nissen surgery is now a definite for Thursday!


Surgery is planned for Thursday afternoon at 5 p.m. They need to talk with pulmonary today to confirm the time works for them because they are also going to do a bronchoscopy on Maxwell for more information on his airway. Additionally, we may try to fit in a CT scan for more information on his ear structure. They try to combine procedures so the children...especially the "cardiac kids"... don't have to undergo anethesia too often. That will be quite an afternoon...getting anxious but also very excited! :)

Everyone gear up your prayer chains...Max will need a lot of extra love sent his way! :)

Gotta run...meeting up with another CHARGE mom and her kids for lunch. I have connected with so many amazing parents and children in the special needs community...very helpful and inspiring!

Sunday, October 09, 2005


Wow, Max is looking really, really good!!! :) Unbelievable really! AND I have very exciting news to report...he is OFF OXYGEN! His nasal cannula has been removed! This is the first time ever. One less attachment...YEA!!! :) He still has his occasional desat, but usually only when he is pooping, sleeping, or fussy. I am sooo impressed with my lil' guy! And actually still a little shocked! I hope this trend continues!

I am very excited for tomorrow morning's lab results. They draw his blood early Monday mornings (4 am...yikes!) and we hear the report a few hours later. This will tell us if his bicarb is going down. WE NEED IT TO GO DOWN BIG TIME! If it goes down, it will be a good sign that he is improving and that he does not need a trach. This is extremely important.

Please pray that Max has a successful surgery this week and he is quickly extabated afterwards and recovers quickly and easily too! Additionally, please pray that his body begins to release his carbon dioxide easier and the numbers come way down. I want him to come home soon!!! :) Barney and Shakespeare...along with the rest of Bellingham...are quite excited to meet the famous Mr. Maxwell! Shakespeare is getting his tongue all ready with lots and lots of kisses...anyone know how I can "Purell" my dogs???


This is Max "Robot Man" when he was having his EKG. And here is another of Max having his nebulizer treatment for his lungs. What a trooper he is!


This week Max and I found yet another way to connect...I just climbed up into his crib with him! In the past I have moved Maxwell to my bed, but he had two IVs in (yep, that's an IV right into his scalp that you see in the photo) so it was easier for me to come to him! Fortunately I am still small and flexible enough to make this happen! :)

Mom walked in and thought it was too funny so she snapped a few photos! I get into his crib about every day now, and it's great! We get lots of odd looks when someone first enters the room but it's worth it!

What was funniest was when the anesthesiologist came in to meet with me about next week's surgery. Max and I actually had fallen asleep so I was pretty out of it. Here I am in a baby's crib trying to have an intelligent conversation about Max's history with anesthesia and the possible risks of this surgery. Oh well! :)

P.S. You may notice the sign above his crib....yes, that's me telling everyone what to do! Max's visitors (and nurses!) have great fun reading all my signs...I have a million and one around the room reminding the medical team about HOW I want everything done for our lil' guy. It does seem to help!

P.S.S. I posted a photo on the "Special Prayer" entry of the actual prayer.