Thursday, September 29, 2005


Max had somewhat of a rough time after surgery...and it was quite unnerving. He was very uncomfortable and agitated, but fortunately he found comfort with the help of some meds. He loves his Adavan.

However, even after sedation, his breathing continued to be VERY fast (160 breaths per minute...the highest it has ever been). He has a new set of docs in the PICU so they were questioning me on everything...especially "does he really breathe this fast???" They did a chest xray and sure enough his lungs appeared "wet" so they gave him some extra meds to rid his body of the extra fluid. It appears to have worked so far, since his respiratory rate has decreased in recent hours. He was super hot upon arrival too and quite red...and sure enough he had a pretty good fever...but that too has gone down a little throughout the evening.

We'll see how the night goes...hopefully in the morning we will be discharged from the ICU and return to the floor.


I just met with the surgeon...and the report is good! He said we may have some "tweaking" to do in the future, but he feels optimistic that we may be "over the hump" with his choanal atresia. It would be an incredible relief to have the nose issue behind us, but I have a feeling we will have a few more trips to the OR. I'll worry about that later...right now, I want to focus on today's success.

He is in recovery, and we have not been able to see him, which of course is killing me! So excited to give my lil' man a big kiss!!! :) He will soon move to the ICU and we can visit him then. He was successfully extabated but will spend the night in the ICU for observation.

Thanks everyone for all of your thoughts and prayers...God was certainly helping the medical team today and helping Max be strong and brave!

Wednesday, September 28, 2005


Yesterday they attempted a "dilation" at the bedside while Max was sedated, and it appeared to have been successful. However, today's exam showed they still were too narrow. So Max will be heading back to the OR tomorrow (Thursday) to have his nasal passages reopened. They will laser the soft tissue and scarring and possibly drill more of the surrounding bone. We are hoping that stents do not have to be reinserted, but it may be necessary. He will have to have general anethesia and be reintubated (breathing tube). Both of these present complications...and quite simply are not fun. HOPEFULLY, he can be extabated soon after but if not, he will return to the ICU. Every time I have to "sign off" for surgery and be warned of all the risks...never easy to hear and agree to, but we don't really have a choice.

On another note, his cold really hit him hard for a few days, but I think he is on the road to recovery. With such a narrow airway, the congestion was REALLY impacting his breathing. He was breathing in the 100s...often in the 130s, which is just exhausting. Fortunately I was able to suction a lot of mucus out of his nose (he hates this, but it makes a BIG difference) throughout last night. After that I was able to reduce his oxygen slightly. Still isn't where he was as of Friday, but he is making improvements. A cold is never fun for any baby, but for a baby with such critical health issues as well as significant airway obstruction, it REALLY poses problems.

He seemed to feel much better today, and he enjoyed a lot of alert time with me, Elizabeth and Mom. He had some fun time in the swing and did really well with his sucking on my finger and binky...however, his oral aversion will take a hit tomorrow with being reintubated. Oh well, we will keep working on it! I was just so happy to see him not completely miserable! It just breaks your heart to see such a little guy struggling so hard to breathe.

Please keep Maxwell in your prayers tomorrow as he returns to the OR. Let's pray for a very successful surgery and a speedy recovery. We appreciate your love and support.

Monday, September 26, 2005


Poor little Max is not feeling well and has been coughing all day with lots of congestion. His oxygen needs increased dramatically today too, which is discouraging. They are going to run some tests on him in the morning.

I met tonight with the pulmonary specialist...and we discussed the different short and long term options for Mr. Max. Max is proving to be very confusing for everyone right now and we are just waiting for him to show us one way or the other what he needs.

There are so many decisions to be made...and as the only "involved" parent, it is resting all on my shoulders. That is really hard and quite frustrating! I want to make sure every decision is perfect for Maxwell...and as much as I love my family and friends, it's not the same as a fellow parent who would share in the decision making. Such odd timing for a divorce! I have had many mothers in the hospital say there is no way they could do this without their husband...but what else can I do??? This is the situation we are in, and I'm determined to provide the love of not only two parents...but a million more! Max deserves no less.

On a lighter note, Max and I took a brief nap together was so cute to stare at each other while we dozed off! Actually he dozed and I continued to stare at his gorgeous angelic face...and listen to his sad little coughs!

That happened all night too...and I have a feeling we are in for a repeat again tonight. So sad to see him struggle! He already has such a small airway that any congestion really makes it hard for him to breathe.

Lastly, I am happy to report that the medical team has responded VERY well to my concerns about lack of organization. We are meeting together tomorrow to discuss our future plans. They really are an incredible group of men and women so dedicated to Max's's amazing. I just want to make sure he is ALWAYS on the forefront of their mind...coming up with great ideas and incredible solutions!!! :) THANK YOU CHILDREN'S HOSPITAL!!!

Off to bed...hope Max is able to sleep peacefully and comfortably and feels better VERY soon!