WEEK IN REVIEW

Sorry I haven't posted for some time. I have received many emails wondering what is going on...thanks for your concern. This week has been absolutely crazy busy!

Monday was the temporary divorce hearing. Despite the unfriendly nature of the divorce, I was so hoping that we could at least be civil on issues relating to Maxwell and his care. Unfortunately that isn't happening and it just adds frustration to this already painful situation.

Tuesday was our clinic day at Children's Hospital...and what a day! Yikes! This was our first time to be away from home for more than a few hours. It took me and the nurse nearly TWO hours just to get all of his equipment, medications, etc. ready for the day.

Our original schedule was cardiology for extensive post-op follow up tests, endocrinology, and audiology. Then because of some breathing issues, I pleaded to add in ENT and Pulmonary at the last minute. Fortunately those specialties know us well and were very accomodating. They are wonderful!

Cardiology: This was our main focus of the day. The various tests indicated that overall the heart is doing well post surgery, however, there is a pressure issue that raised some concern so they will be following that closely. Unfortunately his weak lungs are contributing to that problem and only time and growth will fix his lungs.

Endocrinology: Max has not been responding great to his hormone treatment thus far so we began another series of shots. Hopefully we will see a better response this time.

Audiology: We got our personal set of hearing aides (our prior ones were loaners) and had Max fitted for another set of ear molds. Because of his age, he grows out of his molds about every month.

ENT: The nasal passages are still open, but one has narrowed somewhat and will probably require a surgery in the near future.

Pulmonary: Max has a respiratory infection right now, so he is dealing with labored breathing and high O2 requirements...but his lab tests are satisfactory. The pulmonary staff was all very excited to see him and how well he has done at home! We ran into lots of his nurses and everyone was so amazed with how good he looks! And they were all so excited to tell me that they had seen some of the TV coverage...our lil' celebrity!

In addition to the appointments, Max had to have some blood work done because of his breathing issues and then he was spiking a fever during his EKG.

So the day was absolutely jam packed and crazy. What was the most difficult was keeping up with all of his meds and treatments despite the busy appointment schedule. I would be in the waiting room trying to do all of his care, while keeping him occupied and happy AND also filling out paperwork.

At one point in the day, I looked at Max and just laughed out loud...and said "Sweet Max...I would only do this for you. This is an absolutely crazy day but I would do it a million times again for you. I hope you know how much your mommy adores you!!!" We were quite a sight! I had three backpacks...his oxygen tank, his kangaroo pump (feeding) and his diaper bag (jam packed with meds, diapers, etc.). And his stroller was completely filled too with all of our medical notebooks, more medications, heart and oxygen monitor...the works. Yes, we were quite a sight. And because he wasn't feeling well, he was wanting to be held. So I am holding him, carrying the three backpacks, and pushing the stroller all at one time. It was quite comical...people were getting a kick out of us!

What made the day even funnier was that in all the confusion that morning, I forgot to bring my pump...so I went about thirteen hours without pumping...yikes! For all you breastfeeding moms out there, you know what I mean! I felt like I was doing a Dolly Parton impersonation! :)

Then on the way home it was pouring down rain and the traffic was bumper to bumper. Max's alarms start going off and his 02 tank is nearly empty. Yikes, I can't get to the exit quick enough! Finally I do and I am at a rest stop climbing over seats to get a new tank attached, give him his meds and calm him down.

So needless to say, the day...from start to finish...was a little on the trying side! :)

That night was no easier unfortunately. We had a nurse but I still was unable to get much sleep because of Max's worsening health. He started to spike another fever, required even more O2 than earlier in the day and was coughing like mad. I talked with the pulmonologist and we held off on going to the hospital based on my wishes. And once again Max prevailed, just like he did a few weeks ago when the doctors thought I should bring him in. Basically this time they said we were doing all the right things at home and if I felt comfortable continuing the care at that level, I could keep him at home. Of course I said I will do whatever it takes to keep him out of the hospital!!!

So hopefully today Max remains stable and does not worsen. I think he is taking a turn for the better but we are still concerned because of the respiratory issues.

Whenever his respiratory issues arise, I get very concerned...and especially right now with RSV, flu, etc. going around. I spent a good chunk of yesterday dealing with the insurance company and the doctor's office because he was due for his third RSV shot nearly two weeks ago. However, everyone is pointing fingers at each other and finally I said "I don't care who has faxed who, who has called who...I want the shot for Max NOW. I will pay for it if I have to!" (It's a $1300 shot so you have to jump through a lot of hoops for it.) I just got a call from the doctor's while I was writing this post and it looks like we will have approval today...finally! Bad timing when he is already sick, but we need this done pronto.

Ok, I think this post has been LONG enough! Lots to write about these past few days and I just have not had the time! I must run but one last thing...thank you everyone for everything! Max and I are so deeply grateful as always for your love and prayers. We were surprised on Tuesday and Wednesday with some deliveries of VERY thoughtful, loving gifts...thank you, thank you, thank you everyone! :) Such fun!