Thursday, February 02, 2006


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 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!


Ruthie said...

Sounds like Max is keeping you on your toes! Who needs Curves and exercise when you're carrying all that gear! :) You wait, there will be a calm period around the corner for you both. Just hang in there til' then.
Take care-

kate said...

I don't know how you keep up with everything, Amy. You are amazing, and I'm sure Max knows this by now! Our love and prayers continue to be with the two of you as you get to be together at home. Hope Max gets over his latest case of the sniffles soon, we have had ours here for about a month now!!
Take care.
Lots of love and hugs, Kate :)

Linda said...

I don't know you but I have been reading this since I read about Max in the Charleston Gazette. I cannot believe Vic is so heartless. And to think I voted for him in the last election. He will never get another vote from me or any of my friends. I tell everyone about this web site and they are just amazed at his behavior. How could any man just totally write off his child this way is totally unbelievable. My husband's ex wife did the same thing to her daughter years ago and I can't believe someone else is so heartless. I am amazed at the strength you are showing through this. You have really earned my respect and I hope Max can get well and live a long happy life.


Kerry said...

Wow Amy - you and Max have had quite a week! I was wondering how your hearing went on Monday, and how Max is doing. I'm sorry to hear he's not been feeling well. I'm also sorry the details of your divorce aren't going more smoothly. My prayer continue for you both.

Drew said...


Wow. Reading your blog sometimes makes me feel guilty when I think I've had a rough day!

I'm sorry to hear the hearing and proceedings are going as they should. That sucks! As if you and Max don't have enough to worry about.

I hope Max is feeling better soon.

Take care,

judy said...

Amy, I check your blog everyday at work to see how Max is doing. I also ask at Curves when I stop in to see of they have heard anything that you haven't posted yet. I keep you both in my prayers so that God will give you strength and Max healing. I feel God has something wonderful in store for Mighty Max. Bless you so much for being such a great mom!!!

ang said...

your strength continues to amaze me. You continue to shine, and it's showing in Max. He's learning to quickly fight back those negative little bugs in his body. Keep fighting the good fight MAx!! keep it up!!!

I was sad to read today about the trouble you continually going through regarding your ex. But I have a feeling this will be your year with Max right by your side.

Please keep up your positive attitude during this and DON'T let soon to be ex (stbx)get you down. In the end Max will know what kind of man he is. No one will have to tell Max. He will KNOW himself. It's is stbx's loss. He doesn't know what a great boy he has in Mighty Max.

Continue to fight the good fight Max!!

Hugs to you both

Steph said...

Hey Amy -- what a week!! I'm picturing you and Maxwell at your clinic day...woah! As someone else mentioned, that's quite a workout you had! Great that you've been able to keep him home even when the sniffles hit...a true testament to your smarts and devotion as a mommy. You rock.

I'm sorry to hear about the divorce proceedings. How totally unfortunate that you have to deal with a person who doesn't know how to be a human being.

Thank you to Linda for spreading the word to other voters in West Virginia! Keep up the good work!

Anara said...

WOW!!!! I'm tired and have a back ache just from reading about your day and I think I'm getting a headache too......

YOU ARE AMAZING!!! I have stated that many times before, but I truely mean it. God gave you a heart as big as the hole out doors, a back stronger than an iron rod, and the patience of Jobb.
Believe me, Maxwell is very aware of how much his Mommy Loves him, that's one reason he fights so hard. I love you two, lots of hugs and kisses from Auntie Anara.