Saturday, May 20, 2006


Well Maxwell just finished one of his coughing/choking/needing suctioning spells and appears to be on the way back to la la land, so I thought I would use this time to post a quick update. (There is no point in laying down until I know for sure Max is ok and truly going to stay asleep for at least a little bit of time.)

Today was one of the roughest days I have had since Maxwell has been home. I'm exhausted, completely exhausted. Last night was another night of nearly no sleep and I just about lost in the middle of the night. Actually I think it would fall into the "losing it" category. I simply cannot go on like this any more.

First thing in the morning I put calls out to my insurance company to plead our case as well as more calls out to the various agencies that are working on a waiver for us. But unfortunately we are not sure if any of it will work...but there definitely is a renewed full court press. I couldn't help but cry on nearly every phone call explaining how tired and frustrated I was. I thought I had truly toughened up, but when you are working on no sleep...the emotions take a life of their own!

Yesterday afternoon I had to take Max to his doctor's for a weigh in (good news on that front - after being pumped and pumped with extra calories, he finally put on a few ounces) and the nurse could tell right away something was wrong. I didn't give any effort to smile and nearly fell asleep when we were waiting in her room. She and the doctor quickly put their heads together and called the public health department to stress the need for some home health care. They are really trying to push that as the sole caregiver, I cannot be expected to provide 24 hour care for such a medically fragile baby...especially when he is sick and requiring even more care than usual.

They were so incredible with me. I lost it with Max's doctor...I just started crying and crying about being worried about Max and his breathing issues, does he need a trach, will he ever get better, will he ever be able to breathe normally, why isn't he growing, why, why, why???? Then of course when he asked how I was doing...I cried and cried again.

One of his suggestions was to perhaps put Maxwell in the hospital for a night to give me a break...and that made me cry even more. I would feel like such a failure. He stressed over and over again to me that a kiddo like Max could be in the hospital nearly every day of his life and it was me and the full time care that was able to keep him out. And what happens to Max if I end up really sick or simply unable to go on at this pace? He said he was surprised I hadn't broken down earlier than this. He gave me a wonderful pep talk...he's amazingly supportive of both of us. But I still walked out of there feeling so down about our situation. Something must change.

So I'm not sure what to do. I didn't take the hospital option yet...I wanted to try another night at home first. And fortunately tomorrow night I was able to hire a friend of a friend who is a licensed nurse to come watch Maxwell. (I'll just add that to my growing list of medical expenses and hopefully the judge sees to it that the other party pays his share.)

Additionally, Max's doctor prescribed two additional medications to help move along this congestion. He reminded me again how severe his chronic lung disease is and that this is what is going to happen pretty much every time he gets really congested. Max simply doesn't have the physical strength or airway structure to move things along quickly.

I'm about finished with this post and it also sounds like Max *might* be staying asleep (as soon as I wrote that...he started coughing) I must run. Hopefully these meds kick in and provide some relief for Maxwell, and hopefully we come up with a good solution for in home care that provides some relief for me.


ang said...

Oh my gosh..Amy, my heart bleeds and breaks for you right now..You and Max continue to be in my prayers..Please know that this too shall pass, and you will have gained such strength from this experience. Amy, I know it's hard to see that far ahead, but hold on to our hands and we'll lead you the way until you can find the light, and strength to go it alone. It's hard, but remember what I said to you earlier about you and Maxwell..He knows you are doing everything for him. He's your cheerleader and lifts you up, just as you return that to him. You were made for each other. Give yourself permission to have a bad day. I pray you have gotten some sort of rest as I write this, and after I write this I will finally go to bed for the night. Remember We love you and can't wait for the day to meet you face to face.


Lisa W. said...

Amy, I'm sorry you're going through a rough time. I can't imagine what you're going though, doing it on your own. I don't think I could've done it without G. I hope you got some sleep and I hope you get some real help very soon. Don't feel like a failure if you need to take the hospital option, you DO need to keep yourself healthy...
Hugs from Canada...

Mary Karr said...


I can hardly "see" to type because of my tears. I wish so much that I were there to help you. I have no medical skills but I give really good hugs.

That you have all of the responsibility for Maxwell with no help makes me so angry I cannot even discuss it.

I pray that Max is feeling better and that you can get some rest soon. A good night's sleep makes for a much more positive outlook.

Love, Mary

Kerry said...

I'm so sorry things are so rough Amy. Like the doctor, I'm surprised you've held it together this long. You're an amazing woman, and an awesome mom for Mighty Max. I'm praying that the insurance company will see their way clear to approve some help for you.


Cedie L Mock said...


Know that I am thinking about you and praying that you get the help that you need. You and Max are both such an inspiration! Keep your head up.

Jennifer Mock- Cedie's mom :-)

Moriah (zandysmom) said...

Oh Amy, I'm praying for you. You are so amazing to be doing this all yourself, you are giving Max so much and he's thriving because of you. I wish I was closer, I really really do. You need someone to just let you take a breather. Hopefully the insurance companies or someone somewhere will understand that you need a little support.

elle said...

the drs r right u need soem time for you can oen of them go with you to talk to them bout how hard it is for you hugs ellen