Friday, March 17, 2006


Max is still not feeling well. I am relieved that the problem is indeed a "bug" and not a malfunction of his Gtube and Nissen, but I am so sad to see Max so sad! He has a low grade fever (100) the last two days and he is coughing like crazy with all the extra secretions.

I have had to suction his nose (doesn't drain like a "normal" nose, so I have to "drain" it for him) numerous times, and we both despise that process....but you do what you gotta do (that's what I try and remind him during the suctioning!). Max is getting so much bigger and stronger that I feel like I am in a boxing match when I am trying to suction him. He swings at my hands and grabs the tubes like's frustrating but quite funny too!

He is slowly being reintroduced to the fortified breast milk, and fortunately the vomited has not returned. Hopefully by tomorrow he can be back to full feeds and not have too much of a setback with his weight.

He is quite lethargic but hanging in there. Quite a trooper he is. :)

Today we got the dreaded call about our home nursing...we are being cut off next week. I knew it would happen soon but we were hoping to get out of the flu season first. I have no idea how I am going to handle all of his care on my's difficult enough some days when we do have a nurse at night. And now I will be doing that care and coordination on little sleep...should be interesting. I know that we will find a way (there is no other choice!) but I am quite nervous. Not sure what I am going to do.


Dylan (and Kristy) said...


I'm so sorry to hear about the nursing situation. How frustrating and truthfully, it makes me mad!

Let me know if you want me to come hang out for a night to give you a little help. I'd love the sleepover!

Much Love,


Ginny said...


I found your blog via Ali Edward's blog. Mighty Max is adorable. You are doing a great job. Hang in there.

My son was born nine weeks early. He spent 40 days in the NICU. I still feel sad, almost bitter, about how my friends and family didn't really acknowledge what a difficult time it was for me and my husband. I'm glad that you have a good support system.

Please keep us posted on Mighty Max's condition.


ang said...

Amy sorry to read that Max is still not feeling well. In a way I was hoping it was a "small touch" of the flu and he would have enough antibodies to fight this bugger off, and it would help build up his immune system.

I'm keeping you in my prayers.

Can some members from your church help volunteer to be in the home during the night to give you nap breaks? Or Family? If they could come over 2 or 3 nights a week and just be in the room with him and wake you if his buzzers go off, you could get some rest.

Saying prayers a solution is found that makes you both happy!

Anara said...

I'm having a hard time with this one, and you know what I'm refering to.... I wish you two were not so far away then I could come over and help you out, you could teach me about nursing since you have gotten a degree in it via living in that world for so long and not taking anyone's word for things and reachering it on your own.
I keep hoping that (someone) will come around and do the right thing, untill that happens I will try to think of a way to help. I am praying for Max and you.
Love, Anara

Sara B said...

Ugh! I can't believe this! I'm so, so sorry Amy! Insurance is this country freakin' sucks! Let's talk later...I'd love to help out anyway I can...


Ruthie said...

Like so many others, I wish I could be there to help. There has got to be a way to work around this insurance thing. I'm sure that someone out there has the answer so that hopefully you won't be doing this alone for long or at all.
Take care-