Tuesday, April 04, 2006


Many of you have emailed me asking the latest on the nursing situation...I still don't have any final answers unfortunately. The hours have been cut back some and possibly completely as of next week. They are currently reviewing our situation.

Last night I didn't have a nurse and while I didn't get much sleep, it was fun to sleep in the same room with him and listen to him breathe. (And when he would wake up he would play with this toy that sounds like a bell...so it sounds like he is "ringing" for me to come play too!)

And it's amazing what you can get done at 4 in the morning! But really, I did manage to get some sleep since he is so much more stable right now. Not sure how it would be if he was sick because then his O2 sats are all over the place and he needs suctioning frequently. The one odd thing right now is that he has bradycardic episodes more frequently than before...last night the monitor never stopped beeping.

We'll see. As much as home nursing is soooo incredibly helpful and it will be difficult without it, I do look forward to having our home once again be just "our" home and be on "our" schedule. I know we will find a way to manage...there may just be a rough transition. I (with hopefully some help from the other parent) will have to hire someone with nursing training who can help with Maxwell so I can run errands, sleep occasionally, etc. -- all things you cannot do with a "medically fragile" kiddo. I am confident it will all work out...what is most important right now is how great Maxwell is doing!!! :)


Drew said...

Hey Amy,

I hope they resolve the nursing situation and see that it's necessary. It is very cute when he plays with his mobile when he wakes up. Give that boy a kiss for me.


Anonymous said...

I think it would be ideal if max had help from his other parent in this matter. To relieve you and alternate when emotional/physical batteries are running low. However, from reading here and many other sources that doesn't seem to be possible or probable. I will keep praying for a resolution in this nursing situation. Keep smiling Amy and Max..

Kirstin said...

I'm sorry to hear about the nursing situation. I hope they resolve this soon for you as it is needed. I wanted you to know I was thinking about you and Max and sending you some positive energy...Love, Kirstin

alisen barlean said...

i really hope they realize that the nursing is a great thing for you and max. but, know that if you need ANYTHING you can call on me ANYTIME!!! i would love to help any way that i can. thanks for all the talks and i am always an open ear. give that cute little boy a big hug and kiss for me! love, ali

Steph said...

Hey Amy,

Whether you have nursing help for another week or another month, it's certainly crystal clear to us after visiting that you ABSOLUTELY need to have some established relationships with trained people who can be with Maxwell on a regular basis so that you're able to run errands and get some rest. This would also be crystal clear to anyone that stays with you for several days to see exactly how your days go...perhaps the judge and other parent need to do this.

Love you,

Kelly said...

Hi Amy,
Im so sorry youre having to fight over things like this. In this day and age you shouldnt have to deal with stuff like this. Unfortunately insurance companies see their patients as a dollar amount and not a human being.
Id be willing to "donate" my time to come watch Max if/when you need a break and Im not working. Im a CNA with lots of experience in pediatrics and general medical/surgical practices. CPR certified and all that ;) I currently work at the maternity center.
If youre interested email me, Swanie78@comcast.net :)
Elizabeth and the rest of the TOM's girls can vouch that Im not a weirdo or anything...lol Well, not any weirder than they are!