Wednesday, September 14, 2005


Remember the movie Groundhog Day where the day just repeats itself over and over? That is what I felt like yesterday. We had a good day, and as I wrote last night, we had a fun bath and swing time. He always has great "days." Then within a few hours, he started getting very uncomfortable and proceeded this way throughout the night. Finally after Tylenol and Ibuprofen, we calmed him down with Adavin (a sedative) at about 4:30 am. I don't like resorting to drugs but we cannot seem to comfort him when he is this upset. It is incredibly heartbreaking. I lose it every time this happens. First you are already exhausted because it is 2 in the morning and now your baby is crying uncontrollably...and nothing is calming him down.

It is so bizarre and truly has everyone confused. This morning in rounds, I said THAT'S IT...we have GOT to figure out what is going on. I pretty much demanded a series of tests, including an Upper GI and abdominal ultrasound, and the first begins this afternoon. So we'll see what happens...I am HOPING we can come up with some answer. The nurses and I are desperate!

Additionally, I have requested another "care conference" with all the specialists involved to get an overview of Max's status, different conditions and upcoming possible problems, as well as discuss the current "frantically uncomfortable nights" situation. As of the last conference, we had estimated he would be coming home in a month and that would be next week...and that certainly isn't happening unfortunately.

His IV comes out today after his 10 days of antibiotics so that will be good and we can once again increase his feeds. We have had to cut back on feeds because of the increased fluid level.

Many of you have asked what its like to sleep in Max's hospital's "different". Obviously I enjoy the amount of time I can spend with him and I am able to be completely immersed in his care, but you have to be "on" all the time. For example, this morning I went to bed around 5 am and woke up at 7:30 am to a doctor sitting on my bed talking to me. And even during those two or three hours of sleep, I am waking up every 20 minutes to Max's monitors going off and looking to see if a nurse is in the room or not...or should I get up, or is he the oxygen too high or too low? So yep, I am a little sleep deprived. I knew being a single parent would be exhausting, but this is way beyond what I imagined of course! I was practically begging Max last night, PLEASE MAX PLEASE relax and let's go to sleep...PLEASE. He didn't listen.

Anyway...Eliz and the boys are coming to visit today so Max will have another fun day...and hopefully "Groundhog Day" does not resume again this evening...but I have a feeling it will be another "Sleepless in Seattle" night. Like all the movie references? Alright, I have to go get a BIG latte and get ready for the rest of the day!


Steph said...

Hey Amy -- goodness...what is going on inside that sweet little guy's body? You're so awesome for demanding all the tests and another CARE conference...Max truly has the best mommy/advocate he could ever hope for. You rock girlfriend.

So glad your ankle is on the mend...bummer about the doc!

XOXO Steph

Jim said...


I told Jackson (and Thomas but he did not seem to be paying attention)to tell Max how much they are loking forwad to him coming home and going on wlkas together (with all four dogs) and going to the play park together. Let me know if the message gets delivered.


Anara said...

I will pray even harder tonight that Max gets some releaf from his night boughts and you two can get some much needed rest!!!!!
I hope the doctor's will see something they may have missed up to this point that will get Max truned around. Know that I along with everyone are thinking of you two and talking to Heavenly Father a lot!!!!!!......

Love ya, Anara XOXOXOX

Drew said...

Hi Amy,

Sorry to hear about yours and Max's rough nights. Hopefully, the docs will figure out what's going on from all the tests you make them do!

Glad to hear your ankle is doing better.

Take care,