Monday, March 5, 2012

Jackson Day 12

Jackson NICU Day 12 (03.05.12)
Life of a NICU Mom - Looking up the information the doctors just told us (when the internet works)
Today was a busy day with doctors coming to see us. We arrived at Children's at 10:00 am and as soon as we sat down with Jackson the Nurse Practitioner came over to talk to us. Chris and I have been calling her "Nurse Mousy." Same Nurse who told us we would not be going home any time soon and we just haven't had a very good interaction with her since.

Nurse Mousy informed us that a Geneticist, Hematologist and Endocrinologist will be coming to see us today. She wants consults with all of them because of Jackson's low platelet count and low blood sugars. Over last night Jackson had a blood sugar of 24 which is the lowest he has ever had but after a bolus it came right back and stayed that way all day.

First to visit us was the Endocrinologist. She looked over Jackson's information and ordered a full blood panel if his sugars go as low as they did last night again. She seems to think that his low blood sugars are caused by stress. But other than that she doesn't think that we will probably see the low blood sugar again but if we do we have labs ordered so they will know why.

About an hour later, Nurse Mousy came back for rounds with her team of doctors. They have consulted the Cardiologist and decided to reduce Jackson's Propranolol by half to see if this helps his blood sugar.

Next to come over was Captain Bed Side Manner aka The Geneticist. We were lucky he had an assistant with him to "interpret." While he looked over Jackson his assistant went over mine and Chris's family medical histories. Once he was done, he told us that Jackson has no obvious genetic disorders and none of his history seems to fit into any genetic disorders. He is going to order the genetic test that Nurse Mousy wanted for DiGeorge Syndrome but doesn't see obvious symptoms of this.

The last consult we had was from the Cafeteria Lady. She was able to let us know what kind of sandwiches Jackson is going to like when he's 10. I kid, I kid. Sometimes you need a little laughter and making up names for our nurses and doctors was what kept us sane today.

The Hematologist never showed up today so we are hoping that they were just looking at Jackson's records instead of coming to see us.

We still have no idea when Jackson will be coming home. There have been no talks at all about home either. It's very frustrating to Chris and I but know that as soon as we can get the blood sugar under control we should be able to start having those conversations with Nurse Mousy.


Lauren said...

Sending lots of good thoughts to you guys today! Hoping that your future interactions with the doctors are more pleasant!

Mimi said...

He looks terrific today. What a cutie. I started following your blog from the TTGP board on the bump. I'm so sorry this is happening to you, but I keep praying that you will leave a stronger family because of it. My best friend also had a tough time conceiving (PCOS) and had a csec after a long labor. Her baby ended up with pneumonia and a week long NICU stay. Coming home without her daughter was awful, but now you would never know aside from all the positives she took from the experience. Here is a link to her story:

Polly said...

Hey guys, I'm Paula and Brad's neighbor - just wanted you to know that all of you, and little Jackson, have been in our prayers every day! Love the pics and the blog. Lizzie and I are believing for good progress for the handsome little guy - as soon as possible! There's no shortage of love surrounding him, that's for sure! :)

Anonymous said...

Doesn't it blow your mind how rude the doctors/nurses can be at a CHILDREN'S HOSPITAL? I always find a friendly reminder to them about the stress you're having and how this isn't a typical day-in-your-life like it is for them brings them around.

Good luck! You deserve to be treated with kindness and compassion during your stay.

The Domestic Princess said...

Thank you all for your comments!

Mimi-Thank you for the blog link. I read that blog post today while visiting with Jackson and it was nice to be reminded of the positives.

Polly-Thank you for visiting!

Anonymous-We have really had great nurses other than the one nurse practitioner. Especially one, Nurse Kim. We miss her and she's not back until Friday. Hopefully we won't still be at Children's but it's looking like we might be still.

Anonymous said...

The ‘life of a NICU mom’ picture made me misty eyed. Your concern is showing right through the photograph, but what got me is your son cuddled blissfully with his mommy. You can see in that moment all is right in his little world because mom is there. Best wishes and many prayers for a quick homecoming.