The big news is that we escaped having to insert a chest tube, at least for now. They increased his IV lasix and we are hoping that will do the trick. Also his oxygen was weaned from 1 liter to .5 liters and he's been satting at 97-98, which is great. He has been coughing a lot and had sort of a rough night, but we think it's because of the effusion. I've been asking for an immunology consult for about a week because of Drew's infection and they keep putting me off. I finally called our immunologist from UCSF yesterday and she gave me some advice. She said that she likes to put her immunocompromised patients on two antibiotics to make sure they have adequate coverage and that she would have infectious disease look at his wound if it didn't look better by Monday. After I told the docs here that I called my immunologist, they finally consulted the one here. She actually has privileges at UCSF and is going to look up Drew's old results and she is supposed to see us today. They did some blood tests last night and they might decide to give him IVIG depending on the results.
Yesterday Drew's buddy Jonah came to visit and they had fun together. Jonah especially liked how Drew's bed could move up and down. They also visited the library together. Grandpa Mark also came up to stay for a few days and Drew had fun with him too. He was in a pretty good mood yesterday until about 5 when he was acting pretty tired. He fell asleep at 7 and slept most of the night, aside from coughing fits. We had an awesome nurse last night, very type-A, just how I like them! She even measured how deep Drew's wound is and it is 1 cm. It will be nice to have a number to compare it to later. That's all for now, I'll post an update later today after rounds.
Drew visiting with Carly
Drew sleeping sideways again
Mommy and Ava got matching princess necklaces
Drew hanging out with all his dinos and his favorite snack
At the hospital library with Jonah
Ava riding Drew's bike
Drew checking out the gift shop
7 comments:
As they say in my country mazel tov on all the good news. can we just nursenap the nurse from last night and make her Drew's permanent personal duty nurse?
Love to the lovies....al
My heart is singing with the news that Drew is having good days and you sound so much better, too. I love you!
Mom
OH...I'm SO glad you had a fabulous night nurse...that makes ALL the difference!!
and the immunology consult. LCPH doesn't like to gives consults in other services...I've begged and begged while we were there. Let me know how your consult goes there and who you talk to because I was going to ask for one next week also (just shoot me over an email). We met with someone in December...but, he wasn't very helpful...and I felt like he just brushed me off and didn't take my concerns about Isaac seriously.
When are you going home???
I'm checking into my MOTEL (urrghh) on Tuesday...if you're still there...email me your room number and we'll swing by and see you!
And...does Drew have a remote control car or airplane?? He'd have fun with both of those while stuck in bed...he could chase you guys, the nurses...MAKE A TARGET RUN!!!
I think about you guys everyday...and hope you break out soon!
Love,
Kathy
"Hi Drew,
This is Jacob. I love you all day and I hope you feel better. I love you way way up to heaven. I hope you come home soon."
Love,
Jacob
yay! lots of good progress, and info on the things that are keeping your stay longer. and how cute is jacob's comment? such sweet boys you all have. my only problem with this post is the JINGOISTIC picture of the gift shop. just exactly why is dan holding a flag? it's clearly been too long since my last visit. love!
I'm so happy you called your immunologist. You would think when a child with DiGeorge develops such an infection that they would of called them in already. I'm just glad Drew has such a good mommy to take good care of him. Your awesome Andrea!
GREAT job calling his immunologist..and what a great doctor for getting back to you on a Saturday. And, of course, great job on escaping the chest tube! It sounds like he has recovered enough for the mom to take control and help make a lot of the decisions. Just keep being bossy and they will get scared enough to do exactly what you say! I'm so glad to see that Drew seemed to enjoy his entire day. You guys rock!
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