All this stuff smashes my face, but I am still a cutie pie!
Brinson has 2 different infections in her blood. She is getting a wide spread of antibiotics because they do not know what kind of bug it is yet. They are not sure if her central line will have to come out. The central line is used to give her nutrition, blood and medication. So it is pretty important. If it has to come out she will need new lines.
She also has an obstruction and will need to have bowel surgery. The timing of the bowel surgery depends on how she is reacting to the antibiotics. The urgency is brought on by the contrast not moving through her system.
Also she will likely have another ostomy for 8 weeks after this bowel surgery due to the fact that that they will be doing her surgery 2 weeks early. The bowels require rest or they can be damaged and will heal with a stricture or blockage and then you start over again.
In the meantime, Brinson is doing ok. She has had a few episodes of not breathing, but not too bad and she is still on CPAP. If she gets to a point where she is working to hard to breath they will re-intubate her (go back on the vent/respirator). But she looks good, she is awake looking at Mommy and Daddy and sucking on her pacifier. So I feel like if we can get the bowel un-obstructed then she can fight anything.
So I am calling for all your thoughts and prayers for Brinson.
I have had a very very busy week. One of my customers needed help and I have been so busy that sleep became a priority and I am working on my day off. On top of that I also have poision ivy and it is very angry (big bubbles). But enough about me....it is all about Brinson!
Brinson has been doing ok. Her followup on her heart showed much improvement (no hear thickening and the ASD is smaller) Awesome!!!! Brin also is is just over 5 1/2 lbs. Unfortunately I was unable to visit with my daughter yesterday but Mommy, Meme and Nana did.
Lately Brin has developed a viral infection (maybe) that has caused her core temperature to be elevated (last night and today) up to as high as 101+ and she has red splotchy skin. The have drawn blood and taken urine...based on how she acted they think it could be a urinary infection. She is on antibiotics and is acting better than early this morning.
Mommy and Meme are up there today and I will follow after my 5pm conference call.
On a very sad note, my Uncle Jack passed away yesterday. He was in a motorcycle crash at a motor speedway. He loved motorcycles (racing, riding, buying, fixing...etc). We are so very sad and we will miss you Uncle JACK! Our thoughts and prayers are with Aunt Pat and my cousins Kathy & Jennifer.
The CT was normal. The Neurologist should see her tonight and do an overall assessment.
The EKG was done, but no results yet. The echo will be done tomorrow.
The gut does show some improvement meaning the contrast on the xray shows less in the small intestines; like we have movement. Still not enough improvement to feed her and we still have to wait 3 weeks if surgery becomes necessary.
Otherwise Brinson is humming right along....her oxygen requirements have been as low as 28% today. At 400pm she was sitting at 31%.
The gut Dr came by to see Brinson and they have decided to wait 3 weeks. No food during this time if she does not pass the contrast. The contrast is given in liquid form during the upper GI so you can see the intestines on an x-ray.
It is possible the stricture can stretch if the stricture is where the operation was.
If it does stretch and she passes all the contrast they will repeat the study to ensure no surgery is necessary.
Also the EEG came back and it was normal......YEAH!!!!
I was able to stop by at lunch at see Brinson. She was sleeping....which is good. Dr. Hernadez was at the bedside and was able to give me a full update.
The good news first: - Eye test had the same results. Still watching the left eye, but no changes. - Her upper GI allowed something in her system to start moving because she had 3 diapers yesterday evening.
The not so good news: - Even though we have movement, it is not enough and they believe she has a stricture (narrowing of the intestines). The narrowing will need to be corrected with surgery. Dr. Minkes will see Brin today and let us know how long (could be up to 8 weeks from June 3rd, previous procedure) before we can do a surgery.
They have completed the EEG, but no results yet...except that her hair is curly because it has some funky wax in it from the electrodes they put on her head. The CT of her head is at 2pm. The neurologist will come tomorrow and review all above test results and let us know his thoughts.
Brin will also have a follow up on her heart with an echo and EKG.
Brinson is having a big day today. She is getting an Upper GI test to determine if she has a stricture or blockage in her intestines and then a neuro consult.
In ~36hours prior to 1030pm last night she had not had a major episode....which is very good. The frequency seems to be slowing down. Also Brin continues to make good progress on her oxygen requirements (only 44% last night)
My take on this is, as soon as the belly is fixed and all the extra fluid is removed then the episodes will go away and we will get back on track.
Look at those eyes! At had been quite some time since we have seen Brinson this awake.
Daddy is talking to me
Mommy is talking to me...High Five!
I was able to capture this moment where Mommy and Daughter are looking at each other. Very cool!
Aunt KD and Nana put on a fabulous baby shower for Mommy. There were a number of friends and family in attendance including TBFC (The Brinson Fan Club) and several mother's that Mommy met in the NICU.
The Brinson Fan Club They had custom t-shirts on with "TBFC" on the front and web address of the blog on the back. Thanks guys, all the thoughts and prayers are much appreciated. They also gave Mommy and Daddy shirts. Zachary's Mom (Kim)
Mommy and Meme playing the diaper/candy game
Mom's left to right, top row first Kim (Zachary), Lisa (Brinson), Nancy (James) Jessica (Aubrey), Laura (Noah)
Look at the tasty cake
What a spread!
**Also, Brinson got a mystery gift sent to the house with no name. Anyone know who the Deco Bouncer is from?**