We talked to the doctor after the cardiologist consult and Brinson will be treated for Cor Pulmale with Nitric and maintain O2 saturation between 95 and 100% If she still needs more help and she is ready for cannula, they put her on viagra. Yes the same drug but it will be used for what it was developed for.
Brinson will also be taking Zantac for reflux.
Next week she will get another echo and EKG of heart to get a good baseline.
She is doing pretty good on her feeds, but not well enough to move up.
Lisa got to hold Brinson this evening and I will post photos later. She was a bit squirmy but tolerated it just fine. Mommy is very happy.
Last night Mommy and Daddy got the proud privilege of seeing Brinson cough out a lugee and then proceed to not breathe until being suctioned & bagged. Not very fun.....hopefully we don't do that again.
The good news is she has not an episode of not breathing since last night at 8pm.
Her oxygen requirements are also way down....from 50-60% last night down to 35% this morning.
I talked to the doctor this morning and he is not going to pursue the nitric if her oxygen requirements are this low. He is still concerned with the thickness and is consulting with a cardiologist today and we should get to talk with him/her.
There is possibility she just has a head cold, but it does not reduce the fact that there is thickness on the right side of her heart. Hopefully the cardiologist will figure this out.
Thank you for all your prayers and keep them coming.
Brinson is not doing so great. She is stable, but has had several non breathing episodes and is a real touch me not.
So either her ASD is causing a thickness of the heart because of having to pump blood twice OR she has Cor pulmonale which causes a thickness of the heart because the lungs are stiff and therefore the heart works harder.
Either way Brinson has a bumpy road ahead of her and will need a lot of thoughts and prayers.
Brinson seems to be pretty stable, but the are keeping a close eye in case their is an infection developing. Most likely it was due to congestion from a nasal and throat irritation (cannuals, respirator tube, feeding tube...etc) , asking Brinson to hold her temp in a cold room and probably the increase of holding from once a day to 4-5 times a day. All of those things probably tapped her reserves until finally she caved.
Brin got an echo of her heart yesterday to make sure something major is not going on. We hope to get the results today.
They did start feeding her pedialyte (vitamin water) yesterday; 6cc every 3 hours; given all at once at a beginning of the 3 hours. Brinson seems to be tolerating it pretty well.
On Monday they also checked again for the weakness in the bones and she is better now and does not show the weakness anymore.
She is still on CPAP and we hope to get her back in a incubator soon so she can get some rest and get caught up.
Yesterday both Daddy and Mommy got to hold Brinson. What a treat. There is a lot of guesstimating going on around when Brinson will go home and go to Level 2 NICU (where they focus on getting you out the door).
Mommy and Daddy were a bit freaked by the comments of she could be home in less than 1 month (1st week of July) and maybe even on her original due date (June 26th). She is doing so well. When they put her on nasal cannulas she was using 1L of O2 at 100% and now she is on a 1/2L. Today we will see her blood gas and know how well she is really doing.
Also they still have her in a warmer without the warmer on. She is bundled up. The jury is still out on whether she can continue to tolerate the environment without a warmer. She may go to a crib or an incubator...not sure.
To go home she needs to be breathing on her own (check) and regulating her own temperature without a heater (maybe check) and drinking 8 bottles a day (no progress yet).
We will start feeds 7 days post operation (Tuesday). Based on her age and size they are assuming she will take like a duck to water and accelerate quite rapidly.
Who is tickling my head?
Where are my teeth?
I don't know where are you teeth?
Watch the video, the gumming is pretty funny. We think she is just hungry.