Back to School... more testing

First  on the left is a picture of Brinleigh on Sunday Night.  Notice no oxygen.  The next picture is her early Monday  morning newly intubated before her MRI scan.  It is a great example of the swings that happen with Brinleigh.  One minute wow we are making progress the next you are shedding tears as she is back on a ventilator.

So here is the scoop on her testing this week.  Her MRI came back with good news.  The 'tumor' is not a tumor at all just a mass that has no effect on her..  Since it has not affect they will not scan for it again.  As they said it is something that bugs them because they know it's there but it does not hurt or affect her which is great news.  They have done a more extensive hearing test but as of now they do not have any results back yet.  Tuesday they did a more extensive swallow test and found nothing new.  She aspirates on the thin feeding but not the thicker.  That is also good news.  Last night they did a sleep study on her so stay tuned for those results.  Friday they will to a PH test for her reflux to see the acidic levels of the reflux along with how far up from her stomach it goes.

First craft project

Another test... another setback

Just as we think there are no new tests to put Brinleigh through they find one.  She still has her purple spells and bradys so they continue to be stumped.  So one of the nurses gave some thought to Brinleigh and mentioned that she seems to have a cough at times.  So they did what is called a swallow test and found that she is aspirating.  The test found that as she eats and pauses there is a small build up of fluid at the back of her mouth.  When she starts to eat again the reflex that closes off the trachea doesn't close properly so then a small amount of food/liquid goes into the lungs which is not good.  The concern is if allot of liquid gets in the lungs it could cause her to choke, suffocate or give her pneumonia from the bacteria.  They did find that if they give her thicker liquid she does not aspirate.  So the treatment for now is to thicken her breast milk and let the reflex develop and test again.  It is a significant worry because we all know liquid in the lungs is not a good thing.  This may be why they have struggled with her oxygen levels and who knows if it will help with her purple spells.

Today she gets her eye checkup.  Soon they will redo the MRI and take more 'slices' so they can better see the location of her tumor and if it has any effects on her swallowing or her hearing.  They will also look closer at her hearing with the MRI.

The setbacks are starting to take a toll on Dustin and Carrie as they so want to get Brinleigh home it is very hard to have more tests find more issues for Brinleigh which gives greater concerns for Brinleighs current and long term health.

Looking Up.... let's hope it stays this way

Brinleigh still has her moments but they are getting better.  I even get to post a picture today of me (Grandpa Roberts) holding her.  She was well behaved for me as I put her to sleep when she was suppose to be eating..  Thanks Brinleigh for behaving for me.  She seems to be sleeping better and in not so much pain.  The kidney stones are very small and so they are letting them pass naturally. I seems the removal of all fortifications and the protein has helped her also.  She still has stuff to overcome before going home.  She has to still get her oxygen under control, she has to get her eyes cleared and she can't have what they call her 'purple spells' where she holds her breath.

They have checked Brileigh's head, heart, internal organs eyes, ears.  All in the last few weeks.  It seems there isn't much else to look at.  They all look pretty good.  Of course there are some things they find but nother major that is not already known about.

Thanks for some time with Brinleigh.

4 Months Today!

Yesterday was a rough day for the Jenkins family.  It seems Brinleigh had a nurse that does not know her tendencies of being... well.. just being Brinleigh.  Which means she can be fussy and ornery.  Brinleigh was irritable and ornery so the nurse assumed she was in lots of pain with her stones.  So she continued to drug her to the point of being totally knocked out.  When Carrie arrived at the hospital she was like... umm.. what happened to my baby she looks terrible.  She was very patient outside with the Nurse or so she says.. but was not happy and very hurting inside for Brinleigh.  Brinleigh was so out of it she could not eat and her oxygen levels dropped very low because she was so heavily sedated. She was having a hard time breathing on her own and her oxygen levels were very low.  It was scary.  It was very hard for Carrie and Dustin to see her so out of it.  Thank goodness for one of her primary nurses to be on Brinliegh last night to try to get her back on track and the large dosage of drugs out of her system.  It appears for now they are just going to let the stones pass since there are just allot of small ones.  They forgot to get the kidney team with them yesterday so Carrie had to remind them about it so that should be done today.  One of the nurses said she has never seen Kidney stones in a baby and the staff said they have only seen it a few other times.  Way to go Brinleigh you just keep everyone on their toes.  You are truly a unique little girl.

They also checked her eyes which she hates and all looks good they said but they will check them again in 2 weeks.

Today they will also do an Echo on her heart.  It is part of the process they need to do in preparation for sending her home.  However everyone is very nervous because it seems when they do something they find something new.  She has had this done before when she was real sick and everything looked good.  It's been awhile since then and we are all very nervous about it.

Nothing is simple with this sweet little angel.

Update: To elaborate on the difference in a nurse that does not know Brinleigh yesterday and those that do.  The Nurse on the day shift yesterday gave Brinleigh 3 doses of Morphine between 7am and 12 pm.  The Nurse last night gave her one her entire shift and she has had one so far today up till about 1:00.  The Nurses last night and today are part of her Primary care giving Nurses.

When they said they were doing the Echo they said they weren't looking for anything in particular.  I guess that was not the case they were looking for any signs of hypertension.  The preliminary findings are good.  This ride has not been fun for a long time now.

The Answer to the Mystery.....

For sometime Brinleigh has just been crying never sleeping and always irritable.  Recently her heart rate and breathing had dropped when she gets mad and holds her breath.  It was real bad last Saturday.  So they decided to do some X-rays and ultrasounds and they found she has kidney stones.  These were most likely caused from the fortifier and protein that has been added to her breast milk.  So for sure no more of those and Carrie has to take calcium out of her diet also.  The kidney Dr will determine the course of action sometime today we hope.  Meanwhile she is getting medication for her pain.  Up the roller coaster hill we go again.

Maeleighs Grave Marker



So very tender .. Nicely done Dustin and Carrie



Another week goes by

It's been about a week since the last posting.  Brinleighs tests have come back negative on her stool except for some that take time to 'grow out' to see if there are any issues.  She had her feeding tube taken out early last week which means all her feedings and medications are now being done orally.  She continues to hold her breath and get mad which causes her to brady which is not good.  She about gets to the stage of passing out before she will breath again.  Obviously this is not a good thing.  They are meeting today to review all her medications.  This means more potential changes which is for the good but still hard because you don't know how she will react to the changes.  Interestingly the Dr. that looked over Brinleigh and Maeleigh when they were born comes on shift at Primaries this week.  We wonder what that reunion will be like for everyone.  We expect it to be a good reunion nothing bad.

In Isolation... again

Picture is of Carrie and Brinleigh a couple of cute witches for Halloween.  One of them isn't too happy can you guess which one?

Later last night they put Brinleigh in isolation which means they are wearing gloves and gowns to handle her and she is back to having a dedicated nurse.  She was very fussy and has been have some very runny stool.  So they took some stool to test it to see if there is any issues.  We assume bacteria again this brings back bad memories.  Uggggg.......

They put some protein back in her diet a couple days ago which could be the cause of the loose stool.  Lets hope.