Little Bella has captured the hearts of our family and everyone that meets her. We want to share her story with all.

Tuesday, April 21, 2009

To Trach or Not to Trach, That is the Question

The pulmonologist came and talked to me about the trach.  This is a huge decision.  So we went over the reasons the trach would be beneficial for her.

First off is that she likes to sit with oxygen saturations of 88, 89.  With her pulmonary hypertension they really want that above 95.  95 is almost an impossible dream for our girl. 

Then there is the fact that her CO2 level is chronically high in her blood gases.  When she is doing well we see upper 50s. But usually we hover in the 60s or even the 70s.  This is making her edge toward being acidofic. 

So with her pulmonary hypertension and chronic lung disease, he feels that giving her the trach will allow her to have the support she needs.   The hope is that her lungs will continue to grow.  He said that it’s not true that you grow more alveoli – they do grow larger with you for the first few years of life.  Being a preemie, she’ll have less to begin with.  Having DS, she’ll have fewer.

The trach may not be a forever thing (!).  His guess, at minimum a year.  He did warn me that it could be longer.  But he told me that she could not go home at her current vent settings.  They are too high for a home vent. 

He said that with her pulmonary hypertension being as high as it is, we might be looking at more serious meds in the future.  There aren’t that many available.   She is on two oral ones right now.  Some of the others are administered through a catheter that is placed in the body.  That might be our future.

Once we are stable again, we are going to go back to working on dieresis and finding the perfect balance of diuretics for Bella.  She is on two right now and they are thinking of adding another.

This won’t be a short hospital stay he told me.  That I knew.  Our last 7 weeks was for her heart.  This stay is for her lungs.  I’m hoping we are done with major body organs by then.  :)

4 comments:

CYNDI said...

Shelly,(and family) I want you to know how much we love you. I can't imagine the heavy burden you are feeling. I wish everything will happen so quickly, so that you can return home, but I realize that even at home you will have a struggle. I am so happy that you found someone to be with your girls and I hope you aren't feeling guilty. We are praying for you. I know that Heavenly Father is aware of you.

My name is Sarah said...

This is Joyce and John, We are both sitting here together reading about dear Arabella, holding hands and trying not to cry just like the day we were presented with the same tough decision for Sarah. We truly cannot believe how similiar their little bodies are. We so struggled with this decision, weighing all the pros and cons, yet in the end we knew it was best for Sarah. Although Bella and Sarah are so much alike, that of course does not mean you must make the same decision. We can tell you that once Sarah's trach was in place, her breathing was better almost overnight. It took a few months to get all the meds and O2 levels worked out, but we were at least able to be at home. We so understand. Our hearts and prayers are with you.

maniamam said...

So much going on. I love that you are in contact with so many others who have gone through similar things. We love you and continue to remember you in our prayers.
krystal

Heather said...

We continue to pray for you as you navigate through all these very complex decisions.Although Zoey has had a multitude of issues,this is one I cannot weigh in on.However,you are certainly surrounded by a wealth of information and insight from those that are not only caring for Bella on a medical front but people like Joyce and Sarah that speak from experience and the heart.What a blessing that is.Look at Sarah ... is she not amazing?Just as Bella will be.Stay strong Bella AND momma.We are praying for you all.