May 26: Makenna's First Trach Change

 

 

This week has been hard.  The trach that they put in Makenna (a shiley) was too big for her.  The inside of the trach is 30mm and x-ray showed is was resting on the branch of her lungs and a major nerve.  Every so often her stats would drop and she even turned blue a couple of times, very scary.   Giving her a boost a oxygen or repositioning the trach a little would help her come back.  But this would happen about every 1.5 hour.  It was hard to leave her.  The nurses can't be there all the time and we had to hurry and find someone a couple of times.  They ordered a custom sized trach for her, but they didn't know when it would come. 

 

The first trach change was scheduled for May 22, but we ended up waiting until May 26.  The surgeons did the first trach change and did it while mom and I were away.  The custom trach never came so they had to put in another trach that was 30mm long, but it was a different model, a bavona.  That seemed to really help.  It is still too long, but she only seems to drop about 1-2 times per day instead of every couple hours.  We are still waiting for the custom trach... but the new trach is much better.  We have also been able to wean her oxygen requirements down little by little.  We have also been able to increase her feeds.  She is being fed by an oral feeding tube, but is totally on breast milk and formula, no longer TPN through her IV (or PIC line).  She is not getting breast or bottle fed at all because of her nasal passage.  Think of trying to suck on something while your nose is plugged.  She is now up to full feeds for her weight.  We don't know yet if she has gained any weight....

 

Ken encouraged me to get out of the hospital and doing something else.  So on Tuesday, my mom and I took the morning off to paint.   I painted on location which I had not done in a long time.  My mom and I passed this barn a lot on our way to the hospital and I loved the morning light on it.  It was a hot sticky day, but we positioned the car so that I had some shade.  I didn't have my easel, so I used the baby seat to prop up my painting.  We hung the painting by Makenna's bed.  I titled it "Walking with Makenna", which is of course the inspiration for this blog.