Day 51 in the hospital

November 9, 2012

I have tried several times to add pictures but am having a hard time with the crappy connection here at the hospital.  I will add a lot of pictures as soon as I can, even if I have to load them one at a time. 

3 Months 3 Weeks and 3 Days old…..looks like Ameir will have his 4 month birthday here in the hospital also.

We were supposed to be going home next week on Tuesday, but the nursing agency had someone quit so we have to wait another week.  New release date set for November 19, 2012.  Ameir is really doing well.  He has gained a lot of weight now that he is not struggling to breathe.  Today he weighed in at 10 pounds 8 ounces.  He weighed 7 pounds 4 ounces the day he was admitted (9/19/12). 
Yesterday we had our 12 hour pass.  My mom and sister came down here to spend the day with us.  We had no nursing intervention and were all on our own.  I was nervous, but Ameir had a perfect outing to the main campus and I even held him while I ate my lunch.  We gave all his meds, breathing treatments, and gave him his bath.  We also got a bed in the Stable Vent Unit on the 8th.....Yay for graduating from the PICU. 
Tomorrow my sister is coming down here and we have a 24 hour pass at the attached hotel.  Kind of like a real world experience.  We have to do everything as we would at home and even call 911 if we have a problem. 


November 3, 2012

Adrianna comes to visit.  We took a walk with Ameir to the cafeteria and spent the day visiting. 




Notes from days in between

Post surgery recovery has been quite uneventful other than the fact that Ameir has not been able to be weaned off the vent.  Day 1 after surgery he was put on the trach mask but after an hour he was not moving any air so he had to be put back on the vent.  We tried several more times to sprint him which is taking away all the set breaths and he had to start all the breaths on his own and he did really good.  Once the vent was taken off he would start to have chest retractions and get a little uncomfortable.  I was sat down and had to make the decision to continue trialing the trach mask or let him grow with the vent and eventually outgrow it.  I chose to stay on the vent because I want Ameir to be comfortable and not struggling to breathe.  We are anticipating Ameir being on the vent anywhere from 6 months to 2 years.  Based on how good he is growing we are hoping it is the lesser number of the goal.  


October 16, 2012 

Today Ameir turned 3 months old.  I am kind of sad that it was spent in the hospital. 


October 4, 2012 

Surgery day.....Today Ameir had heel cord lengthening to finish his club foot correction.  His last (hopefully) plaster cast was removed early this morning.  He had his G-tube (feeding) put in yay for no more tape on his face.  And he got his trach to help him breathe.  It was planned for Ameir to have the heel cord surgery first but anesthesia was not able to intubate Ameir from above (his mouth) so he had to have the trach first. After speaking to the ENT doctors it was discovered that Ameir had a little extra tissue on his epiglottis and an anterior voice box.  Intubation was impossible in the OR via ET (mouth) tube, even by the most experienced pediatric anesthesiologist.  This confirmed the need to have an airway for home was the best decision for Ameir.  Had we had another emergency at home it could have been our last.  The trach also meant another whole week of being unable to hold my baby.  Babies with fresh trach's are pretty sedated for a week to allow healing.