Finally, Dana has been transitioned to a home vent called Trilogy. She was previously tried on the other called LTV but she unfortunately didn’t do well with it. This Trilogy, they say, is more suited for her because it gives her breaths the moments she breathes.
We are going home with it. And it is so compact that you can place it inside a backpack whenever we will go outside. I pray that she does well with this one. Her pressure support has been raised up and she seems to be breathing and working hard but hopefully, she settles down. If she finds it hard, then we are going to go back on the ICU vent again and try her back on the Trilogy for 2-3 hours again until she gets used to it. But, if she does fine, we are just going to get a good setting where her blood gases will be normal/fine and where she doesn’t retract much when she breathes.
Staying in the hospital, unfortunately, makes it hard for her sometimes to go with the plan. Like for example, last week when she had an infection on her trach. It was so bad that they had to eliminate all factors that will cause fever and discomfort. She wsbstarted with antibiotics but she still runs fever on it. They had to take-out the PICC line which ended up her being stuck all the time. Initial blood cultre was postive but peripheral was negative, so it may be just colonized. When the blood cultures came out negative, they had to put a new PICC line. But her veins were so bad that the team couldn’t see a good vein for that and the attempted central line on the groin was unsuccessful as well. They had to go to radiology to place a PICC but she still has to have a temporary access. They has an IO placed on my baby. I came rushing to the hospital and found it on her. They were also getting an EEG on her to make sure that she did not have seizures.
I am so glad that week is over and with the lines she had, she was able to get her antibiotics. Eventually her fever subsided and she felt better. They took the IO access the moment radiology placed PICC on her.
But that week, we had to go up on a lot of things just to rule out factors that contributes to her agitation and restlessness. They had to go up on her methadone and valium and her vent settings (pressure support, PEEP, oxygen). They had to go down on her calories to 20kcal and the rate. But like I said, now we are going back to where we where before she had fever.
So, we pray she will do well on this home vent. It will help her breathe well while we go home and wait until she is ready for her spine surgery. She will go home for a while and be a baby. That will be really something I will look forward and hoping for. Prayers move mountains.
We are really thankful for the team who are taking care of her, finding ways to get her what she needs. They were calling us 3am last week and I know everyone was on their toes to get her an IV access. They just don’t know how grateful we are for them not giving up on finding solutions to very difficult situations. Our prayers are continously answered as we see them.
So we are still here though, and it will be Dana who’s going to determine and tell us when she is ready. She is a fighter, but we just don’t want her to struggle. We get to be asked every about her and we believe that she is getting better. We are making baby steps in this hospital but that works for her fragile body.
We continue to pray for her healing and we continue to ask for prayers. We are thankful to all who have helped us go through this far. It’s not easy, but we are thankful that we get a lot of support. In this hospital, the nurses, doctors, palliative nurses, social worker and chaplain make sure that we, as parents, are able to take care of ourselves and are able to think what we need for her at home. There are days that are rough, and it may come again but we know that things will be better.
So for now, let me go back to where Dana is at right now. We pray she does well on this home vent. We claim it in God’s name.