Readmission
3 months. 4 weeks, adjusted.
Here we go again. I was so naive to think Marco would come home and be completely healthy. After almost 2 weeks at home, 2 doc visits, 2 eating/speech therapist sessions, and 1 overnight ER stint for a false alarm wheezing situation, Marco went on a hunger strike. Back to the hospital we go.
I suppose it isn’t truly readmission, as we are now at a different children’s hospital near our home, instead of the NICU… but close enough.
He was doing well the first week. Eating, sleeping and gaining weight as he should. He had a little trouble with the bottle (some signs of distress like gulping, poor latch, wheezing) - nothing so bad that it prevented eating, however it was still recommended that we see a speech therapist who specializes in all things swallowing/throat/etc. with the goal of helping Marco improve his skills - suck, swallow, breathe. At first I was super skeptical - he was gaining weight, he was peeing, he was eating (messily, but eating). He was a dream child who slept overnight and barely cried. Turns out a lot of sleeping and little crying isn't always a great thing. As we came into the second week he started to eat less, more frequently. He would fall asleep quickly after an ounce or so and it would become very difficult to get him to finish a bottle. By Thursday last week he started sleeping 4-5 hours, wake only when we bothered him, and ate a very little bit before falling asleep again. Not good.
Friday we took him in to his PCP who confirmed - he wasn't getting enough and we had to go immediately to the hospital to get a feeding tube.
So what is wrong with him? It could be simple - he is exhausting himself eating because he is inefficient (sucks too many times for little result) and/or doesn't know how to breath properly while drinking. Or it could be a long list of other problems. The doctors have spent the last few days running a large number of tests and consulting with every team available to check off the boxes. To determine what's wrong by order of elimination we've spoken to the following teams (p.s. we are so lucky, and privileged, to have amazing insurance and live near a top notch hospital):
General - overall team providing the big picture and hopefully putting together the puzzle pieces
Speech - swallowing - did another swallow study (x-ray while he eats). We did one in the NICU, but they wanted to try again to get more details. Similar to what was found in the NICU, they determined he was not asphyxiating (milk going to the right place) and he did best on a slightly faster nipple. Our therapist we had been seeing put him on a slow flow nipple as she thought there may be signs of asphyxiation, but turns out a slow flow was actually really hard for him. Maybe a reason he exhausted himself?
Cardio - heart - initial look showed a slightly enlarged heart. They did a follow up echo for a detailed look, waiting for doctor review/analysis/report
Neuro - brain - initial look showed there was a larger gap than normal between the skull and the brain. Have yet to speak to the nuero team, but they are on standby and are expected to consult this week.
Pulmonary - he has a history of wheezing when he's stressed or after eating, why, if not asphyxiation? Also, he has some fluid in his lungs again, like he did in the NICU, so they started him back on a diuretic. The diuretic helped tremendously in the NICU to get him to eat, so we're hoping it has the same results.
Genetics - limbs and head both appear slightly disproportionate when compared to body - they are going to do a detailed skeletal review and also ordered a deep genetic test but it will take a few weeks to come back. At this point they don't have a specific diagnosis in mind, but with all the little things that are off, they want to see if there could be some explanation by way of a genetics disorder.
Metabolism - related to genetics - is his body processing food properly? Same genetics test will answer this.
.....
Bright side to all this craziness is that after a few days on a feeding tube Marco is back to himself - even better. He is super alert, awake for long stretches, crying when hungry, etc. I hate that he is back in the hospital, but am so so so happy to see him thriving again.
We are going to be discharged not knowing all the answers, with Marco on a feeding tube. Not ideal, but this will give him time to figure stuff out while removing the pressure. No need to worry about hitting his calorie count, or waking him. He'll eat what he can through the bottle and we'll finish with the tube. Ideally increasing bottle feeds slowly until he's ready to go 100%. We will be trained in tube care (how to place it, take it out, feed him, clean it, etc.) and be sent on our way.
Certainly not the way I planned to spend my maternity leave, but we'll make it through.
Comments
Post a Comment