Busy week and looking forward

Sorry for the lack of update this week - it has been a busy one. Soon after I last updated they once again lost their peripheral iv line on him and decided not to keep sticking him.  So they switched several of his meds to being given through his feeding tube directly into his tummy and some they just turn off his other drips to run.  They continued going up on feeds (now at 29, the actual goal is 33) and down on his dilaudid (thanks to my pharmacist sister for waiting 20 posts to tell me the spelling was wrong :)) drip (off at 8:30pm last night).  They also stopped giving him TPN, which is his iv nutrition. And early in the week they switched from Zantac to prevacid for his reflux.  Well one of those changes really threw a wrench in our progress because the last 3 days he has had horrible days in terms of throwing up.  Prior to that we had almost 2 weeks where his throwing up was fairly controlled or at least lighter than it had been.  

 

Backing up a bit...Every 2 weeks the attending physician changes and brings their own beliefs and experiences to the table, which is good in some ways and bad in others.  Monday brought a new attending (our 4th in the nicu alone...we have been here too long), who from what we have seen seems more aggressive than the others.  So lots of changes happened this week, we have a baby that is super sensitive to changes, and we can't really pinpoint what dug the hole a little deeper.  On top of this he is not gaining as much weight as they want.  To cloud Lalo's picture a little more his vomiting could be caused by many things - the fact that a cdh baby's digestive system is different because it grows in their chest not their abdomen, that it could be malrotated when it is put back in the abdomen during surgery, as a side effect of one of his numerous medications, or as a symptom of withdrawal, and probably some more that we haven't included. 

 

Early in the week, Tuesday, he had his first really pukey day.  The next day at rounds the conversation went all over the place - at first the attending seemed to be on the side of all babies throw up, so maybe it's not really a problem for him.  Then it went to sending him in for a surgery that would help the throwing up and sending him home on narcotics and we would wean him. The whole conversation upset me because the last we heard the plan was to get him up to full feeds at Hopkins and then send him to a rehab hospital closer to us so he could wean off the narcotics and work on his feeding.  I expressed my concern with the nurse, who had the fellow come talk to me.  The fellow said it was all just theoretical discussions, that babies are almost never sent home to wean from narcotics and she would sit down with the attending to come up with a game plan for Little Lo.  The only real plan for the day was to get another ultrasound of Lalo's pylorus (the muscle that connects the stomach with the small intestine).  When he had his upper GI study they found that the thickness of his pylorus was on the upper end of normal.  This could indicate a condition known as pyloric stenosis, which can be a cause of vomiting in newborns because the muscle is too thick to allow food to easily pass through.  So results of that came back the next day that it was unchanged from before, so no confirmation that it was causing our issue. 

 

After we brainstormed a bit on our own, I even asked the nurse and one of our docs on Thursday wether a GI specialist would be called to consult.  After all, he's seen every other specialist in the hospital.  Both told me we weren't at that point of being concerned yet.  So at rounds on Friday they say we have a game plan.  They talked to the surgeon and he has room early next week to do one or possibly more surgeries - placement of a gtube (a long term feeding tube), opening the pylorus (so it is not so hard for food to pass to the small intestine), and a nissen fundoplication (wrapping stomach around esophagus so you cant throw up)!!  Im pretty sure the entire room was listening to me freak out in response to this.  This was almost completely out of the blue and not the path we thought we were on whatsoever.  The nicu's rationale is that he is no longer a super sick baby and he belongs at home where he can thrive versus still living at the hospital just because he's not gaining weight as he should be, and stuck on a long path of narcotic weaning.  These procedures will help get us home because it is easier to have a gtube than it is to have a feeding tube thru his nose and one of the two other procedures should help with the vomiting.  The surgeon happened to stop by a few minutes after rounds ended and him, the nicu attending, and myself continued this discussion.  Where we ended is that we are having a family meeting on Wednesday with Lalo's medical team to figure out his plan.  We are against these surgeries for multiple reasons - mainly they are surgery!  He has already had 4 surgeries and we know he will need another in a year or so to repair his incision hernia.  But also the nissen sounds very extreme and he has only had 3 shots at taking a bottle (that was the exciting news for this week), how do we know that he will need a long term feeding tube?  The thought of weaning narcotics at home is also completely overwhelming and scary, especially when you add in the factor of him being a puker.  However, there are benefits to having him home - obviously most important is that we can be with him all the time, which would be a complete benefit for him developmentally.  We will ultimately be the ones making the decisions but we have a lot of factors and medical opinions to consider. 

 

Other updates from this week include an awesome looking echo of his heart.  But that did still show a PFO, which we are not sure if that will need to be repaired at some point, but for now looks good.  The attending also did a physical exam of his head this week and is concerned that the plates of his head are growing together quicker than they should be.  From being on ecmo and unable to change positions, one side of his head is pretty flat.  Typically, we would still have a good amount of time to work on correcting this, but I guess if the plates fused prematurely we would have issues.  So at some point this coming week he will have an ultrasound (or perhaps xray or ct scan) to determine if this is an issue. 

 

So congrats if you made it through this super long post.  Despite the puking and lots of discussions at his bedside, Lalo had a good week.  He had visits from his grandma & grandpa Frank, his aunt Ellen and his "aunt" Veronica.  He is smiling so much now and soon enough we hope to kick the iv lines to the curb, which will make life a lot easier.  

 

 

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