Grateful-Plea

Shout out! To all my wonderful nurses on the 4th floor of Ochsner pediatric unit. I mean honestly each and everyone of them have gone above and beyond their call of duties when it comes to being the nurse in charge of Emerson. I would have to admit that I am a bit more bias for the nurses, and thus is coming from a doctor🙂. I mean honestly since our first admission the medical staff has been wonderful:

Dr. V (oncologist and his team Dr.F and Dr. L) along with all the resident and student doctors. 

Child life: Ms. K, AE and their crew are just an absolute delight and are willing to even go do your laundry 

Yet the nursing staff, is very unique, and they go above and beyond taking care of you while you are here. My mom stayed the night with me Wednesday, and nurse C. handled baby Mac so amazingly. As many of you know I was in need of some sleep and was gifted a room at the hotel that is literally connected to the hospital. So while I rested, my mother spent the night with Mac. The following night mama Rosa stayed the night and I again headed over to the hotel😗, while nurseK helped care for Emerson. Now as I returned from my staycation (vacation in which you don’t leave the town your in, rather you play tourist), I would be tasked to night watch (reference to GOT), but I would of course have help from nurseM.

As I write it’s early morning of the 11th, and just like the weather forecast that is warning of some storms down in this area, I think Mac’s day was in preparation for a rough go. Yesterday was day 3 in which we were working on feeding Emerson through his g-tube.

✅initially bolus: taking an amount (approx 1-2 ounces of my my breast milk=BM) into a large syringe and giving that through a large tubing into the g-tube rather quickly

✅this was followed by placing my BM into a sterile pouch, connected to a machine “kangaroo”, after putting in settings (how much and hour and the total), there was tubing connected to his g-tube and he was fed that way

  *this version was contained yesterday

Now it can appear very tricky, but once I got the hang of it; it was an all go. I don’t particularly like the bolus feeds, it’s like asking you to chug a milkshake. Too fast😳, while I preferred the machine, because the feed could be paced a bit. 

Here comes the tricky part though, VENTING. What is that🧐. Well a special tubing is often placed with a large empty syringe into the g-tube opening, once place your basically just letting any excess fluids/gas out. The problem that I came across is due to Mac’s mucositis

*painful inflammation/ulceration

Which is currently in the stage of healing, he is producing a lot of mucous.  This results in a lot of that excess mucous being in Emerson’s belly. Initially I was venting a lot, I mean diapers worth, and guess what my little guy didn’t vomit for over a day! Now  I was told to back off, as there was concern that I was taking too much out, as if I was removing most of the feed I was attempting to give. I did my best to just listen to the medical advice, despite knowing it was me at his bedside, and I had made the observations

✅large venting amounts = NO 🤮

Well let’s just say when we decrease the amount that I attempted to remove he vomited a whole lot.

That leads us to yesterday, when I made some adjustments and stood my ground on the venting. I mean really 🤔, remove all the excess mucous and fluid (not milk), and Mac is less likely to vomit. But like I said yesterday was just overall 🤕

He barely kept down his feeds, he kept running low-grade temperatures and despite the venting 🤢🤮. It’s has been hard to just try and balance it all. Currently he has a fever 101.7, and I’m sitting at his head with a cool rag. Why, because remember when Emerson has a fever he is on 🔥. 

Catch you up on numbers

✅liver functions is improving

*since stopping some medications and the the nutritional feed

✅platelets were given again, along with vitamin K (fat soluble vitamin, that plays a role in clotting)

 *there has been some pooling of blood in Mac’s mouth

✅potassium was low, so they have managed to replace that in his fluids, which he receives via his line

✅well his white blood cells, he is just not making them!

*rememeber he needs them so that his body can really start to heal
*well since he has a fever, despite being on antibiotics (which they changed once already due to fevers), he has to get blood cultures (sample of blood places to see if any bacteria grow)

Father God I know that in your great mercy you do not wish for your child to suffer. Yet I believe that through his suffering you will

be glorified. Right now though I plead as his mother for you to pour into me his suffering. My plea is that he suffers no more, knowing that you are still in the business of performing miracles. Lord Jesus hear my cry. Amen