Guess what's missing from this picture?
That old stinkin' NG, that's what!
Because his last two scheduled echos have been cancelled, and the prime suspect for his congestion/cough has become his NG tube possibly blocking his sinuses, and because Jake rubs at the tube a lot trying to get it out of his nose, and because Jake has developed his eating and drinking skills further in the last month we wanted to give it a trial run with no NG and see what would happen...
Here's what's happened:
He has eaten: half a slice of french toast, 2 slices of watermelon, 2 mini banana muffins, 12 goldfish crackers, 2 tablespoons of yogurt, a 4 ounce fruit pouch, 1/4 cup of fried rice, and 6 crackers.
He has drank orally: 76 ML TOTAL so far today. Our goal was 60 ml, and by suppertime he was actively asking for his liquids. On his tray at supper he had 3 sippy cups - water, chocolate milk and chocolate pediasure. To put in in the perspective of the big picture, Jake takes 900 ml daily through 4 NG feeds so there is a long way to go yet. However, I don't think this achievement should be minimized - he drank, all by himself, 2.5 ounces today. So proud of him, and so thankful to God and our prayer team for helping this happen. THANK YOU for the prayers and good thoughts. You rock.
The downside: He has had no wet diapers and no bowel movements, so we know he is headed towards dehydration now.
The NG will be put back in right before he goes to bed, and we'll do a full feed slowly while he sleeps so he can start to regain normal hydration again.
But we got an answer to prayer - he drank more than 1 ounce on his own in one day. He can do it. You go superbaby!
I couldn't have done this for the first time without the emotional and moral and "jumping up and down and keeping the baby happy" support of my Mom. Love you Mom. Let's do it again next month? :)
Jake is not ready to be feeding tube free yet, but today has proven to me that he can eat and drink more than we think he can. I believe his refusal to drink is behavioural. It's a learned behaviour resulting from having his tummy magically fill with milk at set intervals during the day, thanks to the hated NG tube. But I'm feeling resolved now, and armed with the knowledge that he can drink more - Jake and I are in this together, and we're going to start increasing those oral feeds more and more. We are. Yes!
Look at the excellent drinking form he has here, something for Jake's I Run 4 buddy Laura to be excited over!
This morning, around 10 am I received two more answers to prayer. I can hardly contain my excitement about both of them, but they each come with their own anxiety as well. First and foremost...I am so unbelieveably happy and excited to say that this morning Jake was given his last Enox needle (for the forseeable future at least!). His last needle. Done. Finished. See...
The chalkboard on his bedroom wall where we record his Enox dosages looks like this...and we don't have to check off PM today, or any other day for that matter. When I heard this my first thought was no...we can't do that...it's not safe. But SickKids has now determined that the risk of him getting a bleed from being on a blood thinner is much higher than the risk of his left pulmonary artery forming a blood clot. They are both risks, but in a complex child like Jake the risks are weighed and the less risky road is followed. The path for Jake has now shifted, and he is going to transition to a low dose aspirin later in the week. Oh my Lord, I am so thankful for this answer to prayer. No more gritting my teeth and listening to my baby cry while tears stream over his beautiful cheeks because we have poked his arm or leg with a mean needle. It's done. I am so thankful. Check out the bruises he is currently sporting on one arm from this torture...
Now these are going to heal. Thank you Lord for that. But at the same time, please protect Jake from blood clots - help us to see the signs early if one begins to occur.
And then, another answer to prayer...this has been a blessed day.
The cardiac surgeon at SickKids has agreed to move Jake's pacemaker, and put in a G Tube. We're soon going to be losing the NG for good. The g tube will provide a less torturous way for us to keep Jake nourished until he figures out this drinking thing. It's major abdominal surgery, anaesthetic and comes with it's own set of risks and possible complications, but given the new complications we are having with the NG it seems like the best and safest route for Jake in the meantime. So now we await our appointment, but we will be likely travelling to Toronto for this procedure sometime in September. I'm happy and excited about this too, but also concerned about the surgery and the recovery period, and more upheaval for Georgia. Please keep big sister Georgia in your prayers in these coming days, as she will be adjusting to kindergarten and then likely having us leave for an unknown period of time in the same month.
So wow. What a day. I can hardly wrap my head around it all. But I'm proud of Jake's accomplishments and I'm thankful to God for His goodness and grace. Like the Psalmist said in chapter 107, "give thanks to the Lord for He is good, His steadfast love endures forever."
I'm going now in search of a calm cup of tea and a moment to process the day...I'll leave you with my boy and his beloved blankie...
Wow-what an accomplishment! Praise the Lord, every little bit counts towards him being totally off the NG tube. I think God does work in all things. The NG feeding tube was something I was really worried about, and I just discovered about two weeks ago that a lady in our church group is a nurse for the 'Safe at Home' program in our area (which we will be participating in), and she goes to the homes and helps/instructs/monitors the NG feeding, so I feel comfortable that the instruction/monitoring will be coming from someone I know. Will be praying for Jake's upcoming surgery when he gets the G Tube put in.
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