Happy New Year from the Ortyls!
So far, 2012 has been a good year and even though last year was jam packed with "firsts", I have a great feeling that this year will be full of firsts that we will really be celebrating!
So here is the scoop.
Tomorrow Oakes heads to the OR to get his JG button, he is having his PD drain removed and to have a little unidentified object removed from his stomach.
For sometime the JG has been on the table. Oakes has a small ulcer like sore in his esophagus, likely from the current NJ tube that runs from his nose to his small intestines delivering formula. Oakes had reflux issues before his transplant and since the transplant there have still been issues with reflux, so planning for the future, a JG is the best option on Oakesie. The JG button is a little port that will be placed in Oakes' stomach. As of tomorrow, we will be able to feed him directly into the stomach with the feeding tube, and later when he is at home we will do the same thing. Open the port, feed him a liquid meal and continue on until the next feeding. Not only will we get the annoying tubes out of his nose and esophagus, but this means no more need for tape or tubes on the face!! I honestly am more excited about him being sans-tape than I am about making feedings easier! The memory card on my camera is clear.
On Dec. 22, I noticed there was a pretty nice amount of blood being pulled out of Oakes' stomach. So Oakes has the NJ tube in one nostril, which delivers food to his small intestines. The other nostril has a tube that sucks bile out of his stomach and into a clear little collection cup. This is called a Replogle and this is where I saw the blood. Sometimes the suctioning of the can irritate the stomach and it may bleed but the next day and ultrasound showed that there is some little thing in Oakes stomach. And we do not know what it is. I think my exact words were, "You have got to be Fing kidding me!" Actually, that was not exactly how it sounded cause I used the real F word. This "thing" does not appear to be piercing the stomach. It does not look like tissue. It looks perfectly round, and metallic. But it does not show up in X-rays, so it can't be metallic. No one knows, but it is coming out tomorrow.
Over this past week Oakes came off of Milrinone and we have also seemed to take pretty good control of his issue of being overloaded with fluid. Milrinone is a sophisticated medication that helps the heart relax and pump more efficiently all at the same time. It also causes the blood vessels to dilate, so there was a theory that the dilating vessels were causing blood flow issues with the kidneys and in turn effecting Oakes' kidney function. So the milrinone was weaned, Oakes has dried up - his belly has shrunk down, he isn't so bloated and so far, so good. If I were saying this out load in Oakes' room I'd be whispering and tip toeing away from Oakes so that Oakes' little heart and kidneys could not hear this news. First of all, Oakes has been on Milrinone most of his life. And lots of heart kids need it for years and years. Actually when we came home to wait for his transplant, we were given the smallest backpack ever to store the dispensing milrinone in. Lots of toddlers wear these packs as they play and walk around all while getting a constant drip for milrinone. So to be off of Milrinone feels enormous! I asked at rounds on Monday, "So are we allowed to get excited about this yet" and I got some furrowed brows and quiets nods side to side. Not much was said, no one wants to jinks anything, knock on wood, type on keypad, but after 2 weeks without milrinone or any other substitute we can get excited. We are still in the wait and watch mode. So don't do a full on happy dance yet, but be prepared, please.
I mentioned in the beginning of this post that tomorrow Oakes will have his PD drain removed. Since he has dried up, and his abdomen is small, the PD drain (Peritoneal Dialysis drain) is going away. No more dialysis for Oakes! Ok, do you happy dance now.
The last time I posted lots of details we were just starting dialysis. His doctors thought that he would need the dialysis for several weeks and he only had it for one week. It seemed to do the trick just fine, but now it seems like the milrinone was the missing piece that made all of the difference!
Right before Christmas I was sitting in Oakes' room holding Oakes, he was snoozing, I think I was buying Christmas gifts online on my phone and our friend Dr. Michelson came in to chat. We talked about Oakes and the latest with him at the time. We talked about the stents, and all kinds of stuff, then at the end of the conversation Dr. M through out that he had a little goal to get Oakes home for Valentines day. I hardly got excited, I think everything that I have learned about time frames on that floor has taught me not too, but I told him, " I will take your Valentines Day goal and give you an extra month. Oakes turns 1 on March 10th and I would LOVE to celebrate that day with him at home." Dr. M had a huge grin on his face and he agreed that that is a great goal. As he walked out of the room he mentioned that he wanted to be invited to the party and I assured him that he is invited to EVERY SINGLE birthday party that Oakes & Isla celebrate.
March 10th is not quite 2 months away!! Hopeful happy dance now.
So the stents. They have officially been ordered. Between Christmas and New years the FDA approved the use of the stents. On Monday morning Oakes had a CT scan and 3-D images were taken of his airways, which were sent off to Austria. Building the stents will take about 3 weeks, maybe less, so the stents could be placed in about a month?! The other exciting news about the airways is that Oakes has not required ballooning of his airways in almost a month, which is great! It seems just amazing.
So if all of this isn't exciting enough, here is some more info that will make you smile. Last week Oakes had his first taste of food. Baby food bananas. Yum. He loved it. He got one little taste and was wide eyed, flailing his arms and legs, ready for more. So we will continue to offer him tastes of food. His reflexes are good, he moves his lips, brings his tongue to his lips - slowly but steadily we will get him eating by mouth.
When Oakes is awake he is happy and alert. He is starting to move more. If you put him on his side he can push himself to his back. If he is on his back with toys overhead, he will kick and bat like crazy. He may be a little athlete after all. Right before Christmas he realized that his hands are his own. A milestone that most babies make much sooner, but we will take delayed milestones, thank you very much. And he isn't really sucking his right thumb like he used to. For about a week he was grinding his teeth, thank goodness that stopped. Now, he holds both hands up to his mouth and just kind of rests them there. He might put his index finger in his mouth, but you never know, he's just trying out new fingers I suppose. Just today, I asked Daniel, his nurse if he knew where if at all Oakes fell on the national curve for height and weight. When Oakes was admitted to the hospital pre-transplant he was not on the curve. Not even close, which was devastating to me. All moms want a fat healthy baby after all. "Failure to thrive" are words that no Mom wants to hear about their baby. So anyway, we did some digging, and plotting and discovered that Oakes is in the 50th percentile in weight, and he is in the 3rd percentile for height. We are on the curve, people! Happy, happy, happy dance!
Lost of firsts to celebrate already!
Off to bed for this Momma.
I will post updates and photos tomorrow.
Heartstings to all of you.
Our last visit with Nel. Nel the therapy dog has retired! We love you and your silly costumes Nel, we will miss you sweet girl!
Finding his hand.
On New Years Eve, I went up to give Oakes a smooch at midnight. He slept through every second of the excitement.
And by excitement I mean, a line of beautiful, intelligent, super-loving, and all around amazing girlfriend/nurse/aunties lined up to smooch him right after me!