Today was a tiring day. For me and I'm sure for him. Riley is hungry. He roots around at his fingers and pacifier and sucks on his scratch mitts and nothing gives him food. He's pretty cranky about it and spent a good portion of the day fussing about it. Consoling a hungry baby who cannot eat is tiring. Very, very tiring.
But that may change soon....
If you didn't guess from the picture earlier, Riley got his replogle tube out today. If he tolerates that well over the next day or so (not sure exactly when or how long), he will be allowed to feed by mouth a tiny little amount of food. and then we'll wait and see how he does. The surgeon really doesn't think he will get enough nutrition/absorption to be able to get to full feeds and grow and will need to maintain the IV nutrition because of this. They also didn't expect Riley to be doing this well, this soon....so we'll see what happens. HOWEVER, assuming Riley ISN"T able to get to full feeds and needs to maintain IV nutrition, once he gets rid of his drain tube (sometime in next 2 weeks most likely), the surgeon says he will transfer Riley back HOME! Home being our hospital at home. Not best case scenario, that would be discharging him home, as in, to our house, but it is certainly a BETTER case scenario. Much better than him staying up here until they repair his bowels which will be at the least 6 weeks and possibly 3 months from his surgery day a week ago. But again, we'll see. For now, surgery comes around every morning and manipulates his belly (ouch) and gets "stuff" out (yuck yuck yuck). As long as that continues, he keeps the drain. As long as he has the drain, he stays here. His stomach is measuring as average for a full term newborn now. So they are saying the measurement isn't as significant as the firmness now. And it is MUCH softer today. He maintained his platelet count at 54. His blood culture from last week didn't grow a thing so no new infections in his blood stream.
His primary nurse was back today ( we ADORE her) and I talked with her about the nursing situation and morphine situation over the weekend. She completely agreed with me that what Riley does during assessments/diaper changes now, is NOT pain, it is aggravation/typical little baby leave me alone behavior. He kicks his legs now when he's upset and before, when he WAS in a lot of pain, he just kept them drawn up to his belly in protection. Not anymore. They kick around like crazy. He also stretches and arches his back when doing so now. He has never done that before, so another sign of being more comfortable. So she had his record changed so that other than when surgery comes in, first thing in the morning, he cannot have morphine without a physician or nurse practitioner assessing him.
I changed a few diapers today and changed his ostomy bag. I held him for HOURS trying to keep him settled, but at this point, only food is going to help that I think.
He also moved to a new "home" today. Well...bed really. He is out of the warmer bed (hasn't used the heater on it for a week now) and in a regular little open crib. He seems to like it. Well, as much as he liked ANYTHING today :o)
Me and my boys
He's wondering if it's time for a diaper change already....
Peeking out of his new bed
His new bed
Notice his fingers? I took the boxing gloves off today...long as he doesn't try pulling his PICC line out of his arm, it should be ok. There is nothing else important or invasive he can pull off. Just the little leads but clothes cover those. But I do believe if i come in and they say he was pulling on his PICC line, I'll faint. And the gloves will be back on.
His nurse today (since she is his primary, she really knows him) said "I do believe this little one is going to be trouble and your going to have your hands full". I said "bring it on". She then got very very serious and said "it's a good thing he is such a fighter and so determined. Otherwise, he wouldn't be here today". We have been saying that for a while now. But hearing a medical professional say it in all seriousness, sends a chill up the spine. How thankful am I for a child that is as stubborn and full of fight as I am?
7 comments:
Riley is absolutley adorable. I know you are excited to get him "home"..
Riley's name means courageous & he sure has lots of it! What an amazing little boy! He's absolutely beautiful and we just love his fighting spirit. Ned came home and told me all about what's been going on, so I read your blog tonight and wanted to let you all know that you are in our hearts and prayers. I have been down a similar road with my sister and her girls. I know what you are going through and if there is anything in the world that we can do to help you out, no matter how small or big, please let us know.
Hi Lindsey, I absolutely adore and love the picture of you, Travis and baby Riley! How sweet. I am so thrilled about all the good things that I'm hearing about Riley now and how he is progressing along the road to recovery. That's okay baby Riley...be stubborn, keep fighting. God bless and keep you in his care. Love, Pauline
I'm so glad to hear the good news. It sounds like he is doing so well! It's great that he is rooting and trying to eat. As a mom of twins with eating issues, I can assure you that is a blessing indeed!
I love his bed boy bed. Abby was in one for just a few days at Duke. It makes them seem like real little "normal" babies.
we are thinking of you every day!
Johelen
Lindsey,
We are so glad that he is doing better. We are still praying that he will get to come home soon.
Aimee and Marc
God is so good! Glad to hear the good updates and praying that he'll come "home" soon.
Christie
Hi Souza family,
It brings tears to my eyes when I read about what you all are going through. Riley seems so tough and I know that is what you all need. What a fighter and I know this gives all of you great hope! You are all in my prayers and I think about you every day! I am happy you all will be coming home to Wilmington soon!
Marci
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