Slow and Steady

Thank you for all of your prayers and kind words of encouragement.  Keller is doing better! He has made a very slow progression towards better anyway.  Friday when he got a fever they did get blood cultures and urine cultures and on Sunday morning all of that showed up negative.  I have heard that his fever was most likely caused by a new virus and I have also heard that it could have been the "peak" of the rhinovirus.  At this point, it doesn't matter much. The weekend was no fun for him and even into Monday.  He was very congested and his oxygen saturation was poor.  The cardiologists are happy with his numbers being above 80 considering the amount of blood he has swirling around inefficiently in his body.  Keller's numbers dipped into the 50s a couple of times which means they had to suction him.  Bulb suction syringes are enough to make any baby have a bad day but they were using a tiny tube to stick into his nose and down his throat to clear his airway enough so that he could oxygenate better.  This really ticked him off! After suctioning he would typically come back up to the high 70s or low 80s.  He still had so much extra fluid and snot in his little body the 90s were unattainable at that time.  But everyone is so impressed with his cough.  And I heard one doctor say he is a "strong baby."  :) 

He has still had some spitting and some vomiting.  Right now we are chalking up some of that to being "post tussive" as in being caused by coughing. You know when you've had a cold, a really bad one, and you get coughing and then gag.  That's what Keller has been doing.  He also has had a bad time with needles.  He is very hard to get an IV on and you can imagine the number of IVs a baby can go through during a week in the hospital.  He knows what's coming when you break out the tourniquet and he doesn't like it.

Monday he played with me some and talked a little.  He spiked another fever but it went away quickly and Monday night he went to sleep and slept really well.  Overnight I think he  did some of his spitting and "desatting" shenanigans but he really has seemed to start doing better.  Tuesday his chest x ray showed a little atelectasis in his right upper lobe so they tweaked his medications again and started a little chest PT to move stuff around.  They are weaning the amount of room air he is getting in his cannula slowly and so far he is tolerating it well.  Since yesterday they have been able to dial his high flow room air from 5L to 1L.  And his oxygen saturation has been in the low 90s.  So there has been much improvement there.  But what still surprises me is that he has slept so much better.  As an infant you would expect a typical wake/sleep cycle, but that's not normal for Keller.  He cat naps when he is comfortable enough or too tired to care and is able to stay awake and play for just a few minutes before he tires out which makes those minutes so precious.    Phillip got some video of our cutie smiling. 

In regards to surgery he will most likely have it in the next 3 weeks to a month from what I can gather.  We were told that after a respiratory illness he needs 6 weeks to recover and that should the need arise they can do it at or around 4 weeks the cardiologist here feels that Keller's case will need to addressed closer to 4 than 6.  The 4 (or 6) week timeline starts at the point of diagnosis.  He was diagnosed in the wee hours of August 19th so we are a week in already.  It makes us feel better to not have to manage him at home for 4-6 weeks after we are discharged because physically he is in need of the surgery and when you get that close you want to just have it.  Phillip and I are going to be able to meet with the surgeon tomorrow while Keller is still inpatient.  It's a relief to not take him on a car trip and have him sit around an office while we wait.  Especially since when we are discharged and for the weeks leading up to surgery Keller will be getting food in his g-tube continuously.  So imagine Phillip carry the car seat and me following closely behind with a feeding pump and bag as we walk from the parking deck at Duke into the office, doesn't sound fun to me.  Not to mention any germs we would encounter along the way.  

When we get home we will be in super germ free mode.  It's crazy to imagine that we all got rhinovirus considering we have 4 Purell/Germ-x stations in the house and everyone sanitizes before they pick him up.  If anyone of us has been "in the outside world" we change clothes and scrub up once we are home and of course before we touch or get near him, and the visitors have been few and far between.  Despite all of that he got rhinovirus (I'm still pretty certain at a doctor appointment) so I don't feel that it has been overkill and I think I will be ordering a bubble on Amazon today. 

Norah and her George we found at the gift shop.

Our sweet Norah has been so good through all of this. Phillip has gone back and stayed a few nights and I was able to go for a few hours Friday and yesterday to see her.  She is so adaptable and resilient.  Through facetime and short visits we have been trying to be present for her in this too.  When I get to see her it's all I can do to not kiss her little face off.  She has a huge imagination and spends her days as Doctor Norah, a princess a mermaid or a fairy, as well as ice skating, having a picnic on the beach, making snowballs and so many other things.  She really likes to pretend Daddy is Prince Eric from "Ariel's Mermaid."  I'm so thankful she is able to pretend and don't know if her imagination has grown because of her seclusion or if she's just that creative. 

 We are hoping to go home before the weekend or over the weekend.

Just a picture of the back of his hairpiece,  he's going to need a hair cut.