long but easy day
the week gets really tough now
today was training
I guess it's like going back to gym when you've been away for a while. You recognize the smell, the equipment, the looks on the faces of the people around you, but you're sort of out of practice. You get on the stairmaster or whatever and you're like, "Shit, I am out of breath." And then you move on to the next thing and you're like, "Dammit, my shoulders hurt." But you remember how everything works and, after a few days, you're back into your old routine.
The hospital is like that. We were a little rusty getting back into the swing of things today, but soon everything came rushing back. It's 12 o'clock and you're in between appointments but your baby needs a neb treatment? Just push through the crowd in the cafeteria, find an outlet and administer that neb as needed. The good thing about being in the hospital when you do that is that no one cares at all. The kid at the table next to us was getting his lunch through a G-tube.
When you administer a neb in the airport concourse, it is not so easy to go unnoticed. FYI.
So we were back into the swing of things today. Eyes glazed from exhaustion, but pumping along on caffeine and adrenalin, we barreled through an upper GI study, a video fluoroscopic swallow study, lunch, and then an anesthesiology consult.
The upper GI and VSS went really well. Ike wasn't pleased to have to fast for four hours. And he wasn't pleased to have us pin his arms over his head to hold him down, but he was so hungry that the strawberry flavored barium was chugged with great relief. He enjoyed thickened barium (delightful), thin-liquid barium (with a fruity bouquet), and barium-infused applesauce. He aspirated once on the thin stuff, which wasn't a surprise, but the doc said this could have just been caused by the shock of something new. We have the go-ahead to test him out on ice cold water when we get back home, and see how he does with it. Great news! The tests also showed no signs of reflux. Obviously, that can be hit or miss, but still – this was encouraging.
The anesthesiology consult was not as awesome, though, mostly because of a know-it-all doctor who enjoyed offering unsolicited diagnoses of Ike's airway issues. He had also never heard of some of Ike's medication and had no idea what the thickening agent is that we use with Ike's milk. Then there were some disagreements about what the hospital terms "solid" food and whether it's prudent to starve an 11-month-old for more than 6 hours at a time just because giving him non-thickened pedialyte might give him pneumonia. Dell Children's says thickened breast milk is a clear liquid. Cincinnati Children's says it is a solid. Well, it depends on who you talk to in Cinci, and that is confusing and not very cool.
Tomorrow is the CT scan. They will knock him out for this one, which I am not a fan of (though I understand why they have to do it). We have to be there at 6:30am, so hopefully it won't be so bad having to fast beforehand. Wednesday is going to be the real gut punch day, with the fasting for 6 hours, and the bronch not scheduled until 11.
They are easing us all into it here, scheduling the least invasive procedures and consults first. This is good, but also bad. As the week wears on, my husband and I are getting less and less sleep. By the time the bronch day is here, we will both have had maybe 12 hours of sleep over a 3 day period. Combine that with a starving baby, who has had enough of hospitals, and I can tell you right now, emotions will be running high Wednesday morning.
Thanks for all of your good thoughts, everyone. It makes me feel less anxious to know that so many people are out there thinking of our wee Ike-a-saurus and hoping for the best. It is somewhat traumatizing to think this is just the very very beginning of everything that will have to happen to get the trach out. But it helps to know you all are there.
Snoozing after a long day. (Also, flipping me off.)
Haiku of the Day 
Yeah, lots of good thoughts. You made it one day. Make it for one more appt, and then another… and then it will be another day…and so on. Sending you happy adrenaline-filled thoughts and lots of love and endurance to Ike. (and suck on your bolsa, you anesthesiologist windbag).
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We are definitely there. My almost 3 year old checks for baby Ike updates every morning. She checked on him right out of the box today and suggested that he get some chocolate from the doctor “to make him feel some better.” Rooting for all of you.
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Day one down. Sending lots of love and endurance thoughts to both parents and Ike!
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Sending so much strength, love and hope to you and wee Ike. He’s a trooper as are you.
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You three can do it. Just don’t forget to pray for god’s continuous guidance and strength. I know your kid is strong.
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You three can do it. Just don’t forget to pray to god for continuous guidance and strength. I know, your kid is strong.
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You are all in my thoughts and prayers this week. You guys have come through so much to get here. I’d have more words of support and wisdom, but its still early and I’m not quite caffeinated enough…so I’ll just say “Rock Cinci” and let it go at that!
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Sending love and prayers for you all. One day down!
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You are doing great! Keeping you in our thoughts and prayers. And love that Ike-a-saurus attitude. He’s amazing and strong and so are you and your family.
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my little boy who is 5 also asks daily about baby Ike-a-saurus. if he isnt at my house then he calls to check! we are definetly thinking of you all! idk how to technically “send” you good vibes, but if me thinking positive thoughts about you & hoping(& yes sometimes i DO pray…w/out trying to though! i just talk to our higher power)things will go smoothly & w/ good results! Hang in there lil hunnies!
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I don’t know why, but that picture got me all choked up. So sweet to see your hand on him, his chubby little thigh, his eyes closed.
Stay strong, Mama and Papa. You are amazing. And if you have to let off some steam by the end of the week, because you’re exhausted or because egotistical doctors are giving you b.s. answers, then just blow off some steam. Don’t hold back!
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Keep remembering you want and need to be at that hospital, and the strength will come! Hopefully some answers are forthcoming very soon. Big hugs to you and your family!!!
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I am so impressed that you made it on the flight and through the airport. We are all sending you our love, healing vibes, and prayers.
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You guys are amazing! And handling things like pros. Team Ike rocks! It feels like progress is being made. I know this is a marathon, but you’re in the groove now and every step is one closer to getting this thing whooped. Get as much rest as you can and know we’re here in the background pulling for you!
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Kara here again! Just peeking in on you guys and wanted you to know we are thinking about you. Good vibes, good mojo all going your way.
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Best of luck. Will get my great aunt-in-law and her nuns (in northern Ohio) on it!
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Good Luck to you.Thanks for sharing your experience.
~Ashley~
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This is a problem. This issue must be closely investigated. Litter must be removed by local services. I’m sure that’s the best approach to this issue.
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