Hi everyone… it’s April 1st and that means April Fools pranks, but I don’t have any to share with you today. I do have an update to get everyone up to speed, though.
In the last update, we saw Samuel had his Pyloric Stenosis surgery and it was deemed to be a success. He did really well last Friday, Saturday and Easter Sunday, but then on Sunday evening he started vomiting again, and his coughing fits revved up again.
He’s not been able to keep any food down at all, so he’s back on an IV. They’ve moved it from his arm to his head to his foot and now, back to his head. This is how he’s getting nutrition, but I’m sure he’s quite hungry at this point.
Doctors did all sorts of tests on him this week to try and figure out why he can’t keep the food down. The tests all came back normal, but clearly he wasn’t functioning right. One X-ray did see that he had a lot of air in his lower intestine, and that may be contributing to things. It seems clear that things are passing from the stomach to the small intestine to the large intestine, but we didn’t know what was causing all the air.
On Wednesday they found that Sammy has a Urinary Tract Infection (UTI), which could be contributing to the vomiting. So he’s on two types of antibiotics now to help the situation. As of Friday morning, his nurse, Valerie, reported that he’s responding well. His color is much better and he just looks like he’s happier. It still isn’t stopping his big coughing fits though.
When Sammy’s not coughing and choking on the fluids that are being generated, his oxygen needs are near zero. He’s been on 1 liter per minute of flow and room air this week, and he’s been fine. But when he starts coughing, he spirals out of control, starts to desaturate in a big way and then his oxygen needs are very high. So we have to get this coughing thing fixed.
We believe next week the doctors are going to pow-wow with us to talk about a plan, which could include moving him over to Stanford University hospital in Palo Alto, where there are specialists. More on that next week.
For today, Friday, Valerie says that Dr. Sandhu will start introducing feedings again, with 35mL of a different formula that is pre-digested. Let’s cross our fingers this goes well and he can keep it down.
On Wednesday, I had to go to LA for the day, and I noticed I was feeling sick that day. It got worse throughout the day. When I got home I slept in the guest room for the evening. By Thursday I was feeling pretty lousy. We brought out the Clorox Wipes and anything I touched got sanitized.
I called the MDLive doctor and he suspected the flu. He prescribed some Tamiflu and some other OTC drugs. I stayed in my home office the entire day, but about 4pm Kristen and I talked and I thought the best thing I could do to keep everyone healthy was for me to leave the house. So I used some points and checked into a Hyatt House hotel a few miles away. That’s where I am now, posting this update. I’ll stay here Friday night as well and see how I’m feeling / looking. If it is flu, then I may need to be here a few more days as it’s still likely contagious.
This really sucks since I can’t hold or kiss Jacob or Samuel. But I know staying away is the best thing that I can do. We can’t risk them getting sick, and I don’t want Kristen getting sick either. I’m guessing I won’t be able to go near either one, or Kristen, until next Wednesday.
Kristen did all the feedings by herself on Wednesday evening, and then we had he friend Jodee stay over on Thursday night while I left. Still, she did all the feedings as well. Her sleep schedule is just blown up at this point. I can’t believe how great she is. She’s a wonderful mother, and a great wife. She’ll get some help when Karen and Rick come to visit this weekend. They were called on Thursday and I appreciate them dropping whatever plans they had to come visit us. I know secretly they like it since they can see the boys too.
I can’t forget to say some things about Jacob, though there’s not a lot to share. He’s growing like a weed. His colic / crying fits aren’t as bad and this week he’s been a lot more “smily” as he’s discovering that he likes to smile at things. He definitely likes to be outside, and he loves to be naked. The best way to get him to stop crying? Remove all his clothes. He’s sleeping pretty well, though we’re still feeding him every 3 to 4 hours, and when I say “we”, I mean Kristen is feeding him overnight. I think we’re reaching a great point with him where he’s going to start staying awake longer, and he’s going to start showing signs of becoming a little boy. This is all very, very exciting.
That’s it for now. More updates next week.