The Story of the Band Getting Back Together, Man!

Reagan is back at SJRMC with his brother Landon who is slowly working on drinking out of the bottle.  All we need now is Amanda on the keyboards, and we are ready to start making music.

I'll start with Amanda, because even though this is "The Story of Reagan and Landon", I don't get to brag about her enough (and she deserves all she gets).

I picked her up from school on Wednesday, hadn't see her since the previous Thursday and I missed her terribly.  We scrimmaged the other all-star team last night and made a good show of it.  Getting ready for the second round of the tournament next weekend (if we win Saturday, we play again on Sunday - Super Bowl Sunday - don't know what the tournament organizers were thinking). 

Amanda said she reads the blog every morning, so I didn't tell her that I was going to talk a bunch about her.  She is just fantastic, and super excited to have her brothers getting better.  She can't wait for them to come home so she can be their big sister.  It must be tough for her, her brothers are already two-weeks old and all she has seen of them is the few times we were able to sneak her in to the hospital so she could watch them through the NICU window.  But she sends her love to them everyday, and I know they will be lucky to have a big sister like her when they get home.  In fact I was just talking with Landon and Reagan and they told me to say hi to her.  I couldn't ask for a better daughter.  I love you Amanda!

On to the boys, we'll pick up the story where we left off on Tuesday.....
Hillary was at CHLA on Tuesday, they had taken Reagan off of the nitric oxide and were getting ready to remove the regular ventilator, while I was at SJRMC with Landon.

They had moved Landon into another NICU room, one where they keep the "less-sick" babies because he was off all of his support (except for the feed tube that goes down his nose), and because he didn't need the incubator anymore.   He still has monitors for his pulse and respitory rate, but that's it.  So that means that whenever we are there, we can hold him as much as we want.

Here's Landon, just chillin in his new crib in his new NICU room (and yes, we've since replaced the Care Bear blanket).....

And here's a view of his new environs, notice the lack of all the support equipment he used to have.....

And here's a picture of Landon and his daddy just hanging out.  In this picture I'm explaining to him the infield fly rule.....

And check out this video of Landon just watching the camera.  This video is pretty long, about five and a half minutes, you may want to right mouse click it, open in a new window, then pause it and let it download fully before you watch it.  I just started filming him and he was so cute that I couldn't stop.  He gets the hiccups a little over half way through, too cute.

On Wednesday, I went down to CHLA to see Reagan.  Just as I got there, and was scrubbing up to go inside the NICU, I saw through the windows that there were 7 or 8 doctors all around his bed doing their rounds.  I hurried up and went inside just as they were finishing.

When they were done, I talked to the attending doctor, and she told me that they were going to remove him off the ventilator all together in a few hours and then transfer him back to SJRMC on Thursday.  I'm not exagerating when I tell you that I started sobbing right then and there, I was so happy.  I got the complete debrief, jumped over to give Reagan a great big kiss (through my mask) and ran back outside to call Hillary.  Then she started crying, then I started crying again.  Then I called my mom to tell her, and she started crying, then I started crying again.  I called Amanda and left her a message, and started crying again.  We had been through so many ups and downs with Reagan that those words, that he was coming back to St. Johns, were so emotional I can't even begin to explain it.  OK, have to pause for a minute because I'm crying just thinking about it.

I went and scrubbed up again, got dressed out again, and went back in to see Reagan.  They had just done a blood gas on him and were waiting for the results to see when they would take out the vent tube.  I was hoping they were going to do it before 1pm, because I needed to get back on the road to go pick up Amanda (it was about 11am at this time).  The results came back, a doctor just happened to be right there, looked at them, and said "as soon as he wakes up, pull the vent out" (of course she used a lot of medical lingo).  As if on cue, Reagan started fussing and moving around so they decided to pull the tube right there.

Here's a picture of Reagan with the vent tube removed for the first time in over a week and a half.....

And the best part of him being off the vent tube is this.....

Now I don't want everyone to think that everything is all sunshine and roses now, I'll talk about that in a bit, I just want to focus on the "happy" right now.

As I was getting ready to leave CHLA, the plan was - on Thursday morning, there would be a new attending pediatrician at SJRMC.  As soon as she came on shift, CHLA and SJRMC were going to talk to make the transfer arrangements.  So I left, went and got Amanda, went to soccer practice, and we were on our way home when I got a call from CHLA.  Reagan was being transferred tonight, as soon as arrangements could be arranged.  I got home, made dinner for everyone (individual nacho trays with leftover chicken strips that I had grilled the other night on the side), then SJRMC called.  They were running out of boob-sauce for Landon.

So after Amanda went to bed at 9, I went back to SJRMC to take the melon juice there.  So there I was, feeding Landon, at about 11:30pm, when Dr. Kim walked in and said "Reagan is here".

And here he is, back at SJRMC.....

He flew up on a helicopter just like when he flew down there.  Two weeks old, and already two helicopter flights.

Here's a picture of Reagan in his incubator, with Landon in the background looking on.....

All right, this ends the sunshine and roses portion of the post.....

Because of all the machinery Reagan was on at CHLA, he was heavily sedated on fentanyl and versed, and as his progress started to increase at a pretty good clip, they had to wean him off the drugs pretty quickly.  Read the info about fentanyl, that's a heavy-duty narcotic.  So because of that, when he got to SJRMC, he was going through withdrawal.  Not quite as bad as the people you see on "Intervention" but he does have the shakes, and it's going to be a few days before they get him completely "clean".  They finally finished the fentanyl, which was on a drip, and replaced it with morphine which they are giving him only once every three hours in decreasing doses.

It's sad, because he starts to shake and cry as it wears off.  I was holding his hand (he did the same thing Landon did, brought my hand to his cheek) and you could see as the narcotics were wearing off, he started to shake and he started to cry and he tightened the grip he had on my hand.  I wish I could go through that for him.  The doctor said that he will be completely weaned off of all pain meds in a few days, and that he will never remember it, and will have no adverse effects.

Landon is taking to the bottle well, but he just won't latch on to the boob.  I keep trying to tell him that boobs are great, he ought to jump on the bandwagon.  We're going to keep working on it.

All right, this ends the lack of sunshine and roses portion of the post, we are now up to today, Thursday 28 January.....

Liza left for Ft. Worth today, she needed to go back for work for a while and will come back out after the boys are back at home.  I couldn't imagine being able to handle these past two weeks without her help and everything she did while she was here.

I took Amanda to school (we stopped at Jamba Juice, I had the Chocolate Moo'd, it was good), then had to go to the DMV (someone needed my rear license plate more than I did, hope they don't rob a bank with it), then met Hillary at SJRMC (since they are back together, I will now refer to it as "the hospital") at about 11am-ish.  Other than a quick lunch run and dropping off my truck at home so we had one car, we spent all day at the hospital.  Between trying to get Landon to take the boob (dude, boobs are awesome!!!!!) and feeding him bottles when he won't take the boob; and holding Reagan's hand and waiting for him to be able to be held, we had a really nice day.  The only thing that would have made it better would be if we were at home and Amanda was there with us (changing diapers and fetching me a beer, kidding, kind of).

Tomorrow is Friday the 29th.  Our plan as of now is pretty close to what we did today, going to head there as soon as we are up and ready to go and stay there most of the day with a few errands worked around Landon's feeding schedule.

More updates to follow, thanks for reading.

Phil