Our Story
Week 11:  09/28/04 - 10/01/04
 

Day 71 -- 09/28/04

5:00 AM:  I called to check on Joshua.  He did well over night.  His nurse, Kim, said that he was kind of sluggish for his first feed (he'd had a bath, so she thought he might just be tired).  She said that he acted more like himself for his second feed, and did well with it (no regurgitation or problems).  He hasn't had any spells, and has been at room air except when he's eaten.  He weighed 6 pounds, 4 ounces, and had a good blood gas.

PM:  Dr. Heerens did Josh's circumcision today.  He seemed a little more fussy than usual, but nothing terrible.  I personally think the circumcision looks awful (not that it wasn't done properly...it just looks like it hurts!!).  I think that him being a little uncomfortable may have been an advantage, though, because he was a little more alert and awake.  He actually latched on and sucked a little -- I don't think he got that much, but at least he tried!  Hopefully we're on the right track.

Day 72 -- 09/29/04

5:00 AM:  Josh had a good night.  He had one brief spell with his feed, but his nurse found afterwards that his leads had "migrated" to his belly and weren't picking up right, so it probably wasn't a true spell.  He did have some desats, but they were mostly associated with him spitting up.  His oxygen was at 29%, and he weighed 6 pounds, 6 ounces.  The Tylenol appears to be helping with his discomfort from the circumcision -- he doesn't seem to be as fussy.  His nurse said that the last time she fed him, he desatted 3 times with apparent reflux, so she was going to mention that to the doctor so that hopefully we can get that taken care of.  he did eat everything, but has some small spit-ups, and desatted with the spit-ups.  He was alert and awake for his feeds, and seemed more like himself (not as sluggish).  His nurse pointed out that one of his medications (Diuril, a diuretic he's on because of the fluid in his lungs), he takes at 10:00, which is not at a care/feeding time.  She's going to check with the doctor to see if it should be moved to be given when he actually has a feed.

PM:  Josh has done well today, but the doctors are going to restart him on his medications for reflux.  Hopefully that'll help out with the issues he's been having.

Met with the lady from the Home Health department at Carilion about take-home oxygen for Joshua.  It's all pretty easy, just a pain to deal with.  She showed us how to work the oxygen, set the regulators, and work the monitor (which is REALLY loud!).  She said that the typical scenario is that the babies will go home on oxygen and a monitor, they'll have a follow-up at about a month out, then they'll make a decision there.  If they decide to take the baby off the oxygen, they'll probably stay on a monitor for about a month longer, so we're looking at least at about 2 months on oxygen, a monitor, or both.

8:00 PM:  We had a good visit with Josh this evening.  His sats looked good, and his oxygen was in the mid to upper 20s.  He actually sucked some -- tried to nurse!  He didn't do great, but did better than before.  He took 18 ml from the bottle afterwards.  Nothing else major, just the considerations for his home oxygen.  Hopefully he'll just need blow-by for feeds and not continuous flow!  He weighed 6 pounds, 8 ounces.

Day 73 -- 09/30/04

5:00 AM:  Called to check on Josh, and he's doing great.  He's at 100% oxygen on 0.2 L/min flow (big change from yesterday...I need to talk with the doctor to make sure that's right).  He's had no spells, and no desats, and hasn't had any spit-ups since 3 PM yesterday.  His PO feeds are going well, and he's taking his Reglan and Zantac every 8 hours, which seems to be helping with the reflux.  All his vitals look good.

11:00 AM:  I talked with Dr. Heerens to find out what the deal is with Josh's oxygen.  She said that they've been using this week to figure out what exactly he needs to go home.  He's done well all week...getting the flow down step-by-step, and moving to room air at each step.  Once he hit 0.4 L/min flow, he developed an oxygen requirement (they couldn't get him down to room air at 0.4 L/min...he needed a little extra in order not to desat).  What this means is that he needs some sort of continuous oxygen.  The problem is that once he comes home, we can't do blended oxygen -- it's either 100% or 0%.  Since he needs something, we have to go with the 100%, so we're going to that and now trying to drop his flow requirements.  Dr. Heerens talked with the ophthalmologist, Dr. Facciani, who said that the 100% oxygen at 0.2 L/min flow wouldn't harm his eyes, so we're going with that and seeing where it gets us.  She said that the monitor that he'll go home on is pretty much just a protocol thing -- the rule of thumb is that if they go home on oxygen, they also go home on a monitor (she said that had he gone home on blow-by for feedings only, she probably wouldn't even have recommended a monitor, since apnea spells aren't really his issue).  She's going to make phone calls today to set up various follow-up appointments for us, and she's going to write prescriptions for us to get and have ready for when he comes home.  Her goal is to get Josh "perfect" by the time she leaves tomorrow, and then Dr. Allen will be back in to take over and will handle Josh's discharge.

8:00 PM:  Visited with Little Man -- he was awake and alert after a few minutes (all snuggled in when I first got there).  Took his temp, did his foot exercises, and changed his diaper (circumcision looks much better -- still a little swollen, but not as raw and painful looking as before).  Got him out to nurse -- he did pretty well...better today than any other time.  I think he got frustrated that it didn't come out any faster, because he got restless, rooted his face around, squirmed, moved his arms around, etc.  He spit up just a little -- kind of mucous-like, so maybe he's a little congested...?  Offered him the bottle after he nursed, and he took about 30 ml, so he must have been hungry.

His oxygen was down to 0.1 L/min, and he was satting near 100%, so that's good.  They've changed his food somewhat -- he's down to 24 calories/ounce rather than 27.  They've also upped his recommended intake from 45 - 60 ml to 55 - 70 ml.  After he ate, we snuggled -- he fell asleep on my shoulder.  Good visit.

Day 74 -- 10/01/04

5:00 AM:  Josh had a bath overnight, and did well with it -- didn't cry at all.  He held his temperature pretty well, and his feeds are going well.  He's stayed at taking around 55 ml, but hasn't had any reflux or spit-ups.  He weighed 6 pounds, 10.6 ounces (they weighed him twice to make sure!).  His sats have been fine, and they did lab work, which should be back later this morning.

PM:  Lab work looked good.  Got together plans for coming in to room-in.  We're heading over this evening to stay overnight at the hospital with him, and with any luck, we'll be able to take Joshua Ryan home from the hospital tomorrow!!!

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