Our Story
Week 9:  09/14/04 - 09/20/04
 

Day 57 -- 09/14/04

5:00 AM:  Joshua slept well last night...they actually had to wake him up to feed and care for him.  His oxygen was around 40% and he didn't have any spells.  He's tolerated his feeds well, and weighs 5 pounds, 8.4 ounces (she weighed him twice to verify)!!

8:00 PM:  Josh took his whole bottle, and did really well!!  He didn't have any desats, and was awake and alert when we held him after his feed.  The doctors upped his diuretic because they think he might be retaining some water...he had such a big gain yesterday).  He weighed 5 pounds, 7.8 ounces.  All his vitals and sats looked good.  We had a good visit.  He's got an eye exam scheduled for tomorrow...I don't know why, since he just had one last week, and the last we heard was that his eyes were doing just fine and they'd follow up in 2 weeks.  Lisa, Josh's nurse, is going to check with the nurse practitioner and find out why they've scheduled him a week early (she thinks it's a mis-schedule...they schedule things out over a 5 week period, and she thinks he got put down for the wrong week).  She couldn't get in touch with the nurse practitioner while we were there, but she said she should know something by the morning.

Day 58 -- 09/15/04

5:00 AM:  I called to check on Josh...he had a good night.  He took his whole bottle at his 2:30 feed.  His oxygen has been between 27% and 33% with no spells.  The nurse I spoke with said that he's still scheduled for his eye exam, because "the doctors saw a little retinopathy, and would 'feel better' if they did another exam now rather than in a week."  I explained to her that we knew that he had the retinopathy, and that the doctors said that since it had not progressed last week, he was pretty much good to go and would just need a basic follow-up in two weeks.  I told her that I wanted to talk with the doctor before anything was done to him because I just don't see why this exam was scheduled...it seems like either someone didn't tell me the correct story last week after his exam, or I'm not getting the correct story this morning.  She said that all she could do was pass along everything to his new nurse when the shift changes, because the doctors won't be in until after she leaves.  I made sure she had my phone numbers so that the doctor could be in touch with me as soon as he got there, and I reiterated that I don't want anything done with Josh until I have a chance to talk to the doctor and understand why this is necessary...I don't want him going through the trauma of having his eyes dilated and an eye exam done if it's not necessary.

8:00 AM:  I talked with Josh's nurse, Karen, and re-explained the whole story to her....  She said that the doctor wasn't in yet, but that she would do some checking and would definitely have the doctor call me before an exam is done.  I made sure that she understood that I don't want Josh touched until I have an explanation from the doctor (it's not that I don't want him to receive care if he needs it, but I'm just not convinced that this is necessary).  She called back 15 minutes later and told me that the scheduling of the exam was incorrect, and that no exam will be done until next week.

5:30 PM:  Met with Sarah (from speech therapy) about Josh's PO feeds.  He did OK, but not great today, but Sarah was very pleased with his progress, so that was good (if she was pleased with a "not so good" (in my opinion) feed, then the good ones are even better!).  She'll check back later this week or early next week to check on his progress.

When I got home, I had a message from Dr. Focciani (the ophthalmologist).  I called him back (he gave me his cell phone number to get in touch with him!), and he apologized for the mix-up, and assured me that Josh's eyes haven't changed.  He still only has very minor damage that shouldn't be an issue in the future.  He said that the nurse this morning should never have told me that the doctors wanted to do the exam sooner than planned to make them "feel better."  He said that they schedule each baby based on their condition, age, progression, etc., and that based on Josh's other two exams, he is on schedule for an exam 2 weeks out from the last one.  Doing another exam now wouldn't really tell him anything worthwhile, and would put Josh through unnecessary stress.  He said that I had every right to be upset with what had happened, and that he wanted to assure me that Josh's eyes have not changed, they haven't gotten worse, and that there was no cause for concern.  I am very impressed that he followed u with me, and I really appreciate that he did that.

Day 59 -- 09/16/04

5:00 AM:  Talked to Josh's nurse this morning, and he had a rough night.  He desatted into the 50s at one point, and couldn't bring himself back up, so the nurse gave him blow-by oxygen.  She spoke with the nurse practitioner, and they turned his oxygen flow back up to 1 L/min. until they have the chance to talk with the doctors later on this morning, and have stopped his PO feeds for the night (he's just getting NG feeds for now).  Right before I called, he desatted into the 70s, and the nurse had to turn up his oxygen concentration.  They're going to talk with the doctor when he gets in so they can decide where to go from here.  His temperature is OK, and he slept OK, and he's tolerated his feeds pretty well.  He's 5 pounds, 7 ounces.  I asked the nurse if there was anything that changed that might have triggered the spells (he was doing so well...none for quite a few days!), and she alluded to his "stressful day" yesterday.  I asked what she meant, and she said he might have been stressed out by his eye exam.  I told her that he didn't have the exam...the scheduling was a mix-up, and she told me that even though they didn't do the exam, they did "prep" him for one.  I asked her what that meant, and she said that he'd been given eye drops and his eyes had been dilated in preparation for the exam.  Ohh...NOT a good thing...I got MAD.  I told her that I'd be in later and would be talking with the director and the doctor, so she needed to let them know to expect me.

2:30 PM:  Met with Dr. Allen, the NICU director, and the assistant director (?  I'm not sure of her position, but she was there last time we met with the director, as well).  It was a pretty good meeting, considering.  We got a lot of questions answered, and got a full update on Josh's progress, but I don't think they quite get just how mad I am about the situation.  I explained to them that I talked to three different people on four different occasions and told them that under no circumstances were they to do ANYTHING to Josh associated with an eye exam until I had the opportunity to talk with his doctor, and they flat out ignored me.  I can't be at the hospital 24-7, and I have to count on them to take care of him, and I have to count on them to honor my requests.  I only want what's best for my son, and I certainly don't presume to know more than the doctors or nurses, but I am a reasonably intelligent human being, and I do know that mistakes can be made, and it's my job as his mother to stand up for him when I think a mistake is being made.  I certainly won't interfere with him receiving proper care, but I sure as heck won't just stand by and watch when I think something is being done wrong.  It just really burns me up that I KNEW something was not right, I spoke up (4 times), and was still ignored.  While everyone there acknowledged what I was saying and recognized that I had reason to be upset and angry, I still never got an acceptable explanation as to why I was ignored.  The director told me to keep doing what I'm doing, and to keep speaking up, but I just feel like if they're going to ignore me anyway, why bother?  Of course, Josh's well-being is the answer to that question, and I'm not going to lay down and show my belly on this...if I have to, I'll take my leave now and spend 24-7 at the hospital making sure that something like this doesn't happen again...but the point is that I shouldn't have to do that.  Dr. Allen said that the nurse who dilated his eyes (he didn't give her name) did come to him first thing and told him that she'd made a mistake and she was really sorry...but to me, being really sorry doesn't excuse her -- her "mistake" (how, when I've contacted them 4 times about this, someone can make that mistake, is beyond me), in my opinion, has caused him to have spells for the first time in a week or more, and has really set him back.  You can't tell me that he's been going along on an even keel, doing great, growing, not having spells, and then all of a sudden, for no reason, started having spells again?  The only thing that changed was the eye dilation, and no one will convince me that it had nothing to do with the changes in Josh's condition.  If it gives me a migraine and puts me out of commission for the day, imagine what it does to a little tiny baby like that!  They all offered their apology, and since the actual dilation didn't medically harm him (it's not like they accidentally gave him a medicine that damaged his eyes for good), pretty much said that we had to chalk it up as a mistake and "no harm, no foul."  You can bet that I'll be even more diligent about his care, though.

The medical update from Dr. Allen was pretty good.  He gave us a preview of what Dr. Mirenda will talk with us about on Tuesday (we've got a meeting with him on Tuesday at 2:30).  On the orthopedic end of things, Josh is doing fine.  His range of motion is good, and they aren't planning on casting or splinting his foot at this point.  We need to keep doing his exercises, and we'll see how that goes.  As for his hand, it's pretty much, "watch and wait."  Josh needs to be old enough and have the cognitive and language skills to be able to tell him (and have him comprehend and follow directions) what to do for therapy when his fingers are released.  They'll have to be "trained" to work independently, and that will involve therapy to increase fine motor skills, and he'll have to be able to follow directions as to how to do that therapy.  We should get more detailed information when we talk with Dr. Mirenda.

Dr. Joe Tamez, a pediatric pulmonary doctor, evaluated Josh this morning.  He should be well enough to go home in several weeks (yeay!), but may need to go home on oxygen because he may still need that support.  They have kept Josh at 1 L/min because they think he'll do better on 1 L/min than on 0.5 L/min.  They said that it's better to have higher flow and lower oxygen than vice versa, and then once he's doing better with his oxygen demands, they'll start coming back down on the flow.  Once he gets to where he can maintain a need of around 25% oxygen (consistently less than 30%), they'll start bringing him down 0.1 L/min on his flow at a time.  He said that Josh loves to eat...he sats well while doing it, and it just seems to "charm him."  He still has "limited lung reserve" though, and needs that extra support (but this will improve over time).  As long as he's gaining height (the bulk of this is done during the first 8 years of life), he'll be growing lung tissue, so it will get better and better over time.  He doesn't think that Josh will be on oxygen long-term...he was just pointing out that even if he has the damaged/"diseased" lungs, he's got a lot of time ahead of him that he'll be growing lung tissue, so very long term, this won't be a big deal.  Dr. Allen said that Josh's going home basically boils down to feeding at this point.  They want his oxygen flow to be below 0.5 L/minute (preferably between 0.1 and 0.2 L/min), but as long as he's there, he doesn't have to be completely off oxygen to go home -- what they would do is send him home on very low flow and 100% oxygen (instead of the 2 variables they have at the hospital, they'd lower the flow to very minimal and give him 100% oxygen, and have only 1 variable to deal with at home).  They would send him home on a monitor that would check his heart and respiratory rate, and would alarm if he gets above or below certain parameters (there wouldn't be monitors like at the hospital).  It's not guaranteed that he'll go home on oxygen, but he wanted us to be prepared for that possibility...particularly if his eating continues to improve and go so well, everything else may come together before he no longer needs the oxygen support, and they won't keep him there if everything else is good and his only "not so good" thing is the oxygen.  Dr. Allen suggested that we get in touch with our pediatrician and make sure that she would be comfortable with a baby on home oxygen (and possibly diuretics)...if so, great; if not, we may want to consider staying with the hospital's doctors, then switch him once he's off oxygen and medicine.  That way, we'll know where we stand regardless of whether he comes home on oxygen or not.  They have also changed his medications a little...they've added something called Aldactone, which (I think) is another type of diuretic, but it helps keep Josh's electrolytes (potassium in particular) stable.  As a result, they've discontinued his potassium, and will wait and see how that change does for him.

We came back to the hospital for Josh's 5:30 feed, and had a good visit.  I was worn out from the day, and it was really good to just relax and spend some time with him.

Day 60 -- 09/17/04

5:00 AM:  Josh's oxygen is good...he's still at 1 L/min, and at 28%.  He hasn't had any spells, and had a pretty good night sleeping.  The nurse tried a bottle feed overnight, but he didn't do great with it, so she didn't push him...she didn't want to risk causing him to have a spell (smart woman!).  He weighed 5 pounds, 8 ounces.  He got a bath and had lab work done (wasn't happy about the lab work, but there's not a lot that can be done about that).

8:00 PM:  Josh had a pretty good day.  He had 1 spell, but I don't think it was a bad one.  We visited with him...took his temp and changed his diaper.  He woke up a little more than he has been recently.  He gets 50 ml for his feeds, so the nurse put close to 60 ml in his bottle to allow for drippage and leakage.  He took the WHOLE THING without spilling more than a couple of drops...little tubby!!  He did SO WELL...it was a great feeding!  We cuddled after the feeding...he was very awake and alert for both me and Chris.  Desatted into the low 80s a little, but came back up OK without any trouble.  It was a good visit.  I think he might end up having a dimple in his left cheek...occasionally I'd look at him and he got this little indentation in his left cheek...how cute!

Day 61 -- 09/18/04

5:00 AM:  I called to check on Josh this morning, and he's doing well.  No spells, and he's sleeping comfortably.  He had a bottle at 2:30, and took the whole thing!  He weighed 5 pounds, 9 ounces.

11:00 AM:  Visited with Little Man -- he looked good.  We bottle fed him at 11:30.  He did OK, but when he was almost finished, he threw up almost the whole thing.  His poor little belly must be upset!  We got him all cleaned up, changed his clothes, and put him back to bed...he didn't seem any the worse for it, but I felt bad for him.  We talked to Dr. Haarens, and she wrote orders to allow me to try to breastfeed him once a day -- I'm very excited about that...hopefully he'll do well with it!!

8:00 PM:  Visited with Josh this evening.  He had a really big poop after we left, but did OK with the rest of his feeds (he must have just been "full" and adding that feeding at 11:30 was just too much).  He seemed a little agitated...maybe his belly still doesn't feel quite right.  I finally got him settled, and we tried nursing.  He latched on pretty well, and sucked for about 10 minutes.  We switched sides, and he went for about 5-10 more minutes.  Don't know how much he got...we offered him a bottle (as per doctor's orders), and he only took 5 ml more...hopefully that's a sign that he got enough from me!  If not, I'm just glad that he doesn't have that much longer until his next feed!

Day 62 -- 09/19/04

5:00 AM:  Joshua is doing great!  His oxygen is at about 25%, and he hasn't had any spells.  His nurse gave him a bottle at 2:30, and he took the whole thing...he woke up for his feed, then went right back to sleep.  He weighed 5 pounds, 10.8 ounces.

11:00 AM:  Visited with Josh. He did well with his feeding...he spit up a little, but not nearly what he did yesterday.  His grandma (my mom) got to hold him after his feed...he did well with her.  His nurse, Dee, is wonderful...she's a great advocate!  She suggested to the doctor that he is probably able to go to every other feed from the bottle, and the doctor agreed.  In addition, she wrote the orders for Josh to be able to breastfeed twice a day.  I'm not sure I'll be able to make it in to do it twice every day, but having that option is wonderful!!!  We'll try it again tonight and see how things go.

8:30 PM:  Josh had 2 of his immunizations today.  When I got there, I got him up to feed, but he wouldn't really try to nurse.  He'd give one or two little sucks, then fall asleep.  We even tried a cool damp cloth to his head, but had no luck.  I decided to let his nurse, Maggie, feed him with his NG tube -- I think he was just too worn out from his shots to even try.  We're going to wait several days before I try to nurse him again -- give him some time to recover from his shots (he gets the other 2 tomorrow).  Hopefully, by then, he'll feel a little more like trying to nurse.  It was a disappointing evening, but I'm trying to keep it in perspective.

Day 63 -- 09/20/04

5:00 AM:  Josh had a pretty good night.  He slept all night.  Maggie said that he only took about half of his PO feed, and he was a little fussy and sleepy.  His oxygen has done well -- he's at around 27%, and hasn't desatted much.  He weighed 5 pounds, 12 oz.

4:00 PM:  Joshua is doing well.  He took his bottle well at his 8:30 feed.  Didn't do so hot at his 2:30 feed...his nurse had to give him the last 15 ml through his NG tube (he's up to 55 ml total).  He hasn't had his other shots yet, but seems to be tolerating the first two well -- he hasn't had any spells or fever, he's just been sleeping a lot.

8:00 PM:  Had a good visit with Joshua Ryan.  I went early and cuddled with him, then pumped and came back out to feed him.  He took his whole bottle in 10-15 minutes (he barely stopped to breathe!) -- he tried to quit breathing once at the very beginning, but we turned his oxygen up a little and got him settled, and he did pretty well (the nurse gave him a little blow-by oxygen just to help bring him up from the low desat).  We cuddled some more after he ate, then he and Daddy cuddled.  He seemed a little uncomfortable (probably a little achy from his vaccines), but once he settled, he slept pretty well.  His oxygen was at 23-24% when I got there, and they were weaning him back down from where we turned him up while he ate when we left.  Took a few pictures.  Over all, it was a good visit.

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