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+ 0 - 0 | § Brave nurses...

Today was again pretty much the same as yesterday.  Alex didn't get to move locations...there was a double trauma last night in the PICU, so the NICU had to take in a couple of babies that were over there, causing all of the beds to fill and Alex to stay where he is.  They are still trying though.  We'll see if it ever happens.  The docs took his epidural tube out this morning, so he isn't getting the good drugs anymore.  He doesn't seem to mind much though...I don't think that he's in much pain now.  He really is tired of the vent tube though.  They are slowly working on weaning him from that machine, but it may take a few days.  They want to avoid another episode like Tuesday's.

One great thing today is that a very brave nurse allowed me to hold Alex this evening.  Alex was pretty fussy, as he seems to be when we're around these days.  I think he hears our voices and wonders why we aren't holding him like we used to.  In any case, he fell asleep almost immediately after being put in my arms...that's probably the best compliment I could have received.  I am really looking forward to the opportunity to spoil him rotten someday...

As a side note, Happy Birthday, Natasha!

+ 0 - 0 | § An uneventful day...

Alex is much the same today as he was yesterday.  He is still on the standard vent, which the docs intend to keep him on for a few days yet.  (They want to make sure not to repeat this week's events.)  He is requiring a little less oxygen on this vent than yesterday, but not by too much.  One thing that might change tomorrow is his bed location.  Right now, he's in about the worst bed in the's loud (near the nurses' stations and right along the walking path to everywhere else), they use it constantly for recharging equipment, it's brighter than any other spot, and it has a serious draft descending on it from the air conditioners above.  Alex was really having a hard time getting to sleep this evening, so his nurse asked about the possibility of moving it turns out, they are doing a baby shuffle tomorrow to make some room for the recent newcomers to the unit, and Alex may be able to transfer to a corner bed near the windows.  I hope that they are able to do it...I think that our little angel would benefit from some peace and quiet.

+ 0 - 0 | § More progress..

They've continued to wean Alex from the breathing support.  They discontinued the NO this morning, and changed him from the oscillatory vent to a normal vent this afternoon.  He's handled the changes fairly well, too, requiring only slightly more oxygen and maintaining good blood gas levels.  They are taking chest x-rays of him every few hours, all of which show that he still has a good bit of fluid in his right lung, but they are hopeful that the fluid will start to reabsorb into his body and out of his lungs.

Other than that, he's still being sedated occasionally and they expect to take out the epidural tube tomorrow.  So, he's making progress, though all of these breathing issues are going to delay the feeding attempts and checks for leaks at the surgical site.  One step at a time...

+ 0 - 0 | § Still stepping...

They have continued to wean Alex from the NO.  His blood tests have been looking pretty good (not too high CO2), so they turned down the settings to 5 ppm.  I also got to chat with the doctor that was on site when Alex had the problems yesterday.  He said that it's common for the upper right lung to collapse in people in general, just because it's the part that is hardest to drain of fluids.  In Alex's case, he has so many secretions that they probably caused some higher pressure in that lung, which collapsed it.  In any case, he also said that it's unlikely that Alex will suffer any long-term effects from the episode.  He said that when his saturations were really low, his heart was beating okay, and when his heart was slow, it was only for a short period of time.  This makes me feel much better coming from the doctor who was present at the time.  All of the other docs would avoid answering my questions on the subject, telling me that they weren't there and couldn't make any guesses.  They are going to take another set of blood tests at 2Pm...if they look good, they may take the NO off completely.  Here's hoping!

+ 0 - 0 | § baby steps

They've continued to wean Alex from the respiratory support through the night.  He is down to 10 ppm NO (from 15), and is currently on 23% oxygen (though they said that he required as high as 60% last night).  They are also slowly turning down the settings on the respirator part (how much it breathes for him).  One thing that I did find out last night that is really scary to Dan and I is that Alex was really in bad shape yesterday morning.  His oxygen saturation was below 10% (about 80% is normal for him), and his heart rate had gone down to 20 beats per minute (from 120-150).  They were doing chest compressions (CPR) on him prior to getting him on the vent.  I am really thankful for everyone here at the NICU...they saved Alex's life yesterday (and probably every day since he was born).  They can't say if the oxygen deprivation will cause him any long term problems, but for now, they told me that he looks good.  He is moving around, waking up and looking around at people and things, and acting a lot like he did before any of this happened, so that's a good sign.  I guess we'll just have to continue to wait and see what happens...

+ 0 - 0 | § Some improvement

So, it seems as if the problems today may have been related to the pneumonia he had last week.  When they x-rayed him earlier, they found that the top of his right lung had collapsed, which caused him to have the respiratory failure that put him on the respirator.  The pneumonia he had was in the same place, so it may have been that the illness weakened that part of the lung and when they sedated him following his surgery, he started breathing more shallowly, causing his lung to collapse partially.  In any case, his shunt was open and not blocked or collapsed, so it doesn't appear as if his heart was the cause.  That is definitely a good thing.

As for Alex, he is doing better this evening.  They have started to wean him from the NO, which was helping to reduce the pressure in his lungs.  (An echocardiogram showed that he didn't have any increased pressure in his lungs, so they don't think it's needed.)  They were also started to turn down the settings on the vent.  He is awake now and then, and he seems to be looking around and moving pretty well.  I'm hopeful that things will continue to improve with him.  I'll keep posting when there is a change...have a good night everyone!

+ 0 - 0 | § Gray hair...

As one of the nurses said this morning, Alex is giving us gray hair these past two days.  He is now on a ventilator as Dan said, but a special kind of one called an oscillatory vent.  It breathes both in and out for him and very quickly, whereas a normal vent just pushes air in.  The doctors aren't giving us a whole lot of information about what happened this morning and what impact it could have on Alex's recovery, but from what we can gather, he was in some trouble.  They said that his lungs either have fluid in them or they were partially collapsed and that it could just be because of secretions again, or it could have been as serious as a blood clot that formed in his shunt and moved to his lungs.  I guess they plan to do some research into the causes at a later time, but for now, they are just keeping him stable.  He was given a transfusion, and is on antibiotics now through a central line that they put in a vein in his leg. Another problem they were having earlier was access to IV lines...his weren't cooperating, so they put in this central line.  The good news with that is that he won't have to be stuck anymore. 

If anyone needs to contact us, I will be in Hershey until Alex's condition stabilizes.  There is a waiting room with beds here that I'll stay in during the night.  Please use to contact us.  I'll check it now and then when I can.

+ 0 - 0 | § A setback

Got a call from the NICU this morning, and they say that Alex is having a bit of a hard time keeping his oxygen saturations up. At first they thought that it might be a blood clot in the shunt, now they think that his blood pressure in his lungs was too high, so not enough blood was going there. Either way, he's now back on a ventilator. They called again, and said that with nitrous oxide, they were able to get the carbon dioxide levels down, and it appears that he's doing better. His sats are where they are supposed to be, but it will be a while until they will take him off the nitrous, and longer until they will take him off the ventilator.

+ 0 - 0 | § The longest day...

So, the day is mostly over.  Alex spent 6 hours in the OR, and Dan and I spent the entire day being worried (perhaps the understatement of the year).  Things turned out pretty well with Alex's surgery.  Dr Cilley (his surgeon) said that his esophagus is together, though they had to stretch it pretty hard to get it where it was.  He also said that they discovered that Alex actually did have a connection between his esophagus and his trachea.  It was a pin-sized hole and it connected the top half of his esophagus to his trachea.  This means that Alex had one of the least common versions of this defect, which occurs less than 1% of the time.  They were able to disconnect the two and fix the hole in his trachea, though, and they don't expect him to have any ill effects from that part of the defect. 

The outlook right now is fairly positive.  Alex will have to undergo some stretching in the future, because it is likely that the site of the surgery will constrict as it heals.  For now, it's another waiting game.  We need to wait and see how the connection heals, and this will determine how long he's in the hospital and how soon they can start him on mouth feeds.  The plan is to do a leak study in 7 to 10 days.  If the site leaks, then it will take more time to heal.  If it doesn't, they may start feedings.  We will of course update the blog as we get new information.

As for Alex, he was okay.  He came back from surgery wide awake.  They had given him an epidural in order to help with pain management, but they hadn't started the medication, so he was hurting for a while until they could get the appropriate people in to start the meds.  That was very difficult to could tell that he was in a lot of pain, but couldn't do anything about it.  The docs responsible for starting the meds weren't exactly in a hurry to get to him.  He was also really puffy because of all the fluids they had given him.  On the brighter side, he didn't need a blood transfusion and they were able to take him off the ventilator before he was back in the NICU.  When we left, he had finally gone to sleep...they are hoping to keep him sleeping and comfortable tonight.

So, we made it through one of the hardest days of my life.  It's anazing to me what this little boy has gone through already in his left and it's all I can do to hope that things get better for him soon.  I know that he'll have more trials ahead, but maybe he'll at least get a little break in between?

+ 0 - 0 | § Still in the OR...

It's been five and a half hours and he's still in the OR.  The docs called a bit ago and told us that they were able to reattach his esophagus, so that's really good news.  I just thought I'd post that bit of info so that we don't have to worry about it later when Alex comes back.

+ 0 - 0 | § He's in surgery

Alex just went into surgery just now. They say that he'll be in for 3-4 hours. As before, when he comes out, I won't have a chance to update the blog right away in all probability, so no updates doesn't mean bad things.

We were waiting for 2 and a half hours extra today, because someone jumped ahead of us in the schedule. It must have been an emergency. This wouldn't have been so bad, but they didn't tell us, and we just waited and waited. Oh well, alls well that ends well.