Haven had a good day today.  She allowed us to take several steps forward on the ventilator weaning process.  Due to her fluid retention, she received some new medications to aid her in shedding some of that fluid.  We also are in the process of scheduling a visit to the cardiac catheterization lab this week.  They plan on sending in a little camera to look around Haven’s vascular system in search of anything they could be missing that might be causing some of these peripheral problems that Haven has been experiencing.  This will be a new experience for all three of us. Read the rest of this entry »

Haven had a good day today.  Her numbers were fine all day, but we didn’t make any changes to the ventilator settings.  We’re hoping to resume progress there tomorrow.  She is still retaining lots of fluid and is quite puffy again.  Her abdominal area is still very distended, but it doesn’t appear to be giving her any more breathing problems.  The only real excitement today was that her G-tube almost fell out of her stomach again.  Read the rest of this entry »

So Haven’s belly just keeps getting in the way of her lungs.  We had an episode much like we had the other day when her abdomen was so distended that it caused her some breathing distress, so today we had to readjust some of the ventilator settings to help her cope with that.  But, just like the other day, once she got rid of some of that air that’s trapped in there, she was fine and we were then able to come back down on the ventilator settings to where she had been previously.  Read the rest of this entry »

Haven had a much better night last night.  It appears that the respiratory problems she was having were related to some issues she is having in her abdominal area.  The difficulty lies in the fact that we don’t really know what the problem is, but what appears to have happened is that something had caused her abdominal area to become very distended (expanded and hard). Read the rest of this entry »

Haven has been working real hard today to try and keep getting better.  This afternoon she started having some respiratory issues, so we’ve had to go back up considerably on the ventilator support.  The reason for her struggles this afternoon is still unknown, but we’re trying hard to figure it out for her.  We have a feeling that something isn’t quite right with her body in terms of managing her fluids.  Read the rest of this entry »

So Haven’s goals for this week have been to wean off the ventilator support and shed unnecessary fluid in her tissues.  (You may have noticed from her most recent pics that she is a bit on the puffy side again).  She has been doing a decent job with both of those…until mid-day today.  We noticed that though she was sleeping like a rock, her heart rate was a little high and unchanging.  As an experiment, we decided to try to wake her up a bit in hopes that her heart rate would increase.  No such luck.  After we had her moving around and worked up, her heart rate remained unchanged.  Well, we’ve all seen this before…several times.  Read the rest of this entry »

The docs decided to remove the last of Haven’s chest tubes today, so she is now officially chest-tubeless.  We’re still not out of the clear totally: we can’t quite remember, but we think the longest she has gone without chest tubes has been about 48 hours before needing them re-inserted.  We’ll watch the x-rays very closely over the next few days to see if any fluid is accumulating.  Read the rest of this entry »

The results are in from Haven’s blood tests regarding her infection:  she has staphylococcus.  You probably are more familiar with “staph infection”.  Unfortunately, they say she has a pretty serious form of it.  We were obviously concerned about how this infection would affect her heart.  The doctors said that the body’s response to it is very individual for each patient.  This gives us all a good explanation for the blood pressure issues she was having earlier this week.  Read the rest of this entry »

Haven’s blood cultures came back positive yesterday.  This means that she does have an infection, so she is getting lots of antibiotics to aid in fighting it.  As you know, Haven has had an elevated white blood cell count several times in the past, but the cultures always came back negative indicating that there was no infection or bacterial growth.  Read the rest of this entry »

Haven had an eventful day yesterday.  First of all, she was one sleepy baby.  She was asleep when we arrived in the morning.  She slept right through her morning shot, diaper changes, and even her physical therapy session!  So as we became more curious as to why this little baby was so tired, we began to notice that her heart rate seemed sort of stuck in one spot.  “Uh oh,” we thought, “we’ve seen this before.”  Well, we waited it out awhile, then her blood pressure dropped a little too low.  Then we new something was the matter.  The cardiologist came in, and thankfully since we’ve all seen this behavior before, we knew exactly what the problem was and what needed to be done.  Haven’s heart was stuck in an Atrial Flutter again.  Read the rest of this entry »