Haven’s new doctors have been busy implementing their plans to discover what lies behind her issues.  They have also been very kind enough to spend some time with us discussing the ideas behind everything they are doing.  Turns out that apart from her heart there is quite a bit of concern about her kidneys, her thyroid, her muscular system, and her liver.  It’s not quite clear at this point whether or not the problems are related, come from the same source, or are isolated occurrences.  Read the rest of this entry »

It’s been a bit of a big day.  Since Haven has been struggling with issues that do not appear to be directly related to her heart’s function, her care has been transferred to the Pediatric Critical Care team.  This team of doctors will have a more wholistic approach to managing Haven’s recovery.  We feel this is a good decision that has been made and look forward to having some fresh ideas come to the table. Read the rest of this entry »

Haven had a restful day today.  They increased her feeding amount.  She’s now up to 3 mL per hour.  Still a long way to go, obviously, but she seems to be tolerating them well.  Unfortunately, she continues to retain fluid in her tissues and the cause remains unknown.  Since she is not putting out as much as she is getting in, she is getting bigger and bigger, again.  Read the rest of this entry »

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 »