We were finally able to speak with the metabolic/genetics doctor yesterday.  The results of her chromosome test came back, so he was able to share those results with us.  The test itself came back negative.  That sounded very good to us, but upon learning more about how that test works, it turns out that the results just leave more unanswered questions. Read the rest of this entry »

As we progressed through Saturday, Haven’s urine output slowly decreased to practically nothing.  This was very concerning for everyone.  There is great concern as to just how much more fluid overload Haven’s body will be able to tolerate with such poor kidney function.  We spoke for a long time with the kidney doctor Saturday evening discussing dialysis and what that would look like for Haven specifically.  There are many many risks involved with that procedure espcially for someone with a major heart defect and liver failure; however, it may be her only opportunity to get past this point. Read the rest of this entry »

Not much new today.  We took another trip back downstairs to have a repeat kidney study.  Actually, it was a continuation of yesterday’s study.  The results of the kidney study say that Haven has severe ATN (Acute Tubular Necrosis).  The easiest way to describe it is that her kidneys are functioning at a very poor level.  We already knew this, of course, but the test does confirm it.  Currently, she is not able to keep up with the amount of fluid she is getting in, and conversations about dialysis have started again.  One thing to keep in mind:  with as much fluid as she has retained through all of this, even if her urine output was continously stellar it could take weeks and weeks before she got rid of enough fluid to bring her back down to “normal”. 

We were supposed to have a meeting with the metabolic/genetics doctor today, but he got tied up so we had to cancel the meeting.  Therefore, we have no new information to report in that arena.  Thanks for checking up on us.   

So Haven had a really good night last night from a stability standpoint.  Fluid is still a bit of a problem.  Yesterday she was still about 200 mL more in than out.  She actually had a good day today as well (from a stability standpoint).  So far today she is just a few mL’s negative; she’s been floating right around even most of the day.  We took another field trip today.  On our way down to the kidney scan, we made a pit stop for a CAT scan of her brain as a follow up to yesterday’s MRI results.  Haven did a good job through all of that despite the fact that traveling in her condition can be very stressful on her. Read the rest of this entry »

Haven had MRI’s for brain and liver scans originally scheduled today for 5:30pm.  Sometime this morning, they thought that it might be more beneficial to do them earlier in the day, so they moved them up to 3:30pm.  Getting Haven ready to go on a trip anywhere outsied of her room is quite a cumbersome ordeal, so we started getting everything ready around 1:00 or 1:30pm.  Read the rest of this entry »

As you know, early Saturday morning Haven lost her I.V. access line.  We finally got a new line in place, but were not able to give her her appropriate medications until 5:00pm that evening.  That means she didn’t get her regular regiment of meds for approximately 16 hours.  That’s a long time.  This seems to have caused some less than ideal situations since.  Our biggest concern at that point was that during those 16 hours, her urine output decreased dramatically, and once we got her medications back up and running her urine output remained minimal throughout the rest of Saturday night.  By Sunday morning she had retained so much fluid (because she wasn’t urinating at her previous rate) that she gained a little over two pounds. Read the rest of this entry »

Well, it’s the weekend. That means it’s time for unexplainable things to happen when you least expect it. Very early this morning, Haven’s I.V. access line came out. So she has been unable to get all of the medications that she would normally be getting. She’s fine from a stability standpoint, but what she is missing are things for nutrition and shedding fluids. Since she wasn’t able to get those things, her In-versus-Out numbers aren’t quite as stellar as they have been. She was 56 mLs more out than in. We’re just thankful that she still had a negative balance. That means at least she’s not gaining fluid. The plan is to get a new line put in this afternoon (that’s been a little bit of a struggle as they typically avoid doing these kinds of things on the weekends), then we can start her back up on her meds. Hopefully, she’ll be able to pick up where she left off. Other than that, she’s just hanging out.

This afternoon we had a conference with Haven’s doctors to discuss the issues at hand.  The focus of this conference was for the doctors to reassess Haven’s status and lay out a new plan of action.  They also wanted to make sure that we understood the seriousness of the situation we are looking at.  Haven has a very serious and rare heart condition.  As we all know, she as and always will have only half a heart.  The prognosis for kids with this anatomy is not always a good one. 

As test results are coming back, different pictures of the puzzle are falling into place.  Read the rest of this entry »

Haven’s new doctor (the biochemical geneticist/metabolic doctor) has requested a conference this afternoon which would include us and all of Haven’s other doctors.  We’re assuming this is to align everyone with his desired plan of action and what he is thinking.  We’ll definitely write a post for you all some time after that meeting to let you know how it went.  But in the mean time, we wanted to let some of you number crunchers know that Haven had 266 mililiters more out than in yesterday, so she’s keeping up the great work.  We also forgot to mention yesterday that it was Haven’s four-month birthday.  Happy Birthday, Haven!

…where’d you get those peepers?  We were so happy to walk into Haven’s room this morning and see both of her big eyes looking back up at us.  They’ve been swollen shut for several days.  Yesterday, she was able to crack open one eye just barely depending on which side she was laying on, but today she was able to open them both up a little bit for us.  She doesn’t like to miss a thing so she worked real hard to catch a glimpse. Read the rest of this entry »