Haven had a good day today as she continues to do well on dialysis.  We did notice this morning that her dialysis tube site was leaking.  After testing the contents of the leakage, it was determined that the dialysis fluid was leaking out a little.  This type of leak has major risks for infection, so they reduced the amount of fluid that Haven receives every hour.  Read the rest of this entry »

Haven has technically been on dialysis for a little over 24 hours now and is doing very well with it.  The doctors are still trying to optimize the treatment to get the desired results, but the treatment is working so far.  Haven peeked at us several times today–just barely able to open those eyelids for a brief second.  We also restarted her feeds back up today.  The two major things that we wanted to see done for Haven right now was getting rid of the excess fluid and increasing nutrition.  Both of those are happening and we are happy with the progress so far. Read the rest of this entry »

Let’s start off by saying that Haven is now successfully on dialysis and is doing well with it so far.  We’ll need to keep a close eye on her as dialysis has many high risks associated with it (especially for Haven).  One of the bigger concerns with this treatment is blood pressure.  Removing large amounts of fluid can have a very negative effect on one’s blood pressures.  Read the rest of this entry »

They were unable to squeeze Haven in to the operating room schedule yesterday, so she is going in first thing this morning.  She will be having the dialysis tube placed in her abdomen, and they will also be taking a muscle biopsy in hopes to be able to better characterize her medical condition.  We will post again this afternoon/evening when we know how it all went this morning.  Thanks for your prayers.

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 »