Yesterday we noticed something peculiar about the ceiling tiles in Haven’s room here in the ICU.  Tiny water droplets began forming on the tiles.  As the day moved on into night, the droplets became bigger and bigger.  We were obviously talking with the nurse about it and she was going to get someone to come by and take a look at it.  Read the rest of this entry »

Haven had a good day today.  She’s doing well with the antibiotics fighting those infections, and thankfully there doesn’t yet appear to be an infection associated with her dialysis.  Her dialysis tube has not leaked either.  A few more days of that, and we may be able to begin a bit more aggressive treatment.  We continue to increase the feeds very slowly:  a little bit each day. Read the rest of this entry »

Haven had a good day today.  Her temperature was better, and she was feeling much more herself.  Her G-tube site is looking much better, too.  The surgeon came by and put an extra stitch around her dialysis catheter.  He also used some surgical glue that sort of works like window caulking.  It’s supposed to seal up any cracks to prevent leaks.  Hopefully, it will work so that dialysis will be more effective.  If we can stop the leakage around that site, we may be able to be a bit more aggressive at getting fluid off.  Thanks for checking up on us.  We’ll keep you posted!

Haven is acting a little under the weather today.  That may seem like an understatement considering everything she is going through, but she just wasn’t her usual chipper and attentive self today.  She has been restless and lathargic for most of the day, but has stayed pretty comfortable with pain medication.  We have tests out to see if she has caught an infection, but nothing has come back positive yet.  She had a large blood clot come out of her old feeding tube site so we are investigating that to see what may be going on inside her stomach. Read the rest of this entry »

Haven looks even better today as she continues to loose fluid.  She’s not putting out quite as much as she has been, but still shedding some.  We’ll get there—slowly but surely.  Since we’ve had (thankfully) a couple of boring days, Haven decided to remind us that everyone around here has to stay on their toes.  Read the rest of this entry »

Haven had a great weekend.  Not only did dialysis continue to fare well, but she enjoyed several visitors, too.  Her feet and hands are back to their long and slender selves, and her beautiful eyes have opened up and are looking all around.  The dialysis appears to be working from her extremities inward, so this week we’re hoping to make even more progress getting Haven back to normal Haven size.  All three of us are grateful for your thoughts, prayers, support, and encouragement.  This certainly would be harder without you, and we thank our loving and most gracious Lord each and every day for you and the edification we receive from you. 

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.