Haven is remaining steady through this crucial time in her recovery from yesterday’s procedures.  As is normal with such surgeries, she has been getting lots of fluids in her body, but her body has not been able to keep up with getting rid of those fluids.  So, she is getting a bit more puffy again.  Don’t worry, she’s not nearly as puffy as she was in December while she was on ECMO, but she is puffy.  It will be several days before her body will be able to catch up and start to move the fluid out.  She still is on a good dose of pain medication, but she has opened her eyes a couple of times as the sedation has been wearing off.  Read the rest of this entry »

Haven came through her surgery in good shape.  She is back in her room now and everything looks pretty stable.  The surgeons were able to perform all the procedures they planned to do.  First they looked around her lungs and chest to see if they could find a specific source of the fluid in her chest.  They were not able to locate a specific leak so they believe the fluid is just draining out of all her tissues.  They performed the pleurodesis to eliminate the space where the fluid was accumulating on the left side.  Hopefully that procedure will stop the drainage on that side of her chest and on the right side too.  Then a new surgical team performed the rest of her procedures.  They were able to do the Nissen to keep her from vomiting and also insert a G-tube into her stomach.  She now has a new incision on her left side, two new chest tubes, an incision on her stomach, and a tube coming out of her stomach…but she no longer has any tubes in her nose.  She will appreciate that when she wakes up! Read the rest of this entry »

They have just taken Haven back to the operating room.  They were able to get her in sooner than expecdted.  So they will procede with the exploratory thoracotomy where they will search for the source of the leaking chest fluid.  If they can find the specific source, they’ll hopefully be able to stop it.  If not, they will perform a pleurodesis which will eliminate the space in her chest cavity so that the fluid has to remain in the tissues instead of leaking out.  Read the rest of this entry »

Haven has been sleeping a lot the past 24 hours or so. We think this rest will be good for her as she tries to fight a possible infection and is getting ready for her surgery. If she continues to do well today, the doctors would like to take her to the operating room tomorrow as opposed to waiting until Wednesday. Otherwise, everything else is pretty much the same as yesterday. Thank you all for continuing to follow Haven’s progress as she battles to overcome these ailments. The three of us appreciate the thoughts, prayers, and encouragement from all of you.

When we walked into Haven’s room this morning she was laying on her side just bright-eyed and very content. It was very cute. Then we noticed that she didn’t have a blanket covering her and that her heart rate and blood pressure were up quite a bit from normal. The nurse informed us that Haven spiked a temperature earlier this morning, and despite the Tylenol, her heart rate and blood pressure have not come down. (Neither are dangerously high, just higher due to the fever). Read the rest of this entry »

We had all hoped that Haven’s new medication would dry up her chest drainage.  The plan was to try the regiment for 14 days (Monday will be day 14).  In the cases where the medicine has worked, the fluid gradually decreased over the course of the two weeks until the drainage was very minimal or even stopped all together.  As of this afternoon, Haven has still been putting out a tremendous amount of fluid from her chest.  So, the next attempt to solve the drainage will take place on Monday. Read the rest of this entry »

Well, we haven’t quite finished the medicinal alphabet yet, but we’re still working on it.  Haven has a restful day as mommy and daddy are keeping an eye out on those chest tubes to see how much they’re draining.  They have come down a little bit, but not a whole lot.  Hopefully the next few days will prove to work well for stopping the drainage with medications.  We’ll keep you posted.

Since we are still waiting for Haven’s chest drainage to slow down, not a lot of new things are happening.  They are trying to keep her nourished by replacing some of the protein she is losing through her drainage.  Evidently this is not as easy as taking a multivitamin every morning.  They are starting a special infusion in hopes that this protein will stay in her system longer.  Her white blood cell count is still decreasing- meaning she is getting over her little bout with an infection.  They have been “tanking her up” with new blood for the past couple days until she gets healthy enough to replenish her own blood supply. Read the rest of this entry »

Yesterday evening, Haven took a trip downstairs to the Radiology Dept to have a new IV line put in to direct medications up her arm and to her heart. She had one of these lines previously, but it was getting old and possibly infected. She did really well on her trip there and back.

Today she slept a little and played a little and was overall pretty healthy. We are still waiting to see if the new medication will dry up her chest drainage. They will give the medicine another six days to work before they decide to try to correct the problem surgically. Another trip to the operating room would be a huge strain on Haven so we are really hoping the medicine will do the trick. Besides some painful incidences with a neck rash and a sore bottom, Haven seems to be comfortable and very alert. She loves to stare at her animals hanging abover her bed and study the pictures in her black and white book. Hopefully she will sleep tonight while mommy and daddy are gone and be ready for another big day tomorrow.

Haven slept for nearly 12 hours straight yesterday.  Her nurse told us that she was up all night Saturday.  When we arrived at her room this morning, she was asleep.  The nurse informed us that she was awake all night.  So, apparently she has her days and nights flipped flopped (they say that’s pretty common around here).  Read the rest of this entry »