Although Haven’s surgery has been pushed back at least another day due to her high white blood cell count, today has been a positive day so far.  Haven’s physical therapist worked with her this morning and was very excited with how well she is putting up with being in the hospital for three months.  She said that Haven is much more alert and active than many babies in her situation.  She handles all the tubes and wires well enough that she does not need to be very sedated on a regular basis.  This has allowed her to move around more and look around and keep developing even though she’s in the hospital.  She attempts to hold up her head when she is tipped up and she tracks moving objects very well with her eyes.  She enjoys looking at toys, mirrors, and books.  We were pleased to hear that although she is delayed developmentally, she is still progressing and will probably develop quickly once she can be moved around more. Read the rest of this entry »

 Haven’s white blood cell count was still very high again this morning, so the doctors still do not feel comfortable taking her back to the operating room.  However, since fluid is continuing to accumulate on the right side of her chest, they have decided to put in another chest tube until the surgery can be performed.  It is important that they remove the backed-up fluid because if enough fluid builds up on the rigth side, some of it could be forced back over to her left side which could actually reverse the pleurodesis procedure she had last week.  Read the rest of this entry »

Haven has been sleeping and resting all day today. Her white blood cell count is still high today, so the surgery will be postponed and then reevaluated on a daily basis. When they feel that she is stable enough to go into the operating room, then they will attempt the pleurodesis on the right side of her chest. We also replaced an N-J tube into a nostril for feedings and medications to go past the stomach. Otherwise, everything else is the same. Though we know another surgical procedure is a big deal for this little one, we also realize how important it is in order for her to move forward and recover, so we hope that she will feel better soon and be able to have the procedure done.

Haven was originally scheduled to go back into the operating room this afternoon for an attempt to stop the drainage on the right side of her chest, but her white blood cell count made a drastic jump up this morning which is the first sign of an infection. So, very similarly to last week, they have sent off blood tests and started antibiotics to try and fight off anything that might be trying to come on. They say that it is normal for kids to have an elevated white blood cell count after having a pleurodesis done (which is one of the surgeries she had last Tuesday), but they also say that if the count is going to elevate, it usually does it two or three days out of surgery (not six). Read the rest of this entry »

Haven has had a good day today.  Numbers are looking great, and she is putting out much more than she is getting in.  That means she’s becoming a lot less puffy.  Still planning on going back into the O.R. on Monday to stop the drainage on the right side of the chest.  Mom & Dad are hanging in there.  We certainly do love to hear from all of you.  If you haven’t had a chance drop us a note or haven’t done so in a while, drop us an email to say hi or post a comment.  We’d love to hear from you!  havenleigh@mailhaven.com

Puffy though she may be, over the past 24 hours Haven has been able to put out more fluid than what is going in, so she’s working on getty back to normal size.  The left side of her chest (which was draining an unbelievable amount) is now draining very little.  That means that the pleurodesis procedure she had on Tuesday is working.  However, since Tuesday, the drainage on the right side of her chest has increased quite a bit.  We’re going to wait out the weekend and see what happens, but Haven’s surgeon has her on the schedule for Monday to take her back to the operating room to do the same pleurodesis procedure on her right lung.  We are not thrilled with her going for yet another major operation, but we are all confident that it is the right thing to do to hopefully alleviate the chest drainage once and for all. Read the rest of this entry »

As we walked down the long hall to Haven’s room this morning, we noticed something different.  You see, Haven’s room is directly at the end of the hall, so you can see right into it as you are walking down the hallway.  The first thing we noticed was a green piece of paper hanging on the wall outside her room.  There appeared to be writing on it, but we could not read it from that distance.  The next thing we noticed was that all of Haven’s books and things that were on the counter by the window were gone.  Then we were close enough to see that not only were all our belongings no longer in the room, but Haven was gone, too — bed and all! Read the rest of this entry »

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 »