Lots of Meetings

We had a lot of people come visit us from the hospital today and got a lot of really good information from everyone.  The first person we met with was Laurie, the surgical nurse for Dr. Mavroudis.  She brought us a lot of information on the surgery and what to expect.  Hope is scheduled for the first surgery on Wednesday...which means it will start around 8 or 9 in the morning.  Jerry and I are planning to get to the hospital at 6:30 in the morning so we can spend some time with Hope before they take her to surgery.  It is going to be a stressful and long day for all of us.  There is a waiting room on the 3rd floor (Ronald McDonald Family Lounge) where they will call with all of the surgical updates.  The updates will begin about 2 hours after she is taken for surgery and every hour after that or more frequently if needed.  The surgery should take about 4-6 hours and Jerry and I will be in the waiting room the whole time.  Laurie indicated that they may just wait until right before surgery to intubate Hope and they will also need to do another central line (which is something I hate to see).  Following is a diagram of what Hope's heart will look like once her first surgery is complete:


After the surgery, they will bring Hope back to the room in PICU where she is currently staying.  I am not sure if we will have anyone visit when she gets back.  Jerry and I kind of know what to expect, but it may be hard for other people to see Hope.  Her chest will be open because they cannot close it until the swelling is down and she will have tubes in her chest to drain the fluid.  The tubes will remain for a few days until all of the excess fluid has drained and then they will close the incision that was made for her surgery.  The first 72 hours after surgery are critical and she will be watched very closely to ensure that everything is doing OK.  They will also check for infection several times a day because it is critical that she does not get infected while her chest is open.  Hope may need extra care because of her kidney function and they may put in an abdominal catheter as a precaution...just in case her kidneys start to fail and she needs dialysis.  They may not start dialysis right away, but they want to make sure everything is ready...just in case.  I am glad they are being proactive, but she is doing really good right now, so we are praying that will continue after surgery as well.

After all of the tubes and wires are removed and she is stable she will be moved to NICU to learn how to eat.  I am thinking this may not be hard because she loves her pacifier and has even taken to sucking her thumb.  I am hoping this will help her learn how to eat a lot quicker.  Once she is stable and learns how to eat, she gets to come home!  That will be the most exciting day of our lives.

We also met with Dr. Prieto, the cardiologist that admitted Hope.  She will continue to follow Hope after her surgery is done.  I really liked her and I know we will be seeing a lot of each other once Hope is discharged.  I really liked Dr. Patel at Akron Children's Hospital, but Dr. Prieto said that she prefers to follow the HLHS children that she admitted and that had surgery at the Cleveland Clinic.

I also met with the social worker to see about getting a room at the Ronald McDonald house for the night of surgery and possibly through the weekend.  I would prefer not to be so far away from Hope after her surgery.  We have been put on the waiting list and are hopeful that they can find us a room.  Laurie indicated that we should plan to go home the night she has the surgery because Hope will be pretty much sedated and they will be watching her very closely.  I just don't think I will be able to come home and get any sleep.

Other than all the meetings, everything went pretty good today.  Hope looks great and everything looks good.  Her sat level was kind of low today, but they are just watching it for now and there are no plans to do anything.

Please continue to keep our family in your thoughts and prayers.  We have been praying that Hope stays strong and does not get any type of infection.  We will be opening up the floodgate of prayers on Wednesday for the surgery, but we still pray every day that she stays as strong as she is and that no infection finds its way into her room and definitely not into her.

Thank you again for your thoughts and prayers.