March 7, 2011 - No Surgery for now (YEAH!)

Nurse Julie, Nurse Shelly, and Speech Therapist Angie
Physical Therapist Jackie

We had our cardiology appointment on Friday 3/4 and got GREAT news. Although we didn't get great oxygen saturations there we had been getting slightly higher readings 78-82 here at home. Numbers we haven't seen in awhile. As much as we tried to prep him for when the doctors and nurses listen to his heart and take his oxygen readings he gets so worked up from crying we don't get good readings so they are basing the sats off the numbers we have gotten over the last few weeks at home. Since his heart sounded good, with no concerns with the tricuspid regurgitation at this point they feel confident to hold off on surgery (The Fontan - 3rd surgery) until next summer. YEAH! We knew surgery (heart cath or early Fontan) could be a possibility which would be determined from this appointment so we couldn't be more excited.

We took David's mom Sue up with us to Milwaukee so we could have an extra hand with Griffin. Thanks Sue. It was definitely needed. We got to visit and drop off some auction items to Chris for the Wings of Angels dinner on April 9 (www.thewingsofangels.org) as well and see so many nurses and therapists that Caden had during his two surgeries. We even got to see Dr. Nancy! Always hard to catch and great to see.

Since Caden is approaching his 2nd birthday this Friday I couldn't help but think about this great group here at Children's who have given us this opportunity to share this special day with our boy. You have no idea how important you are to us. You have been with us, cared for our son, and continue to show your support through the years. Thanks!

Blessed again,
Love - Melissa

December 19, 2010 - Cardiology recap

Caden's attempt to help us untangle the lights.......

As the holidays are approaching and things tend to get more busy with the upcoming arrival of BS #2 I figured I better finish what was discussed at Caden's last Cardiology appointment last week. As we expected from taking Caden's oxygen saturations at home there would be some sort of intervention in the near future for him and indeed it looks like doctors are going to have us continue to monitor his sats (which are now approximately 74-76) a decline from his normal 82. Surprisingly, with his lower sats his color still looks good (not dusky, or blue), and he seems energetic. What we don't know unfortunately (due to lack or studies) is what happens if these kids oxygen sats stay too low, too long. We are heading back in early March for another check-up and at this time doctors are discussing a potential heart catherization. This will allow doctors to see if the lower numbers are because he has been on/off sick, if collaterals are forming, or he simply is "outgrowing" his 2nd heart surgery (the Glenn) and will need #3 surgery (the Fontan) sooner than later. We also discussed when he is under during this procedure we will have ENT scope his vocal cords to see what they see now that he is a little older and bigger and if there is
anything we can do to help alleviate the wheezy breathing and issues that occasionally arise from his paralyzed vocal cord.

Although the thought of another surgery is scary, David and I have had time to absorb this is going to happen and it's now just a matter of when it's going to happen. The good news is I'll still be out on maternity leave (if they choose to do this in March or early April) so I can be with him as he recovers in the hospital and at home and not have to worry about work.

Speaking of maternity leave......for those of you who are wondering. I am starting to dilate, but obviously that doesn't mean a lot....I am so very, very, very, very ready to have this baby. For all you mom's out there. I am officially not sleeping, swelling, so uncomfortable not even 6 pillows can help alleviate the discomfort. So, as David keeps telling me I can't go into labor now (seeing I would be in the hospital during Christmas). I am ready! Otherwise, doctors will not let me go beyond the 28th (my actual due due.....with a planned C-section on my due date). I work up until the 23rd so I'm just praying to get through these last few days even though my classes are determined my water will break while I'm teaching and they think that would be "cool". They have told me they would get the wheelchair, wheel me downstairs, and have even offered to drive me to the hospital. I'm not sure what is more humermous in that statement.........but it's a good way to end this post.

We are celebrating Christmas today with the Smith side of the family (in the event I wouldn't make it to Christmas) so we are looking forward to a great holiday with family today.

Happy Holidays -
Love - Melissa