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

June 11, 2010 - Collaterals or something else?

Hi. I wanted to write so that friends and family could stay updated. Although David understands this much more to explain but after he took yesterday off work he is playing catch-up back at work so I'll try to do my best.

We headed back up to Milwaukee, Wisconsin from Illinois to follow-up on what was discouraging oxygen saturation levels (76%) from a hypoplastic clinic appointment we had just two days ago on Monday. Hoping it was just a "bad" day and the saturations would be higher today. Unfortunately, not the case. Caden's oxygen saturations are still currently lower hovering around 76-78%. They used to be around 82-84% which was normal for Caden and his HLHS condition. Dr. Kovach and Dr. P.Frommelt ordered chest x-rays, and blood draws (oh..not so fun in conjunction with a missed nap!!!).

Some possible explanations for the lower sats were:

1) Collateral veins are forming (These extra veins can grow. It is the bloods way of finding a way to relieve the extra pressure in the circulatory system by creating its own pathway directly back to the heart). Since it is the "return" blood it is deoxygenated going directly back to the heart (bypassing the pulmanary artery which takes blood to the lungs to be oxegynated)this may "likely" be the reason for the lower sat levels. The intervention for this would mean a trip to the catherization lab for Caden where they would insert little metal coils which would act as plugs over the collaterals thus eliminating the new pathways created by the body and increasing the saturation levels again. This intervention will buy us time until Caden receives the Fontan operation.

2) There was a little spot on the chest x-ray they want to monitor. Although his chest x-ray looked better than one previously on record.

3) His paralyzed vocal cord from the Norwood operation (1st surgery) is causing Caden's stridor (noise during inhalation) possibly this is working his system to decrease his sats.

4) He is just starting to outgrow the "Glenn" heart procedure (2nd surgery).


Late last night Dr.Kovach called us to confirm his blood work and everything looked great so what does this mean? We wait. We are heading back in about a month to check sats again and see if anything else has changed. If it is indeed the collateral veins forming his sats will slowly continue to drop. After the sats get down below 74% interventions need to happen (which isn't that far away for Caden) otherwise your at risk for lesions forming on the brain which can cause brain damage. These collaterals (according to the cardiologists) can be common in HLHS kiddos post Glenn surgery because of pressures in the body (although not a good thing). We are aware too that these collaterals are a cause for some of the CHD kids to go into heart failure, or need an early Fontan (3rd heart surgery). We are not to this point, but are scared nonetheless. The good news is Caden looks great. He isn't blue, has a great pink tone to his skin/nails and is still eating great. He is just more fatigued and sleeps more.

David asked if we should get a pulse ox machine (like we had when we first came home to measure his O2 levels) but the cardiologist said we would drive ourselves nuts and become obsessesd over it so he told us just to wait till our next appointment to check the sats. David and I know if the sats go too low he will get gray/blue cast to his skin, lips and nails so we will use that as our basis for the time being.

So we wait......and pray that in a month the sats are higher so nothing has to be done!


Although it was a very long 3+ hour appointment with the other testing Caden did great and crashed once he hit his carseat. We headed over to the Ronald McDonald Home across the street to drop off more pop tabs (thanks again for all who save for us). We had 2 boxes and lots and lots of baggies of tabs. We of course then got a chance to talk with Marilyn (the house director)which is always great then headed back home.

I wish I could say Caden could catch a break.....but we have a regularly scheduled 15 mo. check-up today in Crystal Lake, IL (his pediatrician) for shots. Three doctors in this week alone.....poor little man! Tommorrow is a new day. Thanks for all your love, support and prayers. God is good.

Love,
Melissa