Wednesday, October 17, 2012

Cardiac Follow Up - 3 Weeks Post Op

We had C's local cardiac follow up today. I was happy to hear our cardiologist say "I've always advised families to wait, but if this valve continues to work like it is, I may have to change my thinking on that". I was less happy to find that C's heart rate continues to be low (resting 57ish) and beating in a junctional rhythm. 

We're on a waiting list for a holter monitor. At this point we are looking to get some baseline numbers so that we can see if he improves over the next few months. If we don't see an improvement in the next 4 months, we may be getting a pacemaker.  If the holter monitor shows any concerning drops or pauses, we may be getting a pacemaker sooner rather than later.

I asked Dr. Gellat if he thought it could simply be the size of C's heart causing the issue.  While it may be the reason for the slower beat, the fact that it is beating from the junction instead of from the sinus node indicates there is an issue.  The good news is that the EKG does not indicate heart block.  When the junction node fires, it does trigger the sinus node and both the atrium and ventricle are beating.

It will be interesting to see if C's increased heart rate will lead to sinus node taking over firing.  We were seeing normal sinus rhythms in the hospital when C was up and about.  Even when C's heart rates are in the mid to lower 40's he still profuses well.

Monday, October 15, 2012

An open letter to Children's Hospital Boston


I wanted to give you guys some feedback on our time at Boston Children's Hospital.  We were inpatient beginning on 9/27 and discharged on 10/4.  During our stay and during our pre-op appointments I was impressed and gratified to note the breastfeeding friendly signs and attitudes of the staff and practitioners at your institution.  The commitment you have to providing a breastfeeding friendly environment is a testament to your dedication to children's health and well being.

My son is currently 25 months old.  In most places, including some medical institutions, this is considered too old for breastfeeding. Despite the numerous documented physical and psychological benefits of what, in this country, is called extended breastfeeding.  Your hospitals commitment to providing an open, breastfeeding friendly environment for all children, regardless of age, puts you a cut above many other locations.

I also noted the easy access to pumps and the staff willingness to find any equipment I needed for pumping both while we were waiting both during his operation and while we were inpatient.  Additionally, I love that you use Medela bottles for storing the breast milk instead of containers supplied by a formula company.

I had several opportunities to interact with the lactation support staff prior to my son's hospital stay.  I consistently found them to be helpful, supportive and encouraging.  Their depth of knowledge and dedication to helping lactating moms is a credit to your entire institution.

Overall, I look back on my breastfeeding experience at Boston Children's hospital with pleasure and gratitude.  There are a lot of horror stories out there for breastfeeding moms, especially those of us who choose to continue to breastfeed for longer than the American societal standard.  Thank you for taking the time to education care providers and families on the value of breastfeeding.  Your organization's dedication to breastfeeding is clear in everything you do.

Thank you,

Sunday, October 14, 2012

Day 17 Post Op

Well, sorry for not updating, I thought it had been weeks since surgery.  I went back to calculate how long C has had to gain weight and realized that last Thursday was just 2 weeks post op.  It has been a crazy whirlwind.  I had no idea he'd be so active so quickly.  We are still having some issues with sleep and routine after having everything tossed in the air and mixed up in the hospital.

We were giving C a dose of ibuprofen before bed, we tried a night without it and it seems we aren't quite there yet.

The big news is that C has gained almost 1 lb in the 2 weeks since surgery.  He eats more than he used to and his body is working less.  It is already paying off.  We may even hit the growth charts again soon!

Monday, October 1, 2012

Day 4 post op

We had a pretty uneventful day. Early morning was active with an ekg, xray, and blood work. C's blood pressure is leveling out. We need to do one more sedated echo, and Tuesday or Wednesday, which means more time without food.
We continue to wait to see if his heart rhythm will even out. Our cardiologist isn't overly concerned, which is reassuring.