Early Monday morning Maren went to Rady Children's Hospital for a sedated echocardiogram and really strutted her stuff. Doctor El Said was amazed (once again) by Maren and her progress. Incredibly, Maren's next appointment won't be until December 2010, when she will have an MRI (originally going to be scheduled for last December 2009). After we see the results of the MRI, Dr. El Said will conference with all the cardiac surgeons and cardiologists at Rady to determine the best surgery/treatment plan for Maren. This is quite extraordinary.
Now for some of the more detailed results from the echo and Maren's appointment yesterday (for those who are interested):
Maren's oxygen saturations were solid at 89 while she was sedated, and would fluctuate up to 90 and 91 when she was awake. Normal heart function results in an oxygen level of 97-99. Maren's is lower due to her condition, but in particular, she has a small hole in her heart called an atrial septal defect (ASD) which connects the right atrium with the left atrium. Via this hole, blue blood (unoxygenated blood) in the right atrium mixes into the left atrium, where red blood (oxygenated blood) is queuing up to be pumped out to the body. This mixing lowers the oxygen content and results in a lower number in Maren's saturation level.
There are some benefits to Maren having the ASD. The hole actually prevents strain to the small right ventricle by providing a small release valve. In time, however, the ASD could be closed in a catheter surgery or as part of whatever open heart surgery Maren may have in the future. The bottom line is that based on the progress Maren has been making, the benefits of closing the hole at this time do not justify the burdens imposed by a surgical procedure.
Maren's tricuspid valve Z score is between -.13 and -.85. This is great news, as the tricuspid valve, which is the valve at the entrance to the right atrium, is one part of the right heart structures that can be measured with reasonable accuracy via echocardiogram. This measurement is one thing that is used to determine whether a PAIVS baby will be able to achieve a 2 ventricle, 1.5 ventricle, or 1 ventricle repair, with the 2 ventricle repair being the best of these options. Basically, although different hospitals/doctors around the country take different approaches, in all hospitals, a Z score of 0 through -2, along with a reasonable ventricle size (next paragraph), suggest 2 ventricle repair.
Maren's right ventricle is rated by her doctor as mild to moderately hypertrophic. This is an eyeball rating from the echocardiogram, and is among the most subjective of the assessments. The MRI will ultimately give a much better picture of the ventricle. This is a very important assessment as far as prospects for 2 ventricle repair. With her tricuspid size and her right ventricle healing, Maren has pretty clearly put herself into 2 ventricle repair territory. This was NOT the case just nine months ago, when she was in the category of babies where there is significant controversy as to what is the best treatment (1.5 or 2 ventricle repair).
Maren's pulmonary artery was not narrowing too much.
Maren's stent looks to have narrowed a little bit, but is basically still open and providing additional blood to her lungs. She also had an EKG which did not show anything unusual.
Maren's tricuspid valve Z score is between -.13 and -.85. This is great news, as the tricuspid valve, which is the valve at the entrance to the right atrium, is one part of the right heart structures that can be measured with reasonable accuracy via echocardiogram. This measurement is one thing that is used to determine whether a PAIVS baby will be able to achieve a 2 ventricle, 1.5 ventricle, or 1 ventricle repair, with the 2 ventricle repair being the best of these options. Basically, although different hospitals/doctors around the country take different approaches, in all hospitals, a Z score of 0 through -2, along with a reasonable ventricle size (next paragraph), suggest 2 ventricle repair.
Maren's right ventricle is rated by her doctor as mild to moderately hypertrophic. This is an eyeball rating from the echocardiogram, and is among the most subjective of the assessments. The MRI will ultimately give a much better picture of the ventricle. This is a very important assessment as far as prospects for 2 ventricle repair. With her tricuspid size and her right ventricle healing, Maren has pretty clearly put herself into 2 ventricle repair territory. This was NOT the case just nine months ago, when she was in the category of babies where there is significant controversy as to what is the best treatment (1.5 or 2 ventricle repair).
Maren's pulmonary artery was not narrowing too much.
Maren's stent looks to have narrowed a little bit, but is basically still open and providing additional blood to her lungs. She also had an EKG which did not show anything unusual.
So, we are optimistic about this latest news. But mostly, we are just excited by the chance of six more months without surgery! In the interim, we have to keep an eye out for a drop in Maren's oxygen levels, which, literally, we have been advised we can detect by, among other things, her turning blue! This never ceases to amaze us, as we have never seen this happen and cannot imagine how scary it would be. Still, without fail, the doctors and nurses ask if Maren has blue lips sometimes, and a blue appearance, as if it is the most normal thing in the world. This is something we hope never to see...
The hope is to wait years until any surgery, and for there to be only one open surgery-- when Maren is a small girl, to replace Maren's pulmonary valve. But that is looking way down the road. For now, we look forward to having the best six months imaginable with our Maren Blue.
