Update after cath conference

I just finished meeting with our doctors. In the meeting with the cardiac team this morning, it was acknowledged that with Bridger's pulmonary pressures as high as they are right now, he is not a candidate for a heart transplant. Bridger had another echo this morning and they were fine with how that looked for now. He was given another new medication today in hopes that reducing his blood pressure will make his heart function more easily. The IV medication for his heart was stopped last night, while at the same time his vomiting increased, so they will restart the IV med to see if that stops the vomiting and if it does we will know he needs that medication. On Monday a pulmonary hypertension specialist will meet with us to discuss stronger medications, however these may damage his liver so they are started with caution. If with the new medications, he has a favorable response Bridger will go to cath lab again in 4-8 weeks to see if his pulmonary pressures have decreased. If so, then we will begin his evaluation for a heart transplant, if not then we will continue to cherish every moment that we are blessed to have our son with us.

A request.......

As we have been here at the hospital, many people have asked if they can do anything to help us. Well I have thought of something that would be great. Last night one of the cardiologist told me about a Chinese (I think) belief that if you fold 1000 origami cranes, then your wish will come true. Well our wish is for Bridger to overcome this disease and live a happy & somewhat healthy life. I am asking anyone who would like to, to fold however many origami paper cranes that you can to contribute to our wish, and please send them to us or our family so that we can work towards our 1000. You can find origami paper at craft stores and instructions on how to fold online. This may sound silly to some of you, but if it helps we are willing to do anything. They are still going to discuss his case in cath conference this morning, so wish us luck! I'll let you know.

Change of plans

So a few things have happened since I last posted. Bridger had an echo on Friday, showing that his pulmonary pressures are still high. He had an okay weekend, other than he was vomiting alot (which we were worried that was a sign of poor heart function). Yesterday was a rough day for me. This hospital stay really caught us off guard this time, for the first time, Bridger got to be a real baby at home. He was sleeping without discomfort, eating without discomfort, playing without becoming easily exhausted, basically doing all of the things that he deserves to do. So when he turned blue and ended up in heart failure again it knocked me for a loop. So I had some discussions with the doctors yesterday, and again today about the long term outcomes and plans for Bridger. His case will be discussed in cath conference on Wednesday because there are so many different opinions regarding his health, so this way all of our physicians can be together in one room to give their input. Also on Wednesday, I will be meeting with the heart failure team and the heart transplant team, and they will evaluate Bridger for possible treatments. So the plan for the next two days is to maximize his medications in hopes to help his pulmonary hypertension.

Cath Lab

Bridger was able to go to the cath lab yesterday, where the function of his different vessels were checked. The squeeze of his heart looked okay, but he does have increased pressures in his lungs. This is probably from the damage his lungs sustained when he was so ill back in Nov/Dec/Jan. So the next step is to try some medications to help treat his pulmonary hypertension. The hope is that this will buy him some time to help strengthen his lungs. So no real big changes today, just some medication adjustments.

ROUND 4

For those of you who don't already know, Bridger is back in the ICU. Yesterday morning Bridger turned blue again, only this time was for about 5 minutes ( last time was two 1 minute spells) and so we went on Bridger's first ambulance ride back to Primary Children's. When we got here, he looked considerably better. They did the usual; labs, x-rays, and an echo. However this time things didn't look very good, his heart is failing again, and they are not sure why. So he was readmitted to the PICU. Right now the plan is to go to cath lab, where they will go into his heart through his vessels and try to find the problem. No one will really say what our options are until they can narrrow down the problem, so now we wait. Hopefully we can get into cath lab today.

IT JUST ISN'T FAIR

I talked to Angela (heart mom) today and she told me that she was notified that Dr. Hawkins (the surgeon who did all of her son's surgeries) has been diagnosed with pancreatic cancer and has three months to live. This is the man who for years was the only person who could perform the life saving surgeries that our babies have needed. He has retired effective immediately from clinical duties. Angela and I are trying to call together anyone who has been touched by Dr. Hawkins to please get a hold of me and let me know if you can send me some pictures or letters that we can compile together and give to him in thanks for all that he has done for all of our families. This is truly devastating to all of our heart families, so anyone who has something for him just post your info and I will get a hold of you.

Jumperoo

Well we are still home and loving it. Bridger is discovering all of the toys he hasn't been able to play with the last few months. He rolls onto his tummy now, he chews on everything in sight, and loves to bounce in his jumperoo. He is smiling and laughing and doing all of those sweet things we never thought we would have a chance to see. We are so grateful for every moment we have with our son!