Just thought you might want a quick update on Gracie, the baby I mentioned earlier this week. She is on life support as her new heart is not responding. It is not a rejection they feel like the heart was damaged in transit or something. She can only live 2 weeks on life support, so they have decided to put in a Berlin heart, which is an artificial heart. They are going to do this next Tuesday or Wednesday. This will give her time to heal and have a "normal" life until they can get another heart. The hard part is that they have only done 2 Berlin Hearts. One patient lived and now has a new heart, the other died. The family is trying this as a last effort for Gracie.
This Sunday is fast Sunday for those who belong to my faith. Please fast for her. If you belong to another faith, please pray for her that day. Our united effort will help. Even if she does die, our united prayers will help her family.
On our home front. The doctors got Austin some new meds last week after the recall. It was the same stuff, just a lower dose (so he took a double dose of it) but it wasn't extended release. It was so obvious this med was not going to work for him. Last week, Austin was so sick. He was tired and worn out. It was hard to see him like that again. He said the irregular beats were happening all the time and they really exhaust him. On Sunday we hooked him up to our machine we have at home and sent a report of his heart to the hospital. They called on Monday and said he was having so many irregular beats they were worried his defibrillator would go off not to mention how awful he was feeling. They immediately knew the meds that weren't extended release weren't going to cut it.
Our search began. All the generics have been pulled. So the doctors tried to find the name brand. Unfortunately our insurance wouldn't pay for it so our hospital and doctors said they would get their attorney to write the insurance and tell them he had to have the name brand and they had to pay for it. They said this would work. Of course, we hit another wall. We couldn't even find the drug to have the insurance pay for it. There is now a national shortage due to the recall.
By this point I had had it. Jay went up to the hospital and found Austin's EP doctor. An EP doctor does the electrical system in the heart. Austin has a plumbing doctor, an electrical doctor, a defibrillator doctor and a surgeon. Just FYI. Anyway, Jay, the EP doctor and the defibrillator doctor met and decided to try a completely different drug. They hadn't entertained this before because Austin as asthma. He has been med free for 2 years so they felt it would probably be okay to try this other drug. Really, what other options did we have? He started that new drug on Tuesday and it is also extended release. I am happy to report that yesterday and today he is back to normal. He has energy again and the irregular beats have stopped. The doctors are wonderful and have been calling and checking up on him. They are thrilled that this is working.
This Sunday is fast Sunday for those who belong to my faith. Please fast for her. If you belong to another faith, please pray for her that day. Our united effort will help. Even if she does die, our united prayers will help her family.
On our home front. The doctors got Austin some new meds last week after the recall. It was the same stuff, just a lower dose (so he took a double dose of it) but it wasn't extended release. It was so obvious this med was not going to work for him. Last week, Austin was so sick. He was tired and worn out. It was hard to see him like that again. He said the irregular beats were happening all the time and they really exhaust him. On Sunday we hooked him up to our machine we have at home and sent a report of his heart to the hospital. They called on Monday and said he was having so many irregular beats they were worried his defibrillator would go off not to mention how awful he was feeling. They immediately knew the meds that weren't extended release weren't going to cut it.
Our search began. All the generics have been pulled. So the doctors tried to find the name brand. Unfortunately our insurance wouldn't pay for it so our hospital and doctors said they would get their attorney to write the insurance and tell them he had to have the name brand and they had to pay for it. They said this would work. Of course, we hit another wall. We couldn't even find the drug to have the insurance pay for it. There is now a national shortage due to the recall.
By this point I had had it. Jay went up to the hospital and found Austin's EP doctor. An EP doctor does the electrical system in the heart. Austin has a plumbing doctor, an electrical doctor, a defibrillator doctor and a surgeon. Just FYI. Anyway, Jay, the EP doctor and the defibrillator doctor met and decided to try a completely different drug. They hadn't entertained this before because Austin as asthma. He has been med free for 2 years so they felt it would probably be okay to try this other drug. Really, what other options did we have? He started that new drug on Tuesday and it is also extended release. I am happy to report that yesterday and today he is back to normal. He has energy again and the irregular beats have stopped. The doctors are wonderful and have been calling and checking up on him. They are thrilled that this is working.
Comments
Sending good thoughts to baby Gracie.
Gracie and her family are all so beautiful both inside and out. I hate to see people hurting. I would love to join you and others in fasting and praying for them. I really hope things turn out well.
I'm glad that things have been worked out for Austin. These heart kids really are worth every stress! I loved the pics of him in the patriotic program- I agree, what a handsome boy!
Love
Kim