July 31, 2009
“Yesterday, while my faith was being tested, I should have just opened my eyes to the wonderful miracle occurring. When we had the hands and feet issue yesterday, the doctors said it could take 2-3 days to clear. But I know the power of prayer and I immediately sent prayer requests out and within 2 hours, there was a noticeable change in Jonah's hands and feet.”
This was not one of the first miracles I had witnessed there but it certainly was something quite remarkable. To see your child’s feet almost black and in less than 2 hours, almost back to normal colors was incredible.
“Jonah had a good night. Dr. Michi came in and manipulated Jonah's external pacemaker like he was playing a video game, but he liked the results of Jonah's heart rate. The ECMO coordinator, Peter says Jonah just wasn't ready to say goodbye to him.”
When a baby has to be placed on ECMO, heart parents cringe. We know that mechanism, we fear that machine. It’s a massive life support system - a bypass machine. It’s difficult to come off ECMO, and we were told from the beginning, 30 days maximum and that was pushing it. It sends children into kidney failure, organs began shutting down when they aren’t used. The clock was ticking each day Jonah spent on it.
“Peter is the best and he makes me stronger. He's allowed me to touch Jonah more than anyone and gripes at me when Jonah's hair is not brushed properly. Today, he has sent me out looking for an ideal stuffed animal to place between Jonah's legs when he lays on his side. We're thinking a snake. Peter demands and I shall answer them.”
We were settling into our home life at the hospital. Staff members were becoming our friends. Often times, I felt myself venting on them, bonding with them and just sharing their stories and mine while I sat by Jonah.
“He's going to more testing today. We're praying the doctors discover the one missing piece that is not allowing him to come off ECMO. And we're hoping that it's not just his "wimpy" heart (Dr. Michi's words, not mine.)”
We all wanted Jonah off ECMO. Once he was off ECMO, we could move forward and let Jonah guide us. That was our goal. We watch Jonah and see how he recuperates and faces each obstacle. The plan was to find out what was standing in his way.
“We DID NOT have a setback yesterday. Some people seem to think so. Jason and I do not. We were blessed with another miracle yesterday. They sent Jonah off for a heart cath yesterday where they are allowed to see a more extensive picture of Jonah's veins and arteries and see where he is failing. The doctors have been baffled by why he can't come off ECMO. The doctor that did the heart cath called us back and Dr. Michi was with him so we knew this meant more surgery. This is a relief to us. If they had not found anything wrong with Jonah, the only culprit would have been his weak heart....and then he would have needed a transplant.”
This was a victory day for us. We were happy to find Dr. Michi in Jonah’s room with answers and explanations. While, yes, it did require another surgery, but it offers a solution that we didn’t have otherwise. In this situation, you have to exhaust all avenues. You have to give your child every opportunity to survive.
“Jonah’s pulmonary arteries that carry the oxygenated blood to the rest of his body were too narrow. Dr. Michi's going to take Jonah back into surgery this afternoon. Afterwards, he should not even have to go back on ECMO. This should be the nasty culprit that's been causing Jonah to fail this whole time. Everything else looks good in him. So, sit tight today in prayer, a miracle is going to happen.”
We did not let this new discovery bring us down. They had forewarned us that when the heart is formed improperly, other things often go wrong. Sometimes, it takes awhile to discover all the defects. First and foremost, the child has to stabilize. The pulmonary stenosis was not something to be taken lightly, but at this point, they thought it could be managed.
“Everyone breathed a sign of relief. Even Dr. Michi chuckled afterwards - he was happy it was something he could fix. He's going to patch it with cow membrane! Jason looked at him and said "Venison?" Jason's a red-blooded meat-eating hunter. How could he get his meats so confused? The doctor laughed. Jason asked "Veal?" The doctor laughed again. We all said "BEEF!" I wasn't sure at what moment Jason became confused over his choices of meat but the boy sure wasn't with it. “
This conversation was some much-needed comedy relief. We had a very trying 24 hours and we had an answer, a solution and a very confused daddy. Dr. Michi was taking a very aggressive step in treating the pulmonary artery stenosis. But it was necessary in Jonah’s situation. We had to act fast to treat him, fix him and get him in recovery.
“I didn't make it to Wal-Mart yesterday. It was just too far. I found a Walgreens really close and went there. It took no time and Jonah was in the heart cath while I went.”
I hadn’t left the hospital since I had arrived on July 21st. Ten days straight without leaving. I had made promises that I was going to Wal-Mart that day. I was going to venture out. I couldn’t. We made it down the street and I couldn’t breathe. I couldn’t function. I can’t describe the feeling of panic I had once I left the hospital. I spotted a Walgreen’s and we made the quick trip. I could only relax once I was back in contact with Jonah.
“Jonah is in surgery as I write this. While I'm nervous for him to go through another surgery (his 4th thus far) - I believe that we'll all breathe easier once this one is complete. This one surgery is the missing link to the puzzle. His nurse said he woke up for a few moments before the anesthesiologist came in, so she gave him a good talking to and he was geared up for the surgery.”
“We ran into Dr. Louis (Jonah's previous anesthesiologist) and he was upset that he didn't get Jonah's surgery today. He likes Jonah, and has become attached to him. He stops by to see him everyday and check on Jason and me. These doctors and nurses become like family up here. We have formed a connection with several of them.”
As I said before, ACH was becoming family to us. It doesn’t take long to bond with people when your son is in their care, and it’s a matter of life and death. Three years later, we still have contact with some of them. They were an important part of our lives and Jonah’s.
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