August 6, 2009
At 12:14 this morning, three years ago, I cuddled my little baby boy for the first time. Tears streamed down my face, as I kissed his cheeks and spoke softly to him. It didn’t take much time. I was holding him by midnight and he was gone 14 minutes later. He took his last deep breath and that was it. It was serene and quiet.
“God needed Jonah. In time, we might heal and the days will become less painful, but I'll never forget the 2 1/2 weeks I spent with the strongest little boy I've ever met. He went peacefully in my arms just after midnight this morning. He went on his own without us making any decisions for him. I'll never forget Dr. Brian Eble's comforting words to us - "When it's Jonah's time, God will take him, regardless of the machines or the medication." And God did. He didn't put that burden on us. I held him for a short amount of time, until my grief overcame me and I asked Dr. Eble to take him. Dr. Eble whispered "It's okay. Jonah's gone now." We find comfort knowing that his suffering is over and that he is safe in the Lord's arms. This was not for us to understand but we were blessed to have Jonah in our lives - even if it was too short. We will never forget our beautiful baby boy.”
I was surprised at how quickly it all unfolded. One minute, we were laughing and enjoying the miracle that had happened…the next, we were kissing him goodbye. For all it’s worth, the DNR didn’t matter. Dr. Eble tried to help him, tried to save him and it didn’t work. He was leaving us, regardless. I felt like the family was robbed of saying goodbye to him but maybe that’s why we were given the day before. The good day. The calm before the storm. Everyone left that evening so happy and joyful for what had transpired that day. Jonah left everyone feeling happy that day. He showed us what miracles consisted of. His life didn’t turn out the way we would have chosen but each day of his life was a true miracle.
Monday, August 6, 2012
Sunday, August 5, 2012
August 5, 2009 - Jonah's 17th day
August 5, 2009
“Thank God for miracles, and thank you for all the prayers and support. Jason and I witnessed a wonderful miracle today as little Jonah was able to stabilize himself. Last night, things looked grim for our little man, as the doctors prepared us for the worst. However, nothing is too large for God and Jonah left the doctors amazed today. He still has a long road ahead of him and still needs all the prayers but he is fighting and so are we. God Bless everyone - we cannot thank you enough for all the prayers! Please continue to pray for Jonah each day!”
On this morning when I walked into Jonah’s room, I was astounded at Jonah’s numbers on the monitor above him. His blood pressure, heart rate and pulse ox were all higher than they had ever been. They were stable. We had agreed on minimum medication-type support for Jonah so I couldn’t comprehend what I was seeing. We had decided to keep him comfortable until he was called home. Dr. Bhutta, Dr. Dyamenahalli and Dr. Garcia surrounded Jonah’s bed. They had no explanation for me. “He’s stabilized himself.” were the only words murmured. There was no medical basis for what we were seeing. He left the doctors scratching their heads. He was still responding to me, holding my finger, moving his legs and he was alive. This day is also my father’s birthday. It wasn’t his best birthday, watching his grandson clinging to life. But my cousin brought a cake in and we celebrated it the best we could. For the next 8 hours, Jonah remained stable, on his own. He still was on a ventilator but everything else was on his own. Dr. Eble came in for his shift that evening, giving all thanks to God for Jonah still being there. Dr. Eble hugged us both with tears in his eyes, just as astonished as we were. At darkness crept in, my family said goodbye and did not stay to keep their vigil over us, for Jonah had stabilized and all was well in our world. We gave hugs at the elevator, proclaiming the miracle we had seen and they were gone.
Jason and I both went back to Jonah’s room to watch over him and be with him. We sat in there for over 2 hours watching as he remained stable, discussing it with Dr. Eble and Jonah’s nurse, Whitney, that evening. We were excited and cheerful as we kissed our little man goodnight and headed out to the waiting room for the night. We chatted and laughed with a few families out there as we prepared our beds. As we sunk into our make shift beds and began our nightly prayers, we had no idea that Jonah was preparing for his trip home.
“Thank God for miracles, and thank you for all the prayers and support. Jason and I witnessed a wonderful miracle today as little Jonah was able to stabilize himself. Last night, things looked grim for our little man, as the doctors prepared us for the worst. However, nothing is too large for God and Jonah left the doctors amazed today. He still has a long road ahead of him and still needs all the prayers but he is fighting and so are we. God Bless everyone - we cannot thank you enough for all the prayers! Please continue to pray for Jonah each day!”
On this morning when I walked into Jonah’s room, I was astounded at Jonah’s numbers on the monitor above him. His blood pressure, heart rate and pulse ox were all higher than they had ever been. They were stable. We had agreed on minimum medication-type support for Jonah so I couldn’t comprehend what I was seeing. We had decided to keep him comfortable until he was called home. Dr. Bhutta, Dr. Dyamenahalli and Dr. Garcia surrounded Jonah’s bed. They had no explanation for me. “He’s stabilized himself.” were the only words murmured. There was no medical basis for what we were seeing. He left the doctors scratching their heads. He was still responding to me, holding my finger, moving his legs and he was alive. This day is also my father’s birthday. It wasn’t his best birthday, watching his grandson clinging to life. But my cousin brought a cake in and we celebrated it the best we could. For the next 8 hours, Jonah remained stable, on his own. He still was on a ventilator but everything else was on his own. Dr. Eble came in for his shift that evening, giving all thanks to God for Jonah still being there. Dr. Eble hugged us both with tears in his eyes, just as astonished as we were. At darkness crept in, my family said goodbye and did not stay to keep their vigil over us, for Jonah had stabilized and all was well in our world. We gave hugs at the elevator, proclaiming the miracle we had seen and they were gone.
Jason and I both went back to Jonah’s room to watch over him and be with him. We sat in there for over 2 hours watching as he remained stable, discussing it with Dr. Eble and Jonah’s nurse, Whitney, that evening. We were excited and cheerful as we kissed our little man goodnight and headed out to the waiting room for the night. We chatted and laughed with a few families out there as we prepared our beds. As we sunk into our make shift beds and began our nightly prayers, we had no idea that Jonah was preparing for his trip home.
Saturday, August 4, 2012
August 4, 2009 - Jonah's 16th Day
August 4, 2009
“I don't have the words for an update today. Jonah has had a horrible night and the doctor's are exhausting every avenue to get him back on track. I know that these things are not for us to understand but it doesn't make it any less painful.”
Today, my life came to a halt. As I walked to Jonah’s room on this morning around 6 AM, Dr. Bhutta was standing outside Jonah’s room. He was leaning against the windows, looking intently at my son, and he sighed. His eyes met mine and I knew something was terribly wrong. He rubbed his face and let his head hang low. “I don’t think we can fix him.” The words pierced my heart. “We need Jason here.” I begged for an answer. Why? Why now? He said, quietly, “It’s his lungs now.” He bit his lip and shook his head. “His kidney’s aren’t working, Wendy. Now, his lungs aren’t getting enough blood flow. He’s struggling.”
I rushed back to my room and called Jason and told him to get here as soon as possible. We had to meet with Jonah’s team around 10 and make some decisions.
We sat in the tiny office in the CVICU, surrounded by Jonah’s team of nurses and Dr. Dyamenahalli. Hilary, our social worker, was there to lend a hand, too. Dr. Dyamenahalli made clear in no uncertain terms that it was all up to Jonah at this point. They had exhausted all resources and they could not fix him. We were given the opportunity to revoke the DNR order and to place him back on life support, if it became vital. Otherwise, they would just keep him comfortable, watch for any signs he could be sending us and prepare ourselves.
I called all the family to come in. It was a agonizing waiting game. Horrible. Jonah did not decline that day but he didn’t improve either. He didn’t require support and we didn’t revoke his DNR. But as nighttime approaches, vitals usually decline. My family sat up all night in the waiting room, watching as I tried to get a few hours of sleep. They were prepared to be there for us, to hold us up at any moment. It was after midnight before I finally fell asleep…and when I woke the next morning, Jonah was still with us.
“I don't have the words for an update today. Jonah has had a horrible night and the doctor's are exhausting every avenue to get him back on track. I know that these things are not for us to understand but it doesn't make it any less painful.”
Today, my life came to a halt. As I walked to Jonah’s room on this morning around 6 AM, Dr. Bhutta was standing outside Jonah’s room. He was leaning against the windows, looking intently at my son, and he sighed. His eyes met mine and I knew something was terribly wrong. He rubbed his face and let his head hang low. “I don’t think we can fix him.” The words pierced my heart. “We need Jason here.” I begged for an answer. Why? Why now? He said, quietly, “It’s his lungs now.” He bit his lip and shook his head. “His kidney’s aren’t working, Wendy. Now, his lungs aren’t getting enough blood flow. He’s struggling.”
I rushed back to my room and called Jason and told him to get here as soon as possible. We had to meet with Jonah’s team around 10 and make some decisions.
We sat in the tiny office in the CVICU, surrounded by Jonah’s team of nurses and Dr. Dyamenahalli. Hilary, our social worker, was there to lend a hand, too. Dr. Dyamenahalli made clear in no uncertain terms that it was all up to Jonah at this point. They had exhausted all resources and they could not fix him. We were given the opportunity to revoke the DNR order and to place him back on life support, if it became vital. Otherwise, they would just keep him comfortable, watch for any signs he could be sending us and prepare ourselves.
I called all the family to come in. It was a agonizing waiting game. Horrible. Jonah did not decline that day but he didn’t improve either. He didn’t require support and we didn’t revoke his DNR. But as nighttime approaches, vitals usually decline. My family sat up all night in the waiting room, watching as I tried to get a few hours of sleep. They were prepared to be there for us, to hold us up at any moment. It was after midnight before I finally fell asleep…and when I woke the next morning, Jonah was still with us.
Thursday, August 2, 2012
August 2, 2009 - Jonah's 14th Day
August 2, 2009
“Jonah is 2 weeks old today and he had a good night!”
The days were becoming uneventful and not too progressive. We were at a standstill with Jonah. He wasn’t improving but he wasn’t declining. We took it in stride and prayed for the best. His life was in limbo and we were just going along for the ride. I was enjoying the peaceful time. I was enjoying the time to touch my baby and have him respond to me.
“Jonah is still a sick little boy and he has many battles ahead of him but he has overcame so many HUGE obstacles, I think his days might get easier. He's came through the longest of heart surgeries - over 12 hours - and 3 much smaller surgeries (but of no less importance) and he's come off his support. His color is improving and they did drain some fluid off him but he's still quite puffy.”
He was still on dialysis and still not putting out much fluid. He was swelling to the point that closing up his chest was just not an option. Jonah was comfortable and in no pain but he was allowed to wake up, wiggle and open his eyes.
“BIG NEWS - he smiled for me today. I came in at 6:30 this morning. Brian (I think he's Jonah's favorite nurse) said he smiled. Brian even had a witness to this. I was pretty bummed that Brian is getting more attention than me. But he does take care of Jonah for 12 hours straight, constantly by his bedside. Dr. Elbe came in while I was there - joking that he heard Jonah said his first word last night….for Brian.”
The nurses spent more time with Jonah than anybody. Jonah still had his days and nights confused, and for Brian, that meant he got the best of times with Jonah. He bathed him, talked to him and Jonah pulled out all the stunts for him. Brian enjoyed seeing what Jonah would do at night when he was awake. Even more, Brian enjoyed reporting it back to me when I arrived at the hospital at 6.
“On a more serious note, he did explain that while Jonah didn't make any progress overnight, he didn't have any setbacks - and that in itself, is progress. They have alot of work to do on Jonah's blood. His pH level is low but his vitals are good.”
It was still a balancing act that Jonah’s body couldn’t perform too well.
“I came back at 8 this morning, just for a few minutes before the doctor's made their rounds. I talked to Jonah and was explaining to him how great my love was for him. :) And he *SMILED* ever so slightly.”
I remember his little rose-colored lips, spreading wide. You could almost see the dimples in his fat cheeks. It was what I needed from Jonah that night. A sweet smile. It was nice to see that he did save some stunts for me.
“Jonah is 2 weeks old today and he had a good night!”
The days were becoming uneventful and not too progressive. We were at a standstill with Jonah. He wasn’t improving but he wasn’t declining. We took it in stride and prayed for the best. His life was in limbo and we were just going along for the ride. I was enjoying the peaceful time. I was enjoying the time to touch my baby and have him respond to me.
“Jonah is still a sick little boy and he has many battles ahead of him but he has overcame so many HUGE obstacles, I think his days might get easier. He's came through the longest of heart surgeries - over 12 hours - and 3 much smaller surgeries (but of no less importance) and he's come off his support. His color is improving and they did drain some fluid off him but he's still quite puffy.”
He was still on dialysis and still not putting out much fluid. He was swelling to the point that closing up his chest was just not an option. Jonah was comfortable and in no pain but he was allowed to wake up, wiggle and open his eyes.
“BIG NEWS - he smiled for me today. I came in at 6:30 this morning. Brian (I think he's Jonah's favorite nurse) said he smiled. Brian even had a witness to this. I was pretty bummed that Brian is getting more attention than me. But he does take care of Jonah for 12 hours straight, constantly by his bedside. Dr. Elbe came in while I was there - joking that he heard Jonah said his first word last night….for Brian.”
The nurses spent more time with Jonah than anybody. Jonah still had his days and nights confused, and for Brian, that meant he got the best of times with Jonah. He bathed him, talked to him and Jonah pulled out all the stunts for him. Brian enjoyed seeing what Jonah would do at night when he was awake. Even more, Brian enjoyed reporting it back to me when I arrived at the hospital at 6.
“On a more serious note, he did explain that while Jonah didn't make any progress overnight, he didn't have any setbacks - and that in itself, is progress. They have alot of work to do on Jonah's blood. His pH level is low but his vitals are good.”
It was still a balancing act that Jonah’s body couldn’t perform too well.
“I came back at 8 this morning, just for a few minutes before the doctor's made their rounds. I talked to Jonah and was explaining to him how great my love was for him. :) And he *SMILED* ever so slightly.”
I remember his little rose-colored lips, spreading wide. You could almost see the dimples in his fat cheeks. It was what I needed from Jonah that night. A sweet smile. It was nice to see that he did save some stunts for me.
Wednesday, August 1, 2012
August 1, 2009 - Jonah's 13th Day
August 1, 2009
On this day, I could have danced through the corridors at ACH. My baby was off ECMO.
It was a day of celebration. I was overjoyed and in tears most of the day. We had that enormous ugly machine and Peter behind us. We were moving forward. I also made a decision no parent should ever have to make….a DNR. Once the doctors saw I was so cheerful to be off ECMO, the next question was, “what if he has to be put back on it?” No. Don’t judge us for that choice. We prayed about it and discussed it as his parents. We didn’t involve anyone else except his team of doctors in that decision. It was what was best for Jonah. We do not regret that choice.
"Jonah is proving every day to be a fighter and a true warrior. He came through surgery - and did NOT have to go back on ECMO. Thank the GOOD LORD for all his wonderful blessings and miracles. I can't understand why this all happened and I don't know why God is allowing us to witness it all. It truly is amazing to see this 13 day old baby with more fight than any adult I've ever met.”
Jonah was returning to typical baby mode, except for that wide-open chest with a thumping heart. I didn’t notice that anymore. I only saw my gorgeous son that entranced me with each glance. Of course, with every two steps forward, we take a step back. And we did. Jonah’s kidney’s were shutting down. Renal kidney failure. You never want to hear those words. But considering what Jonah had just triumphed over, I didn’t see this as a huge complication.
“He needs prayers for his kidneys today. We have another obstacle ahead of us. Jonah has quit producing his normal amount of urine. His kidneys did go to sleep while he was on ECMO this last time. They are putting him on dialysis. His cardiologist (Dr. Eble - the BEST) said it could take 2 days to a month.”
Out with one machine and bring in another. Here came dialysis. They had to search the hospital for a dialysis machine appropriate for him. Dr. Eble thought dialysis might wake up those sleepy kidneys, and we were willing to give it a try.
“Jonah is opening his eyes more often. He's discovered his tongue and is really showing it to all of us. His nurse last night, Brian (also, awesome) said Jonah woke up for his entire bath last night. Brian said he watched him intently - did not just stare off into space.”
“Today, little Jonah almost looked like he wanted to cry. He's not feeling pain. His doctor reminded me that is what newborns do - CRY. It's been awhile since I've had a newborn. He is a little uncomfortable from the swelling but the dialysis will remedy that, as well.”
He was swelling more as the time went by. As soon as my newborn returned, he slowly started to fade again as his body began to fill up with fluids. I waited anxiously for the urine. Pee, Jonah, pee. I just kept waiting for it.
“Jonah's still a sick little baby but he’s doing the work himself right now. No support except the ventilator, which he had previously been breathing over. He's blowing bubbles and wiggling his fingers and toes. All beautiful things! He gripped my finger today until he went to sleep then he relaxed.”
At this moment, I felt as if Jonah had won half the battle. He was needing less support to survive and he was waking up more, and being my baby. Five days left in his precious life, and I was still unwilling to admit defeat.
On this day, I could have danced through the corridors at ACH. My baby was off ECMO.
It was a day of celebration. I was overjoyed and in tears most of the day. We had that enormous ugly machine and Peter behind us. We were moving forward. I also made a decision no parent should ever have to make….a DNR. Once the doctors saw I was so cheerful to be off ECMO, the next question was, “what if he has to be put back on it?” No. Don’t judge us for that choice. We prayed about it and discussed it as his parents. We didn’t involve anyone else except his team of doctors in that decision. It was what was best for Jonah. We do not regret that choice.
"Jonah is proving every day to be a fighter and a true warrior. He came through surgery - and did NOT have to go back on ECMO. Thank the GOOD LORD for all his wonderful blessings and miracles. I can't understand why this all happened and I don't know why God is allowing us to witness it all. It truly is amazing to see this 13 day old baby with more fight than any adult I've ever met.”
Jonah was returning to typical baby mode, except for that wide-open chest with a thumping heart. I didn’t notice that anymore. I only saw my gorgeous son that entranced me with each glance. Of course, with every two steps forward, we take a step back. And we did. Jonah’s kidney’s were shutting down. Renal kidney failure. You never want to hear those words. But considering what Jonah had just triumphed over, I didn’t see this as a huge complication.
“He needs prayers for his kidneys today. We have another obstacle ahead of us. Jonah has quit producing his normal amount of urine. His kidneys did go to sleep while he was on ECMO this last time. They are putting him on dialysis. His cardiologist (Dr. Eble - the BEST) said it could take 2 days to a month.”
Out with one machine and bring in another. Here came dialysis. They had to search the hospital for a dialysis machine appropriate for him. Dr. Eble thought dialysis might wake up those sleepy kidneys, and we were willing to give it a try.
“Jonah is opening his eyes more often. He's discovered his tongue and is really showing it to all of us. His nurse last night, Brian (also, awesome) said Jonah woke up for his entire bath last night. Brian said he watched him intently - did not just stare off into space.”
“Today, little Jonah almost looked like he wanted to cry. He's not feeling pain. His doctor reminded me that is what newborns do - CRY. It's been awhile since I've had a newborn. He is a little uncomfortable from the swelling but the dialysis will remedy that, as well.”
He was swelling more as the time went by. As soon as my newborn returned, he slowly started to fade again as his body began to fill up with fluids. I waited anxiously for the urine. Pee, Jonah, pee. I just kept waiting for it.
“Jonah's still a sick little baby but he’s doing the work himself right now. No support except the ventilator, which he had previously been breathing over. He's blowing bubbles and wiggling his fingers and toes. All beautiful things! He gripped my finger today until he went to sleep then he relaxed.”
At this moment, I felt as if Jonah had won half the battle. He was needing less support to survive and he was waking up more, and being my baby. Five days left in his precious life, and I was still unwilling to admit defeat.
July 31, 2009 - Jonah's 12th Day
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.
“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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