I've updated what's been going
on the last couple months,
under the tab,
The story of Liam the Brave.
Wednesday, February 15, 2012
Tuesday, November 29, 2011
Gratitude.
This Thanksgiving, I'm abundantly thankful to God that my angel is still here, with us, full of breaths and a beating heart. On October 2, he stopped breathing. His nurse was here to do the weekly blood pressure check, and vitals check. Liam had one more ACTH injection left before ending the treatment. He had been asleep 22-23 hours a day for 5 weeks. An unusual side effect. He was lying in his crib when he coughed and failed to regain a breath. She had to stimulate him with vigorous rubbing to revive him. She got him back without CPR. But we called 911 anyway. I was a bawling mess thinking this was it, we were losing Liam. The paramedics gave him oxygen and didn't need to intubate him. McKenna was so brave and stayed in the living room with grandma. Our wonderful neighbor Beverly offered to bring McKenna over to play with her kids so she didn't see anything. But McKenna wanted to stay with her brother. I rode with Liam while Michael followed. That was the longest ride of my life. The driver didn't drive fast enough, didn't swerve around enough people, didn't plow through lights, didn't fly down the interstate. I was livid and wanted to drive to get Liam to the hospital faster. He was breathing ok in the back, just shallow and irregular. I had to explain his diagnosis, to people who didn't know what it was. Just our luck. But he was breathing. In the ER, he had a low WBC count, got antibiotics and was on a bipap machine. The dr didn't want to intubate until he felt he had to, because he didn't know how well Liam would extubate, if at all. He was so weak. Hours later, he was transferred to the PICU. He was still on bipap that night. At 1 am, he was struggling, so he was intubated. He had an MRI, showing more progression of the atrophy, and now it was in his midbrain and brainstem. The vessels were expanding. We were told this was grim but did not tell us his life expectancy. Because noone knows. We were told he has been asleep, unable to open his eyes, the last few weeks because of this atrophy. Michael and I discussed his funeral. We needed to go pick a plot for him. A plot near his grandfather. I wanted a space where he could watch the sun rise and set. A space near the pond where the ducks and geese play and splash so when we visited him with McKenna, she could have fun and not be scared. We talked with the best child life specialist in the world. She helped us cope with telling McKenna that Liam was very ill and we were worried about him. She came to visit him 3 times. She came when the hospital was doing fun things downstairs, like painting,and other fun Halloween stuff. We tried to make the hospital a fun place, not a frightening place, in case she needed to come one day. The hospital was helping Liam not hurting him. While intubated, Liam had a muscle biopsy, which has yielded negative results for mito disease. One week later, it was time to extubate, he had fought the infection, perhaps upper respiratory, and it was time. We'd discussed reintubation, dnr, trach, if Liam struggled. Michael was all for a trach because his father had one and lived a good life afterward. I was against it. It was different this time, with Liam. His brain was deteriorating. If Liam was to continue to lie in a bed and not wake up, not move, not eat, I didn't want to keep him alive, ventilated, for the remainder of his short life, struggling. I was at peace to let him go. I didn't need him to fight for me. I knew he was tired. But, I didn't know how to get up one morning, dress in black, and hold my daughter's hand as we walked into a funeral home. I didn't know if a viewing would ultimately scare McKenna. I didn't know if sitting graveside was something she should be present for. If seeing her brother lowered into the ground was something she should bear. I didn't want to walk down the hallway and pass his room. Empty. Or get into the car and see the seat vacant. Without his carseat. I didn't want to never see his face again. His absolutely beautiful face. His perfect face. I'd miss his warm snuggles. His little fingers and toes. couldn't get it all out of my mind. I couldn't breathe. My heart raced.
But Liam made me erase all of it. He fought on. He did well on bipap for 3 days, then nasal cannula for 3 days. He started to open his eyes. Then he was breathing on his own, with no oxygen at all. The Lord had him in the palm of His hand. Liam was my warrior, and will be for eternity. He was discharged on October 26, with no assistance of any kind. He has an apnea monitor while he sleeps that will alarm if he holds his breath for too long or has an unusual heart rate. The battle we have been facing while home is tolerating his feeds. He was discharged on continuous feeds via NJ tube. He's had the NG for many months, going straight into his stomach, and never spitup or vomited. Then after one day vomiting in the PICU, they tried NJ, having the nasal tube going into the intestines, to bypass the stomach, keeping food down. Well, while that worked, he was miserable, crying alot, horrible gas and stiffening his body, not relaxing. We saw his GI and I said to try NG again, since he's done that for months. He agreed. He was much more comfortable now. We switched to pediasure, a high calorie drink for older children, McKenna's had the chocolate ones! He has vanilla, and we could feed him over a shorter time frame, not the continuous 18 HR feedings. We slowly increased the rate and gave him bigger breaks to digest the food. Now, he only vomits once in the evening. But this has to stop, because he won't gain weight if this continues, and he will damage his esophagus. It's not easy for him to vomit, with the lack of head control, we have to sit him up more than he was while feeding, and make sure he doesn't breathe in the contents. It is so difficult for him. So, he will have the surgery to place a gtube and get a fundoplication as well. This is the wrapping of the sides of the top of the stomach, or fundus, around the esophagus so food is unable to come back up. It helps with severe reflux and vomiting. The NG tube will be gone, it's really been in long enough. We were about to remove it prior to ACTH when he was eating so well by mouth, but we had to start that treatment to diminish the seizures. So, the gtube is a tube on the side of Liam's body, directly into the stomach. All food and meds will go into it. And we'll get that tape off his Beautiful face. :)
On another note,
We had a fun Halloween, trunk or treating at McKenna's school! We were a superhero family, of course, since Liam is our little superman. It was fun letting her run around with friends getting candy. She's loving her school, her teacher, her new friends. She comes home and shows us all her artwork, tells us what she learned, sings us new songs. She even won the art award!! I seriously could not be prouder. Of both my babies. Thanksgiving was quiet and calm and we're so excited for Christmas. All the decor has been up for maybe 2 weeks now. :)
The past few days, Liam has been holding his breath while crying and angry, like when awaking from a nap. I've had to put my mouth directly onto his and give him a big breath to get him to continue to breathe. I'm praying this is not our new normal. I still can't get a funeral out of my mind. I hope he helps me again, and fights to get that image out of my mind. I'm nervous about extubation again, he's way more alert now then he was previously, but still nervous. He will be in the PICU post surgery because of his history. Thank the Lord!! We know all those nurses. The absolute best nurses in the world. They're like family now. They adore Liam. So, please pray that the surgery and recovery go well and he will come home soon thereafter, and this will eradicate the vomiting. We need my happy smiling boy back. It's been 3 months. :( thank you my prayer warriors!!
With much love,
Sasha
But Liam made me erase all of it. He fought on. He did well on bipap for 3 days, then nasal cannula for 3 days. He started to open his eyes. Then he was breathing on his own, with no oxygen at all. The Lord had him in the palm of His hand. Liam was my warrior, and will be for eternity. He was discharged on October 26, with no assistance of any kind. He has an apnea monitor while he sleeps that will alarm if he holds his breath for too long or has an unusual heart rate. The battle we have been facing while home is tolerating his feeds. He was discharged on continuous feeds via NJ tube. He's had the NG for many months, going straight into his stomach, and never spitup or vomited. Then after one day vomiting in the PICU, they tried NJ, having the nasal tube going into the intestines, to bypass the stomach, keeping food down. Well, while that worked, he was miserable, crying alot, horrible gas and stiffening his body, not relaxing. We saw his GI and I said to try NG again, since he's done that for months. He agreed. He was much more comfortable now. We switched to pediasure, a high calorie drink for older children, McKenna's had the chocolate ones! He has vanilla, and we could feed him over a shorter time frame, not the continuous 18 HR feedings. We slowly increased the rate and gave him bigger breaks to digest the food. Now, he only vomits once in the evening. But this has to stop, because he won't gain weight if this continues, and he will damage his esophagus. It's not easy for him to vomit, with the lack of head control, we have to sit him up more than he was while feeding, and make sure he doesn't breathe in the contents. It is so difficult for him. So, he will have the surgery to place a gtube and get a fundoplication as well. This is the wrapping of the sides of the top of the stomach, or fundus, around the esophagus so food is unable to come back up. It helps with severe reflux and vomiting. The NG tube will be gone, it's really been in long enough. We were about to remove it prior to ACTH when he was eating so well by mouth, but we had to start that treatment to diminish the seizures. So, the gtube is a tube on the side of Liam's body, directly into the stomach. All food and meds will go into it. And we'll get that tape off his Beautiful face. :)
On another note,
We had a fun Halloween, trunk or treating at McKenna's school! We were a superhero family, of course, since Liam is our little superman. It was fun letting her run around with friends getting candy. She's loving her school, her teacher, her new friends. She comes home and shows us all her artwork, tells us what she learned, sings us new songs. She even won the art award!! I seriously could not be prouder. Of both my babies. Thanksgiving was quiet and calm and we're so excited for Christmas. All the decor has been up for maybe 2 weeks now. :)
The past few days, Liam has been holding his breath while crying and angry, like when awaking from a nap. I've had to put my mouth directly onto his and give him a big breath to get him to continue to breathe. I'm praying this is not our new normal. I still can't get a funeral out of my mind. I hope he helps me again, and fights to get that image out of my mind. I'm nervous about extubation again, he's way more alert now then he was previously, but still nervous. He will be in the PICU post surgery because of his history. Thank the Lord!! We know all those nurses. The absolute best nurses in the world. They're like family now. They adore Liam. So, please pray that the surgery and recovery go well and he will come home soon thereafter, and this will eradicate the vomiting. We need my happy smiling boy back. It's been 3 months. :( thank you my prayer warriors!!
With much love,
Sasha
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