After we figured out that Jack was still withdrawing and that was why he seemed to feel so bad all the time, they went back up on his Ativan and kept his Methadone the same. They decided that it would be best to ween him slower, even if that meant sending him home on both drugs. We asked a lot of questions about each of the meds and their affect on him, especially long term, and they explained everything to us and made us feel better about it. He has been on a tiny dose of each drug since we left the hospital and has been weening slowly. Both of these drugs, especially the Ativan just make Jack super chill and not really himself. We didn't really like that he was on either drug but it was certainly better than seeing him as sick and miserable as he was when he was withdrawing. The pharmacy at the hospital set up the prescriptions for us so that each syringe was already filled with the correct dosage so that there wouldn't be any risk of us giving him too much. As the week went by, he went from .3 to .2 to .1, so each different dosage was in a different plastic baggy that was appropriately labeled and our nurse practitioner made a calendar so that we would know exactly when to give what dosage. If you know me well at all, then you should know how much I can truly appreciate that kind of organization. Haha He is now completely off of both of the drugs. He was still withdrawing all the way up until a couple of days ago but it seems like that is almost completely over with now. Thank goodness.
They also sent us home on four other medications. He is on one for his tummy, one for his high blood pressure, one for his fluid output, and one for the pressure in his lungs. All six of these medications, some of them being given two or three times throughout the day, leave us with 15 different dosages of medication throughout each day. Six of them are given at one time in the morning when Jack first wakes up. They're all oral and he HATES them all. It is a serious battle to get all of these meds into him every single time. Sometimes he screams, kicks, and spits it all back out. Other times he is a real trooper. We've tried mixing them with milk.. which he then refuses to drink. We've tried pretty much any trick you can think of and nothing really works. It will be a battle until they tell us we can stop with the meds. We really hate having to give him the meds because of how upset he gets but we just remind ourselves that he needs it and it won't be forever.
They also sent us home on oxygen. They told us that we would have one unit for when we were at home and then something portable for when we go to our doctor appointments and clinic visits. So, Friday morning before we were discharged from the hospital the guy from the med supply company came in hauling this massive amount of equipment that was all for us. He had to teach us how to use everything and it was a big lesson. Not too complicated but there are a lot of parts and a lot to remember. It consists of one massive home unit that will sit in a general location with 50ft of tubing that could pretty much reach anywhere in our house. Then we have 4 large sized tanks for when we're out of the house. Jack is really great about the nasal cannula being on his face. We use medical tape to keep it on his face and try not to change it but every few days because he hates to have the tape pulled off. Most of the time he doesn't notice it. Every now and then we will look over at him and he will have pulled it down into his mouth. Silly boy. :)
Last Tuesday we had Jack's post-op visit with his pediatrician, Dr. Farr. Going out with the portable oxygen tank wasn't too bad. It's on wheels and is kind of hard to steer, especially combined with the stroller. It definitely takes a team. Luckily, my mom and aunt both got to go with me so I had plenty of help. Dr. Farr said that Jack's lungs sounded great which was the main concern after all of the issues we had post-op. He said that everything looked great and the only concern he had was Jack's weight. When we were admitted to the hospital Jack weighed 15 pounds and 7 ounces. When they weighed him on Tuesday he only weighed 14 pounds and 13 ounces. That was exactly what he had weighed 5 weeks earlier at his 4 month check-up. Dr. Farr said that it is imperative that Jack continue to gain weight steadily as he had up until surgery and stay in the average to above average range. He said that weight loss was to be expected after such a rocky hospital stay but that now we have to try to bump him back up to a good weight for his age pretty quickly. So he told me to start adding a teaspoon and a half of calorie adding formula to his milk. When we were in the hospital the lactation specialist spun my milk and figured out that it has 25 calories which is more than formula so that was good news but he hasn't been able to get back to the amount of ounces he was taking before surgery yet which has contributed to the weight loss. Before surgery he was taking 6 ounces every 3-5 hours. After surgery he didn't take any milk at all for 5 days, then he was started back up really slowly and he eventually got to 35CCs an hour which is what he got for the remainder of his stay excluding the time period where we tried to bottle feed him and he threw it all up. The 35CCS an hour was going in through his TP tube and that allowed him to receive a steady amount of nutrition. But, before we could leave the hospital he had to start drinking from his bottle again. We started slowly and reached 2 ounces every 3-5 hours before we left. Now, two weeks later, we are back up to around 5 ounces. He's doing good moving up. It just takes time for his little tummy to readjust after all the trauma its been through.
Other than all of those big things, Jack is doing great at home and is flourishing in his regular environment. He has been struggling with his sleeping because of the withdrawals but is finally starting to sleep a little better. He is playing and laughing all the time and is really getting his little personality back. His days consist of watching cartoons and cuddling with Mommy, playing, eating, napping, and then playing with his Daddy when he gets home from work. His nights consist of a mixture of sleeping and keeping Mommy up...but he's totally worth it. ;)
<3-------------------------------------------------------<3
I can't even begin to express how much God has blessed us through this experience. It's not at all what we asked for....but we've learned SO much along the way. We are SO thankful to be home and to begin the process of putting it behind us and settling back into our normal lives with our sweet boy. His life is even more precious to us now that we have faced the fear of the unknown. We truly see our five month old son as a warrior and he is braver than either of us could ever dream of being. I know in my heart that God allowed this to happen for a very specific reason. Though I can't see it now, I know that someday when I am looking at my son as a grown-up who is an extraordinary man of God, I'll be able to see exactly what God was doing when we were walking through this storm. I believe that whatever God's plan is for Jack, its something big and that he will walk through this life with more purpose than most people do.
Most people say that they can't imagine what we have been though this past month. That's true. I couldn't have imagined it even a short month ago. It's been hard. More difficult than I could ever describe in words. But it made the three of us warriors, I believe. We are stronger and braver today than we were last month. We are forever changed. I am a different person than I was a month ago. I look at my son with determination. We can conquer anything. Though it's not because of any extraordinary power that comes from within ourselves. We are merely people. I can say with full certainty that if it weren't for God's power in my life, this month would have broken me. As a mother, I don't know if I would have survived the pain and frustration of all that the month brought. I don't know how any mother could. Not without God. Not without His grace. But His grace is sufficient. It was sufficient for me this month. It was sufficient for my little family. It brought us through. It saw us through our darkest hour. We didn't just merely survive. We thrived because God's precious grace lifted us up to soar on wings like eagles. (Isaiah 40:31) That's what God's grace does.
I pray that my life has been and will continue to be a living sacrifice to the true and holy God. It's not what I asked for. If He chose to give me what I'd asked for I would be no more than ordinary. I wouldn't be used. I would blend into the background of the world. But God saw fit to use me and my family and no matter the circumstances, I can truly be thankful and give him glory and praise for that. Today, one month later, I am thankful that sometimes God doesn't give us a choice. Sometimes He allows things to happen when He wants to use us that we would naturally choose not to go through. If God asked me today, I would say no. I'm a mother and I would never choose for my son to hurt or to be sick. But I'm thankful for the victory that God has won. And you know whats amazing? He knew what was going to happen all along. He knew, even in our darkest hour, even when my tears were falling and I was begging him on my knees, he knew even then that I would sit here one month later and write to my friends and brothers and sisters in Christ that Jack is home and all is well. He won the victory a LONG time ago. What a MIGHTY God we serve.
"For I know the plans I have for you," declares the Lord. "Plans to prosper you and not harm you. Plans to give you hope and a future." Jeremiah 29:11
But those who put their hope in the Lord will renew their strength. They will soar on wings like eagles. They will run and not grow weary. They will walk and not be faint. Isaiah 40:31
