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Wednesday, June 20, 2012

Welcome Home Baby Jack

After twenty-four long days and nights in the hospital, we finally got the news we'd been waiting for. On Thursday, our nurse practitioner told us that if everything went well over night, we could probably go home in the morning.


        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

Wednesday, June 6, 2012

Post-Op Day 21: Three Weeks Later

Three weeks later...


Post-Op Day Twenty-One


       Well the biggest thing that has happened around here lately is that we FINALLY got moved to our very own room out on the floor. (For those of you wondering... When I say "floor" I am talking about the Pediatric Cardiology Unit which is where pediatric heart patients go after their stay in the CICU.) We were originally told that we would spend two nights in CICU and two to three nights on the floor. So far we have spent a total of twenty nights in the CICU and we're working on night two on the floor. We've been told that we could make it home by this weekend but it will depend on how Jack does over the next few days with a few different things. 
         Overall Jack's health has improved greatly in the past week. He is completely infection and virus free right now and his fever has been gone for two whole days. His white blood cell count is down to the lowest its been since before surgery and his inflammation number is zero. 
          The main focus though has always been on Jack's saturations. His saturations have been doing ok since he was extubated the second time. Most kids in Jack's positions generally sat in the 80s after surgery. Jack gave the doctors a good scare when he started satting in the 50s and 60s but they realized pretty quick that Jack tolerates low saturations and doesn't get too blue like other kids would. They still have high hopes that his sats will rise with time but they don't know how long it will take. The first time he was extubated his sats were really low and he ended up having to be reintubated in an emergent situation in which his sats dropped into the teens. Thankfully, that hasn't happened this time. He isn't having the pressure issues he was having the first time that contributed to his low saturations but also just having some extra time helped give his saturations a chance to slowly rise to a more stable area. This past week when he was still on high-flow oxygen his saturations were really great. They were in the high 70s and low 80s all the time. They changed him over to low-flow two days ago and his sats dropped back down into the high 60s and low 70s, which is not great but is still ok for Jack. Right now he is still on low-flow oxygen at 3 liters and 100%. We are likely going to have to go home on oxygen unless they can ween it and keep his saturations the same. We will see what happens over the next few days as they start the weening process. 
            Other than weening his oxygen, Jack also has to prove that he can get back into a regular routine with his milk and that has been more of an issue for us than we expected. Jack has always been a great eater and has gained weight well. But, after surgery he didn't have any milk for 5 days and then started tube feeding. He was on the vent for so long that his little tummy got used to the tube feeding that went past his belly and he isn't used to having food in his tummy. Now we are trying to feed him and he is having a lot of trouble. When he does eat well, he usually throws it back up. But mostly its just that he won't eat to begin with. He chews on his bottle and will sip a little bit but won't really get into it like he normally would. He did have a good day with eating yesterday and we thought we were past the rough spot so they pulled his tube out but after a long day of not eating hardly at all today, they had to put the tube back in and start him on tube feeds again. Even though this is a step back, it is important to know that he's getting the nutrition he needs right now. We will continue to try to bottle feed every few hours and see if he will take it. Hopefully over the next day or so he will pick back up with eating and we can pull the tube back out. 
        We have also had some issues with withdrawals again today. The new CICU doctor for this week sent us out to the floor with the plan to go back up on his withdrawal meds (Methadone and Ativan) because he believes that the fevers and other mysterious symptoms that Jack has had for the past week were from withdrawals. Then the nurse practitioner that was seeing us on the floor changed it back to the weening doses because Jack seemed to be doing so well yesterday and last night. Today, however, has been a rough day for our little man. He has just been super fussy all day and crying like he was sick or something hurt. We held and rocked him all day but nothing really seemed to soothe him. So, the nurse practitioner decided to give him an amped up dose of Ativan to check for withdrawals and he instantly changed. So...withdrawals it is. Now we are going back up a tiny bit on Ativan and just staying the same on the Methadone for tonight. They will continue to try to ween him off of them but they believe its more important that withdrawals don't interfere with his recovery than for him to try to hurry off of the drugs. They have promised us that he will be off of both of them just fine within a few days. 
       Lastly, as if our poor sweet boy hasn't been through enough already... He got his SECOND tooth today. On top of everything else, Jack has gotten his first two teeth while he has been in the hospital. He's getting oragel and chewing a lot but other than that, he's just extra fussy and doesn't feel good. Hopefully the pain and irritation from that will subside by tomorrow. 
        


       I know it still sounds like a lot, but compared to where we were just a week or two ago, its nothing. We know that everything I just mentioned will be better in time. Mostly in just a few more days. The most important thing right now is that we are finally seeing BIG sweet smiles from our baby boy everyday. He feels like playing more now and wants to be held. He's watching lots of Spongebob and just all around seeming more like himself. We are also SO relieve to be here in the room with him. Having our own space is great but the best thing about getting our own room is that he is all ours now. The nurses and doctors come in to check on him often but in between, its just the three of us. We're changing diapers, rocking, playing and cuddling just like we would if we were at home. AND we're here with him all night. Even when he's awake at three in the morning refusing to take a bottle or go back to sleep, we're just thankful to be with him and see his sweet face. God is good my dear friends. He is good to us. He has answered our prayers and I have no doubt that He will continue to do so and we will see great things from this boy in his lifetime. 


Bye Bye to our friends in the CICU <3



Hello to our room on the floor <3





         

Sunday, June 3, 2012

Post-Op Day 17-18: What a Difference a Day Makes

Post-Op Day 17




        These past couple of days have pretty much been dedicated to accomplishing the following things. 

1. Maintain good sats (between 75-85)
2.  Ween oxygen
3.  Stop throwing up/diarrhea 
4.  Get fever down
5.  Start eating

**And an added bonus of sprouting new teeth!**

The mysterious fever has been really throwing everyone for a loop. Jack has been tested for every single possible cause and all tests are negative. The good news is that he doesn't have any infections or other scary issues like that. The bad news is that if we can't figure out where the fever is coming from, we can't figure out how to make it go away. Hence, the waiting game. 
          In the mean time, we have been battling some throwing up and diarrhea. It started a couple of days ago. Its really traumatic because when he starts throwing up he'll cough and gag and dry heave for a few minutes. He literally gags so hard he stops breathing and his little face turns purple. We have to pat his back really hard to help him. Because he is on the TP tube which delivers the breast milk directly into his small intestine, he has no food in his belly to throw up. He's throwing up stomach acid which is brown and gross. Then two nights ago he threw up blood. The doctor thinks it was possibly caused by a tear in the lining of his stomach or throat because of all of the trauma to them over the past few weeks with all of the tubes going in and out combined with the constant throwing up. It was really a terrifying moment but it only happened that one time and I pray it never happens again. 
           The diarrhea has been rough because he has the world's worst case of diaper rash and his little bottom just hurts. We have about 4 different creams that we are putting on him every time we change him and hopefully it will start to get better now that the diarrhea has pretty much stopped. It's also rough because every time he poops they have to change his central line dressing because it gets nasty poo germs on it and that could cause an infection. The skin under the dressing is incredibly raw because they keep having to tear tape off of it and put new tape on. He's all broken out and his skin is bright red and so sore but they can't treat it because they have to be able to stick tape to his skin to cover the central line. 
           His sats have finally started to improve and he is doing really well now off the vent. When he's on 100% high flow oxygen he is satting in the 80s like a rock star. They need to ween him down and then eventually switch him to low-flow before we can go out to the floor so they've been working on that for the past few days. Yesterday they decided to just give it a try. They just went from 5 liters of high flow to 2 liters of low-flow. Jack didn't respond too well and after a few hours of low sats, they had to put him back on high flow. The main problem with that process yesterday was that his little face is as broken out and chapped as his bottom. They keep having to take that tape off of his face and put new tape on every time they adjust his oxygen because he has to get a different nasal cannula for each type of flow. Yesterday it was really bad. His face is all broken out and red and raw. He would scream and cry when they touched it. They kept changing the tape and it was just heartbreaking when they would pull the tape off. It hurt him so bad. Yet again, though, nothing can be done to treat the skin because they have to be able to stick that tape to his skin. Poor baby. 
           Jack hasn't had a bottle since the night before surgery which was almost three weeks ago now. In babies its dangerous to let them go this long without drinking from a bottle because they lose their ability to suck and swallow. But, because he was on the vent for so long and then his tummy has been sick since he came off the vent, he hasn't been able to try a bottle yet. Today we tried a bottle and he gagged and started dry heaving before he even took the first swallow. We decided not to try again today because its so hard to see him sick like that. We'll try again tomorrow. We also met with someone from speech that talked to us about the therapy that they will do to re-teach Jack how to take a bottle if need be. She also told us about several tests they will do before he can really start drinking anyway. They have to make sure that his vocal cords weren't damaged during surgery and that they can completely close when he swallows so that he doesn't aspirate. 
            On top of all of the other battles that our sweet boy has been fighting, he actually got his first tooth today. We had noticed that he was really fussy and extra slobbery for the past couple of days but he has been teething for a while now so we didn't think too much of it. People have told us that it usually takes a few months from the time they start teething until they actually get their first tooth. The nurse ordered some oragel from the pharmacy after she noticed how much he was chewing on things. Then when she put the oragel on his gums she felt his little tooth. Josh and I laugh because we never even gave him oragel at home and this evening our doctor came by and told the nurse to give him a dose of Morphine to help with his teething pain. He may be the only baby in the history of the world to get Morphine for teething. 

        It has been a challenging couple of days but we see small improvements in him each day. Right now we are just happy to see his eyes open and clear and to catch a few tiny smiles here and there. It's a joy to us just to reach the point of him getting his first tooth. There have definitely been those terrifying moments when we weren't sure if we would make it here. What is just a tooth to most people is a BIG moment for us. Our son is alive and getting better each day. He's a real miracle. At this point we feel like we can see the light at the end of the tunnel and we are satisfied with where we are in the journey because as much as we'd love to be home, we're just glad that we aren't in a place of fearing for his life. This place seems safer. Seems closer to home. 





          

Post-Op Day 18

       What a difference a day makes! 

        Today has been a big day for our boy!

1.  First of all, his temp has officially migrated down to the low-grade range and stayed there for 24 hours. It's not perfect but much better. 
2. We're weening off of most of the pain meds and some of the antibiotics. 
3. His diaper rash is way better today. He still screams when its diaper changing time but his bottom looks so much better. 
4. Most of his diarrhea is gone and throwing up has stopped completely. 
5. His central line area is looking better because it hasn't had to be changed as much today. 

Now for the BIG things that happened today...

        First thing this morning Jack's oxygen got changed over to low-flow and he is rocking it like an all-star! Sats in the 70s and 80s all day...even when he's mad! Way to go Baby Jack! Dr. Dabal came by and said that if he keeps this up for a few days, we might not have to go home on oxygen!!  



       Then after lunch we got to take our little man on a wagon ride around the hospital. We loaded up all of his portable equipment and pulled him around for about 15 minutes. He liked it until the end and then he got mad and demanded to be put back into his bed. 



        Then he took a one ounce bottle of breast milk by mouth and didn't throw up at all. Then later he took a two ounce bottle. This was a HUGE step for him. No therapy. No G-tube surgery. Praise God. 



        Dr. Dabal told us that at this rate we could be on the floor by Tuesday and home in a week. Today has been the best day. We couldn't be happier with the progress! God is good




         


Hebrews 11:1-2 "Now faith is confidence in what we hope for and assurance about what we do not see. This is what the ancients were commended for."