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