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."