Surgery

Tuesday was a busy day. We found out that morning that Jackson would be having surgery at Primary Children's at 12:30. So I did the panicked, fluff and stuff packing and headed down. We don't even put our suitcases away anymore. They are permanent fixtures in our room!

This was his "take down" surgery to connect his bowels. The plan originally was to do it in November but he was having minor, minor complications(annoyances) really with some things so the surgeon decided to not wait until they became major complications. Let me tell you, I could have hugged this man. This surgery will make Jackson's life and our lives a bit more simple. There will be less leaking and less poo. Enough said.

The cutest patient in waiting room. Who knew hospital gowns and pants could be so darling. The annoying part was that everyone who came in the room kept calling Jackson a "HER." Not sure why. What part of blue top, blue pants and red socks, along with the name Jackson did they not get.

I was so nervous that Jax would be a monster without food. Demand feeding (eating what he wants, when he wants) really suited the little guy. But this day he did amazing. What a blessing. He woke up hungry but was quickly soothed with a binkie for the rest of the day. And being in a moving car is like a sleeping pill for this baby. He was flirting with the nurses all day and flashing smiles. What a doll.
He was so happy to lie on the bed and kick around. He didn't end up going to surgery until 6 pm...12 hours after his last meal. This was MAJOR surgery but the surgery itself went really well. After they connected the 2 ends of his bowel they put blue dye through to check for leaks. There were NO leaks and it moved all the way through without any problems. We are hoping this continues. He was in the operating room for almost 3 hours. The end result is a 3 inch scar on his abdomen. 3 inches isn't much until you consider that his little abdomen is probably only 5-6 inches across. They put 2 drain tubes where his stomas were to keep fluid from potentially building up there. He has no more stomas though. No more bags, no more buttons, no more tape, gauze, and no more tears. And the tears were mostly mine.

This is my sweet baby after surgery. I almost didn't take a picture because I hate seeing him like this. But when he gets older, maybe he'll like to see how far he's come. While surgery went well, recovery has been a bit of a different story. He didn't come out of anesthesia very well and so they sent him to the Pediatric ICU. He wasn't able to come off the ventilator right away like hoped, but it's not unexpected. He is in a lot of pain from the incision and so they keep him on a lot of pain medication so he can sleep through the worst days. Another setback was that he didn't get to eat or be on his TPN for most of the day so he came out of surgery a little dehydrated. He also needed a blood transfusion while in surgery(which wasn't unexpected either, he's anemic).

They turned down the vent today and he was breathing so great by himself for about 2 hours and they were expecting to pull the vent when all of a sudden he quit breathing. Had a small apnea really. We had just left to grab a quick lunch when I heard the intercom say "Code Blue Room 2309." My heart dropped to my feet. That was Jax's room. I ran back and found everything ok. He just fell too deeply asleep for a moment and forgot to take a breath. With one breath for him, he was back to normal. But having a Code Blue called on your baby is not something you forget very easily. So they will not be extibating him today. Which I am fine with. He needs pain medication to handle the pain and that makes him so sedated so he doesn't focus too much on breathing. I just want him to rest for a few days and then try it. He will be able to come off the vent fine when he is not on so much pain meds.

I can't hold him. He's in too much pain to be manipulated. And I totally understand. 3 months ago I had my stomach cut open and it does not feel good. But I do miss holding him. This is the first time, since he was 3 days old that I haven't gotten to hold or snuggle him. Very anxious for that time and to have my happy, smiley baby back.

His intestines are reconnected now but his road is still long. Being a short gut patient is more complex than I first imagined. He will still be on TPN for a long time. Maybe even forever. It's hard to admit that and say it out loud. His lack of intestine may never be able to absorb all the nutrients it needs to sustain his body. Only time will tell. The surgeon did say that he, out of many short gut patients has many things going for him.

Some of those advantages include: his loss of bowel is not due to infection, he has his full colon(most of your water absorption happens in the colon), he has something in his ileum called the ilesocecial valve, some ileum and amazing parents. (i made the last one up because I can't remember the last one!) So they are hoping that if a short gut person can make it off TPN it can be Jackson. After surgery the surgeon did tell us to pray, and pray a lot for Jackson. Give him lots of blessings. Put his name on the temples prayer rolls. He has a long road ahead of him. But we are optimistic, as are the Drs. He has surpassed every expectation they have had for him and made progress at a fantastic rate. I pray each and every day for him and his progress. Will you join me? Will you pray for my baby? A few extra prayers never hurt anyone.....

And I threw in one last picture because it's cute. He's not pouting in this picture. He's just discovered his lips and tongue in the last few days and uses them in the cutest ways!