Friday, February 26, 2016


This is Jacob earlier today. He was sitting up watching a movie, and he just did wonderfully after surgery. I was thinking that if it weren't for GI, he should be going home today.

So, we have an internal joke with the medical team that Jacob leaves all the excitement for mommy. It has definitely been true for the last two hospital stays. When Joakim is here, everything is smooth sailing. I take over, and suddenly we have a medi-port not working, concerns about a blood clot, choking on dried secretions and the list goes on....

Today was no different. Jacob was getting a bath, and as we were cleaning him I noticed blood on his arm. Looking closer, we could see blood coming from the new port site. I honestly wanted to cry...It was quickly determined that the blood came from the port site, not the incision. Surgery was called, and they didn't want to touch it until a line study was performed, so we knew if the port was working or not. Jacob was put on Pedialyte instead of his IV dextrose. His glucose dropped once again. The team was concerned to give him glucose through the g-tube due to some ingredients Jacob might possibly be allergic to. Since he had tolerated orange juice last time, that's what they used this time again. As we were waiting for the line study to happen, they wanted an IV line. Once again, it was confirmed that Jacob can't be without a medi-port. Anesthesia couldn't even find an IV under ultrasound!!! His veins are just so tiny. Anesthesia was starting to talk about emergency surgery tonight, and I was not just ready to cry, I was ready to puke. I kept my calm, but on the inside, I just couldn't believe this was happening to our boy.

By now, I know a line study can't happen after 5 pm if not both attending doctors agree. Luckily, this happened quickly. We rolled down to radiology with orange juice and steroids on board. Luckily, the radiology doc was the same one who placed the last needle in his port under camera. He once again took all the time in the world to make sure the port was truly functioning. The absolute best news of the day is that the port is working!!! As he was getting the line study, we could see blood around the port again. 

The team talked to Surgery and Radiology, and they were concerned that maybe the needle was slightly kinked. The charge nurse re-accessed Jacob tonight, and it looks fine. We're now hoping that we have had the excitement for the day and night, and that it was the needle. Jacob's IV dextrose is running again.

In the middle of all the port excitement, GI came by. All biopsies from yesterday's studies look normal. GI wants Jacob to start feeds tomorrow and slowly work himself up to full feeds. This means we're probably going to be here for a little longer than we had hoped for. I do still have some concerns around Jacob's lipase and his stomach, but tonight I am just going to hope for the port to continue to work and that tomorrow will be a new bright day with a good port and a good stomach.

In the middle of me getting my nerves tested once more, I remind myself, it's Jacob who endures it all. The nurses are amazed with how he rolls with everything. It looks like he has been in a fight looking at his bruised arms. He has been poked more times today than anyone should have to go through. With his blood sugar being checked every hour, he has a different colored band aid on every finger.

Jacob is finally sleeping, and I think I will join him. To a new day.

Love, Maria.

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