Sunday, February 14, 2016


I know I made some of you a little worried with my last post about medi-port madness. With my strong type A personality, I do need a plan. When I don't have a plan and can't make a decision, my mind goes crazy on me.

Since my post, life has gone on in the hospital and at home. The medi-port and Jacob's temporary IV line are both still mysteriously working! I think we all know it's time to let go of the seven years old port, but right now it's working again. Jacob has done amazingly well coming off gut rest. By 10 pm tonight, he will be completely back on his g-tube feeds and not needing any more IV fluids.

We finally made a decision with Dr. E. last night. She came to see us again, and together we decided Jacob needs a medi-port that works all the time. We can't go through the drama we had in the last couple of days again. Dr. E only wants the A Team to perform the surgery. She still feels the surgery is a big risk for Jacob, and rather wait for Jacob's anesthesiologist to be available than just get in first thing tomorrow morning. We found out that Jacob's anesthesiologist is not available tomorrow. The medical team is now looking to see if he's available Tuesday morning. If not, we will be looking at a surgery date the following week. I can't tell you how much I trust Dr. E, and how she always has our back. Friday night, she came up to see Jacob with five minutes notice. We even made her late to her big concert performance that night (the concert had to start ten minutes late). Talk about patient care and a very big heart for our boy.

If Jacob's labs look good in the morning and he is still tolerating his feeds, they might discharge us tomorrow. The pancreatitis might be at a point where we can manage it at home. I'm hoping but not holding my breath until I see it happening.

It would be so good for all of us, if we could take Jacob home and do some vacation this week. Sarah has struggled with this last hospital stay. She was pretty sick herself this past week. She got little attention, and also didn't get to see her brother. She also can read our stress levels pretty well by now. I didn't make it home in time for her volleyball practice Friday due to waiting for the Surgery Team, and that really bugged her. I loved that her volleyball team all wore their Team Jacob shirts to practice that night. I know Sarah so appreciates it, even if she's a little uncomfortable to be put on the spot. We hadn't had time to update her about the surgery, so she felt she didn't have much answers for her team. It's still so great for her to have this support from her coach and volleyball team. We're very grateful for the support.


Grandpa wearing the Team Jacob volleyball shirt.

Sarah was so happy to finally see Jacob yesterday. She just couldn't stop smiling and kissing him. The bond these two have is something special and rare, and just wonderful to watch as a parent. Sarah also needed some mommy time. Joakim gave me the best Valentine's present. He stayed two nights with Jacob in a row. I could truly catch up on sleep, and also take Sarah to the movies last night. It was really good all around.

This Valentine's Day did sneak up on me. We typically don't make a too big deal about it, but I typically do something for the kids and we have a nicer dinner at home. This year, I hadn't even bought cards or thought about gifts for anyone. Luckily we had friends who took care of us. Last night, we were greeted by gifts, chocolate, wine, and girl scout cookies by dear friends thinking about us. My girl loves surprises like that. She couldn't stop smiling! We love our friends who have made sure our caffeine levels have stayed high all weekend long in the hospital as well. You know who you are, and know it means the world to us.

Tonight I feel so much better. There is a Plan. I know it can always change with our boy, but there is a course of action. We have gone two days without emergencies and I have actually been able to sit down.

Let's hope this Plan sticks, and thank goodness for Dr. E giving us the clarity we so needed.

Happy Valentines Day! Love, Maria.

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