So Happy to be Home!

Sorry for the lack of updates. We were discharged around 10:30 on Tuesday. I am so appreciative of the nurses and doctors who all worked hard to get us out of the hospital as soon as possible. Unfortunately the ride home was really rough on Alex. He was extremely nauseaous. I had to pull over several times. Luckily I had a dose of zofran in my emergency kit. He also had pretty significant back pain. With pancreatitis the pain can radiate to your back. It has bothered him some, but being stuck in one position in a car seat really took its toll. Needless to say we were both happy to pull in the driveway. I spent some time unpacking and Alex enjoyed some quiet playtime with Daddy! We had a scare Tuesday night when our delivery was not here as early as it should have been. Alex cannot keep his sugars up at all when his TPN is turned off. Luckily, his delivery got here 30 min before we were going to run out. Running all IV meds is a lot more work and time consuming for me. So it made for a long night Tuesday night.

Yesterday was a quiet day. Alex spent most of the day in his bean bag watching movies. I tried to get life back in order! Alex is doing okay. His belly hurts some,  but not terribly. He is so tough. I have spoken to numerous adults who have had pancreatitis and they all say it is the most horrific pain you can imagine. It makes me sad that my little Bug has to experience that. I am so proud of how well he handles the trials he is faced with.

We ran labs again this morning. If his numbers are still trending in the right direction, we are hoping to try one med into his tube over the weekend. We will see how he feels and what labs look like on Monday and then reevaluate if we can progress or he still needs more time. This is always such a long process. It is frustrating as I want to rush and get him back to "normal". I have learned through the years slower is always better with Alex.

Here is a picture of him today relaxing on the couch:

Thanks for all the prayers.
Ali

Visions of Home

The plan is home in the morning! We cannot wait. Alex took a LONG time to wake up on Saturday. He was so funny and drugged. His stomach was considerably more distended again so we wound up doing an xray and draining his Jtube again. Yesterday, Alex stayed in bed most of the day playing quietly and watching movies. Last night was his best night pain wise. He pushed his button once before bed and then slept through the night. When the team rounded this morning we decided to take him off the pain pump. He has handled it well today. He has complained of pain a few times, but mananged to tough it out knowing if he needed pain meds it means we can't go home.

The plan is to go home tomorrow on full TPN/IV meds. He is getting nothing in his tube at this point. We are also back to draining his G tube. We will follow labs and see how Alex feels and slowly try and get some meds into his tube. When we can give some meds without pain and/or a big increase in his pancreatic enzymes then we will slowly try and get some feeds going.

The doctors have also decided we need to cancel his Heart Cath. It was scheduled for mid April. They feel like he needs to be closer to his baseline before we undergo anesthesia and put his little body through more. We have also decided to reschedule our 6 appointments we had scheduled for next week. We need some quiet time at home!

We are so grateful for everyone who has prayed for us over the last 12 days. Alex is definitely feeling better, but still has a ways to go to get back to our baseline. Everyone who saw him a week ago is amazed at how much better he looks. Now we need his energy and endurance to return. We saw sparks of our spunky guy today.
Ali

PS- I have a very specific prayer request. Alex really needs IV arginine. It is on national backorder. We need some vials to be found for our little guy. Otherwise we are in a rough spot.

MRV

Not even sure where to begin. This admission has seemed so crazy to me. We let Alex sleep until anesthesia called for himthis morning at 8. Once again there was the start of a meltdown. However, by now I knew that Alex's ammonia was high. Despite lowering the protein in his TPN and starting IV arginine his ammonia was still double what it should have been this morning. I tried to reason with and comfort Alex, but he is panicked about anesthesia. One of our favorite nurses is in our pod and was sad about how upset he was. She called the anesthesiologist (who we love) and she came up to the room to give him something so he wouldn't be so scared. We headed to the MRI suite and I stayed with Alex until he was asleep and they were ready to intubate. I left about 9:00 and they told me he would be in the scanner about 9:30. They expected the MRV to take between 2.5 and 4 hours. I got two updates during the MRI. Around 12:30 they called me to head to the surgery waiting area, because they were getting ready to extubate. I was back with my boy about 1:00. He is still sound asleep. So far he is doing well. He looked like he might have been starting to seize at the very beginning of the procedure so they gave him ativan. We are hoping he can keep his temp down.

While Alex was down in MRI, I saw GI. They did not like that he got so distended last night after attempting 2 cc's of meds so they told me to not give any more meds through his tube. It also caused his lipase to double again. They anticipate us going home on TPN and IV meds and working slowly on feeds at home.

When we got back to the room our team was here and already had preliminary results. It does not look like there is a new clot. They can still see a fibrin sheath where his old clot was. We are waiting to hear from hematology whether anything else needs to be done. We are slowly resolving all the issues. It looks like as soon as Alex can come off pain meds, we can head home.

If anything cahnges tonight I wil update again.
Ali