Wednesday, May 9, 2012

Another day in the PICU...

Today was a really good day for Jake. We took a wagon ride around the PICU and he was so happy to get out of his room. He laughed so much, it was great to see him so happy.

He was pretty tired most of the day because he worked so hard during PT, OT and Speech. He walked a tiny bit. Even just sitting up and trying to crawl is very hard for him right now. His muscles have decompensated from being in bed for two weeks. It will take time to get him back to normal but I know it will be easier once he is in his home environment and not attached to cords. He has started sleeping with his bottom in the air again which is great to see because this is how he sleeps at home.

They did an ultrasound last night of the clot in Jacob's neck. It has not gotten any worse. They also scanned his groin cath sites and said they looked good. 2 years ago they were occluded and not able to be used. Jacob's cardiologist came by today and I mentioned it to her but she said that even though it looks ok on the ultrasound that doesn't mean its ok. They could still not be able to get through so they can try next time he has a cath but they won't know for sure unless they go in and try.

I had the Lovenox training today. Lovenox is the medication Jacob will get twice a day. I have to give it by injection so I had to have training before we were able to be discharged. It went well. Right now they are using a inceflan catheter (not sure of spelling) that stays in his leg and they put the shot into that he doesn't feel it. The problem is you have to line up the needle perfectly and he has to be held down longer. They also are not usually covered by insurance and cost a lot. Jake HATES to be held down even for a minute. He has major anxiety, understandably. The needles I will get for these shots are TEENY TINY. They are diabetic needles. I think it would be more painful for him to have the catheter inserted even if it is every 5 days. I think he would be better off if I just did the shots daily. It will only take a second so by the time I put the shot in he won't even realize what happened (Hopefully). Plus I can alternate where I give the shot each time so he won't bruise. I can give the shots on the thighs, back of his arms, butt or stomach. I will most likely use the legs the most. So while I still hate that I have to give him these shots I feel comfortable with doing it. 

Needle that we will be using for Jacob's shots.   
They tried to get labs twice today to check and see if Jacob's lovenox dose is at a theraputic level. Both times it didn't work. Jacob's veins are just so bad they won't give enough blood. Tomorrow they are going to try to get it from an artery in his wrist. They have to see if he is at a good level. We don't want him to be able to bleed out but we also don't want him to clot so it is a fine balance. If he is not at a perfect level they will have to adjust the dose and check again. They HAVE to do the test 4 hours after the injection so there is a small window of opportunity. Praying they get it tomorrow so they can write his scripts and not hold up our discharge.

Jacob worked with speech again today and had a little bit more trouble. He is a crammer with his food so we had to give him tiny bites or he would swallow and cough instead of chewing it up. We are going to have to work with him on getting him to chew more instead of shoveling it in as fast as he can. He also had a little trouble with the chocolate milk so we may have to thicken his liquids for a while until he gets used to the new airway. I will learn more tomorrow because he will be having a swallow study that will show us what it looks like as its going down the airway and how we need to proceed. Most likely I will have to use the g-tube some to help supplement with pediasure until he is back to his normal eating.

Working hard on eating.
Jake will also have a heart echo tomorrow. The docs plan on getting his prescriptions sent to the pharmacy for me so on Friday all we will have to do is rounds then DISCHARGE! We will take Jake to the Ronald McDonald House for the night and Andy is flying in that evening. Then we are going to rent a car and drive back home on Saturday morning. HOME... oh how I miss home. I can't wait for our family to be under the same roof again. I can't wait for Jacob to feel safe again and not cringe and cry everytime he sees someone come into our room. I can't wait to see Aidan and have my cuddlebug back. Please pray all goes well tomorrow and we can be discharged as planned.

Thank you as always for the prayers. 


1 comment:

  1. Im so happy Jacob is doing good and you get to go home. We had to do lovenox too with Raygen. We did it for about 14 weeks, twice a day. The only problem we had with it was our local pharmacy never had lovenox in a vial before us so it always took them a couple days to get it in. Which meant I had to keep really good track how much we had because we had to wait for our insurance company to approve it. It was a mess. I'm sending lots of prayers your way that you will be going home.