DETAILS: Samuel slept last night from 10:30 pm until about 4 am and then again from 5 am until 8 am. He was napping for a bit when I got here around 9 am. And he took a real good nap from 2:30 pm until 5 pm when we finally woke him up. We raised his pump again in hopes of helping his posturing. We aren’t seeing any bad side effects from the pump and I think his joints feel looser the more we raise it. The only down side is we may get to the point where he needs it refilled with medication every two weeks or so. But we could live with that.

I have seen the sutures on his head (where the pieces of his skull come together and will eventually fuse with age) swell at times and turn red like a goose egg. I’ve mentioned it to the doctors at least 3 different times and they keep assuring me it’s nothing. But I finally convinced them to do a CT scan on him before we go home just to ensure there’s no swelling in his brain that is pressing against his skull. We did that today and should get the results tomorrow.

Otherwise, it was a nice slow day. I did take Samuel down to the cafeteria while I ate dinner tonight and when we got back we watched the DVD that was made of him for the benefit dinner last month. He did sit and watch it between his posturing and he seemed interested in it. His eyes seem more and more alert each day and he is definitely more able to track and see things than in the past two months.

Thank you again to everyone who has done so much for us. As we get ready to head home, we know that it will just be the start of another chapter in this part of our lives. But as we close out this chapter, we know without a doubt that we could not have survived it without all of your prayers and support. We believe that God does so much of what he does through the hands of others. Thank you so much for being willing to be his hands in this life. We can never thank him or all of you enough. And although this is just the beginning of a long journey, it’s exciting to be moving ahead.

Thanks again everyone! Like I always say - keep up the prayers! They’re working!

Love,
Teresa, Tom, Samuel & Boys

Samuel slept OK Friday night, but was up by about 4 am because he had fallen asleep at 7 pm. So we still need a little work on getting him on a better schedule. He had kind of a hard day all day Friday and was posturing quite a bit. Maybe he just knew dad would be here to watch him and didn’t want him to be bored. Tom watched him while the kids and I went to a movie. It was nice to get out.

We should be going home on Wednesday or Thursday provided they get all the equipment there for us. I doubt they will have the nursing care set up for us by then. So if anyone has any suggestions there or knows of RN’s, LPN’s or CNA’s that might be interested in helping us out, please let me know.

Keep praying. We REALLY, REALLY would love for his posturing to stop. But all in the Lord’s time, right?

Love you,
Teresa, Tom, Samuel & Boys

DETAILS: Samuel didn’t fall asleep until late, but he slept until 6:30 am. His morning nurse got a little carried away and gave him clonadine at 7:30 am, tranxene at 8 am and more clonadine at 10:30 am because he was “arching a little.” By the time I got here at 11:00 am (had to get some shopping and wash done first), he was out cold. I was a little frustrated because I don’t like to see him that drugged. It will be nice to get home so we can control things like that.

Samuel spent probably 4 hours in his chair today. Two in the early afternoon and 2 later tonight. He really seems to enjoy being in the chair and I take him with me to lunch and dinner if he is awake and feeling well. He doesn’t seem to mind all the noise and stimulation in the hallways and cafeteria. I think they are good for him.

Physical therapy went well. They are going to try and do a swallow study on him Monday to see if he will swallow correctly so we know whether we can try some food and liquids with him when he gets home. His feeds went well all day. He still has the catheter in him and we’re hoping after this break, he will start urinating on his own again.

We raised his pump a little again today. They wanted to do a 10% raise, but I asked them to just go 5% at a time. That raised him to just over 1400 per day. He seemed much, much calmer all day since we changed him to the continuous infusion and he is sleeping better with the higher doses at night. He is still getting the tranxene every 6 hours, but I think we can start backing off on the clonadine quite a bit. I also asked them if we could back off on the keppra since I don’t know that it’s doing him any good and it can really make you groggy. They suggested we try that when we get him home, so we will. He is basically only taking tranxene, clonadine, keppra & the baclefin in his pump along with some medications for reflux and some stool softeners. I want to get him off as much as we can and let his little body work on its own as much as possible.

They should take the cast off his right arm tomorrow and build a spint for it. They also ordered for his back brace to be worn 18 hours a day. I veto’d that order and told them we could try it a few hours a day, but just going from nothing to 18 hours a day is really going to make him upset and cause sores on his body. So we’ll try it for a while tomorrow. Everytime I’ve put it on so far, it hasn’t seemed to help the arching much and it’s really made him mad. We’ll see.

I met with the discharge nurse today and we’re working on getting everything we need to go home the first of next week. We don’t know when or if we’ll even be able to get the night nursing care. But at this point, we’ll go home without it if we have to.

Pray hard that he’ll keep feeling better and mostly that his posturing will subside. Of course, only if it’s the Lord’s will.

Love,
Teresa, Tom, Samuel & Boys

All the feeds went well today. He did spit up a little tiny bit during his last feed, so I put him up in his chair until the bolus feed was over. I’m sure sitting up makes a big difference.

The doctor this morning verified that his lungs did show some pockets of fluid, but they were small and his lungs actually looked better than the last time they x-rayed them which was when they think he aspirated his own saliva. That tells me that he is protecting his airway better now even with all the throwing up than he was a month ago when there was only saliva for him to aspirate. They are not going to treat him with antibiotics unless his fever comes back. So far, it looks as though he’s going to get over this on his own. He sounds much better today than he did yesterday and he is coughing more than I have heard him cough since we got here. That’s actually a good thing because he is clearing his lungs out himself.

They did an ultrasound of his kidneys and bladder and all looked fine. So the put in a catheter that will remain in place for a few days to give his bladder a break. Hopefully, that will help his urinary retention.

This afternoon as he fell asleep, his eyeslids were twitching as he moved into deep, dream sleep. A few minutes later, I walked in the room and he was smiling great big smiles in his sleep. He did it about 4 times and asleep or awake, it brought me quickly to tears since I haven’t seen that smile in a month or so. The nurses even came running in hoping to get a glimpse of it. They all love him so much and cried when they saw me crying. They’re great.

We changed his pump back to a continuous dose and raised it from 1300 micrograms a day to 1350. As long as we don’t see any negative side effects, we’re going to try and go up some more. Samuel still isn’t to a point that he can even begin to relearn things because he is still to taken over by the constant posturing. We need to see if we can calm it down more so he can be more attentive to things around him.

Samuel had a pretty good day himself. He did sleep quite a bit, so I hope he sleep tonight also. I was leery to wake him because I figured his body was working on getting rid of his “cold”. But when he was awake he was fairly calm and pretty attentive.

We’re getting excited to come home soon. Keep little Samuel in your prayers!

Love,
Teresa, Tom, Samuel & Boys

Samuel fell asleep for the night at 7:30 pm, but at 10 pm, he woke up and threw up more than I have seen him throw up since we began our stay here. I didn’t think he aspirated anything, but the nurse says the top of his lungs sound worse than they did before he threw up. Not good and I’m not sure what our options are to fix this problem. For tonight, his feeds will be stopped.

We gave him some ambien at about 11:30 pm and he is just falling back to sleep. Hopefully, he will have a good night. He sounds very congested and croopy which is probably his body trying to fight off the infection in his lungs. However, his fever has not returned since this morning, so that’s a good sign.

Keep us all in your prayers. We need to figure out what to do about his feedings so we can get him home. Pray that we will know the right decisions to make. We love you!

Love,
Teresa, Tom Samuel & Boys