<p>Just an update, since some folks have been very nice about expressing concern for our S. Today is graduation; dh will attend for D. I’m at the hospital with S, who was transported to a more advanced facility near our home last week. It was tough, but at least we have more confidence in the doctors here, who have greater expertise in his condition than the ones near the university.</p>
<p>Barring yet another setback, S should be released in a couple of days. He will be on TPN for at least a couple of months, along with various IV administered meds. In three months, his new surgeon will decide if another operation is indicated.</p>
<p>S is in far better spirits than I would be under similar circumstances, but he still has his down days. The future is totally uncertain, and he doesn’t want to make any plans. Depending on how things go, S may enroll is a few distance learning courses at the local comm. college, just to satisfy the insurance co.'s requirement that he must be a full time student at least one term per year…have to play the game. </p>
<p>We are trying to figure out the practical everyday solutions to life at home. Dh doesn’t want any cooking done in the house until S can eat again. He says that we could stand to lose some weight anyway. We need to figure out how to modify clothing to allow for the IVs and drain and other issues. If anyone knows of any websites or books that address this stuff, I’d appreciate suggestions.</p>
<p>Robi, I missed what happened to your son and I hope he recovers quickly. About the tubes and clothing - you will have a home nurse visiting daily if he is on TPN and IV tubing can easily be disconnected and reconnected so he can probably wear his normal clothing (though tight T shirts may be difficult if his access is in his neck. The nurse will show you how to do it. </p>
<p>I hope your daughter has a lovely graduation in spite of the family situation.</p>
<p>CGM - how do I change the title? Or does that require a new thread? Sorry, but I’m too sleep deprived to think. S is just sad about missing his graduation today, as well as not seeing his sister graduate. I hate that I’m missing her graduation also, but his care takes priority, which she understands. </p>
<p>We won’t be eating out. Dh and I don’t like to eat in front of S because he has not been able to eat or drink anything for some time, and won’t be able to for 2 - 3 months. We’ll eat salads, cold sandwiches, yogurt and other things that don’t have a strong aroma or require cooking, and can have our meals when S is sleeping or otherwise engaged. Dh can get a hot lunch at work.</p>
<p>I’ve shortened sleeves on some clothes, but haven’t figured out how to manage the abdominal drain. He’s been in a hosp. gown for the past two months. I did buy some soft flannel nightshirts and split the sleeves for access. The head nurse suggested flannel boxers and dorm pants, but S doesn’t like the idea of a waistband over his two incisions, one of which is quite long. The doctors think the drain may only be needed for 2 - 3 weeks, and by then S should be able to manage a drawstring waist or loose elastic.</p>
<p>Does he have a PICC line? Sounds like an arm access instead of a central line. They will show you how to disconnect and reconnect for dressing/undressing/showers. Here are some arm covers–looks like you could fashion something similar as well.
[picc</a> line cover sleeve waterproof picc line cover](<a href=“http://www.piccaboopicclinesleeve.com/My_Homepage_Files/Page1.html]picc”>http://www.piccaboopicclinesleeve.com/My_Homepage_Files/Page1.html)
They also make other covers for ostomy bags. If it is something like a JP drain, they probably can help.</p>
<p>There are lots of dorm pants and drawstring pants that are very low cut now-a-days. I was to be a patient myself, and went looking and trying on for some cut “scrub” pants. Tried on plenty. Had no idea they could be cut so low…Some hand on the hips and might just be so low as to be lower than the incisions. The pants for girls/women are definately cut low. If he is not a big guy, and you find some unisex colors… and he can let out the drawstring for a really loose fit.</p>
<p>Drawstrings, loose elastic, incision or not, I’d think would work ok at this point. If his incision or drain area is that tender, putting a dressing over it should help. Abds or fluffs are soft. Hopefully they’ll give you a handful and a roll of tape as you leave the hospital? The thought of something over the incision to him at this point may be scarier than the actual reality. And wearing something ‘real’ might be a moral boost. </p>
<p>Loose, soft sweatpants can be rolled down at the waist to avoid incisions. A sleeveless T shirt with a low neck can be put on with a little expert advice on how to thead all the lines through the neck hole and arm hole. If ambitious, you could take that sort of shirt, slit the side and neckhole, install velcro. Buy a pack of white T shirts with a V neck, cut them up as appropriate. I’ve seen girls cut boxy Ts, make ties along the side for a more form fitting look. If not too bizarre for his taste, this could serve your purposes well depending on IV access needs. A button in front PJ top, with an arm in or out as necessary over that can provide warmth. A drain, if the squishy bulb kind, can be pinned with tape to a shirt. </p>
<p>You and your H need strength and sustainance for this difficult time. Don’t deprive yourself of hot, nourishing good food in your efforts to care for him. </p>