Shortly after we returned from vacation, my daughter started having a lot of right-sided pain just under her ribcage and nausea. After a week, instead of it getting better, it was getting worse. She called me to “consult” on what I thought it might be (nurse to nurse). I ruled out liver problems, thought it might be muscle irritation but knew she needed to get it checked out. I told her to bring me the baby (2 1/2 month old Elijah, Eli if short) and go get it checked out. Being that it was the weekend, she and her husband went to the emergency room. A quick work up ruled out anything serious but they suggested her gallbladder might be the issue and recommended a follow-up to her primary care doctor.
Her pain was not getting better and was at times worse so she got an appointment the following week. The doctor immediately scheduled a STAT CT scan. As she was coming into our house to pick up Eli, she was hanging up her phone, “Mom, I’m going to have to have surgery!”
I immediately went into “mama” mode, getting what details she had and reassuring her that we would be here to help her out. Apparently she had multiple gallstones which were periodically blocking her bile duct. If one lodged there, it would be emergency surgery. Regardless, she needed surgery as soon as it could be arranged. He also told her she could not “jiggle, bounce, or do any other jerky movements and could not carry heavy items.” Eli is a fussy baby and we do a LOT of bouncing with him to calm him down. So, we came up with a way to reduce her risk of bouncing.
After I get Lynn through his morning routine, I run over to her house, about ten minutes away, pick up Eli, and bring him back to our house. During the day I rotate taking care of Lynn’s needs with Eli’s often while handling requests from work. The first week wasn’t so bad. My parents came up and totally took over the “Eli” job. They were awesome and loved every minute of it; however, when they went home to take care of a few things, they found their floors had been flooded by a cracked toilet fixture and there was mold and ruined carpeting to address. I felt awful. Had they not been here helping me, their things would not have been ruined. I also admit though I was very disappointed they could not return here because they had been wonderful with Eli and I really enjoyed their stay with us (they live five hours away from me). But when life throws you a curve ball, you take a swing and see what happens.
Actually, though it’s like Grand Central Station here with everything I’m trying to do, it’s really rather enjoyable. Eli is a great diversion (in more ways than one). He’s now three months old and loves to smile. He recognizes me and my voice, as well, as Lynn and his voice. Though Lynn can’t do as much with him as he would like, we have developed a way of allowing him to help out with “sitter duty”. When Lynn is lying down, I put Eli under the arm that has limited movement and wrap it around him. Eli is then lying with his head and back against Lynn’s side. Lynn sings and talks to him and Eli coos and talks back. When Lynn is in his wheelchair, I have a “rocking chair” for the baby that allows me to strap him in and it has a play bar over it. Lynn keeps the rocker moving when the baby gets fussy and entertains him with songs and stories. I also often lift Eli so he’s eyeball to eyeball with Grand-dad for some heart-to-heart conversations.
Eli is like a drug for Lynn. Before I go and get the baby, Lynn might be feeling tired and out of sorts. Once I come back and Eli gives him a few of his famous grins and gurgles, Lynn just lights up! He laughs with him and forgets for the moment all his frustrations and hardships. He told me after the first day that we kept Eli that he was the best medicine he had every had. He calls me to bring the baby back to his room for a visit, often throughout the day and each time, their bond gets stronger.
My daughter’s surgery is now scheduled for September 7. She will not be allowed to lift Eli at all for three weeks afterwards so his Dad will drop him off here when he goes to work and pick him up when he comes home. Mom might come initially but I expect it will be easier for her to resist the temptation to pick him up if she stays home. It will certainly be hectic but I’m actually looking forward to it.
Having a baby around is healing. He brings joy and the promise of bright tomorrows. It’s wonderful to watch him discover the world though his hands and feet and see the amazement he experiences over things we take for granted. It’s really a blessing of healing having him here. … (Though if you want to send up a few prayers for my sanity and stamina for the next four weeks, I wouldn’t object!)
For most of us, if we get a cut or scrape or even a deeper laceration, we start to heal immediately and in a few days or weeks, it’s much improved. Skin has miraculous healing powers. Immediately after a cut, the body clots the bleeding, sends white cells and special chemicals to the site to fight off infection and within hours new cells start replacing those that were lost. It’s awesome how God created such an amazing process for regeneration within our own bodies that takes place day after day.
When everything in the body is working properly, skin breakdown is not big deal, but that’s not always the case with an MS patient. For one thing, MS is an auto-immune condition meaning the body already has it out for itself. Therefore, it’s NOT working properly much of the time. Then, if there are mobility issues, the circulation to areas that do not move as well is often impaired and that slows down wound healing, too. On top of that, if you’re taking an interferon like Rebif, then you could suffer from a decrease in the production of replacement cells. And on top of that if you’re on steroids, your wound healing is REALLY impaired. So getting a skin tear is a big deal with a wheelchair-bound basically immobile individual.
That being the case, when I give Lynn a bath, I really try to check out his skin and keep a watch on any cuts or scrapes that might be present. He gets a lot of skinned elbows because he doesn’t pull in his arms as he should when rounding a corner going into a room(and no, he won’t wear elbow pads, I’ve tried). Usually those heal pretty well because he moves his arms a bit more than his legs.
My greatest worry though are open wounds on his buttocks. He has two almost pin-head size openings on his buttock near his coccyx. Not a good place to have one. He can’t sleep in a bed right now because his legs are so uncomfortable so he sits in his wheelchair probably 22-23 hours a day–that’s a lot of time sitting on one part of the body; plus he doesn’t move his core very much. He can’t really reposition himself in his chair other than to tilt his chair backward so he can slide backward. Therefore, to get a wound on his coccyx area is a big deal. It’s a risk all the time for more shearing with movement and the pressure makes circulation to the area less.
He has had buttock wounds before and I’ve tried various types of skin barriers and patches to treat them. Often the patches, even though designed for wounds, tend to tear the skin in other places when they are removed due to the adhesive. I’ve had small areas the size of pin-heads enlarge in a week to wounds the size of a quarter due to removal of bandages or dressings. It’s very discouraging and something to watch very carefully.
I know from when I was working as a nurse that patients who do not manage skin wounds well can die just from the horrible wounds and infections that develop over time. I also know that at times the layers of tissue under what appears to be a scab are often continuing to deteriorate. Wound care is very complex. If the person you’re caring for gets a wound that keeps getting bigger rather than smaller and isn’t in time, showing the nice pink edges of healing, or if the wound starts to smell or drain a lot, see a doctor or wound specialist pronto. Skin wounds are nothing to ignore. Take them seriously and don’t wait, too, long to have someone who knows how to treat them properly take a look. If you don’t, the results can be tragic.