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Thread: PT Visit for Lymphedema

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    Exclamation PT Visit for Lymphedema

    ((((((Hugs to All)))))) ~

    I decided to post a new thread, rather than post this in the Updates thread, where it might be lost in our great discussion about MBY.

    After nearly a month of waiting, Jon's PT sent me a text today saying that he was authorized to visit Jon and wanted to drop by today. Fortunately, the house is clean, because the Toenail Team was here yesterday. More on that in a moment ...

    PT assessed Jon's legs, noted that he doesn't have pitting in his skin (a good thing), examined the blisters on the top of Jon's foot, and stated that the best treatment is to wrap Jon's leg in cotton and two types of compression tape. Now, Jon looks like he has a broken leg, or is in the process of mummification.

    I texted PT tonight that Jon's knee and thigh are quite swollen, and I asked if we needed to do more than elevate his legs. Waiting for a reply there. It's a little scary.

    PT will return on Friday to unwrap Jon's leg, reassess, and determine whether to continue this treatment, increase compression, or return to the compression stockings. He expects good results, but he also said that he will request visits for 3 times a week until the fluid retention is resolved.

    I don't know whether Jon's insurance will authorize this, but he's going to submit it and hope they do.

    As much as we like our PT, visits 3 times a week don't allow for much else to happen in a week. For example, at some point we need to get rid of our termites.

    That will require several days of ripping out our office closet, so that the exterminators can access our two attics. They will inject orange oil into the studs, then we have to turn up the heater to 90 degrees for several hours. Considering that we're facing a heat wave this weekend, this may have to be stalled even longer than it has been.

    Also, it's stressful when we have people visiting, because Jon's sleeping patterns are all over the map. Jon woke up at 8:45 this morning, after 6 hours of sleep. By noon, just before the PT's arrival, I had to wake Jon and keep him awake for the PT's visit. He is just so tired all of the time now.

    Of course, if this is what Jon needs, this is what we'll do. He's NUMBER ONE.

    I confessed to PT today that Jim and I haven't been doing Jon's stretching exercises, because we didn't feel comfortable. We needed more training, and the PT had knee surgery and was out for over 4 months. We were probably doing it wrong, as Jon expressed pain, so we stopped.

    The PT was so kind and told us that we did the right thing. Given Jon's nonexistent left hip, his contractures are a part of his posture now. And he noted that Jon's legs are not any more windswept than they were when he visited 2 years ago.

    Toenail Team yesterday cut out ingrown nails on both of Jon's big toes. Both are infected. We are waiting for the regimen from them per the podiatrist. Antibiotic cleanser and ointments, most likely.

    Jim and I are becoming concerned about the enlargement of the granulation tissue around Jon's trache stoma. We don't know what we can do to conquer it, nor whether it might encroach and cause breathing issues for Jon. I doubt that our nurses would know what to do, as they have so few trache patients. We don't have access to respiratory therapists. Or a pulmo doctor. Something that I need to explore. I just have to figure out where to begin.

    So, we're praying the compression wrap works quickly and effectively. PT mentioned giving Jon Lasix, a diuretic, and Jim and I simultaneously exclaimed, "NO!" That must be done in a controlled environment, like ICU, because at home, we've gotten into trouble giving Lasix. Dehydration, seizures. Nope. Absolute last resort, because that means the hospital.

    It only took about a month to get the PT here. Now that Jon is a Palliative Care Patient, things should move more effeciently. If not, I have extra leverage, when I complain. At least, I think that's the case. I guess we'll find out.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    I don't know Jon's situation PT wise that well. However for me to have benefit from PT I had to have it once a week or more so try to get the PT in often if possible. I'm sorry Jon is so tired. I would guess the granulation tissue is his body realizing he has a hole in his neck and is trying to close the hole as it is naturally designed to do. It means Jon is healthy but in this case it is not desired…I wish I could help more.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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    Rose as always so busy!!! I'm praying the compression wraps work quickly. You have so much on your plate My head is spinning just reading it all. You do such a wonderful job getting everything done I have no doubt it will all get done. Praying today bring good results when the PT comes.
    Mary Grace

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    Thumbs up

    ((((((Hugs to All))))))~

    funnylegs4 ~

    Jon's PT isn't doing any actual PT per se. He is providing treatment specifically to reduce the fluid retention and control the Lymphedema. The reason for the extra visits is to ensure that the wrapping treatment is working, which, thankfully, it is. Once it is under control, he won't visit any longer.

    The formation of granuloma is a result of the Dilantin Jon takes for seizure control. He has granulation tissue on his toes, and his gums overgrow because of the Dilantin, which is why we had to have all of Jon's teeth removed in 2009.

    Thank you for thinking of us.

    Mary Grace ~

    Thank you for your prayers ~ they worked!

    The fluid is completely out of Jon's calf, but it has moved up to his knee and thigh. So PT wrapped only Jon's foot today and put the compression stocking over it, up to his knee. PT will return on Monday to check progress and rewrap.

    He was also able to debride the scabbed blisters, thanks to the fluid reduction. We applied some organic honey and almond moisturizer to his foot, before he wrapped it. He really is an expert in fluid management, and we are so grateful to have him as Jon's PT.

    He's also a very gentle and caring person, and Jon loves him! PT revealed to us that today is his birthday! He's all of 37! A baby! He and his wife just bought their first house, and they are so excited.

    He begin tallying up all of the things they need to live in a house, rather than an apartment, and he mentioned having to get a lawn mower. Just so happens that we have an electric lawnmower, which we haven't used in forever. It's like new. We also have an edger, and who knows what else. So, we told him it's all his. On Monday, he will leave with plenty of tools to tend to his yards and garden.

    Our backyard is dirt with flowers/plants struggling to survive. It was once a lush green lawn, but then this drought happened. We are going to have concrete laid, because it's the only sensible option now. It's on our quite extensive To Do List. We are hoping to have our front yard re-landscaped with drought-tolerant plants.

    So we don't need a mower or edger or any of those things. And we're thrilled to give them to PT for his new home. It's the least we can do to thank him for saving Jon's life. Don't you think?

    We weren't sure how this would work out today, since Jon was awake all night and didn't fall asleep until 9:00 this morning. So we moved the appointment to 2:00 p.m. instead of 12:30. Jon woke up at 12:30! That isn't enough sleep for him, of course. But it gave me time to give him a bath and for Jim and I to reposition him before PT arrived.

    The only thing we can predict is unpredictability!

    Hope everyone is well and enjoying the Summer so far. Healing prayers for all ~

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    Sure hope you are staying cool in this heat! That can't be good on swelling. We finally went out and bought a room air conditioner. It is helping. Tyler no longer tolerates the heat well. We checked into and AC unit, but it was pretty cost prohibited. We haven't replaced the heater in 40 years, and seldom use it. However, it isn't compatible with todays AC units and would have to be replaced to get AC.

    We took out our grass in the front yard and replaced it with mulch, stepping stones, draught tolerant plants, shrubs and fruit trees. Looks great and we don't miss the huge lawn. Would love to say we are saving a lot on water, but still have a pool in the back that has to be topped off at least weekly. Try to save in other areas though.

    Been up since 3:00 with chatty, seizing Tyler, so I can relate with Jon staying up all night. Gave Tyler Valium but it didn't help much. When they are awake, we are awake.

    Sure glad to hear you have good people on Jon's team that are caring, compassionate and knowledgable. We had a visit this past week from a Superior Court investigator. Apparently they check up on you periodically when you are a conservator. Good thing actually. She was very sweet and very moved by Tyler. He does have that affect on people. Had Tyler's indwelling removed last Monday. No difference seen in or out. He did test positive for another UTI which we had to confirm on Friday with a new sample. Same weird bacteria he had in April. We'll know hopefully tomorrow if we are going to treat it or not. Still waiting on the Uro-Dynamic test. Hurry up and wait. In the meantime, Tyler is still having 3-4 AD episodes a day. Getting to be second nature by now.

    Happy Fathers day to your wonderful hubby Jim. Get some sleep!
    grandmother of Tyler (22): Ohtahara Syndrome/SCN2a gene mutation, cortically visually impaired, quadriplegic, severely developmentally delayed, no speech, severe intractable seizures, frontal and temporal lobe atrophy, progressive scoliosis/kyphosis, chronic kidney stones & UTI's, gastroparesis, 100% tube fed, autonomic dysreflexia, but what a precious gift from God. "Lord, grant me the serenity to accept the things I cannot change."

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    Hi Rose,
    Thanks! I kinda figured it wasn’t like the Physical Therapy I had but I thought maybe this PT could visit and do the massages or exercises with you a few more extra times since for me the more the better with that kind of stuff. Like I said I don’t know Jon’s body like you do so excuse my assumption but you’re welcome! I think it is so sweet that you gave the PT such a great gift! He sounds utterly awesome!

    Tamie, sorry about the seziures and infection :(
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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    ((((((Hugs to All)))))) ~

    Tamie ~

    Aren't you glad you got that room a/c? I'll bet it makes a tremendous difference for Tyler. Heat always affected Michael adversely, and Jon is sensitive to heat now that he's older. I strongly feel it's related to the hypothalamus, since both my boys have/had Gelastic seizures, and they emanate from that part of the brain, which regulates body temperature.

    We have Dyson fans, which are fabulous. Very expensive, but worth the cost, when they save use of the a/c. And significantly cheaper than investing in central air. Something to consider. How hot did it get in your area? It was 107 here yesterday, but today it's around 87, and it feels so much cooler!

    I'm so sorry that Tyler has another UTI. Did you get the results yet, and are you going to treat it? If there is no difference between the indwelling and intermittent cathing, then the only thing about an indwelling for Tyler is saving you and Jerry the effort of cathing Tyler. Did you find that it freed up your time a bit more to have the indwelling?

    It's so irritating and discouraging to hear that Tyler has not had his Uro-dynamic test yet. Meanwhile, he continues to suffer with 3-4 AD episodes/day. Just wrong on every level. I pray that the test happens soon.

    Your front yard sounds lovely and very similar to what we'd like to do (or have done, since we're in no shape to do it ourselves!). We don't have a pool, but we do have Michael's waterfall/pond, which has to be drained and refilled periodically, especially in hot weather. I refuse to turn it off! We now have a sparrow hawk visiting on a regular basis for a drink and bath, and a wide variety of other birds, who frequent Michael's garden. So, we are providing a safe place for birds, which is very important to our ecosystem. And like you, we save water in other ways.

    How nice to hear that the Court Investigator was kind and compassionate. I know what you mean about Tyler's affect on people, when they meet him. My boys affect people the same way. As with Tyler, it is their innocence, purity, courage, and sweetness that really touches people's hearts, I think.

    About 16 years ago, I walked into Michael's hospital room, after my lunch break, and discovered a nurse standing at his bedside, holding his hand and weeping. Of course, I was terrified initially that something dire had occurred in my 20 minute absence. I rushed to Michael and fearfully asked her what was wrong and if Michael was okay.

    Through her tears she said, "He is perfect. When I look at him, I see the Face of God. And I am just filled with God's grace being near your son."

    One of the most amazing moments in my life.

    Please keep us updated ~ Healing prayers always on their way ~

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    ((((((Hugs to All)))))) ~

    funnylegs4 ~

    A major obstacle to having the PT visit on a regular basis is Jon's Medicaid insurance. We have to wait for authorization from Medicaid, before Jon can have treatment of any kind. Jon's PT was authorized for one visit, and then he submitted a request for 3 times a week. We are still waiting for Medicaid's approval. Meanwhile, PT has visited three times.

    When he visited yesterday, he decided that the treatment has been successful, and he discontinued the wraps, and now we are using the compression stockings again. He showed me how to put the stockings on, as Jon's left leg has two stockings ~ one for his foot up to his ankle, which is then covered with a stocking up to his knee.

    Since we've been putting these stockings on Jon for several years, we know what to do. PT turned the daily care over to us, asked us to keep him informed, and offered to visit "as a friend," if we needed him, while we wait for Medicaid approval.

    Thankfully, the fluid is moving. Jon's urine output and bowel output are very good, which means that the treatment is working to remove the fluid.

    Father's Day Crisis

    On Sunday, Jon's SATS dropped to the 80s, and we had to suction several times, give a breathing treatment, and then put him on 2 liters of oxygen for about 5 hours. His temperature rose to 101.5. His excretions were thick and green, so we feared pneumonia. We feared that the fluid was being pushed up to his lungs. But PT said yesterday that the fluid is contained now in his knee and thigh. And with continual draining of fluids through pee and poo, that should resolve soon.

    So, Jim spent his Father's Day tending to his son, who was in a crisis. It was too hot to celebrate, and we were exhausted.

    PT's Monday Visit

    Yesterday, Jon didn't fall asleep until 7 a.m., even though I bedded him down at midnight. We moved PT's visit to 2:00 p.m. At 1:30, Jon was still sleeping, but we had to wake him up to suction him, as his SATS had dropped to the low 80s. Being the trooper he is, Jon perked up when PT came, was animated and chatty, and happy to see PT. PT told Jon that he is his favorite patient and that he was proud of Jon for handling the treatment so well.

    We managed to avoid O2 with suctioning, positioning, and opening his trache so he could cough. His temp was normal. But he was incredibly tired. It was 107 here, and even with the a/c on, it still felt hot in our home with the sun beating down on our concrete tile roof.

    Jon gave PT two DVDs about the Lakers, one called, Kobe, Doing the Work, which is all about Kobe's PT to rehab from an ankle injury. We thought PT would find that interesting, and he is a Lakers' fan, so that's a no brainer, eh?

    PT said that his a/c conked out when he had 50 guests in his new home on Sunday. So, we educated him in furnaces, a/c, plumbing ... Jim showed PT our furnace, the filter, which needs to be changed regularly, and our water heater.

    At one point, I realized the circle between us ~ PT is like a professor of fluid management. He is brilliant and so competent in his field. We are always in awe of his knowledge and teaching skills.

    Now, here he is a first time home owner, and he knows absolutely nothing about taking care of his home, and we are the experts, teaching him.

    It is serendipity.

    He was over the moon with the old mower and edger! We were out there in the blazing heat loading into his car, and he was just like a kid in a toy shop. It was beautiful.

    Lymphedema is a painful and persistent condition, which can be fatal. And this young man devotes his life to caring for people, who battle this condition for years. God Bless Him!

    Today

    Jon's SATS are in the 90s, his heart rate is in the 80s, his temp is normal, he's peeing and pooping like two race horses. We are so grateful. We have no explanation for any of this. We're just extremely grateful that Jon is feeling better.

    Through the smokey skies above us thanks to numerous fires, the full moon strives to shine. It's happened too many times with Michael and Jonathan for me not to believe there is a connection. It seems to be a force with which we cannot reckon.

    Thank you so much for your prayers. They are working.

    Many prayers on their way to you as well.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    Hi Rose, I'm so glad Jon is feeling so much better! It's very,very hot where I am and I also feel kind of clogged up so I wonder if Jon and I were both reacting to heat. I thought it was so sweet that Jon gave his PT the DVDs! I wish I had done something like that for my nice PT who was an expert in boo boos and exercising! Unfortunately he moved away years ago :( I still miss him. Jon's PT seems to have a truly kind heart and that is something very special in this world. Indeed God bless him! It is beautiful that Jon's PT offered to visit "as a friend"! Especially given the insurance situation which I am familiar with in regards to PT. Hope they approve the requests!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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    ((((((funnylegs4)))))) ~

    We are extremely blessed to have a wonderful health care team ~ nurses, PT, podiatry, doctors, and our hospital. It hasn't always been so, which is why we are even more grateful.

    Jon has been having trouble keeping his SATS up today, and we ended up with a breathing treatment and suctioning. He's beginning to have a low grade temp, which we pray doesn't escalate. No O2 yet, and we pray that isn't going to be necessary. His nurse will visit early next week to change his catheter, so we may ask for blood work and sputum sample just in case.

    I'm sorry that you're experiencing extreme heat too. We've had a respite for a few days now in the 80s, and that's a blessing! But the heat threatens to return soon. Ye Old Global Warming ... We're in for a lot more of it ...

    Stay cool (which, of course, you already are! )!

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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