May 20, 2022

Saturday July 7 2012 2nd Update

Contractor Needed!

We need to get a contractor lined up for our house renovations. Soon. We would like to have someone locked in by the end of this week. Anyone know of any we can start getting bids from? Of course I guess we have to wait for the plans to be done. But would like to h e a list of some to call when those plans are done.

Oh and did I mention that Danny’s inpatient has been extended one week? Putting his discharge at July 24th. We still are on the waiting list for the inpatient program.

Saturday July 7 2012 Update

We had a great forth. As some of you may have seen I posted pics on facebook. The AJC Peechtree race was i think the 30th annual race. I got the kids up at 5:30 am to get to Shepherds early to get Danny out front.We got out in front of Shepherds at 6:45 just as the first wheelchair racers coming up “cardiac hill” right in front of Shepherds. It was such a pep rally! We saw Marshall Hamilton, a wheelchair racer that visited Danny last week. Ronnie and Cindy McBrayer met him at a race in another state and told him about Danny an he came to visit. It was neat to know someone individual to cheer for!! Then came the rest of the 60,000 runners. First professionals then amateurs. We watched the race till the last walker passed us at 10:30. There was a brunch at Shepherds and Danny said I can eat any day but this cannot be experienced everyday. He went through two tanks of oxygen while out there. He was also having more respiratory issues that required him to be on 3 liters of oxygen, which he normally does not even wear. That didn’t stop him. I cheered the entire time! People came up to Danny and told of loved ones that were in Shepherds and was just like Danny or better off and are doing great and some were walking or running in the race! Many others stopped running and came over to Danny to touch his hand and thanked him for coming out and said many other encouraging words. Our favorite is “Don’t give up, Failure is not option!”Wooo! Words to live by! We did make it up to brunch. It took some coaxing to Danny as after having a taste outdoors he wanted to be outside all day. He has been inside so long being sick with his lungs and other issues. After brunch he coaxed me into going back outside in the heat to the plaza down the road to find some sun glasses. I had to stop and spray him down with sunscreen. you see Danny lost his sunglasses when he was floating in the water after his injury. We thought he was floating to look for them. He had a nice big black bug eyed looking pair of Costas! So no luck at the plaza. So we turned around, stopped to hydrate ourselves at a conscience store, and proceeded to settle for a crappy pair at CVS. When we are checked off maybe I can get him to the mall for some so he looks more stylish. He plans on getting some Vans, and other stuff that I’m not allowed to get for him. Haha! Ethan was with us all day. Danny’s parents took sleepy Summer back to the apartment. While we were out Danny’s portable suction pack kept falling off his cart so here we were on the sidewalk trying to rig some kind of system to tie onto Danny’s wheelchair. Finally I figured it out and we were off again. We are such fumbling goofs out on the road. On the way back from CVS Danny wet across the road at a green light in spite of me yelling stop. so I had to hurry rhinos him and push him faster and make sure Ethan was safe too! The. I gave him a good rashing!! He said he got confused and also though I was yelling at him to stop because I sometimes do that over stupid stuff like a crack in the side walk!!! Ugh!!! Really?? whew! Danny is still crazy folks! After a nice long nap next to Danny while Ethan napped in my old “bed” we had an ice cream social, yummy chicken pot pies ingot from Fresh Market and then fireworks on the rooftop. It was an amazing day for Ethan, Danny and I. It was really good to see him feeling well!!

Danny got his super pubic catheteron Thursday. He is doing well with it. He has a lot of pressure there which he was concerned about. But after talking to another patient who has had one for six months we were comforted in knowing a lot more than the doctor told him. The pressure and bleeding in his urine that he has been having is normal. We learned of a better more flat and low profile leg bag. We gain a lot of knowledge from those patients that have all ready been through experiences that we are now going through. I’m not afraid to ask to gain more knowledge and patients don’t mind taking about it. Things like bladder, bowel, and mucous become normal words in conversations when referring to spinal cord injury patients. So many exciting things are happening for Danny. We keep hearing he may get his trach out on Tuesday. But like I have said before, we have been hearing that for 3 weeks so we just don’t even get excited about that anymore. Monday,Tuesday and Wednesday I have family training to finish being checked off on all my “care taking responsibilities”. After that we can go out anywhere. So if anyone comes to visit us after that we can call a wheelchair cab and go places!!!! I want to make Dannys free time fun now. Pretty much only at night and weekends. Mostly indoor stuff so he doesn’t get hot. But we know how to prepare for that too. Next week he set up and outing with the Therapy Recreation to go out to eat dinner at a Chinese restaurant. A group date!! Very different from any date we have ever been on. Danny has a mobile arm support that attaches to the back of his chair and assists his not yet strong arm to help lift food to his mouth. So first we have to set that up. Then he has a tray that sits on his lap with a non skid pad. He has a plate guard that attaches to his plate to scoop food into. We then place his “L” shaped holder in his brace. He can hold a fork, spoon, stylus, paintbrush, all kinds of things fit in there. So if we don’t have our Therapy fork(that is all ready bent) I have to muster up enough strength to bend the fork in the most impossible angle. Hahaha! He has a really long straw that is put in his drink to reach him without someone lifting up his drink for him. So by the time all that is set up the food usually comes. Hahaha! It’s totally worth it to see Danny eat by himself…and can be pretty humorous at times. He might stab himself in the face or food might go flying. We try to pick easy things that he can stab. He has a good sense of humor about it too. Would we expect anything else from Danny?? All of the setting up is totally worth it. But sometimes Danny is tired because he has been working the muscles all day and he just ends up getting fed. We don’t really tolerate that excuse much any more. He had to at least try. It does effect the motion from plate to mouth the more tired he is though.

We also have a goal setting meeting with his “team” on Monday! Oh boy do I have a list of goals for them! I will let ya know how that goes. With the kids gone my updates will be more frequent.

Danny is also scheduled to go down to the pool next week. Not to swim, because he still ha an open airway, but to see all the assistive technology with the kayaks and how to get in an out. Because he plans on rigging things up so he can still do the things he used to do before his injury!! I love it! We are also trying to get in the trip to the Braves game on Saturday!
Keep prying for Danny’s lungs to heal and stay healed so that he can get that blasted trach out! Please also pray for continued strength. And remember to thank God for all he has done in our lives. By continuing to give Danny more strength and giving him a positive attitude and determination. Please pray for me as I take over a bigger role of caretaker next week and from here out. We have to get on a schedule as close to what it will be when we get home. Also prayer for all of those helping with the house plans. A big loving hug to Jeff Margaretten owner of Margaretten Architectural, a good friend of ours,who is working on our home renovations for us. You can see his talented and amazingly unique work on his website. http://www.margaretten.net/. Also to Deanna and Charlie Smith who own Milton Truss Company in
Milton, FL. They have offered to provide us free of charge with trusses for our addition!!! I have never met these two angels! Such a major huge blessing. Also to Wes Usher and his dad who have offered to do the electricity for us as his dad is licensed. Much love to all for everything you do for our family!!

Tuesday July 3 2012 Update

Danny only got two days of the intended one week of the ventilator treatment. And the new larger trach with a cuff has made Danny’s throat really sore! He was suppose to be getting it every night to break up the clogged spots of his lungs deep down. However his doctor went on vacation and the other doctor standing in felt that Danny could come off the vent after two days. But Danny’s lungs seemed to get worse and he kept having more secretions than ever. He was unable to even breath at times! The unbearable heat wave and the code Red for the bad ozone has kept us indoors causing the kids and us to go stir crazy. There is only so much to do indoors before one feels so cooped up and needs some fresh air. Too bad there has been no fresh air in Atlanta though. His pulmonologist doctor came back from vacation today and was surprised that Danny has been off the vent at night. Again he said “I see no reason why the trach can’t come out next week” as the chest X-ray looks better but not good enough to take the trach out. Every week for the last 3 weeks we have been hearing that. It gets a little frustrating. They changes his trach to one that is different today so(no cuff) so it has seemed to help his secretions slow down. So that’s where we are at with the lungs.

Danny’s pain management has been under better control. However he does tire easily and that’s when he has muscle pain. But he feels stronger and has been able to do more therapy to get stronger. He was scheduled for and hour and a half of the FES(electrical bike) yesterday and was a group session, but because of his lungs he was on oxygen and he had to have an individual stay with him and I couldn’t do it because I’d just left the hospital an was giving Summer a nap. It was shocking to me that in a therapy hospital were people are sick they cannot find one person who can go to his therapy with him. Then I guess they didn’t plan on him needing to be on oxygen during the day. If he wasn’t on oxygen he could have done the group therapy. He has no additional movement but is definatly getting stronger in the muscles he has. two weeks ago he could barely and uncontrollably reach his face to itch it. Now he can touch all the way to his eyebrows without much strain. His muscles do get tired at the end of the day.

This Thursday morning at 8:45 he is scheduled for a procedure to put in a super pubic catheter. Right now Danny has to get intermittent catheters to drain his bladder every 6 hours. It takes all his modesty away if you can imagine and can be uncomfortable since he does have sensation. So there is a simple procedure that the Urologist can do. He makes a hole right below the belly button into the bladder. Danny can then have options and maintain his dignity/privacy. He can attach a low profile bag to his leg that can just be emptied. Or if he wants to he can take the bag off and cap it off, like of he wants to go to the beach. So he can just uncap it and drain his bladder on the side of the beach buggy like he used too! Just like old times! 😉 so the nurse took a urine culture before his procedure and it turned out Danny has another bladder infection. His Pulmonologist put him on the same strong antibiotic he was on in ICU for his lung infection. So hopefully it will serve two purposes, to clear up Danny’s bladder infection and his lungs. The Urologist can still press forward with the scheduled procedure on Thursday even still.

Today I touched Danny’s leg and he got goosebumps and said “are my legs cold?” I told him they were and he said because my hands felt warm. This is great because he has not been able to feel any temperature differences below the shoulders, only sensation!! So naturally I freak about cool new stuff like that!
The kids and Dannys parents are leaving Atlanta on July 8th. I’ll then be able to focus more on Danny again. But I’ll sadly miss his parents as they have been a huge help with Danny. His dad gets up early and drives to Shepherds and helps Danny get breakfast and shaves him and stretches him and coughed him and many other things. His dad then drives back to the apartment and comes and gets Danny’s mom who then goes back to Shepherd and dies electrical stimulation on Danny’s limbs and follows a strict schedule as to which body part to do when. They have take. It among themselves to be there for Danny when I was home and learn how to properly do all these things. For him now and when he gets home. It’s a lot to do and quit exhausting to say the least. So I sure do appreciate having had them here to help with Danny and the kids.

Good news came today from a friend who is an architect. He went over to measure our house we own on Chase Run and to try and figure out how to better fit out needs. He came up with some brilliant ideas for changes in the house that may make it possible for us to stay there. So we are in the process of working out details. I will keep everyone posted on this issue.
I spent a fun day with Ethan today at Lego Discovery Center. We had a blast! The night I actually brought the kids back to Atlanta we went on a group outing with Danny and several other patients and the Therapeutic Recreational team. We went to see Madagascar 3. We all loved it even though Danny was having a terrible time with shoulder and neck pain. I seriously thought it was my presence because the entire time I was back home Danny was feeling great! But it does come and go. It was a good way for us to get out in the community and navigate and be with the kids and experience a little of how to still have fun.
Danny and I were able to have a much needed talk with Ethan. We cried, we laughed, we sobbed, we all got a lot off our chest, mostly Ethan. He’s a smart kid with a huge heart. It’s almost like talking to an adult sometimes. The realization of what him and Danny used to do together finally hit him. And Danny. It’s so hard to see both my boys sobbing and then have Summer in the background jumping on the hospital bed being silly and laughing. We all agreed to keep having these talks so that we know where everyone stands with their feelings and thoughts. There were some raw emotions and I know it felt great to get them out.
Most importantly I can’t stress how grateful we are to everyone’s support in every which way to help my precious family out! That relieves a huge stress financially as well. It make all the extra things much more achievable. We don’t have to worry about paying the extra $6,000 that insurance won’t pay to pimp out Danny’s wheelchair. It makes the house renovations much more attainable, and getting a new wheelchair accessible van doable. And the fact that we will have to fly home because it will be quicker for Danny and then rent a van until the government program works through the red tape to help us pay for a van. You see Danny has to do a one minute weight shift every thirty minutes. Which would make driving home a forever nightmare. Weight shift involves having his wheelchair shift all the way back to take pressure off his bones he sits on to prevent pressure sores. With extra money in the bank, getting home will be much less of a burden. So we thank each and everyone of you who has stepped forward to help us! We are very humbled and touched to the point of tears for all your prayers and generosity. We are truly blessed to have you all in our lives!!

Happy 4th and be safe everyone. Please watch out with those fireworks and those hot hot sparklers with the little ones. They stay hot for a while. Have a bucket of water nearby to put them in when they go out. And remember to clean up your firework mess! I’m sure your South Walton Fire Department can offer advice on firework safety. Stay awesome y’all! Be blessed! Hugs! Xoxo

Tuesday June 26 2012 Update

Danny had to have a larger hole stretched into place today where the existing tracheostomy is. They need to make it larger because he has to go on a ventilator tonight, his lungs are not clearing and the chest X-ray looked worse. So the doctor wants to hook him up to a ventilator and turn him from left side to center and pound his back to try and break up the thickened mucous plugs that are too thick to suction out. They will also put sodium bicarbonate down in his lungs to loosen up the mucous. Please pray all this works tomorrow and the chest X-ray in the morning is cleared and much better. If it is the tracheostomy is pulled out and he’s done with it. If his X-ray shows the lungs didn’t improve then he has to go on the vent and repeat this every night till Tuesday. The larger tracheostomy is causing him to choke and cough a lot. And it was a very painful procedure and still is painful. But in spite of that Danny still remains positive. Please pray for healed lungs and good news for the tracheostomy to come out tomorrow!!!

Sunday June 24 2012 Update

Danny is finally feeling better! The new meds they put him on finally kicked in. He has no pain and he is ready to hit the gym. I found out they took him of his Welbutrin which is needed for his depression. Usually you should ween off those meds but they just took him of. Which explains the sadness and depression he was getting. So they added that back in and his spirits are positive again! Yet! How bowels have stopped again! Ugh!but things are looking better for the most part. I’m very happy to hear this report from Danny’s mom as I’m in Florida this weekend. So that makes me feels better about being here now that he is feeling better. Even if I’m in the midst of a tropical storm here in Florida! HA! I had no idea there was even one brewing. That’s how out of touch I am. Batten down the hatches Florida and be safe.

Tuesday June 19 2012 Update

Turns out that Danny’s intestines are full. The X-ray showed that. He has been on laxatives since yesterday afternoon and has gone a lot. However he had another x-ray this morning and still showed full bowels. They did an ultrasound this morning and we are waiting to see if the results showed any gall stones. Danny is now on an I.V. drip for dehydration. It’s so sad that he has been in bed since Friday. Today his pain seems better now that his bowels have emptied nearly 7 cups!!! Can you believe there is more? We always knew Danny was full of it but honestly! Yesterday just gently touching his stomach there was pain but today it seems slightly better. I just hate that this is a set back for therapy. He was doing so well. God has a plan in all of this even thigh it is not clear yet. Today I read all the sweet and funny cards that two 3rd grade classes made him. Ethan’s best friend Jackson thought if his class could make cards it would lift Danny’s spirits. What a sweet child. His class and Ethan’s class made cards for Danny before the school year was up. I have been waiting for the right time to read them to Danny. this was a perfect time. They were so entertaining and sweet ad funny. Danny really enjoyed them and even was able to laugh and was surprised at some of the intelligent and thoughtful words that some kids wrote. The creativity was fun to see as well. So kudos to Jackson, what a great idea! Please pray Danny’s body heals and he feels strong enough to fight again!

Monday June 18 2012 Update

Danny’s doctor came in this morning to see Danny. We told him of the pains Danny has been having in the abdomen and now up in his chest. Even sensitive to the touch and his muscle spasms are 100 times worse whenever he is touched and he is also very weak. So they are ordering an ultrasound and blood-work to rule out gall stones/ pancreatitis. Kidney and gall stones are common in people with spinal cord injuries because it slows digestion causing a backup of “sludge” in the gall bladder which can form stones. I pray this is not going to be an issue with Danny. It can also be something as simple as gastrointestinal upset and or his bladder infection. He is also have pain in his throat when he swallow from the trach. They will order a Nystatin swish and swallow to calm the irritation down. So pray all the test go well today and Danny starts to feel better and is willing to let the therapist help him.

Sunday June 17 2012 Update

Happy Father’s Day!!

Hey all! Sorry for the lag in updates. I have been so busy with Summer and if not with her Danny. Sometimes I go to therapy with him to learn more about his progress. He still has separation issues with me. His culture of his secretions from the lungs showed active Psuedomonus infection again. So again he is on isolation. Which only means anyone who is employed by the hospital has to wear gloves and a gown when in contact with him. The culture on his urine also came back positive for bacteria so he has a UTI now as well. He is on Bactrim( a sulfa antibiotic) his last day is Tuesday which will be a total of one week. After he was on it for one day his urine all ready looked better. However he feels terrible from the antibiotic. It’s really messing with his system. He has been in bed most of yesterday and today. His stomach is killing him and at the same time he is having hot lava fire pain in his right shoulder again with muscle spasms. It’s completely awful when he has the pain. It brings him to sobbing tears. This week he also had his first episode of autonomic dysreflexia. In our class they said he most likely wouldn’t get it till maybe six months after he leaves here. Chances are he won’t even get it here. WELL!!! Why should Danny play by the odds/rules?? He told me he was feeling really bad and something was wrong. Oh let me back up and explain dysreflexia.

Dysreflexia is a serious condition. It is a reaction of the body caused by nerve signals trying to get to the brain. A spinal cord injury blocks the signals trying to get to the brain. When Danny’s bladder, bowels or skin are in trouble, they send signals to the spinal cord and a reflex begins. This reflex causes the blood vessels below the injury level to tighten. This makes it harder for the blood to pump through the blood vessels and causes the blood pressure to rise. The brain tries to send a message to the blood vessels to open up. These messages cannot get past the spinal cord injury. Therefore your blood pressure keeps rising which can lead to stroke, heart attack or death. Some of the causes are bladder/ bowel when they get too full, pressure on your skin,pressure sores, ingrown toenails, bladder infections. The signs are a severe pounding headache, (which is what Danny got first), that gets worse, high blood pressure, (which Danny also got),red blotches above the level of injury,sweating above the level of injury,goosebumps above the level of injury, stuffy nose.

Sooo, his blood pressure went from 149/96 to 178/105 in a matter of about 15 min. His nurse loosened any tight clothing, took off his socks and shoes,then we rushed him down to the rehab gym and put him on the mat to roll him over and check his back for any impressions in the skin from clothing and then sat him straight up. He did just have a newly diagnosed bladder infection. So it was a possibility he was having pain from that that he wasn’t able to feel. His nurse gave him two pain pills and a medication to lower his blood pressure. Only then did he start to stabilize. Then I needed something for my pounding headache and raised blood pressure. I’m so glad I didn’t have to go through that at home. It was so stressful!! He will always get the same signs so I guess I better get a blood pressure machine!
We went on another outing with his OT and PT across the street to a restaurant for lunch to practice on his eating skills with 4 other patients. It’s an adventure out there on the streets! I don’t think I posted the video on Facebook yet of mine and Danny’s first outing by ourselves on foot/ Danny wheels, to CVS through the underground tunnel. It’s a good one. That day Danny’s PT told us things to be prepared for on our outings. Things we should bring with us and watch out for on the curbs and sidewalks. She also told us to pay attention and to not be talking on the phone or be distracted. Danny is still new to driving so i walk beside him and hold a red stop button in case he makes a wrong turn. It was so scary out there on the streets by ourselves. It felt so good to be back at Shepherds.

Happy Fathers day to all! And Happy fathers day to Danny! Best daddy!

Monday June 11 2012 Update

Danny’s Birthday Weekend!

We had a great birthday weekend. Danny had lots of great friends come to surprise him. He also had lots of birthday cards and presents sent to him as well. Thanks you all for your thoughtfulness. He loves reading the cards and also knowing that so many out there are thinking of him.
Good news and bad news today. The good news is that Danny got his collar off! His neck has healed and he is not the bobble head he thought he was you going to be! He is enjoying the freedoms from the restrain of the collar an has been doing well all day. His sweet nurse Renee shaved his mullet off and he is all cleaned up.
The bad news is that this weekend he had some changes in his secretions and they took a culture on Saturday. Unfortunate the culture came back Pseudomonas again, which is the bacteria he had before and possibly never really got rid of. they also checked his blood to see what his white blood cell count is. That gives the doctors an idea how the body is fighting an infection. The white blood cell count was food. So that means they are not going to give antibiotics and try and let the body fight it on its own. The risk of antibiotics to his system is not worth it right now. So that means the trach stays in longer. Oh well. At least we got rid of something this week.
We are now waiting on urinalysis and culture because of the color and sediment of his urine the last few days.
Danny and I went to the van show today in the parking garage with his parents. We learned a lot about options we like and lifts and positioning in the van. We also saw a can that can be equipped for him to drive. They suggest that he wait a year from his injury to build up strength. The driving assistive technology cost about $40,000. The more strength and movement he gets, the less it will be. When Danny is ready to drive we can come back to Shepherds and they teach him and help him to pass the driving test with the special adaptive equipment. They then write him a prescription for the special driving equipment. That is something very exciting to look forward to.
Danny ad I messed around with his voice dictation program again today trying to perfect our skills. But it’s still technology and presets some challenges. Shortly though Danny will be emailing and making his own posts on Facebook, I he can ever stay awake long enough! LOL! The new medication he is on for the painful muscle spasms in his back have been amazingly helpful and he has had no pain. However it does make him sleepy for about a week or so till his body gets use to it.
We have decided to not build a house with his parents. We are choosing to remodel the house we own but have to wait till our tenant finds another suitable house to rent that will allow two dogs. I would like to still start to arrange a building committee to get a head start on things like who does what, where are the materials coming from and so many other things that I cannot imagine. So please let me know specifically if you want to help. Thanks for your continued prayers. Please pray for Danny’s lungs to heal and also for his bladder issues to heal. Love to all! God continues to bless us daily. I’m going to add some more pictures to this website.

Wednesday June 6 2012 Update

Danny’s Birthday is this Sunday!!

I know this is short notice but it just hit me. There is not much Danny can enjoy but fellowship with friends and family. I would like to see if as many of his friends and family can come visit him on that weekend. I know it’s short notice but just maybe we can make this happen. Fingers crossed. Maybe a surprise party for him to give him some hope and strength to fight more to get better.

Danny’s First Road Trip Video