December 18, 2017

Friday July 13 2012 Update

This is how Danny works on his blood pressure. Tilt table. He is nauseous but is powering through.

Thursday July 12 2012 Update

Danny got into day program on the 27th!!!! His inpatient will be extended till then. We are so happy to hear that news. We went down to day program today and they have treadmills that connect your upper body with support while one person sits at both side and position your feet to walk. They also have Loco-motor mat that is a robotic form that helps you walk. Thanks for your prayers. We are excited!!

Tuesda July 10 2012 Update

So many good things to continue to report. So Danny’s hole from te trach closed up in 4 quick hours. He can’t even blow air through it. He still has a raw area that needs to heal completely but it should be completely healed by next week. He is truly on healthy boy now!!! Because otherwise is no open airway now we were able to get rid of a lot of supplies that were junking up the room and his suction cart! He also has a better controlled heart rate now,it was too low, but controlled with medication. But he doesn’t need The medication anymore. So because of that he was able to loose the telemetry box that is attached always to him with electrodes. His chest was always raw, he’s been wearing them for 3 months! And he had to be shaved so they didn’t pull all that furry chest hair and he always looked like he had an extra belly in all his pics.
Danny is now brushing his teeth on his own too!!

Monday July 9 2012 Update

Tracheotomy Out Today!!

Danny got his tracheotomy out this morning!!!! His doctor said that was his best X-ray yet!!!! Praise God for that answered prayers. He went over to Peidmont on his own to get his cervical X-ray this morning. He felt so bare not having to tote his suction cart with him and to actually have the freedom to be more independent. Huge for Danny. Tomorrow the electrodes come of. Which has been tearing his skin up on his chest.

Our date last night was absolutely wonderful!!!! We had help from a crossing guard as to how to enter the restaurant where the ramp is. Once we got in every one was so accommodating and pleasant to us. It was kind of funny to catch some people staring or trying not to look. But when Danny scoots away from the table and lays his chair back and his feet up in the air to do a weight shift, it tends to draw some attention. LOL!! Every time we go out we feel even more confident. Tonight we go on an outing to the Chinese restaurant. Should be fun as its with a group.
This afternoon we have a goal meeting with Danny’s medical team. Pray for positive outcomes. Danny’s next goal is to get that right arm stronger and moving….and of course to walk!!! Thank you all for celebrating this huge hurdle with us!! Making progress is fun!!! Many blessings!!

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!