Wednesday, March 24, 2010

Family Portraits

Our niece came to visit over spring break. She is a professional photographer, and agreed to take our family portraits. She also took our daughter, Steffany's cap and gown pictures and much more. Take a look at these... which are just a few of the many, many GREAT portraits we got:

Monday, March 8, 2010

Mom & Josh sick, Deer Heads Arrive and Decision about School

I have been meaning to update my blog for SO LONG... and I just never get the chance to do it. So, I have decided I am going to get it done TODAY! So, this one will be long... but I'll try to include lots of pictures to help break it up... so here goes....


I had to go to the dentist Tuesday, February 16th. I didn't think it would conflict with work since the appointment was 9 in the morning and I didn't have to go in until Noon. But I was wrong. My mouth was so numb and I felt so miserable that I really didn't feel like I could make it through work. I really needed a nap. Then, Josh's nurse called to inform me he wasn't doing too well. She asked me to bring some medicine to him and I asked her to call Josh's doctor. We finally got ahold of the doctor who wanted me to bring Josh in to have a chest xray and a sputum culture as well as bloodwork (Josh's least favorite thing). Luckily, I got a chance to eat and take a nap before we had to leave for the tests.

Here is a picture of me feeling miserable after getting home from the dentist's office.

Here is Josh at "Kids Express" where he went for the xray, culture and bloodwork:


I had been coughing a few days and even hacked up some yucky crud. But I hadn't run any fever, so I wasn't too worried about it. I promised myself if I ran any fever at all or showed any other signs that could be flu, I would go to the doctor. Well, that finally happened Wednesday night, February 17th.

I had come home from work and Josh was asleep on the couch. He was still recovering from his bout with double pneumonia and trying to get back into the swing of things at school. So, James and I left Josh with his nurse and we went to get a quick bite to eat before James had to race off to work. I didn't feel well while we were out. My chest was really feeling rattly. My muscles were a bit sore. And when I got back, I decided to take my temp. I usually run low - in the 97s. My temp was 99.2. I knew that was the beginning of fever for me.

With a little encouragement from Josh's nurse Jenny, I decided to head over to the Texas Med Clinic to get myself checked out. I wanted to make sure if I had developed flu and/or pneumonia, I would get the proper medicine/care ASAP and nip it in the bud. I also didn't want to infect my sweet little grandson or any of the kids at my daycare.

My temp by the time they took it at the clinic had risen to 99.7. The doctor heard a rattling in my chest and ordered a chest xray. My blood pressure was a little elevated and my heart rate was a bit higher than my normal - but nothing too bad. After reviewing the tests (flu test and chest xray), the doctor decided I did not have the flu or pneumonia but rather a bad case of bronchitis. He prescribed an antibiotic and a cough syrup and sent me home and ordered that I get some rest.

When I got home, I took my temp again, and it was 99.9. I took some ibuprofin which broke my fever before long. I have not run any fever since that night. And I've tried to get extra rest.

I've had good days and not-so-good days since, but I think overall I'm still sick... and now it has been about three weeks later. And now, I think I've got a UTI (urinary tract infection) to go along with my bronchitis - yay!

So, I have a doctor's appointment for myself Wednesday morning, March 10th. Hopefully that will fix me :)

Josh was supposed to have a new nurse - a guy nurse - about the time he went into the hospital for double pneumonia and the swine flu (back in mid to late January). Well, while we were in the hospital, we found out the new nurse didn't pan out (not exactly sure why not, but we were disappointed anyway... Josh has wanted a guy nurse for a really long time - if he's got to have a nurse, he wanted one that was a guy).

Well, I am happy to report that Josh finally got his wish. Nurse Miguel started on with Josh Friday, February 19th. He seems like a very nice man and gets along well with Josh. Miguel is still learning new things about Josh every shift he works. Some of the main things I think surprised Miguel most are that Josh can have major mood issues and is very OCD (obsessive compulsive disorder). But Miguel is taking Josh in stride. So far both seem fairly happy with the setup. And our other nurses seem pretty happy with him - so that is a relief! My goal is to have all our nurses happy and working together to care for Josh in harmony :)

Josh was really getting scraggily looking and had been bugging me for over a week to get his hair cut, so we finally went and did it Sunday afternoon, February 21st. We actually managed to get the oil changed in the van, do a little grocery shopping and get the haircut for Josh - all in one stop at Walmart - in around an hour! We made it home in time to get changed and head for church to attend AWANA with Josh's new guy nurse.

Here is Josh getting his hair cut:

I keep in touch with and keep track of several families of kids with ROHHAD (Rapid-onset Obesity with Hypothalamic dysfunction, Hypoventilation and Autonomic Dysregulation) like Josh has. There are two new families since Josh was hospitalized that I have had contact with. I will not use their names here (in case they'd rather not have me share them with the world) but one is a little girl who suffered respiratory failure on my birthday. I spoke to her parents while Josh was in the hospital. They chose to go ahead and get her a trach. She is back home and doing well. The other is a little boy who is also autistic. His mom is trying to get him in to a specialist. She is seriously considering a trach for him. And she is working on getting him nursing care in their home - which will sure help this mom out.

There are not many days that go by that I don't check in to see how all these kids I know about who have ROHHAD are doing. Josh and I pray for them nearly every night. There are some of the kids who are undergoing treatments as sort of an experiment to see if they will stop the progression of ROHHAD and undo some of the damage already done to them. The parents are very hopeful and at times report some positive changes - but still no cure. And, there have been some setbacks associated with the treatments. And I worry about these sweet little souls going through so much.

On February 27th, Josh and dad James participated in our church's AWANA Grand Prix races. I had kept our grandson, Logan overnight, so he was with us for this very exciting event. Here are some pictures from that day:

James' car

my sister sitting with Logan

Josh happy to be at the races

Josh's car

special guest Emcee... Jerry Thomas (back from Mississippi)

Josh helping Logan with his pacifier

me holding Logan

Tuesday, March 2nd... we went to see Josh's lung doctor, Dr. Smith. Nurse Miguel came and went with us. It was a regular clinic visit/follow up from the hospital visit and even turned into a sick visit, because Josh has been having very runny but stuffy nose and running a bit of a fever. Josh has also had major mood issues and low oxygen high CO2 even on vent or pacers.

Dr. Smith ordered some blood work (which could not be done - his arms were so cold and his veins too clamped down and/or rolled) and prescribed some new meds - antibiotic amoxycillin for a suspected upper respiratory infection, and for suspected allergies zyrtec and a nasal spray. Josh was super duper sweatty this day and was very much NOT-happy with the attempts to draw his blood. It was a really long and stressful day. Dr. appointment at 8AM. We didn't get home until after 4PM. And we weren't able to get all his prescriptions filled until nearly 8PM.

But one good thing that came from this very long day March 2nd is we FINALLY got the deer mounts. The taxidermist lady from Del Rio brought them all the way to us in San Antonio. She even met us at the hospital where we were for Josh's doctor's appointment! Her husband loaded them into our van for us. It looked like we were driving around with two deer looking out our van's back window! When we got the deer heads home, James brought them in and later found new homes for them on the living room wall. Check out the pictures:

Carmen Cantu, the taxidermist, really did a spectacular job with the deer mounts. I sure would not want to have to try to do this kind of work - but she is GREAT at it!

Josh is still not fully recovered from his illness - even after almost a week on antibiotics. His heart rate has been extra high for several days. It's been as high as 140's while he's just sitting on his bed.

He spent one day last week home from school where he slept until almost 1:45 in the afternoon. The next day, we tried sending him to school. When he came home, he fell asleep around 4PM and didn't wake up the rest of the day. We had to force him to wake up to eat dinner at like 10:40PM, so he could take his night meds. Then, he went up and to bed around 11:30 and slept the rest of the night. When he woke the next morning, he said he felt miserable and didn't think he could make it to school. So, I decided not to push him further.

So, he missed all of last week of school except for the one day. He made it today (Monday), but his heart rate has still been high. I'm hoping this resolves soon. He was given 21 days worth of antibiotics this go around. But so far, I don't see them working.

NEW DME (Durable Medical Equipment) SUPPLIER
Oh, we have decided to make a change in the company that provides Josh's ventilators, etc. For a while now, we have had Gentiva. And they were doing just fine. But they were recently bought out. When this happened, Josh was in the hospital and his doctors were afraid he would be dropped from their service. So, we thought about changing to another company known as The Wave. But back at home, the company that bought out Gentiva called and promised they would still take care of us with no problems. So, we held off.

Meanwhile, Josh's doctor wanted him to get a new kind of ventilator and some equipment for him to take breathing treatments. This company was supposed to see about ordering them for Josh but did not bring them. And when I called to find out why, all I got was voicemail and my message was never returned.

So, when we were at Dr. Smith's office for the March 2nd appointment, we saw the owner of The Wave and discussed everything with Dr. Smith. We signed papers to change to The Wave right then. So, we are expecting to have to change out equipment, etc. once again any day now. But we hope to finally see a new ventilator for Josh - The Trilogy. Once that happens, we'll give everyone a better look at it and tell you how Josh likes it.

And after a great deal of thought and prayer and discussion with nurses, etc. I finally, Thursday, March 4th, made a decision regarding returning to school.

I never did finish my degree way back in the 90's. I dropped out after I was already working in TV news - which is what I thought I'd be doing the rest of my life. But after I feel I was led out of that line of work a few years ago, I've been trying to figure out what God meant for me to do - write a book or go back to school - and if so, to do what exactly.

Many times, I thought perhaps I would go back to school. But I had always opted out of it because we were still in debt and I didn't want to pile on more. I was worried I would not be able to commit to a job the way I feel compelled to do because of my need to be with Josh when he has medical problems - like when he recently ended up in the hospital for almost two weeks with the Swine Flu and double pneumonia. So, I thought it would be next to impossible for me to get and/or keep a good paying job. And I couldn't imagine having to pay back a school loan while not being able to earn a good paycheck. So, I always dismissed that notion.

But I finally decided to throw caution to the wind.... or to take a step out on faith... as I learned to do when I accepted that job with the Permian Basin Rehab Center back when I left my job in TV news after 9 years. I really feel God is teaching me things that He intends me to use somewhere besides just here with Josh. So, I decided if He is leading, He will provide. So, I have applied to a local college to take classes for a degree in respiratory therapy. I have also applied for financial aid. I still need to talk to a counselor and take whatever tests for placement to get started. I expect to take whatever pre requisite classes I need over the summer and to start the program in earnest in the fall.

Please pray for me as I take this GIANT LEAP of faith that we don't build up a great big pile of debt, that I can do well in school after all these years, that I will have the energy to keep up all that I am doing and that I am on the path God has for me.

Discovery Documentary - Life or Death : Battling to Breathe