Wow, it has been a long time since I posted!  Mikie is doing great!

We still have not changed out his feeding tube.  The doc was supposed to call us back a few weeks ago with an appointment at the GI lab at Richland but I think he forgot us.  The old one developed a little split but we cut about a half inch of tubing off and it works fine.  It it ain't broke, don't fix it, I think that is what the doc said.

Mikie still has not been able to go back to Hope Bridge as he still gets easily agitated in his wheel chair.  Sometimes we can put him in it and he will sit for several hours with no problems. Other times he acts like he ready to get out after being in it for just a few minutes.  So we keep him at home, and we take him next door to Rich and Nora's (and Richelle's) house on Saturdays and Sundays while we go to the flea market.

Following are some details that I put here just so I have a written record in case of an emergency. I was telling someone earlier that one reason Lorraine doesn’t ride the motorcycle with me is because I think it is risky for both of us to be on the bike at the same time.  If we both were to be killed or seriously injured it might be difficult for someone to step in and care for Mikie.  Well, that holds true for more than the motorcycle, so here are his current doses of medicine.

Morning (7 AM)

1 mg  tablet      Clonazepan

10 cc liquid       Carbamazepine

Midday (3 PM)

1 mg  tablet      Clonazepan

10 cc liquid       Carbamazepine

Evening (11 PM)

1.5 mg  tablet   Clonazepan

15 cc liquid       Carbamazepine

1.5 tablets         Warfarin

2 cans of formula, twice a day for a total of 4 cans.  Pump speed of 60-80 ml per hour, dose of 450 ml.  Flush tube often with water with a syringe.  Extra water is run though feeding tube lines and the end of each does.  Before each dose of food a syringe should be used to check for residuals by connecting a large syringe to the feeding tube and drawing book (or attempting to).  If a lot of food easily comes back than either wait a while longer or start the food at a slower rate.  If Mikie gurgles then it could be a sign that he is full or possibly over hydrated.

(I say this because sometimes we forget that it can happen, as it did today while he was at Rich and Nora’s house.)

I know, it has been a while!  I think I have said this before, when I don't post things are going well.  Mikie is doing just great.  He still has a bit of draining from the incision site on his left hip, but the doc isn't too concerned about it.  We haven't been able to send him back to Hope Bridge day care, but we do get him out now and then.  Monday we went to the zoo!  He wasn't real excited about it, but even though he doesn't see he does like the sounds of crowds. 

One of Lorraine's friends painted this great picture of Mikie from one of his photos.  We think it is very special!

Mikie is just doing fantastic!  While there is still a fair amount of drainage, mostly clear, of fluids from his left leg, the incision on the right leg is drying up quite well.  A few more days and we will probably start leaving it uncovered.  Mikie spent the whole day at Rich and Nora’s house next door while we were out at the flea market running the booth.  We got home around 5:30 PM and got him back home and decided to leave him up in his chair for a while.  He stayed up until well after 10 PM and did quite well, though he seemed very content to get out.  We can tell that the pain from moving him around is less and less every day.  I’m going to take a couple of pix of his legs tomorrow just to show you how much better they look.

Here's a picture I shot while he was sitting up this evening.

I'm posting these pictures hoping the doc can look at them.  I'll probably pull them in a day or two. 

Here's a picture of Mikie's incision on his left leg.  This was taken around 8 PM and the bandage had been on 24 hours.  Mikie had gotten into this the night before and I had to use the butterfly bandages to close it back up.  It's really draining very little but looks worse because the bandage was just placed after he had opened it back up.

{pic deleted on 11-18-2006}

And here's a picture of his right leg.  This one is quite swollen and draining quite a bit, but not as much as it was a day ago.  It was changed this morning so it was not in place as long as the one on the other leg. I actually used a sanitary napkin this time so even though it doesn't look like much has drained in the bandage there is more there than it appears. I wonder if the pad was actually too tight not allowing it to drain freely.  I replaced it with a smaller piece covering only the area that was draining.  We'll check in Monday morning.

{pic deleted on 11-18-2006}

These next two are pictures of his chest and lleft leg and the rash he has had since early Saturday morning.

{pic deleted on 11-18-2006}

...and his right leg.

{pic deleted on 11-18-2006}

Thinking a bit more about the rash that Mikie has I am reminded that the incision on Mikie’s right leg is really draining a lot, enough to soak two folded four by four drain sponges twice a day.  This morning I put a sanitary napkin on it and will check it this evening.  The drainage this morning looked pretty clear and didn’t smell like it was infected.  I think the blotchiness might be related to what is going on in his leg and my bet is that the doctor might want to order an antibiotic, just to be safe.

Our problem right now is getting him to the doctor tomorrow, if that does indeed become necessary.  I have used all my allowed ‘family’ sick leave for the year and have limited annual leave left.  Mondays at the post office are tough days and I won’t get done until after 4 or so.  Lorraine is going to call tomorrow to see if we can arrange transportation for her though the Dart bus service.  A van sure would be nice but we need another vehicle to insure and maintain like we need a hole in the head.  (Hey, that’s weird, because once that was exactly what Mikie needed – a hole in the head, not a car!)

This is a neat tool, though the only thing it tells me about Mikie is that what he has is probably not on this list or it is very early in the list, probably a reaction to something.  We don’t think it is a reaction to the Tylenol with Codeine as he has had it so many times before.  I’m suspecting that it might be the diet coke I gave him the other night to clean out his feeding tube.  Mikie has never had an artificial sweetener.   Whatever, he is not itchy and the blotches are no worse.  The Benadryl seems to help so we will keep up with that.  Meningitis popped in my mind yesterday when I first saw the rash and it is not even on this list but I think it is safe to rule it out because he doesn’t have other symptoms of a shunt failure or infection.  I think if things were wrong there we would see him very sick and having more seizures.  He did have a few seizures yesterday but I think it was only because he was a bit overdue on his seizure meds.  We haven’t seen any seizures today and he has been resting most of the day, probably with help from the Benadryl.

Anyway, check out this link, it might be helpful next time you see a rash.

http://familydoctor.org/545.xml

It has been a while since I have updated the blog, and for mostly good reasons!  Mikie did have his surgery, and all went well. I did try to update the blog from the hospital but there were problems with justblogme.com.  And besides that, our stay in the hospital was so brief, only one day.  So, here’s the story or Mikie’s latest ordeal.

My last post indicated we might do surgery in late October and things went just about as planned, but some things did change.  On the Monday before the surgery when we went to the hospital to place the pic line we hit a few snags.  Evidently the people who were going to place the pic line saw Mikie’s previous records about the impossibility of doing so.  (Remember, that is the main reason Mikie was sent home last time, there was no more that they could do because of Mikie’s vein health.)  Dr. Locke came and met with us in the waiting room and we discussed our options.  We had an appointment to meet with a new medical doctor for Mikie, one with hospital privileges, that morning and we decided to go there and let him assist us in finding our if Mikie was really able to go through surgery. There was concern that Mikie was on a blood thinner and that he might have to come off that for a week prior to surgery.  Some blood tests were ordered and also a cat scan of his hips.  We were off to see our new doc, Dr. Daniels of Family Practice, a fairly new doctor’s office close to the hospital.  We met Dr. Daniels and he met Mikie.  We were able to take care of the blood work right there and we got the results soon after we got home. Dr. Daniels and Dr. Locke got together and we all decided to go ahead with the surgery.  We told Dr. Locke we were ok with proceeding with the surgery on the hip itself rather than just soft tissue surgery. The pic line would be placed prior to the surgery.

Tuesday morning we arrived and the hospital and proceeded to parts of the hospital we had not seen before.  We figured it out as we went.  We had often come into the hospital via the emergency room, not normal admitting.  We also were being treated as a pediatric patient, so we saw different areas because of that.  And the hospital had made some changes due to the new heart center facilities opening next door, giving up space they used to use for heart patients.  There were some delays and snags that probably only Dr. Locke can explain, but after getting a pic line placed we were bumped back to around 11:30 AM for the surgery. From what we heard the pic line placement went very well and since it did not need to be placed in the groin but was placed in the arm, Dr. Locke said we should do the hip surgery on both hips.  He showed us the CT-Scan where both hips were dislocated and that the sockets had either not fully formed or degenerated over the years. It explained much of Mikie’s recent discomfort.

The surgery went well.  It is called a bilateral Girdlestone surgery.  It has nothing to do with girdles or stones, I think it was the name of the ortho-doc that came up with it. Basically the femoral head of the thigh bone and layering the muscle tissue back over it.  Since this takes the tension of the tendons there was no need to do the soft tissue surgery.  After one week the doc say him and said he is doing well and he removed the stitches. He noticed one hip is swollen.

We were told recovery will probably be at three or more weeks, we are almost finished at week two and Mikie is still very tender.  The incision on one hip was healing nicely until Mikie got into it with his little fingers yesterday.  We were able to close it back up with some butterfly bandages.  It looks fine now.  The other hip is still quite swollen and has taken to draining enough that we have to change the bandage several times a day.  The tape strips seem to be holding it closed quite well except in one little spot and I have not attempted to close it with a butterfly bandage but left open to allow drainage.

As of yesterday we noticed Mikie is blotchy and rather agitated.  We stopped giving him the Tylenol with codeine and gave him some Benadryl this morning. He is sitting in his chair and after just checking him it looks like the blotches are fading.  He is groggy from the Benadryl and morning seizure meds but still not as restful as I’d like to see him. I’m going to lay him down now and will try to write more later, maybe this evening.

I know it has been a long time since I posted anything, but it is for good reason.  Mikie has just been doing so well!  His health has really improved since his last brush with death.

But, he still has some problems.  His legs have become stiffer than they every have before.  It has gotten harder and harder to change him and make him comfortable in his chair.  We saw Dr. Locke, an orthopedic doctor, and he has recommended that we let him do surgery on Mikie soon.  We told him about the vein access problems he had in the past so he said Mikie would go in the hospital a day early to insure they could get access before the surgery.  Since Mikie has been back on a steady diet of formula and he has been very active I feel that his vein health has probably improved.  Doc says he would do the surgery in stages, and that he would try to get Mikie some relief by cutting the tendons in his legs first.  He calls this soft surgery.  But the x-ray showed that Mikie's left hip is displaced severely and that the best thing to do with it is remove the hip bone from the joint down about 6" or so.  If the soft surgery works Mikie could be home in a day or two.  The bone surgery is much more extensive and his hospital stay would be longer, probably a week.

Anyway, we're looking at late October or early November, or maybe not at all.  We think the wise thing to do right now is find a doctor that will oversee Mikie's general health.  Dr. Young is great but he doesn't have hospital privileges.  What we need to decide is if we want to put Mikie through another hospital stay or do our best to live with things the way they are.  He is quite comfortable in his bed, but he really needs to get up and out once in a while.

I'll try to do a better job about posting updates!

I shot this video some time ago with my cell phone.  The clicking noise is Mikie pushing up on the rail and the bands pulling it back in the slot.  He's working out!

Here's the link to the video.  You'll need the latest version of Real Player.

http://www.mikesmagicshop.com/private_pix/07-03-06_1815.3g2

I’m really neglecting the blog lately, same on me!  Mikie is just doing so well.  We have not even used the pulse-ox monitor in weeks.  Mike plays, he rests, he handles his food via the tube very well, he goes to day care, he just is doing as well as he has in years.  But I do have something that I need to note and you might find interesting.  As Mikie has healed since the surgery and his brush with death we have noticed something that I don’t think I have ever heard of and I think I have an explanation.  We noticed after Mikie started to heal that he was loosing a layer of skin on his hands.  We wondered if during his worst times if because of low oxygen if parts of Mikie’s body had begun to die, like his skin, especially on the extremities like his hands, where there would be low circulation.  Now we have notice that Mikie’s fingernails show signs of new growth pushing out old or dead nails.  It’s almost like the rings on a tree telling of good or bad seasons.  It’s not bothering him, it’s just interesting.

Been a while, but just to let everyone know, all is well.  Mikie has had a few seizures lately, so they haven't gone away completely, as we hoped.  But they don't seem to be slowing him down.  He is quite alert and getting all the food he needs by tube.  I've got to get busy and post a video of him doing his weight lifting with his bed rail.

Lorraine has graduated from using the walker to using her cane.  The PT had her take Mikie's wheel chair back and forth to the road without Mikie in it and in a few days she should be able to push Mikie around if need be.  I think she is wondering why she didnt have this done sooner.

Mikie had an appointment with Dr. Fann yesterday.  He’s the surgeon who patched him up.  Mikie’s incision has healed well enough we no longer keep a bandage on it.  The doc was pretty pleased and said we don’t need to see him unless something else comes up.  Mikie really is doing well, hence the lack of updates to the blog.  And as I typed that his heart pulse-ox monitor went off alerting us that his oxygen level had dropped down to 73%!  Occasionally we get that, he gets so relaxed his breathing slows and things drop.  It always comes back up in a minute or two, probably much less. 

I don’t think I mentioned it yet, but mom is home.  Lorraine is improving every day, both getting around better and with less pain.  She went to her doc today and got the staples out.  She’s not ready to run any marathons yet.

Lots of people have been good to us and brought us lots of delicious food and we thank you all and especially for those of you that have been praying for us.  We really couldn’t ask for things to be any better.

Mikie didn’t want to let me sleep last night.  He pushed the rail off twice, so I guess we will have to go to stronger rubber bands.  It’s like adding weights to his exercise machine.  You should see his right arm, man he has a huge bicep compared to his left arm!  He’s a strange kid, for the last three days it seemed all he wanted to do was sleep.  I took him to the flea market with me Saturday and he slept the whole time until we left, around 1 PM.  I got him home and started him on some food and water thinking he might wake up, and he did.  He was happily playing and then it all came up, all that I have given him plus what he got the night before.  He was alright, but continued to sleep and then wake, and then sleep some more.  He started to get sick again but I opened his G-tube and a good bit of air came out, then he was fine. 

Mikie is going to Hope Bridge every day this week except the fourth, so today I am going to try to get up to see Lorraine before they do the therapy so I can see what they are doing.  I think she is going to go ahead and come home, HealthSouth is not what we expected.  They told us she would get therapy twice a day, an hour and a half at a time.  She got there Friday around 1 or 2, no therapy.  Saturday they did it once, and it was abbreviated.  Sunday they did it once and worked her until she couldn’t take any more.  Come to find out they only do one session on Saturday and Sunday.  I wonder if they only charge half price for those days.  The rest of the time they pretty much leave them alone.

Lorraine has moved to HealthSouth, room 214.  She is supposed to be there 8-12 days but I think she will start talking about coming home sooner than that.  I have a feeling it just isn’t going to be as nice as LMC.  In fact, I’m looking for her to be home by next Friday.  That and I want her to come home!

I finally got my desktop computer running so I could transfer the pictures I took on my cell phone.  Here's a good one of Mikie taken about a month ago.  Mikie is doing so good, its hard to believe that back on May 19th, just a little over a month ago, the docs were saying there just wasn't much more they could do. They talked about DNR codes and how he was having trouble coming off the ventilator and that they couldn't get access to his viens. Right now I would say Mikie is healthier than he was a year ago and his health gets better and better every day.

Lorraine's friend Virginia dropped in to see Lorraine Wednesday and snapped this picture.  Lorraine is doing better every day.  Friday we should be moving her to a rehab center closer to home, real close to the hospital where Mikie stayed.

I'm starting to appreciate all the work that Lorraine did taking care of Mikie at home, it can be time consuming.  I just can't seem to get anything else done!  And I imagined that I would have time to clean and start some remodeling projects. 

...though that is my opinion from just looking at her.  She still complains of some pain but not like she was before the surgery.  I'd say she finally got some relief.  She sat up most of the day in a chair and the fine folks from PT got her up on her feet twice and made her take a few steps.  At this point it looks as if she will be discharged Friday and go to HealthShouth for rehab.  She's stay there 8-12 days and it will put her well on the way to normal use of that hip.

I was able to get a neighbor (thanks Mark) to watch Mikie while I ran back up to visit Lorraine.  She was sleeping but I woke her so I could help her eat some of her supper.  She is really doing well, looking much more comfortable than she did last night at home (or the night before or the night before that).  I didn’t stay long but let her go back to sleep.  She looked good, I really thought the first day would be much harder than this.  God is so good to us.