The Cast

So it has been a few days since my last David blog. Life has been anything but boring, but in Davids case....no news is good news!

Thursday Z and I took David back to Wesley so that they could assess his leg and see if further surgery on the bone was necessary or if they could simply cast it. If you remember, after he broke his right femur....when they got in there they found his bone to be extremely soft and there were questions as to how well it would heal. They put him in a splint for the first 3 weeks just to make sure that the bone was healing properly before they put the actual cast on it.

When we got there Thursday he was taken to pre-op but luckily in light of his recent pain or suspicion that he might be in pain melt downs (he is just so over people messing with him) they decided to hold off on an IV until and unless they knew it would be necessary. Instead they gave him oral versed to relax him and a DVD player loaded with Spongebob as we awaited the doctor. After talking to nurses, anesthesia, residents and finally the doctor, we were well versed in their plan of action and David was ready to head to the OR. The plan? To have him relaxed, take an x-ray of the leg and depending on how the bone looked....proceed from there.

If the bone looked like it was not healing properly, then they would have to go in and redo the screws and reset the leg. In other words, full on surgery again and most likely another hospital stay. However, if  it looked good....they would cast it and we would be on our way. I was pretty hopeful that it would be the latter as I could tell in the last week or so that David was not in any pain with the leg. I was correct. Within 30 minutes, Dr. K was in the waiting room telling us that his leg was doing much better than she had anticipated and that the bone was healing beautifully with bone growing strong around the break. I attribute this to the literal tons of calcium and calcium rich foods that I have inundated his diet with. Yay calcium!

So in the end versed and a little gas were all that was needed to keep him calm and comfortable during the x-ray and casting. He came out with a beautiful blue cast and instructions to bring him back in 3 weeks to have this cast removed. Hopefully THEN we will be able to start down the path towards physical therapy. Thank goodness, as we are going to be playing catch up after being a couple of months behind.

As for Davids hips (his original surgery in December), I think they are doing amazing. He seems to have no pain at all and perhaps the extra time of his legs being in casts and splints has been a positive in the straightness of his lower extremities. No more do I see the bowing of his legs from his hips to his knees. In fact, now it is just an amazingly straight line, although his legs are very thin, but hopefully with the large amounts of calcium mixed with a lot of added protein (yeah we are doing that too), once the PT starts his legs will start too look more human and less bird like!

We have begun spring break and this year it is taking on a very different look than that of spring breaks past. There are many things that we need to accomplish as a family along with a few hurdles that I am hoping after Monday will be in the rear view mirror with only blue skies and David walking in our future. The weather is actually getting warmer, although tomorrow is suppose to be a bit of setback, but other than that....spring may actually be trying to shove its way in through the cold and snow!

So here we stand. David is in a good place right now although bored to death. Hopefully a more regular schedule will resume after the break. Z will soon graduate and with a lot of prayer and a little luck this family will be back on much more even and positive ground.

Our next Dr. K visit should be in 3 weeks and then look out world and PT because David is gonna walk!

My Hospital Code of Ethics

Well we are heading home within the hour. Yay!!! As hospital stays go, this has been shorter and less critical than most, even if you add in our PICU overnight stay. Because of this, there has been more time for free thought and contemplation. I have been thinking back over all of our hospital stays and the pros and cons of each visit. It occurs to me that there should be a code of ethics for both parents and staff that every hospital peds unit should display and adhere to. I decided I would write my own and I will call the staff code....A Code of Respect for Parents with Inpatient Kids. It should be posted at the ER, the entrance to the unit and in the cafeteria and here is what it would say:

We appreciate that parents drop their lives, jobs and sanity..... and remain by their kids side through the entirety of their stay. Because of this,
We.........
will listen to a parent when they say my kid is not acting right, looking right or is in pain. 

will find a way in this high tech world to be able to ask a parent only once the necessary intake questions and enter their answers in a way that they are in the computer and can be easily pulled up wherever else in the hospital the patient goes without having to make the parent answer the same questions over and over again a multitude of times.

will be respectful of the fact that the parent is there to comfort the child and make sure the child is well taken care of...NOT to do a nurses, aides or doctors job because we are too lazy, inept or uneducated to do it ourselves.

will leave our egos at the door and will treat each of our patients and their parents with dignity and respect, remembering that even with our years of education.....when it comes to the their kids, the parents are the experts.

will remember that NO ONE likes hospitals, especially not a child and if a child is scared, tearful or down right combative, it is not personal, nor is their behavior a reason for me to cop an attitude with the parents or the child.

will keep in mind that children as patients.....are not patient waiters and when test results and doctors consults are delayed due to a gab fest behind the front desk, then parents have a right to be a bit indignant.

will remember that having a child in the hospital is both stressful and exhausting. It is easy for a worried parent to go without both food and sleep when their child's health is compromised. Because of this, parents should be given at least two decent meals per day brought to the floor so they don't have to leave their child's side. They should also be given a comfortable place to rest and not a "reclining" chair that can mangle them, crush their pelvis or throw their back out during the night.

And finally.....we will remember that parents are human and an angry parent is usually a scared and stressed parent. They want only the best for their child and will go into fight mode to get it. Listening, respecting and showing a little empathy will go a long way in keeping an already stressful situation from going completely toxic.
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Now don't get me wrong, I have not forgotten that without competent and caring doctors, nurses and other staff my child would not be getting excellent care and the ability to return to a healthy life. Not to mention we could have lost him several times over. Because of this, I think every ER and pediatric room should also post.... A Code of Respect for Hospital Staff From Parents. It should be where every parent can clearly see it and it should go something like this.

                                                              *******************

We parents acknowledge that our child is sick or hurt beyond our capabilities to fix them. That is why we brought them to the hospital. Because of this, 
I......
realize that my child is not the only patient on the floor and likely sharing a nurse with several other patients.

understand that some kids are much more critical than my child and thus could possibly pull a doctor or nurse from my child to help another. In turn my child might be the sick one sometimes pulling resources from other patients and I would hope those parents will be patient and understanding too.

know that both doctors and nurses can be pulled pretty thin during a 12 hour shift and demanding that they put my child first in a non-critical situation will not bode well for anyone.

realize that although I know my child, I am not a medical professional and if I could have handled the situation with only my skill and experience, I would not have had to bring my child to the hospital, therefore I need to listen more and talk less.

need to remember that allergic reactions happen...even if my child has never been allergic before. Because of this, it does nobody any good to yell at staff when our time would be better spent reversing the situation as quickly as possible. Dialogue can commence after the crisis passes.

understand that as a parent staying around the clock with my child, that I am there to both advocate for my child and update the staff on anything that happens when they are out of the room. They are not clairvoyant and again....my child is not their only patient and kindness and cooperation for my child's best hospital experience is key.

And finally.....I will remember that the medical staff are human. Most put in at least 12 hour days, at times are so busy they miss meals and even bathroom breaks, have to deal with screaming kids, unhappy parents and they deal with suffering and even death on a regular basis. Showing them respect for their knowledge and skill, kindness for their service and empathy when they are at the end of a shift and have to stay longer because my child requires extra care and extra charting can almost always keep an already stressful situation from going completely toxic.

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Just so you know...if you are a doctor, nurse, lab tech, x-ray tech or any other hospital/medical staff oh and EMS too....I thank you. In our world, we truly couldn't survive without you.

Looking for the Blessings

Another night at Casa Wesley. It was well after 3 a.m. when I finally relaxed enough to sleep. Up until then I watched the sleet fall and the wind blow it around out our big window that overlooks the parking garage. Again I thought of all my reasons to be grateful. There are so many. Today....warmth and safety from the bitter cold seem to be at the top of that list. Yep, I keep looking for those blessings.

We were moved onto the regular peds unit yesterday morning. Actually we were kind of rushed out as they needed the miniscule space that we occupied for "really" sick kids. Not sure why we were ever there in the first place. Perhaps we needed to be, in order for events to unfold throughout the day as they did. I think a young resident needed to learn that when Dr. S gives an order.....he expects for it to be followed. But I jump ahead!

Back in our old stomping grounds on the regular peds unit, I began to get slightly frustrated that by 10:30 a.m. David still hadn't received his morning seizure meds. This was due to the fact that a resident in PICU had shown true incompetence where David was concerned. I had dozed off about 5:30 a.m. and woke back up about 7. My immediate question was...."Did David get his morning meds?" The nurse said that she was told he wasn't suppose to get them because he was on the IV seizure meds. I could feel my head starting to explode. Really??? I told her that the IV meds were an addition to his home meds and not a replacement for them. She said well the resident said....... , and I said....well Dr. S said.....and he trumps the resident! After going and talking to the resident she came back and got on the computer and started asking me what Davids home meds were and the dosage. As I was telling her she said, well those meds are all listed here! Duh! I had only recited them umpteen times over the night before. Then she said that the resident had said he couldn't find them in the computer so apparently he assumed there weren't any. I found this story suspicious...and by suspicious I mean....a lie, but I told her that we needed to get those meds in David ASAP!

Jump ahead two hours (after I had reminded the PICU nurse every 15 minutes) and we get moved to peds with no meds. The poor peds day nurse was trying to get David in her computer and I was pointing out that his meds were a priority knowing full well that no meds would be coming Davids way until all the red tape paper work was complete. I also knew that Davids lack of meds were not this girls fault, so I did my best to dial down my frustration. By noon, after multiple calls to the pharmacy, our poor little nurse had been able to catch David up on all of his meds but one, and we just had to end up calling it a missed dose. I was not pleased and verging on out and out anger when about an hour later, he threw another seizure. You would think that when a seizure patient is in the hospital for seizures, that getting their meds to them on time would be a huge priority. Apparently it is not.

I have to say at this point, after I calmed down over the unnecessary seizure....that being back on the regular floor was a much better and more comfortable experience for both David and I. Gone were the loud ventilator and cpap machines, as well as the folding beast chair.... and we were in a quiet room with a an actual cot for me. The nurses on peds all know David and you can just tell he is more in his element here than in PICU. We were both able to take about a two hour nap and after the mornings med issues, the afternoon went by without a hitch.

Yesterday evening Dr. S came to see David. For those that know Dr. S, he is a man of small stature and very soft spoken. He is very kind but very matter of fact. I have never seen him any other way in all the 13 years we have gone to him. So I began telling him about the missed meds and the resident "not being able to find the meds in the computer." As I told him about David getting meds late and some not at all, you could see in his face that he was not pleased. He simply said, "This should not be happening!" After talking to me I heard him go out to the nurses. Both the day nurse and the night nurse were there. He then proceeded to ask them what was going on. He was not loud but he definitely was not his regular soft spoken self. He asked for names and told the nurses that this resident had basically lied about not knowing about or not being able to find Davids meds in the computer as Dr. S had talked to him personally and gone over every med he was to have. The poor nurses were feeling the rath of Dr. S and I felt horrible that they were getting the brunt of something they were not responsible for. When all was said and done....I called them both in and apologized that they had to be the fall guys for the residents irresponsibility. I also assured them that I had not blamed them at all for what went on. In fact if not for the day nurse, David would likely have been much further behind on his meds than he was. They understood and fully agreed with Dr. S.

The rest of the evening their seemed to be fall out from Dr. S's displeasure all over the place. He not only lit into the nurses but the resident in charge of the regular peds floor was also put on notice that David better not miss another dose of meds and that if it happened again, there would be problems. It was also rumored that Dr. S called the PICU resident personally to drive home the fact that if a seizure patient needs meds, they need meds and no excuse will be tolerated as to why his orders are not followed out to the tee! It was interesting to see this side of Dr. S. I almost felt sorry for the incompetent resident. Almost! The truth is, I would not care to be his bad side!

Today David is still showing some residual seizure activity in his behaviors. He is a bit loud, wild and doing a lot of teeth grinding. Med regulation is a process. We are also still waiting on ortho to check out his leg. We have been waiting since yesterday morning. Dr. S was not happy about this either nor was the peds resident as ortho had been called numerous times yesterday. When they were called again yesterday evening they said it would likely be today before they could see him as there were a multitude of wrecks due to the weather and they were swamped in the ER. Sigh. I refuse to leave without seeing them though as the back of Davids leg at the top of his cast is not looking particularly pretty and I don't want to have to turn around and come back once we finally get out of here. So we wait!!!

The cold, drury weather along with the hurry up and wait mentality of the hospital are starting to wear on me. However, we currently have great nurses and aids, we are warm, comfortable(for a hospital anyway) and since Dr. S let the world know of his displeasure, Davids meds if not his leg are a staff priority! In the big scheme of things....I have no complaints. This is just another speed bump with a purpose I have yet to understand. At any rate, we are good and yes....we are blessed. Happy Sunday to you all!

And We're Back.....

And we're back! I could be extremely frustrated about all of this, or very grateful that I had last weekend without any hospital runs. I choose the latter.

Towards the beginning of the week, David had a seizure. It was one of his regular mini ones and honestly it came and went without much thought on my part. I mean, I watched for several hours to see if there would be anymore to follow, but I pretty much chalked the seizure up to a break through while we were trying to get his meds re-regulated.

I saw no more seizures until Thursday. Mid afternoon he threw another one. Again, it was a mini seizure lasting no more than 30-40 seconds and as usual, I watched to see if there would be anymore. There wasn't.....until about 5 p.m. yesterday. It made me a little uneasy that he had two seizures in two days, but I still wasn't terribly concerned. Then about an hour later he had another one. I could see a pattern starting so I had the service page Dr. S (Davids neurologist). When I told him what was going on he told me to up one of his meds for the weekend and then to call on Monday to make an appointment to see him in the office. About an hour or so later, David had another seizure. This time when I placed his magnet over his VNS (vagus nerve stimulator) to stop the seizure, David began to cough. He coughed so hard that it made him throw up. Yep, we were on a roll. At that time it was time for his nightly meds so I gave them to him with the upped dosage. By now we were all tired and both David and I were settling down for the night. I had turned the lights off and left the Spongebob lamp lit so that if I heard David I could immediately see his face. Low and behold about and hour into relaxing and almost falling asleep, I heard the familiar sounds that come with a David seizure. Again I jumped up and grabbed the magnet. It stopped it immediately, but once again the coughing to the point of throwing up started. I was really afraid that being so out of it and throwing up, that he might aspirate and we all know that no one wants to go down that road with David again.

When I got David back under control, I knew it was time to chat with Dr. S again. When he called me back I told him what our evening had been like and he asked all the usual questions: Has David been sick? Is David running a temperature? And has David been overly tired or dehydrated? The answer was "NO" to all of them. He then said, that we needed to get to the bottom of this and told me to get EMS to bring him to the ER! By the time we got to the ER, Dr. S had already called ahead telling them to expect David. On the way to the ER....he had another seizure. Within seconds of our arrival, the ER doc was in our room and telling us the course of action. First lab work and then David would be admitted. Along with blood work they also checked for MRSA and RSV. Oh...and David had yet another seizure. I could already tell it was going to be another long night.

David was finally admitted around 1 a.m. to the PICU. I have no idea why they chose to put him in the PICU instead of the regular floor and this time we weren't so fortunate as to get an actual room. This time we are just one of the many on the ward curtained off from each other. There are some really sick kids up here and now David is thrown in amongst them. So much for my "Mom" decision to keep David isolated. You can almost see the germs running a muck! Sadly too, we are getting just as many frequent flyer miles in the PICU now a days as we are on the regular pediatric floor. At least that means we have familiar nurses and doctors.

It is now about 3 a.m. and here is what we know so far: several of Davids regular seizure med levels are low in his body which means Dr. S will have to reassess David and change his meds around. Sigh! His VNS is likely turned up too high and that is why he had the major coughing and throwing up, so the VNS will have to be turned down. They are currently giving him a bolus (large dose by IV) of  a stabilizing seizure med. Tomorrow he will be given a maintenance dose and with any luck, this and a change in his meds should have us back on the right track. Fingers crossed. 

So in the midst of all of this, I decided if we had to be here that I was going to make this place work for their pay and so I asked if they could have the ortho docs come look at Davids cast/splint and maybe change the dressing on it. I also want the wound team to come look at that back of his leg where the splint seems to have rubbed a bit. After all if I have 2 more weeks before they take him in to put the actual cast on his leg, I might as well get some maintenance on the smelly bandages now!

The weather is currently threatening to turn bad with both ice and snow. I was hoping to be home and comfortable if the weather truly did get bad. Instead though....I am watching Davids monitor as his IV continues. I do this for my own peace of mind just to make sure there are no drops in heart rate or blood pressure while the medicine goes in. I find myself wishing that I didn't know so well what each of those monitor numbers means, what range they should be in and when they get out of range.....when I should start to worry. Yes, I would much rather have us home in our beds awaiting the storm.