No News Is Good News

Surprise....we are still here. David is much better although still holding onto a low grade fever as of yesterday evening. It hasn't appeared this morning so I am holding my breath that maybe it is behind us. We are waiting now for all the residents, doctors and nurses to confer and see where we go from here. There was a murmuring that we might go home today (EMS did you hear that????) but yesterday we were told not to expect to leave anytime before Tuesday or maybe even Wednesday. Oh the joys of the hospital. Things can change with every new resident change. Sigh! So still we wait. For someone who hates to wait.....I am starting to excel in the art. Still...no news is good news!

So today I decided since things are pretty much unchanged in Davidtopia.....we would take a little jaunt over to Lisaland and show From Beginning to End and Back Again some love. Come on over and join us and as always....thanks for reading!

So We Wait....Without Complaint!

So for those of you who are my friends on facebook....you will undoubtedly be aware that yesterday I was not a happy camper. David did not get his seizure meds for about 18 hours and from 12:30 a.m. yesterday until about 11 last night he threw numerous seizures. One even happened while he was in the process of eating. Now the seizures before say 10 a.m. yesterday, I am not sure what the cause was (possibly infection in the body), but every seizure after that was due to the fact that he was missing doses of his meds. I started begging the minute we hit the floor yesterday for them to get and give David his meds as his last dose had been at 9 p.m. the night before. Not until around 3 p.m. did he actually get his meds. By then he was already behind two doses and we were seeing the fallout. I was not happy!

By the time David's neurologist made rounds (about 6 p.m. or so) I was pretty darn livid. Dr. S got an earful and he too was not pleased at the lengthy time David had gone without meds. He decided however that we couldn't undo what had already been done so we needed to move forward and temporarily add a couple of new meds to get the seizures under control. It took them until almost 11p.m. after getting these meds ordered for David to actually receive them. He also threw two more seizures during this time. They knew how angry I was!

Now, so as not appear a complete bitch, let me give you a bit of the back story. We are in the middle of cold and flu season. When we came into the ER early Saturday morning, it was jam packed with people in various forms of illness (most throwing up and/or coughing to the point of throwing up.) They had a handful of nurses, a nurse practitioner and one doctor taking care of, with what at one point I heard, was about 30-40 patients. One nurse told me that all the hospitals were like this and some were even refusing any more ER patients so they were diverting them to the other hospitals. It was craziness and you could literally see the nurses running from patient to patient. They were doing their best to treat and release as there was a whole triage area still waiting to be seen. Thank God we came in by ambulance! The critical got the most attention (as it should be) and although sick....David was not critical!

Once moved to the floor, it really wasn't much better. The peds floor is fairly large with about 30+ rooms. Most rooms were full and again....a handful of nurses and nurse assistants are left to handle all these patients. Apparently theirs had been a crazy night of admits just like the ER had been. This influx of patients and patient orders then trickles down to the pharmacy where they have just a few (about 6-8) pharmacists and techs trying to get out hundreds of scripts for the floors. Because of this.... there was an hours long backup and this was the reason that Davids meds arrived late...or so I was told.

I do understand the hospitals position BUT and this is a huge BUT.....when it is my kid and these meds are crucial......they WILL also understand mine. I know these nurses and even some of the residents cringe when they have to come talk to me and I do always try to be professional and respectful (except when an ER nurse tries to grab something out of my hands....then all bets are off!) I also have learned that some nurses (usually older more experienced ones) know how to bypass certain systems and protocol and get things done. Unfortunately we have a sweet but young nurse who seems a bit hesitant to play it anyway but by the rules and I obviously intimidate the heck out of her as she laughs nervously every time she comes in the room. Grrrrrrr We do have one resident though, who is on her game and she realizes that there is a pattern with the anti-biotics and Davids fevers. I like her and I feel like she knows her stuff. Just wish she had been here yesterday.

Today David is much better and looks better than he has since he has had surgery. Of course we are on round three of anti-biotics and currently have some strong seizure meds on board. However, there is still signs of infection showing in his body. They just can't pin point where. Today ortho is coming in and they are going to do some x-rays and other tests to make sure that there isn't some kind of internal infection setting up. If that proves to be nothing then they are calling in the infectious med doctor to see what he thinks. Hopefully when we finally make it home this time.....we will have gotten to the bottom of all of this and won't be making anymore trips back in. I am also sure the EMS will be grateful of that.

So we wait. The resident was talking as if it might be Tuesday or even Wednesday before we go home....depending on what they find. As crazy as that makes me, it would make me a whole lot more crazy to have to repeat all of this yet again. So yes....we wait.....without complaint!

Please continue to keep David in your thoughts and prayers, and as always.....thank you for reading!

We're Baaaaack!

Well....far be it from David to allow there to be more than one day that I don't blog about him and his adventures. In case you haven't seen facebook.....we're baaaaack! Yep, the Mulvane EMS picked David up about 12ish last night after he threw a seizure.

Yesterday was a strange day and my mom senses were in high gear all day as he woke up pale and sunken eyed with dark circles. He napped off and on but he ate well and played some. I tried to tell myself that I was just being silly and worrying too much....but obviously my mom senses were right on target.

About 11:30 p.m. his temp went on the rise and I quickly dosed him with tylenol. Just as I thought he was asleep and I was about to drift off myself (somewhere around 12) David decided to throw a seizure. It was not a normal mini seizure but it also wasn't a huge febral one either. It was right in the middle of the two and he finished it off by gasping for air and acting as if he couldn't breathe. Even after the EMS arrived, he was still acting as if he was still having issues. They immediately loaded him up and off to the ER we went.

The ER during flu season....now that is where you want to be........said no one ever. That place was hopping and people of all ages were coughing up lungs and throwing up. I immediately slapped a mask on Davids face and closed the curtains all around us. The last thing I need is him getting the flu on top of everything else. To make things even more fun.....he had two more seizures before we ever made it to the floor.

We just arrived on the floor about 45 minutes ago. I think they did all their poking and prodding in the ER so now David is finally sleeping peacefully. Once again he has been through the ringer of lab and x-ray and now we wait for results and I have answered the same questions over and over again and I am so tired I can barely see to type. Hopefully the doctor will be in soon and then I am praying that I can take a nap of my own even if for a little bit.

Once again they are scratching their heads and I am getting irritated. I may not know what is going on, but I do know something is not right with David and this time....we aren't leaving until we get some answers.

I will keep you updated and as always....thanks for reading!

Back to Normal

Dare I say it? Life is beginning to get back to something that one might actually call....normal. At least this is what I think normal might look like.

The difference in this surgery and his last one is my knowledge......I think. When they say knowledge is power....they aren't kidding. I know this time that I really can't hurt him with his cast and all, he seems to have no pain and the biggest thing I have learned.....I am capable of handling this. All of this really does make for a much different experience for all of us.

I might have mentioned that while he was in the hospital, I made the nursing staff step aside several times and let me change David by myself. I had to know that I could do it without an assist simply because I don't always have someone around to assist me. Since being home, I have become quite proficient at the art of changing someone with a spika cast. Moving him from the bed to the wheelchair is a bit more dicey. I prefer to wait for Z for that as the two person transfer is much easier and less dangerous for everyone involved. However....for everything else, I think I'm actually good.

David continues to improve daily and I think now he has hit all out boredom. Even Spongebob doesn't seem to be cutting it anymore. Thank goodness he starts home bound school next week. At least then he will have something more than myself and TV to occupy his time. I gather from his reactions that I am simply just not all that entertaining. Who knew?

Since David is doing so much better, instead of blogging here daily......I will probably start showing my other blogs a little more love again. Trust me though, I will definitely still give updates here as things change and as David moves forward.

As always......thanks for caring and thanks for reading!

A Little Love to the Mulvane EMS

Own house. Check! Own bed. Well sort of check! TV with more than a handful of mismarked channels in which I know exactly where Spongebob is. Check! Check! Check! Yes folks.....we are home!!!!!!!!! It was a glorious feeling to be able to walk freely, eat something other than hospital cuisine and know that no monitors were going to malfunction and scare the bejeezus out of you during the night. It was an amazing day and night in Davidtopia!

Today, David is busy boogying to CMT, the color is finally returning to his face and hands and he seems every bit as happy as I am to be back in familiar surroundings. Changing him and moving him around has not turned out to be as big an issue as I thought it might be. I can do it in a pinch but I think I have it worked out so that I won't have to. Z's school has agreed to allow him to come home this week at noon, too help me change and move him (thank you Mrs. W) and then next week he starts home bound school where I will have someone here to help if needed at least half a day. As I said yesterday.....I think we got this!

Since this crisis seems to be averted, I would now like to share a little love and give a little thanks. I know I have mentioned Mulvane EMS several times in the last few days, but I think now is the time to express just how grateful I am.

The Mulvane EMS and my family go clear back to 2008 (January 21st to be exact)! That was the day David had his first febral (major) seizure and the first time EMS was called to the house to help David. Since that day, they have been here on several runs and always they have been kind, professional and truly a God send. This week though.....they have been beyond amazing.

Friday when we were on our way home from St. Louis, Z and I were almost in a panic realizing that we could have hurt David or ourselves putting him in the van alone. We knew getting him out of the van would likely be as difficult if not more so than putting him in was and with the temperatures plummeting......he couldn't be exposed to the cold any longer than necessary. That is when Z brought up the EMS. We live in a neighborhood where unfortunately.....EMS has made a lot of calls over the years. Several times we knew that they came to help "move" a neighbor who could not move himself so Z figured we could at least call and ask if they could help move David from the car to the house. When we got to Emporia (about an hour and a half out) I decided to call and see if it was even a possibility. The dispatcher couldn't have been kinder and told me to call the minute we got to town and they would be there. We did and they were.

Moving David into the house and the room he is recuperating in is no easy feat. Our house was built 50+ years ago with all the amenities that a half a century old house has such as strange entryways and narrow halls. Moving David into his room was like moving a bulky piece of furniture through a small space. They did it though. I was so grateful and David made it without so much as a moan of pain. Little did we know that EMS would have a return engagement at my house in less than 24 hours.

Saturday, when David started getting sick, EMS came back to transport him to the ER. Normally.....unless David is unconscious, I drive him myself but with this spika cast.....it is impossible. Once again EMS saved the day and David was transported without incident. As they dropped us off they gave me a number to call when we were ready to be picked up. I kind of thought that maybe this was a normal thing they did......until I talked to the hospital.

On Monday when the hospital was talking about releasing David the next day, they asked how I planned to get David home. I told them that Mulvane EMS were going to pick us up and transport. The nurse thought I had misunderstood to the point that she sent a social worker in to talk to me. She too asked how I was getting David home and I told her the same thing.....Mulvane EMS. She asked me if I was absolutely sure of this as they simply don't do this. I told her they had given me a number to call and she took it walking out saying "I will call them but I am sure you are mistaken. I will have to come up with a back up plan for you I am sure." It was really rather condescending the way she said it, but I began to wonder if I really had misunderstood.

Yesterday as they told me we were going to be released they asked again how we were getting home. Once again I told them what I thought to be true and said that the social worker was suppose to have called. When they checked with her she relayed the message back that she was not going to call because she knew I didn't have my story straight. I could however call if I wanted to. I did. Again....the dispatcher couldn't have been nicer and she said they would be there within 30 minutes. The hospital now had to kick their game into action because NO hospital dismisses in 30 minutes. Wesley did yesterday though. EMS was there in 30 minutes flat. The hospital staff were amazed and kept telling me that this just must be a small town thing. I really wanted to find that social worker and say something ironically obnoxious.....but I was just happy we were going home!

Once home....they once again had to move David like an over sized couch, and I am sure they silently cursed my tiny house with the narrow halls.....but if they did, you would never have known it. They had David laughing and doing his best to entertain them and they were beyond kind. I told them that I hoped not to have to take advantage of them again....BUT I would likely need them to come back the day of David's next St. Louis appointment to help us get him in the car. They said to just call and they would be happy to do it. What a relief!

So maybe the Mulvane EMS isn't like other EMS's. Maybe it is a small town thing, but whatever it is.....I want to say thank you to this great group of people who obviously go above and beyond to help the people of Mulvane. You have no idea how grateful my family is to know these people are here and willing to help in such a kind and professional way. I would say that from the reaction I got over all of this from others.....we in Mulvane are exponentially blessed. Thank you EMS....for everything. And as always....thank you for reading.

We Got This!

With this mornings sunrise, came the knowledge that today our new year, new journey, new life really begins. Yes....I know that we are 7 days into the new year, but in Davidtopia.....we have been in a holding pattern of hospitals, hospital staff, doctors, tests and of course.....the ever popular waiting. Anyone who is a frequent flyer of hospitals knows that life exists very differently inside the medical walls and it feels as if time stands still while everyone and everything outside the hospital moves on. Today....David and I get to move on too.

Yesterday...as the day progressed, my David came back. No longer was he quiet, lethargic and deathly pale. Spongebob was making him laugh again, nurses were making him go full throttle flirt and he clapped and "yee hawed" to the point that I actually had to tell him to quiet down several times. His blood cultures finally came back clear last night and his cough as well as the pneumonia causing it seem to be much better. They have left him attached to the heart rate monitor just so we had an indicator of pain. There has been none and he has been on NO pain meds. Miraculous. The doctor also insisted that we check his incisions. I have never seen more beautiful incisions in my life. There is no swelling, bruising or even any raised suture areas. They are gorgeous....for an incision that is.

Today we await our chariot....in the form of EMS and then soon we will be on our way home. It will feel amazing. The hospital stay has not been without it's positives though. Through our extended stay, I have been able to find out where my strength and weaknesses lie in dealing with this cast. The cast itself isn't really heavy.....just incredibly bulky. When there are 4 of us in here moving him, changing him and working with him....it all works like a breeze. Just two of us work fairly efficiently too....however I have insisted on doing it myself several times just to make sure I actually can. I can....but it is no walk in the park and I know David is not very comfortable. Still, for a couple of weeks we can muddle through and I know we can do this thing.

So today we blow this popsicle stand. We will soon be home in our own surroundings which I am sure need a thorough cleaning. Is it crazy that I am somewhat excited about cleaning? I made myself sleep last night as I knew this was my last night with help and I actually feel okay and ready to tackle whatever is to come. I know we have new ground to break once we step outside the hospital and that there will be more peaks and valleys, but I think it is safe to say.....at least for today.....we got this!

As always....thanks for the prayers and thanks for reading!

Davids Wild Ride

It occurred to me last night about 2ish when I couldn't take my eyes off of David long enough to sleep, that almost every hospital stay since Davids birth has been nothing but one big roller coaster ride. He does bad, he does better, he does really bad and then by the grace of God......he always evens out and then steps off the coaster......no worse for the wear. It is a truly wild ride of EMS rides, frantic car rides, hospital staff, Mom hospital staff arguments, monitors, needle sticks, prayers, hyperventilation and then blessedly.......relief. When he was in the NICU....it was 5 long months of this ride with no positive end in sight. Once it did end positively, I told myself I never wanted to go through anything like that again. However...my plans and Gods don't always coincide and we have had more of these rides than I like to think about. This being the latest and in two hospitals, states and stages to boot! So last night, I decided that there is a lesson in all of this that possibly God has been trying to get through my thick skull all this time!

After a night with another temperature spike and the onset of more congestion, this morning is quite different. I spent a good part of last night forcing David to blow bubbles, and blow to make a pinwheel spin. Apparently all the forcing paid off as this morning his lungs are much clearer. He is also temp free and watching Nickelodeon with great pleasure and noise. He is full of smiles, "yee haws," and "wheredyago's." It is truly a beautiful sight.

Yesterday David seemed to be trending down a bit and I was so relieved to find that there was neither an infection in his shunt, nor was it clogged. Either would have indicated another surgery immediately and I was not prepared for that. David's body has been through enough in this last week. Then we found that his hematocrit numbers (amount of blood in the body) were dropping. Normal is 12-14. His was 9.7 when he came into the ER and yesterday it was down to 8. I was a little irritated that I had to bring up the hematocrit to them but they were ruling everything else out and he was still so pale that he was almost clear and he was very lathargic. When I asked if it could be related to blood loss the nurse jumped right on it and then the resident on the floor decided to follow suit. That is when we realized the drop. Blood loss can be from a lot of things....especially after surgery. It can be from incision bleeding (which his were not), it can be from some internal bleeding such as stomach irritation from the high amounts of ibuprofen he was receiving or as in what we found to be his case.....it was actually from the blood they gave him during surgery. When you receive blood, your own body temporarily quits making it's own as it uses up the new blood. There can be a drop in count after the fact until your body kicks in and starts making its own again. By mid day his body seemed to be kicking in and the numbers continued to increase throughout the rest of the day. As the numbers increased, so did the color in his face and his activity level. It was a sigh of relief for all of us.

Today after talking to the docs, unless David decides to take us on another wild ride.....we should be going home tomorrow. They are now just waiting for his original blood cultures to come back clear. That should be sometime late tonight. So as I said.....providing we have no more surprises....our friendly EMS should be picking him up and delivering him home tomorrow! Yay!

For those of you who have been on me about sleep....you will be glad to know that after about 3 a.m. this morning, I slept like a baby. In fact I slept so well that other than a couple of momentary checks on David....David and I slept until 9:30 a.m. today. This staff is so funny. Both doctors and nurses have tiptoed around when I am sleeping so as not to wake me. The doc apparently came in at 7 but instructed no one to wake me. He said he would come back when I was awake.....and he did. So funny and very unhospital like!

So back to the lesson I have learned. I think the resounding info that I am suppose to be taking to heart through all of this is..........quit planning. Planning only makes me look ahead to things I really can't control and this invariably gets me in trouble as my plans are seldom in sync with Gods. Instead I need to live in the moment and not think beyond the 24 hours that I am currently in. My plans for this surgery and going home were far different than the reality has been. I am sure there have been reasons unbeknownst to me as to why things are as they are....and I am very grateful that we got David into the hospital before this cold hit. Tomorrow for the ride home it is suppose to be in the 40's.....so I guess it is all the way it is suppose to be.

Today I am a bit more rested, David is a lot more active, happy and healthy and it looks as if we are about to depart Davids Wild Ride once again. Please stay warm and safe during all of this cold.....and as always.....thanks for reading!