The Bottom of Another....Uphill Climb

When you have a special needs child, sometimes it feels like you are stuck in a rut...doing the same things over and over again and gaining little ground. It is not the child, but the situation and at times it is frustrating. Especially when your only desire is for them to have whatever it takes to get what they need to be the best they can be for a full and happy life. It makes it no easier when people stand in the wings and condemn you for continuing to push forward and him for being born afflicted. Yes...I have a life full of those who see the life we live as futile and pathetic....and they have no idea of what we go through day to day! I was even recently told that I was making bad choices financially, that I should just put David in a facility and get a full time job. Then I would have money! It makes me both angry at them for their short sightedness and sad that they will never know or understand just what David brings to my life and those he touches. It also makes me determined that if we must go through all of this, that there is a purpose and that I am going to give him the best I have to give.

So surgery for David is apparently a vicious cycle of post operative issues and subsequent ER and hospital visits. It is frustrating for me and I know miserable for him. Sometimes though....keeping our eye on the prize is the only thing that keeps us going. It wears us all down and puts me in a funk. There....I said it! Sometimes this whole thing puts me in a funk!!!! It is a vast array of dead ends, what if's and maybe's and add to that those that keep telling me I should just give up....and there are times when it is beyond overwhelming. Then I see a light at the end of the tunnel and we are back on track!

In case you haven't guessed, I was in a bit of a funk these last couple of weeks. I have been holding my breath wondering if we would be ending up back in the hospital all the while trying to move forward. It has kept me with a bag packed and ready to go to the hospital all the while trying to find some kind of normal life rhythm again. I find myself lying awake at night listening to him breathe or if I do fall asleep then I wake up the second he moves, turns or rustles his blanket in anyway. And then there was the trip to St. Louis looming over my head. I knew it would be a quick trip down and back again for them to take off his casts and then looking ahead....I was already dreading what might lay ahead in the future as far as "quick" down and back trips. Whether we make it in a day or spread it out over two...the bottom line is that it is always exhausting.

Saturday morning we left at 1 a.m. for an 8:45 a.m. appointment. The whole way there I couldn't help but think ahead to our next trip and the one after that. In the winter not only are we fighting time but also the weather and luckily we have managed so far to squeeze our trips in between weather systems but law of averages says that our luck will eventually run out. When that happens then you simply have to reschedule which can put an appointment back weeks and sometimes months. Not what I want when we are dealing with Davids ability to walk. So by the time I arrived in St. Louis...I was already tense.

The appointment went much quicker than I expected and except for a moment of sheer terror when they came at my baby's legs with a cast saw, all went quite smoothly. David took it all in stride and after a brace fitting and x-rays to make sure his hips were healing well, we were on our way home. The best part though.....we won't have to make the at least 18 hour round trip again for quite some time. Dr. S said he doesn't want us making the trip unnecessarily and so he is going to "telecom" with us. Telecoming is when he hooks us up with a pediatric ortho here in Wichita and they take all the x-rays and keep an eye on David under Dr. S's care. This means we don't have to run back and forth for small things and we will only go back to St. Louis for yearly checks and surgeries....unless Dr. S feels he needs to see him sooner. I could have cried at this news!!!!

The trip home was uneventful and both David and I were exhausted by the time we got in and got settled. Little did I know though....the really difficult part was still ahead for my little guy. Since he was not cast in his first surgery, I knew nothing about casting and apparently being cast gave me a false sense of everything were Davids pain is concerned. While cast and now while in his brace, his pain was/is very mild if any. However, if you pull those braces off and Dr. S wants us gradually to have him wear them less and less, then his pain level goes up.....a lot. To the point of tears. We found this out on Sunday.

Sunday I took his braces off and had him lying in bed. I was busy running around cleaning and I happened to look in his room. He had thrown both legs over the side of the bed and was trying to get out of bed. I decided to try him out in the living room. He was over joyed and Z and I brought him out. He however was not satisfied to sit quietly on the floor and watch TV. No...he was on the move, scooting himself on his tush all over the floor. Not confident that this should be happening, I decided to put his brace on him. That made the tush scoot even easier for him as his hips were stabilized. He spent the afternoon scooting. He obviously over did it. By the time he got to bed he could barely keep his eyes open and he fell asleep immediately sleeping for about 45 minutes. He was then awake the rest of the night....and in pain. 

Yesterday he slept off and on and remained in pain. Luckily I have ALL his original pain meds. I took his braces off yesterday afternoon for a couple of hours but I kept his hips as stabilized as possible with pillows. The problem with the braces is that having to wear them so much....I don't want them to start giving him sores. I also made the executive decision yesterday to hold off home bound school for a few days to let David rest a bit more and get used to this new and painful process he must go through. Although I know he is bored to distraction, both his pain and his pain meds make him tired and he is doing a great deal of sleeping now. Something I am sure his body needs.

The upside to all of this and yes there is one.....is that his legs are beautifully straight. His legs have never been this straight in all of his 13 years. They definitely need to have muscle built up on them but from the looks of it, when he is ready for physical therapy.....they are going to be straight and not bowed which will give him his best chance at walking. I am so very grateful.

I now have no illusions about the next few weeks and months. We are at the bottom of another uphill climb. There is going to be pain for him and tears for both of us. It is going to take a lot of determination on both our parts to get where he needs to be. Prayers will be welcome for both our sakes.

The bottom line is that the cards are stacked against us in so many ways. Financially, physically and at times...even emotionally. Still though we fight. I fight for him and he fights to walk and I have noticed that I am not getting any nicer to those that choose to stand in our way or tell us he can't. I have become very single sighted in a world that sometimes closes in and overwhelms but I have every faith that in the end.....David WILL walk!

Getting Closer to the Prize

Well it has been a few days since last I posted and I am getting messages and texts asking how the Incredible Mr. David is doing, so I decided an update was due. Here you go...........

Since returning home from the hospital, there has been a dramatic change in David. He is pretty much back to the David I know and love. His color is good, his appetite is amazing and he is back to playing and being his noisy old self. He is however bored to distraction as Z and I have been his only entertainment and even Spongebob does little to keep him from falling asleep from the monotony of it all.

Yesterday David started his home bound school services and his amazing para (Niki) will be here 5 days a week in the mornings. She put him through his paces and for the most part he gladly did all of his work. There are a couple of things though he just hates and refuses to do. Typical kid. After a morning full of school, he was exhausted and ready for a nice long afternoon nap. Unfortunately....today and tomorrow we are off our schedule as I think I am coming down with something. Hopefully though, Friday we will be back on track.

Health wise, David still seems to have his croupy cough from time to time and we use the nebulizer about once a day to make sure we don't end up having to deal with new issues like a recurrence of pneumonia. I do my best to make sure that he spends a lot of time in his wheelchair as I fear bed sores. So far those have not been an issue....however, tushy (I'm trying to be delicate here) rash is becoming a bit of a problem. I realize this maybe too much info for some but there are people reading this that may end up going through this exact or at least a similar situation and it is this type of info that doctors seldom tell you about. At any rate we are dealing with a rash that seems to be getting worse. I do have an arsenal of topical meds that I am using to see if I can clear it up....but like everything else, it does give me a bit of worry. Is it from laying in a diaper over night and just a chapping? I have a med for that! Or is it from all the hard core antibiotics that have been pumped into him in the last few weeks? Are we dealing with another yeast infection? I have a med for that too. The key is trying to find out what it is and get it under control before it becomes infected, as getting him to the doctor is almost impossible and I am saving my next and hopefully last (at least for awhile) EMS call for an emergency or helping me to get him into the car for our trip back to St. Louis. Prayers that his tushy clears up would be more than welcome. I know! The things I ask prayers for!!!!

Aside from the tushy issue and the cough, David seems very well. We will be making another mad dash to St. Louis this weekend with the end game being to get his casts removed. His hips have done amazingly well and with his casts he has been easier than you might think to move around. The casts keep everything nicely in place and for the most part his pain seems to be at a 2 or less which makes diaper changes and moves from bed to chair much easier than anticipated. From time to time I do seem him trying to bend forward almost in half and I believe that stretches his hips. He doesn't really act as if they are painful, but more uncomfortable.

Once the casts are removed, he will have orthotics that if I understand them correctly, will be similar to the spica cast he has been wearing. The orthotics of course will be removable and make life and car rides much easier. Since it was only his hips worked on this time and not his legs, I have every hope that his independent mobility will come back faster than it did when both his hips and knees were worked on. I am hoping this may lead us to quicker physical therapy in which we will see much quicker progress this time. I know the next few months will be exhausting for him and will likely try his patience to the limit but hopefully the end results will be a walking David.

There is the possibility that in the mix of all of this, that he maybe looking at a foot and ankle surgery too. As much as I dread the thought of it, it sounds like a walk in the park compared to the last two surgeries. And we also have an eventual spine surgery coming up in a year or two. Hopefully after that....we will be done with the surgery-go-round! Still though, through it all, I say thank God for Shriners and the amazing doctors who are giving David the best possible chance at mobility and independence that he can have.

So there you have it. All is basically well and by this time next week I am sure you will be hearing all about life without the dreaded spica cast. We are getting closer to the prize!!!! Stay tuned and as always....thank you for reading!

Rumor Has It

So....he had a temp free night, his color is good and holding and rumor has it that we maybe going home today. GLORY BE! I think we are both so sick of this place we could cry. Like all hospital stays, it has had its good and bad points but even 5 star accommodations couldn't make me want to stay one second longer than necessary.

David, just ate enough breakfast to feed two kids. He is cleaned up as am I, so we wait. Yes, there will be EMS involvement (I am going to have to bake those people a cheesecake) and hopefully before early afternoon...we will be home. Fingers crossed. And now I am ashamed.

As I sit her complaining and have been feeling confined for the last few days, I seem to forget how blessed we really are. I can't help but think of two little girls and their families who have spent way more time in the hospital this last year than most ever do in their entire lives. Of course I am referring to Adele and Hadley. Both have been fighting cancer (two different forms) and both have clocked more hours in hospitals, having tests, surgeries and all the other yucky and unpleasant stuff that goes on behind hospital doors, than even I can imagine. Their journey's are far more daunting than Davids and in comparison, I have absolutely nothing to complain about. Shame on me!

Blessedly though, both little ladies seem to be holding their own as we start the new year and for that I am so very grateful. Please continue to keep these precious girls and their families in your thoughts and prayers because when they aren't feeling well the whole family is affected.

So today should be a good day. My fondest hope is that the next blog you read....will be written from the comfort of my own home. Oh...and as always.....thank you for reading!

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!

And Still He Sleeps.......

And so it begins. I am in very familiar territory again. Dreaded territory...but at least we are home.

David started trending downward as the morning progressed yesterday. His cough worsened, at least for an hour or so and his temp went down and then up in spikes. He went from rosy cheeked to pale and dark sunken eyed. I knew it was not in his best interest for us to take a wait and see attitude, so I dialed up my new best friends.....the Mulvane EMS. After a little bit of struggling, they were able to extract him from his bed and get him in the ambulance. Damn my 50+ year old house with the narrow hallways and his spika cast.

Once at the hospital I could literally feel the knot starting in my stomach. His temp was down but his heart rate was high and his blood pressure started dipping. The only bright spot was that my favorite ER doctor was present and accounted for. She knows David almost as well as his pediatrician does. She also knew that the little boy she was looking at (pale, quiet and lethargic) was not the David who usually graces her ER. He immediately drifted off to sleep, only to wake up to receive his IV. I just stood by and do what I do best in these situations. I watched the monitors. I watched his O2 stats look beautiful which I found strange with his cough and I watched his heart rate stay a bit elevated while his blood pressure was around 85/40 and trending down. The knot was tightening.

After x-rays and a full blood work up (some of it which can't be read for at least 24 hours) they concluded....though not definitively......that they thought he might have a touch of lower lobe pneumonia. At any rate they felt what was going on was likely viral and every nurse, doctor and aide donned a precautionary mask when coming within 30 feet of him. They started him on the dynamic duo of anti-biotics and sent him to the floor.

Once on the floor....he was pretty animated and almost his old self for about 30 minutes, then the temp crept up to almost 102. The lethargy kicked in again and the only signs of the child I knew were the fact that he downed about 6 drinks and managed to snarf a hamburger and fries. He then quietly watched tv and drifted back off to sleep, where he has stayed other than being roused for vitals checks. Here we sit at almost 9 a.m. and he is still out. Never in his life has he slept this late. He is pale and running a low grade fever. So the question remains....why have the anti-biotics not kicked in yet? 

Perhaps some illumination on the subject> With kids like David, when fevers spike and lethargy kicks in....there can be a million and one reasons. Coming off the tail of a fresh surgery, it can be from the trauma of the surgery, from infection setting in from the surgery or from a bug he caught in the hospital while having surgery. However...it can also be from other things.....like his shunt. 

David is what they call hydrocephalic. It means that the fluid doesn't drain from the ventricles in his head/brain area like everyone elses does so he has to have a shunt (drain device) to drain it for him. If not drained it can cause swelling on the brain, brain damage and death. A shunt is connected to where the brain normally drains and then has tubing which travels into his stomach where the brain fluid is released and absorbed. Because the shunt is basically a foreign devise in the body, many kids who have shunts, develop a lot of shunt infections and they have to go in and remove the shunt, hit them with major anti-biotics and then replace the shunt. Thankfully David has never been there, but he has had what they call a shunt malfunction where after about 8 years, his shunt just clogged to the point of nothing could flow through it. He spiked a fever and became lethargic and very pale. After a quick replacement surgery (about an hour) he was like a new kid. We have had no problems since, but a doctor this morning suggested that pneumonia might not be Davids only issue at this point.

They have a call into David's neuro-surgeon (Dr. G) and they are planning on a shuntagram in the next little while. If this is shunt related....that means David will be undergoing another surgery....likely today. The knot in my stomach cannot possibly get any tighter. At this point I don't know whether to hope that the shunt is the issue so that we can definitely move forward or to hope that it is just pneumonia because he doesn't seem to be any better today.

I managed to sleep just enough last night to be able to think coherently enough to be really freaked out by all of this today. I am still so tired though that I am finding myself jumping to some really scary places where David is concerned and it is taking everything I have to fight this feeling of unraveling.  I am to the point where I am starting to HATE David having these surgeries as they end up being so hard on him. And still he sleeps......

Reigning myself in....I am going to trust in God and have faith that He will put the answers and the skill to make David better in the hands of this staff. Please keep praying for David and as always....thank you for reading!

The Other Damn Shoe

So you remember that whole "other shoe" thing? Well....it may be dropping today. More on that in a bit though.

Our car ride home was unbelievably easy. No.....really! Other than me getting lost on the way home (story for later), the trip was wonderful. The only hitch (other than getting lost) was me being too tired to think through David's positioning in the van ahead of time. Well, I sort of did but not thoroughly enough. It is here where I must admit that my friend Marni had text me and ask me the day before if I had the logistics of how he would travel figured out. In my head I did and I told her so, but in reality I had no idea and I knew it. It nagged at me after our conversation but I was too tired to believe that I didn't have my bases covered. I didn't. 

When we got David to the van, it was evident that his usual riding seat was going to be a no go as his legs take up a good 32" from foot to foot and being that they stick straight out and a little up in front of him, he is hardly compact or flexible. Add to that the fact that Z had packed the car..... and by packed I mean, anxiously tossed the bags and all our other junk all around making it impossible to get to any seat in the back but David's usual one....made things even more fun. After standing back and assessing the issue though, I figured that we could fold David's usual seat into the floor and then put him on the back bench seat. That way he had plenty of leg/cast room and space for us to prop his feet. The only down side to this new seating system was that the bench seat didn't recline like his usual seat. He had to spend the entire trip sitting pretty much straight up. Poor guy!

Half way home after much discussion, Z and I realized that there was simply no way we were going to be able to get David out of the van and into the house on our own. Thank goodness for living in a small town and having an amazing EMS. We called ahead to see if they could meet us at the house and help us to get him in. They didn't bat an eye and were here and made what could have been a disastrous extraction a smooth transfer. I was so grateful for this because at 8:30 p.m. I was too exhausted to keep going much longer......or was I?  After getting David in and settled, I was apparently too tired to actually sleep and I watched the clock tick away until somewhere around 3ish. David on the other hand.....slept with abandon. Lucky!

Now onto the other shoe. So we finally get up about 8ish this morning and he is in good spirits (especially for going an extended time without pain meds). In the process of giving him morning meds and getting him ready for the day, I notice he is really hot! I take his temp and it is 100.4. Sigh! Then he begins to cough this croupy cough. Double sigh! I go back and read and reread his discharge notes. I know the fever is not a good thing and being as immobile as he is the cough could be a really bad thing.  Of course, being exhausted and still pinching myself over the ease of all of this so far.....I am trying hard not to panic as my first instinct is to call EMS (apparently his new form of travel until these casts come off) and take him to the ER. Instead though....I call his pediatrician and get the on-call doctor. Blessedly he is nice and understanding even though I am borderline daffy and exhausted. His advice: watch his breathing, keep fluids in him, make him cough and watch his temp. If it gets above 100.8....call EMS and get him to the ER! Did you hear that? Yep....the other damn shoe.

So far David is happily watching Spongebob intermittently waving "hi" at me. I have him loaded to the gills with all of his meds and am hovering like a mother hen, hoping that there are no more hospital visits in our future for awhile. However, with Davids history of going from zero to septic in the blink of an eye....trust me, I won't hesitate to call EMS if that fever creeps at all.

So now, before I forget.....I would like to show a little gratitude. First of all....thank you to all who have bought Cheesecakes for David, prayed for (and continue to pray for) David and all those who read this blog and watch facebook for updates. I would also like to thank Nikki our friend who both watched our house while we were gone and took care of my furkids. She even took the time to shave Spud and make him look presentable again. Thanks too, to Haven House for another wonderful stay and to the hospital staff of both Shriners and St. Louis Childrens for taking such wonderful care of my boy! You all make this journey both possible and bearable and for that I am forever grateful.

I will keep you posted on the fever and the cough and until then.....thanks for reading!

Amazing

I hate to sound excited but..........I want to go home today!!!!!! I think David would agree. We are ALL ready and from the sounds of it, today might be our only opportunity for weather free travel as a snow storm is predicted for both Kansas and Missouri for tomorrow.

Homesickness and weather worry aside, I have to say that this trip has verged on AMAZING!!! Well, maybe a tad more amazing for me than David since I didn't have major surgery on my legs nor am I sporting a cast that is holding my legs both two feet apart and perfectly straight. That being said, this whole surgical experience from beginning to end has been sooooo much easier than last time. In fact, even the trip itself was easier.

If you remember last time....David and I flew into St. Louis on a five seater tricycle that I have as yet to recover from. I can safely say that this time my feet have been no more than two feet off the ground this whole trip! Last time the post surgery recovery was a bit dicey for the first 36 hours after surgery. Not this time! This time he woke up feisty and thirsty and he has never looked back. His vitals have been beautiful and other than a short lived temperature and a couple of mini seizures thrown in for a little excitement, David has been healthy, happy and ready to entertain all who walk into his room. Thank goodness, as I simply don't have the strength to have to sit and watch monitors hour after hour.

And speaking of visitors (well I sort of was), that has been a very nice aspect of this trip too. We have gotten to see some relatives we don't typically get to see a lot. I mentioned Davids aunt, uncle and cousin who introduced us to a divine new to us delicacy called Imo's pizza....and while they were here...we got to laugh, talk and eat which surely helped what is otherwise a rather boring hospital stay. We also got a very nice visit from my mother in law. We hadn't seen her in awhile and it was the first time we got to meet the new man in her life....Ike. I have to say that I don't often take to people right off the bat but this man is hard not to like. Z also liked him immediately. I am not sure whether it was his personality which is amazing or whether it was the way he looked at Carol (mil) with such great affection. The feelings are obviously returned as his presence seems to transform her from the grandma we have all known to an ageless beauty who blushes, laughs and returns his affectionate looks with a knowing smile. It was an amazing thing to watch and it seemed to have a positive effect on us all. In fact....I think we can safely say that....we like Ike!

Aside from visitors....David has been content to watch copious amounts of Spongebob, nap intermittently and take a couple of adventurous trips outside his room. All in all with such an extensive surgery, his recovery has been remarkably unremarkable.

Dr. S has just been in and apparently the drain fairy's were in before my eyes were even open this morning and the drains are gone. His pain is well controlled and we have been given the okay to head home! I am sitting here pinching myself and thanking God for the miracle that this experience has been. We have already been told we need to be back in three weeks or so to have the casts removed and to get his knew cast-like orthotics. I am sure by then we will all need a quick trip to St. Louis to dust the cobwebs off of us. I am hopeful that his recovery time is as amazing (notice how I keep using that word?) as his post op time has been, but like everything....we will continue to take it all......... one day at a time!

Now it is off to beat the snow storm.

For those inquiring....I will keep posting dailyish updates here as David continues his journey to walk. Please keep the prayers coming and thank you so much for reading!

One Step Closer to Home

There is beauty in every situation, even the worst ones if you look hard enough. Although our situation is far from the worst, still exhaustion, pain, frustration and fear are collectively taking their toll on my family. The what ifs of what tomorrow will ultimately bring and if we will be up to meeting the challenges are never far from my mind where David is concerned. Last night though....the beauty was still shining through as I got to watch the most beautiful snowfall I think I have ever seen. From our hospital room window which overlooks an amazing park complete with an ice skating rink....I got to watch the pillowy soft flakes fall against the lights of the city. It gave me amazing peace and made me realize that everything has place and purpose and right then and there was both my place and purpose. Perhaps it was God letting me know that although this journey to David walking isn't always a pretty or pleasant one.....in the end our prayers will be answered.

In comparison to our last surgery go around....this one is a walk in the park, but still we have the speed bumps to make our way over. Yesterday David experienced the back lash from the previous days delay in seizure meds. On surgery day I had to wake him up to give him his meds at 3:45 a.m. He usually gets them between 6 and 7 a.m. Then he did not receive his noon meds until after 5 p.m. I braced myself because I knew this disruption of meds was likely to set something off. It did. Yesterday afternoon he had two of his mini seizures. Each time his heart rate jumped to almost 200. I had never seen him have a seizure while hooked up to monitors. I have decided that I am just as happy not knowing what goes on internally when these monsters (mini or otherwise) hit.

We also began with a fever. It began at a 100 and eventually made it's way up to 102.3. My stomach began to churn as the fear that infection might be setting in started playing through my mind. I could feel myself becoming "THAT" mom who wears on the nursing staff, but I really didn't care. Ultimately I am the one responsible for keeping David safe and healthy and in my head they just needed to fall in line!

By 10ish last night his temp was coming down and it was explained to me that this surgery he had was considered a trauma to his body and this sometimes can bring on temperatures. This morning he seems to be temp free. He is starting to develop a small amount of congestion and we are keeping him full of fluids and making him cough. Again....another not unexpected side affect.

Yesterday he ventured out of the bed and into a wheelchair for about 3 hours. With the epidural still in tact he was feeling no pain and seemed to enjoy taking visitors from the chair instead of the bed. Once back in bed we had more visitors and he fluctuated between entertaining his aunt, uncle and cousin and drifting off to sleep. We also were treated to Imo's pizza. For those of you who have had Imo's no explanation is necessary. For those who have not......I will have to devote an entire blog at a later date to the subject.

Last night I found it difficult going to sleep knowing that today was the day they would pull the epidural and we would start seeing his "real" pain. Also....as a Mom....I don't sleep when David has a fever, so until I knew his fever had subsided....I stood watch. It made for a short night.

This morning I was awaken by a doctor saying "Ma'am! Ma'am I need to talk to you!" Crap! I am not coherent being woke up like that which was really not a good thing since he was the hospital neurologist checking in on David's seizures. I am pretty sure by the way I couldn't remember words, make complete sentences and continued to wipe sleep drool from my lips....that he thinks I am on drugs. I am fully expecting SRS backlash from this mornings visit. :-)

Since that incoherent visit the room has been full of pain specialists, physical therapists, nurses and at one point I think there were just various sight seers in the room. Through all the commotion though David did get his epidural removed and is now on IV pain meds, Z and I learned how to transition him from bed to chair and back again and David managed to eat my breakfast, his breakfast and last I looked he was eyeing Z's breakfast. In case you were wondering.....his appetite is fine!

After having his epidural pulled he seems to be doing well on just IV pain meds. He tolerated being transferred to a wheelchair just fine and even went on a field trip with Z to the Teen Room where he came back with a literal haul of stuffed animals, a blanket and some amazing books. His spirits are high and Z said David had the best time going downstairs.

We are still on track to go home tomorrow unless something changes....which in Davidtopia and Lisaland....that is always a possibility. However....we are still shooting for tomorrow. Please say a pray that we stay on track and that the weather cooperates. Thanks for reading!

Day 1 of 2014

So we are in day 2 of post surgery and day 1 of  2014.....and David is doing well. The doctors keep cautioning me that it is not real though and not to develop a false sense of security on the ease of his recovery. He is still rocking the epidural which seems to be keeping him very comfortable. However, the second that it is pulled....we maybe dealing with a whole new ballgame. For now though, I am basking in the delight of a semi normal heart rate (120ish), good blood pressure, good coloring and a fairly pleasant disposition.

David has an amazing tolerance for pain and being non-verbal, it is often difficult to tell if he is hurting. We have been going by heart rate elevation as to whether we think he is uncomfortable or not. Last night they came in and moved him (every four hours we change his position to prevent bed sores) and he ended up on his side with one leg in the air. He seemed to be sleeping fine but I watched his heart rate gradually climb into the low 170's. Of course I alerted the nurse. They came in and returned him to flat on his back and his heart rate was back to post surgery normal within just a few minutes. There is no full on pain right now, but there is obviously discomfort. :(

He also developed a low grade fever during the night. It was barely above 100 and not unexpected after a surgery such as his, but my mom senses tensed up for a bit. I know it was the whole "other shoe dropping" thing. It went down on its own though and there has been no fever since.

This experience has been somewhat different this time as opposed to last time. Davids charts have not only been read but committed to memory by his surgical and post care team and they are doing things a little differently to avoid any issues or extended stays. The epidural has been an amazing addition. With Davids everyday issues it has helped to control not only his pain but the need for other pain meds. The side effects have been cut to almost non-existent and he is comfortable. They will start weening him today on his epidural meds and by this time tomorrow we should be getting a pretty clear picture of his true pain.

Another difference this time is the cast. It is actually a game changer in many ways. His physical therapist was less than pleased after his last surgery when he came home without the cast we were expecting. This time he is cast from his hips to his ankles in bright neon orange. I will have no trouble finding him in the dark! The cast comes equipped with a leg spacing bar which keeps his legs in position. The guy in charge of orthotics came out and talked to me yesterday after David was cast and told me that they had also taken a casting of Davids legs so that removable orthotics resembling his current cast can be used after the cast is removed in 3 weeks or so. I am sure this is what is going to help keep his feet and legs from crossing over each other. The cast is as light as they could get and yet still heavy for a kid who has never been cast before. I see this being a bit of an issue or should I say more of a irritation as he begins the recuperation process. The good thing is....other than not pulling on the bar at all, they have told us that there is almost nothing we can do to hurt his hip alignment with these cast. That is a very good thing. I only have one logistical or physical problem with these cast and that is mobility. I borrowed a wheelchair with leg extensions as that is all I needed last time. It took me about two seconds after surgery to realize that the borrowed wheelchair will not work in his current situation. I am going to have to get a wide chair with a reclining back and leg extensions. They told me that the hospital should be able to help me obtain this and they are also trying to get me a special chair that he can sit in at home. Sigh! Not to worry though....these are just tiny speed bumps and nothing more in the big scheme of things!

The final difference in this surgery is that they put drains in both sides of his hips. This was to prevent any chance of infection. I have a fairly strong stomach, but these things are truly testing its strength. The out put is already lessened a great deal so they are talking about likely taking them out tomorrow. Thank goodness!

All in all, he seems to be progressing very nicely towards a possible Friday dismissal. For now we are enjoying our "private room" (a story for another day), our beautiful hospital room view and a positive and exciting start to the new year. Please keep the prayers coming that the next few days hold no setbacks and that I can get David back to Kansas comfortably. Now go forth and enjoy day 1 of 2014 and thanks for reading!