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!