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!

Surgery is Under Way

Life has been a crazy whirlwind of commotion and preparation all leading up to right now! Right now David is in surgery and with God's grace....hopefully on the road to walking!

As a mom....this last week has been one of great emotion for me. After the last surgery and almost losing him and then almost losing him again in October after his seizure, it was all I could do not to have a complete breakdown thinking about this impending surgery. There was a part of me that wanted to grab hold of him and say...."No more! He's been through enough! We've been through enough!" Then I would remember the big picture and know that I couldn't see him in that wheelchair and look him in the face in the years to come if I didn't give him every possible chance at an independent life. So here we sit.

It feels as if I haven't slept in weeks. Truthfully....I haven't slept for more than a couple of hours at a time for a good two weeks and my mind and body are both starting to feel it. I am thinking that maybe towards the end of January I will get to have a night of complete, stress free and uninterrupted sleep, but until then......I will survive on coffee and mom adrenaline!

I think David knows that something has been up for awhile. I have not really talked to him much about it as I didn't want to raise his anxiety but the back and forth trips to St. Louis and the poking and prodding have definitely caused a change in his attitude.

Last night David could have nothing to eat or drink after midnight. He was asleep by 9 and when he woke up this morning he was more than a little thirsty. His lips became more and more chapped as the cold morning air hit them and he was not allowed a drink. Needless to say this did not put him in the best of moods and I was afraid we might have a knock down drag out fight when it came to IV placement. Irritated as he was....he just didn't have much of a brawling spirit and the IV stick was pretty much a non-issue.

We had a constant barrage of nurses, anesthesiologists, residents and the doctor in and out of his pre-op room. They decided to put in an epidural to help with pain management after the fact in hopes that this would keep his heart rate down. We don't need any off the chart heart rates after surgery. They are also anticipating some blood loss, so blood products are ready. The doctor is also leaning highly towards putting him in a cast from hips to feet to help insure a successful outcome after the fact. However....it will depend on what he finds during surgery.

They gave us an approximate surgery duration of 4-6 hours with no definites. It could be shorter or longer but their best guess is within those parameters. We were given our own private waiting room cubicle and are given updates every hour to hour and a half. Our first update was at 9ish (after going to surgery at 7:30). He had been put under, had been given the epidural and they were beginning on his right hip! After surgery he will either have the breathing tube removed and be taken to post op and then the floor OR....if his heart rate is too high or there is any kind of complication....the breathing tube will remain in and he will be taken to PICU. As you can well imagine....I am praying for option 1.

Finally....our hospital stay can be anywhere from overnight to 2 or 3 days. It all just depends on how well he does and how quickly he seems to recuperate. I am thinking best case scenario will be about 2 days.

So I am sitting here intellectually knowing that he will be fine...and trying not to vacation in the negative. David has worked too hard and waited too long for this surgery to be anything but a success.

Please keep my boy in your prayers and know that I will keep you all posted in the hours, days and weeks that follow!

Pushing Forward

It feels like literally eons since I last posted. Maybe because it has been. Life has been crazy busy and since they moved up the surgery from the 14th of January to the 31st of December.....we have been in hyper-drive!

I went ahead and did the Cheesecakes for David again! I wasn't going to but several talked me into it. It was amazing and overwhelming as I had about 310 orders. There was about 2 full weeks of baking 12-16 hours a day....but I was grateful for every second. It is up in the air as to what post operative things such as physical therapy will be covered....so every cent earned will help.

I finished my last cheesecake at 4 a.m. the 23rd. I did my Christmas shopping that afternoon, got my last cheesecake picked up/delivered on the 24th, wrapped gifts and greeted Santa with a smile come 1 a.m. Christmas morning. We had a nice though sleep deprived Christmas day and then yesterday at 5:30 a.m. we headed to St. Louis for Davids pre-surgery consult with his doctor and anesthesiologist.

I have to say that either I am just getting more proficient at making that St. Louis drive or yesterday's drive was just easier. The traffic was almost non-existant both coming and going and the trip although longer coming home than going....went very smoothly. This time instead of going to Shriners we went to St. Louis Children's hospital where our new Shriners doctor (Dr. Schenicker) has offices.

First we saw the anesthesiologist who will be working with David! He had obviously read David's chart from cover to cover as he knew every detail of his last surgery. He told me why he felt that David's heart rate had remained so high last time and why he felt that he aspirated. He had blood drawn on David yesterday as he said that since David had to be given blood transfusions during the last surgery he wanted to make sure that he hadn't developed any anti-bodies towards the blood. If he has...then they will have to go a different route with blood products. He didn't anticipate any anti-bodies but if there were some....he wanted to know now and not during surgery!

Then we saw the doctor. He and a resident checked David's legs and hips out thoroughly. What we came up with is that they will not be doing anything to his legs. They will be focused on his hips. They will go in and remove the plates and then adjust his hips and replate them. I asked the doctor about casting him as this is what I was told they would do last time. He said that it was a possibility but he wouldn't know for sure until he got in there and saw what he was working with. Basically if he feels that casting David is the best way to go he will do it and if not....then he won't. After doing these surgeries for about 50 years and being responsible for literally thousands of kids walking.....I trust him.

The best news was the fact that since they are doing only the hips....the surgery should be a much shorter one. They also seem to think that the recovery will not be as painful and if all goes as expected (please God let it!) then we should be home in a couple of days. I am good with that!

Thanks to some amazing people, David already has a wheelchair and a hospital bed. We are good to go and won't be scrambling at a distance this time. I also have a much better understanding of both his surgery and his recovery this time. While my stomach is still in knots and will remain that way until he is back home and recovering well, this time at least....I am not a basket case with no idea what we are walking into. Still....I am praying constantly that all goes as planned and we don't have any unexpected Elam wrenches thrown into the mix!!!!

After surgery, David will still be attending school....it will just be home bound where his para and his therapy teachers will be coming to visit. When and if he actually returns to school this year will be left in the air until we see how he feels and how physical therapy is going to fit into his life. Those are minor issues though that we will work out as we go.

With all the activity here in Davidtopia.....it has really been a blessing, as I have had no real time to fret and worry over things I have no control over. I have just had to put my head down and keep moving forward. The next few days will not change that at all as my dance card is full right up until the second we hit the road headed back to St. Louis. This is not a bad thing though as there is no time for me to dwell on the negative or vacation in the "what ifs." I have a feeling God planned it this way.

So you will likely not hear from me for a few days as laundry, house cleaning and last minute preparations will trump blogging, facebook and any other socialization's I might like to hide in. However....trust me.....come Tuesday you will be hearing from me almost daily for awhile!

I am grateful to all of you who love and care about David so much. Your good thoughts and prayers are invaluable to us and I have no doubt will be the key to helping us make sure that.... David walks. Thank you all from the bottom of my heart.

So now I leave you. If you happen to see me in the next few day with my head down looking very single sighted....not to worry. Just know that I am focusing on the big picture and keeping the Elam clan pushing forward to the next leg of David's journey!