Thank You Haven House

Well...the last few weeks seem to be catching up with me. Last night I went to bed feeling awful and this morning....not much has changed. Yes...I have tried to sleep! Yes....I eat when I can! And honestly....I am not worrying near as much as I was. Bottom line though.....I am not 20! Shhhh....don't tell anyone! Honestly.....I think my body is just saying......"Whoaaaaa! Slow down a bit!" So that is what I am going to do today. Other than a couple of things I "have" to do....I am doing nothing.

David didn't have an awesome day yesterday. I think he was hurting and although in the past he usually won't tell you where he hurts....yesterday he kept pointing to his feet. He constantly wants to sit doubled forward holding his feet. I am thinking that possibly he is having cramps or charlie horses in his feet. Not sure why as they didn't do anything to his feet, but maybe this is a side effect. At any rate....I will be calling Shriners tomorrow and checking up on this. We are also back to him pulling at his steri strips. I keep hoping they will all just hurry up and dry up and fall off. No such luck though. As they start to dry and unadhere themselves.....David starts to pick at them. So far the ones on his hips have come off fine and the scars are literally works of art. However, the knees have not been so fortunate. David has pulled the strips and caused them to bleed causing scabs. The knees will not be as pretty......but then again.....most little boys end up with scarred knees anyway. At least that is what I keep telling myself.

The weekend has sort of put a snag in our routine and everything has gone sideways. Hopefully if I rest today....then tomorrow we will be back on track. It still feels like life is a little surreal. Maybe in the next week or so....that will all change. As I have said before...it is all about perspective. Maybe a shower will help that perspective along!

So yesterday I talked a little (okay alot) about Shriners and Shriners Hospital St. Louis. Today I am going to talk about another great place in St. Louis.....Haven House. Without Haven House we would have really put everyone in our MO family out when we went for surgery. We had to fly into MO two days early because of the Wings of Hope flight schedule. Had we had to rely on family they would have had to pick us up in Chesterfield....drive us all the way to Bismarck (about an hour), drive us back to St. Louis the next day for blood work, go back to Bismarck, an then have us to Shriners by 9:30 a.m. on the next day for surgery. It would have been a huge amount of driving, gas and inconvenience. Shriners and Haven House made sure this was not the case.

Every time I go to St. Louis...Wichita is put into perspective for me. Although Wichita has predominantly been the biggest city in my hemisphere most of my life, it is nothing but a hamlet compared to the sprawling hugeness of St. Louis. Thank goodness going to Bismarck I only have to outskirt the city or I would constantly be lost. Amongst the hugeness of the city of St. Louis are many huge hospitals and they spread out over the city. Some of these hospitals are specialty hospital where people from all over the country and even the world come for treatment. Because of this....someone was thinking when they came up with Haven House. 

HH from what I was told was originally a children's home. It sits on Olive Blvd. in West County St. Louis. Not unlike Shriners Hospital...it is not ostentatious or fancy. On the contrary it is warm and cozy and gives you the feeling of a home away from home. This is exactly how it is intended to feel. Haven House serves many of the St. Louis area hospitals. It is a place where families can stay who have loved ones in one of the hospitals. Some stays are over night, or a couple of days like ours and then some are much more lengthy. We had the privilege to meet a woman who was from IL and whose husband had had extensive heart surgery. She had been staying at HH for the last six weeks and she told me if not for them and having a home-like place to retreat to every night....she wouldn't have survived this whole ordeal. Amazing!

When you pull up into the circular drive, you see that HH is flanked by restaurants and across the rather (REALLY) busy road looks to be some great shopping. Before you can even step out of your vehicle....there are people coming out to greet you and help you with your bags. Upon entering the building you find a front desk to one side and a cozy sitting area on the other side. They take your information and then you are escorted to your room. HH has two stories. The upper story has several suites with private baths, each room also has tv (the lower rooms do not), and there is a private kitchen and laundry for those staying in the suites. I am sure these are for the more long term guests. On the lower level a hall takes you to a central seating area and doors to the community dining area. Going left or right of this space takes you to two wings on the right and two on the left. Each wing is named after a bird: oriel, robin, etc and each wing has about 6 or 7 rooms. The wings each have a tv room filled with wonderfully over stuffed furniture and a huge tv, a laundry room and a private  fully stocked kitchen. While I did not see any other rooms....ours was wonderful. They all have private baths and our room was big enough that even with all the furniture...David could easily negotiate the room in his wheelchair. Ours had a king size bed and also a twin bed, a huge dresser and mirror, a chest of drawers, a desk and chair and a good size closet. We had no tv, but then again...who cares?! The bathroom too was spacious and fully stocked with shampoo, lotion, etc. The decorations were also wonderful. The beds were covered in beautiful handmade quilts and the rooms themselves felt comfortable and homey.

One of the great things about HH is their extraordinarily good food! Included in your stay is two meals per day (breakfast and supper). There is a little lady that does all the cooking there and she is marvelous. We had chicken breast one night and roast beef the next and it was so so  good. You can eat in the dining room or take a to go tray to your room. If you are late getting back from the hospital (past supper time at 5) then they put your food in a to go box and store it in the frig so you can pick it up and reheat it when you get there. It is just awesome!

Some of the amenities of HH include Wifi, a huge gym which David thoroughly enjoyed, a fully stocked arts and crafts room for kids and families, a kids playroom, a study room with cubicles and a small library, and periodic sitting spaces with tv's for kids and families to enjoy. For being in the city, the views are wonderful and believe it or not...there is wildlife. I saw ducks and geese while we were there and was told by others that they get deer, opossums and the occasional raccoon on the property. It is the best of both worlds....modern convenience with the sense you are just a little bit rural.

One of the nicest things about HH is that even if you drive, once there you can park your car and never have to use it to get back and forth between the hospital. Daily HH offers 4 different shuttle times to the participating hospitals. You have to sign up the day before and the shuttles run at something like 7:30 a.m., 10 a.m., 4 p.m. and 7 p.m., so you can actually leave and spend an entire day with your family member or come home early if you need to. David and I took advantage of the shuttle when he had to have blood work done the day before his surgery. They have friendly drivers that pick you up and bring you back and make navigating a difficult city a breeze. On Wednesday...since David had to be at Shriners at an off hour (not on shuttle schedule) the Moolah Shrine in St. Louis sent us a beautiful and roomy van with a wonderful Shriner and his wife and they shuttled us to the hospital. It was such a relief that I was not doing the driving!!!!

When leaving HH....they ask you to strip your beds, throw away your trash and make sure you get all of your belongings. Again....just like home! You get all of this for I believe it is $30 per night (much cheaper than any hotel and much nicer too). Luckily for us....Shriners picked up this tab, but even if they hadn't we couldn't have stayed (even at a gross place) for that price. It is just a wonderful wonderful place. Are you catching the wonderful theme here?

I believe the one thing about HH is that one of the participating hospitals has to refer you, but if you have a family member staying at one of the hospitals for any period of time....I am sure that would not be an issue. If you are going to Shriners...that is their place of choice.

So as you can see....Shriners and HH do their best to make sure that even the most trying of situations can be faced with care and comfort. Thank you Haven House for all that you did!

Shriners....Not Just a Fez and Parades

When I started writing daily in this blog about David's journey....the reasons behind it were three fold. Reason #1 was to maintain what small piece of sanity I have. Reason #2 was to keep anyone who was interested.....up on David's medical status. Finally....and this was to me....one of the biggest reasons....Reason #3....to educate on all that was going on from beginning to end. I knew that we certainly weren't the only ones who had ever gone through this, but....there wasn't a lot of information out there about this particular journey. So today...I will make this blog a little more informative. Before that though....David is doing well. I worked him like rodeo stock yesterday and today I am not his favorite person. I decided to give the young man a break and allow him some space and a whole lot of Spongebob. Tomorrow though....we will be right back at it!!! Yeehaw!

Okay....David has had cerebral palsy since birth. Other than the words....I knew nothing about CP. To be quite honest....the first couple of years....I ignored the diagnosis. I did the required having Rainbows out and having physical therapy (PT), occupational therapy (OT) and speech but lots of kids for lots of reasons had those therapy's, so you could say that I lived in a bit of denial. As David grew though and started school at 3, his physical issues could no longer be denied. I then put him in the CP clinic here in Wichita and started seeing a pediatric ortho doctor. When he was about 5, his knees began to turn in worse and worse. Someone (have no idea who...possibly a PT) told me that there were surgeries that could be done to fix his knees and his tight hamstrings and give him better mobility. When I discussed this with his ortho doc I was told that the surgery would be too hard on him and that the likelihood of it working was not great, so it was a lot of pain for the possibility of no real result. David was so tiny then and I just couldn't put him through something like that for nothing.

With really good PT David began to improve and the results were amazing. Then the school changed PT's and David began going down hill. His flexibility became worse and worse as did his mobility. A supposed professional for over 20 years was refusing him stretching and believed having him stay in a stander was all the therapy he needed. His walker time was greatly diminished and he was carted everywhere in his wheelchair. I saw him going down hill right before my eyes. When I took him to the ortho he was furious. He told me to get him out of school PT and get him into "real" PT at the hospital two times per week. Needless to say...feathers were ruffled and if you can imagine....SRS was even called on me in retaliation. Luckily the SRS social worker was not stupid and after being invited into my home during a surprise visit she left saying that she saw no case at all and would mark it down as "misinformation"! I have not forgotten then incident....nor will I ever.

After this...this PT was suppose to be out of David's life. He was going to the hospital PT and once again we were making progress. Suddenly one day David refused to have anything to do with the hospital PT. He became hysterical and screamed, hit, bit and did whatever he could to get away from her. I knew she had done nothing to him as I was always there with him. She was as shocked as I was. On returning him to school I told them that he was extremely upset and what had happened. Later that day I received a call explaining that the school PT was "overseeing" him at school and when David wasn't as compliant as she liked....she would get in his face and scream at him. This was stressing him and scaring him and he was connecting all PT with her actions. When I found out I demanded that this woman be gone. I didn't want her around him EVER again. I got our CDDO advocate involved and when the meeting was set...the PT didn't show and I was told that she had resigned(not quite the truth but that is another story for another day). I was good with that and soon David had a new and wonderful PT at school which was awesome as the hospital was not keen on him coming back after his melt down. Understandable.

With the new PT David was progressing once again, but certain things were becoming evident. Even with custom orthotics and a wonderful PT....David's hips and knees were becoming more and more of a concern. His left hip seemed to be thrown as he walked and his poor little knees continued to turn in. Despite this though....the boy could practically run in his walker. He LOVES walking....until he doesn't and then he just sits down! The PT told me to have the ortho look at his legs again this time focusing on the hips and knees. By this time I had a new pediatric ortho. I just didn't agree with much of what the old one said and did and felt we just weren't being proactive enough with David. So I was excited to go to the new ortho. This one saw David several times, watched him walk, took x-rays and told me infatically that David did NOT need surgery. She said with the orthotics and "good" PT he would be as good as he would ever be. I was confused. The PT said no more and life went on with us watching David's hip being thrown more and more and his knees turning in more and more. I honestly thought after talking to two pediatric orthopedic doctors that they knew what they were talking about.

Now in all fairness....these doctors are good doctors but what I know now is that the surgery David had is a tough one. It is done at other hospitals (maybe even here in Wichita...I don't know) but Shriners is the only hospital that has perfected it. So I am not surprised that both of these doctors backed away from the surgery. CP kids are special kids and they need special care...especially orthopedically and I just don't think Wichita has filled that need.

It is about here that David's story gets interesting. My friend Thiry had been laid off from aircraft. She was sick of aircraft and finally decided what she wanted to be when she grew up. She wanted to be an Occupational Therapist Assistant (OTA). So Thiry began her journey which started with school. Lots and lots of school. Although school kept her busy beyond belief.....every once in a great while she and her fellow students would go out and let their hair down a bit. Lucky for me....Thiry decided to invite me a long on one of these social outings. It was here that David's journey began....as I met one of Thiry's fellow OTA's. Funny enough she lived right here in our home town. Jill already knew of David as Thiry had apparently talked about him in her class. So that evening Jill and I talked quite a bit about David. A few days later Jill called me and asked if I would be interested in her dad (who was a Shriner) sponsoring David to go to Shriner's Hospital. I had no words! I mainly had no words because the only visualization of Shriners that came to my  mind at that moment were guys in tassled hats driving little cars and motor scooters in the Old Settlers parade. She went on to tell me that Shriners Hospital specialized in kids like David with CP and that maybe they could help him become more mobile. They weren't just my imagined a fez and parades...and she had me at "specialized in kids with CP"! The wheels were in motion!

Let me say here that Shriners is just not well enough known in my opinion. Of course I had heard of Shriners Hospitals....but for whatever reason....I had always associated them with kids who had been burned. I later found out that they specialize in that too! I could pick a shriners fez out in a crowd but up until Jill's quick tutorial...I had no idea what the Shriner's world was all about nor what Shriner's Hospital was capable of doing.

I also have to say here that it was at this moment that I felt something slap me upside the head and scream loudly in my brain...."Don't pass this opportunity up!!!! This is a bona fide God thing!" It had to be as it started to be like pieces of a jigsaw puzzle coming together.

So let me tell you about what happened from this point. Jill's dad brought me a request of acceptance to Shriners through his sponsorship...which I filled out. It took about 10 minutes and then he came and picked it up from me and got the ball rolling. Within a very short time someone from St. Louis Shriners Hospital called me and asked me tons of questions over the phone. They also faxed me medical releases that I signed and sent back so that they could get David's complete medical history. Going through all of that took a bit of time...but not as much as you might think. They then called me back to let me know that possibly David was not a St. Louis candidate as David has a seizure disorder and St. Louis is really not equipped for such kids. Once I explained the type and frequency of his seizures they obtained more releases to get all of his neurological information. On receiving this and talking with Dr. Shah (David's neurologist) they were comfortable with David being a patient. So finally the day came that I received the call telling me that David had an official appointment date in January. It had been about 6 months since this had all begun and we had about another 3 months to wait but it was worth it to maybe get some answers! I am sure had we not had the seizure issue the time this all transpired might have been less.

Once you have a verified appointment there are decisions to make. Can you drive yourself? Do you need transportation? Once there do you need lodging? Shriners call's you numerous times before your visit to make sure you know where you are going and what you are doing when you get there. The local Shriners (in Wichita The Midian Shrine) then jump into action. If you are driving yourself...you receive a stipened to cover some of the fuel costs. If you don't have a car or can't drive.....the Shriners have vans that will pick you up and take you. Once there....if you don't have lodging, Shriners will set you up at Haven House with little or no cost to the patient. At every turn the Shriners went the extra mile. Because of all of this, before we even began the journey, thanks to Jill....I got to meet her dad Jack, her mom Linda and the lovely lady at the Midian Shrine...Judy! All have been wonderful!

We drove to Shriners on our first visit. My mother in law lives less than an hour away so her house was our lodging and we were able to make our trip multi-purpose. We had our appointment and got to see family too. Upon our visit....like I said in a much earlier blog....I knew we were in a good place. Shriners St. Louis is not a fancy place but it is a comfortable place and from beginning to end you feel as if the staff is truly invested in each and every child that walks through those doors. The first time you are there...it is reminiscent of the CP clinics in Wichita. The difference is....there is no down time and no waiting. From the moment we checked in we had about a five minute wait before we were ushered to the back. In the four hour visit we saw PT, OT, had x-rays and saw the ortho doctor Dr. Keeler. Never did we have to wait for the next one to come in and when we were sent off to x-ray to have a multitude taken....the results were back to the doctor before we were even back to the room. They obviously know the cardinal rule CP KIDS DON'T LIKE TO WAIT!!!!! The very fast paced setting kept David occupied and interested so we didn't have any escape attempts by walker or wheelchair. We were also given the opportunity to sample the hospital cuisine in the cafeteria. Again...nothing fancy....but very delicious and very reasonably priced.

By the time David had been seen by everyone, the x-rays were back and Dr. Keeler was giving me her opinion of Davids prognosis with and without surgery....I was sold. I really didn't know I was sold....but I was. Dr. Keeler I don't think is very old. Maybe in her early 30's. She is all business and pulls no punches. She is not touchy feely and she doesn't say what is easiest for her...nor just what you as a parent want to hear. She lays it all on the line. I appreciated this. When she told me that they would have to turn his hip bones in and put a plate in his left hip, turn his knees out and put four plates around each knee and then cut his femors to help his hamstrings....I could feel a sense of sinking hit me. She also followed this up with...."it is a very painful recovery!" The first words from my mouth were, "will he be able to walk without a walker?" Her answer was a definitive..."No!" But she followed it up with the fact that he would be extremely proficient on the walker and much more independent. The prognosis without the surgery would be that his hips would degenerate to the point that he would be in constant pain and eventually not be able to walk because of the pain, nor ever be comfortable sitting or standing. With all the information on the table...the choice was mine. She said she would let me think about it and to let the hospital know what I wanted to do after I decided. Before I even knew what was coming out of my mouth...I had grabbed her arm and said "We're going to do it!" Remember that God thing I told you about? Yeah...cause I have no idea that I had already decided.

I pretty much spent the rest of the day feeling as if my heart was in my stomach. I knew I had just put in motion something that was going to change our lives forever.....especially since after going to two doctors in Wichita and being told that surgery really wasn't an option/necessary I was sort of expecting a similar prognosis from Dr. Keeler. Boy was I in over my head!!! Funny thing too....she said that David should have had this surgery when he was four! Yeee gads!!! I never wanted to kick two doctors so badly in all my life! Why hadn't I known about Shriners seven years ago????

Once home we waited for a call from Shriners setting us up with a hospital date. Within the week we had one. It was April 11th. That same day I found out that I no longer had a job. Darn this economy. I was stunned but not the least bit upset. Something told me things would be okay and for the first time I think in my entire life....I was quite aware that I was NOT in charge. Heck...I obviously didn't even have a say as to the direction our lives were headed in. Kind of a weird place for a self-proclaimed control freak to find herself in!!!!

It turned out to be an extreme blessing that I was unemployed because the next few months I never worked harder in my life. Cheesecakes for David was the brainchild of mine that I thought up after someone said they wanted to do a benefit for us. I couldn't get my head around people just giving us money for no reason...but I was okay with them paying for a product. Cheesecakes for David took off beyond my wildest expectations and I was up to my eyeballs in cream cheese and sugar. In between times I was in constant touch with Shriners Hospital as well as the Midian here in Wichita. I had talked to a couple of people who had been down this road and who encouraged me on the way. Everyone with experience had told me that the journey was a difficult one but the destination was well worth the journey. I prayed they were right.

Originally we had been told that David would likely be casted after his surgery and that his legs would be fragile. That mixed with all the pain he would be feeling had me nervous. How was I going to get this poor child home in my van? I just knew he could not withstand an 8 hour trip in his condition. It was at this time I started checking and sure enough....Shriner's has an answer for everything. Between Judy at Midian and April at St. Louis and a new player named Sandy....before I knew it, our problem was solved. For cases such as David's, Shriners uses a group out of St. Louis (actually out of Chesterfield I believe) called Wings of Hope. Wings of Hope was set up to fly us to and from St. Louis so that David could fly home as comfortably as possible. Along with my constant communication with Midian and St. Louis, I was also talking pretty frequently with Sandy at Wings.

Now here is a little FYI for anyone whose child is about to undergo this surgery or a similar surgery at Shriners. As soon as you can, before the surgery....start getting things into place. Things you will likely need will be a special wheelchair, possibly a hospital bed and there is also a good chance you will need some kind of home health care and also PT. All of these things have got to be okayed by your insurance company and the doctors have to write scripts for all of them. A heads up on this is that the wording on those scripts has to be just so so or the insurance company finds it extremely easy to deny them. Shriners Hospital provides you with a personal social worker and the whole time David was there she was trying her darndest to get things in place with insurance denial after insurance denial. The only thing insurance readily accepted was for the wheelchair. Our little social worker even worked it so that we could get the chair through a Wichita company and have it delivered before we got home. As for the bed, the home healthcare and the PT....I had started working on those before Davids surgery with our advocate through the CDDO. With no luck before we left I was hoping things would work out while we were there. Our little social worker tried but no cigar. To the rescue....the Midian Shrine and their wonderful Judy stepped in. I knew that we could not bring David home without a hospital bed and not only did she get us a hospital bed, but bedding too. It was here when we got home so all we had to do was bring David in and put him in it! Home healthcare is still a bit elusive but I think I have found some ways around it....and David is actually getting to the point that we really aren't going to need it. PT will be our next hurdle and that will come after his next visit.

Once Wings of Hope flew us to St. Louis, Shriners had us set up in Haven House. It was a beautiful, comfortable place that we stayed at the two days prior to our check in at Shriners Hospital. When we checked in at the hospital....once again I was so impressed. Everything was so efficient and every doctor, resident and nurse introduced themselves and let us know what part they would play in David's surgery and recovery. Hearing the actual names for David's surgery's made me a bit queasy "Bilateral Verus Osteotomy", "Left Bega Procedure" and "Bilateral Adductor Tenatomy"....but I was assured time and again that Shriners were beyond experts in these surgery's. Even our own doctors here in Wichita confirmed this.

During surgery (five hours worth) we were called hourly in the waiting room with updates. After the surgery David was taken care of in the post op recovery over night. It was one on one nursing care where at least one and sometimes two nurses were at his side all night. When moved to the floor, the nurses were attentive and right outside the door at all times. The rooms were in a circle around the nurses station and a nurse could always see in the room. Along with patient care....Shriners also practices parent care which is a necessity since some of the kids are there for weeks at a time. Parents can stay in the rooms with the kids and there is laundry and parent rooms on site also.

When the Shriners staff realized that David was going into crisis (*****this had nothing to do with his surgery*****) and they knew he needed care that they couldn't facilitate.....they immediately had him taken by ambulance to St. Louis Children's. I will be forever grateful to Shriners for making that call and keeping egos out of it. With their watchful eye and amazing care....they saw to it that David was given the absolute best care possible both in and out of their hospital.

Even while we finished our stay at St. Louis Children's, Shriners called to check up daily. I heard from out little social worker Kimberly, Sandy from Wings and also April our care coordinator. I also hear from Judy at Midian who worked tirelessly to make sure that everything was ready for us when we got home. She even made sure that David would be picked up from the airport in Wichita by ambulance so that his vitals could be monitored and his trip to our house would be comfortable. It was amazing!

Now that we are home and I have had time to process this who leg of our journey....I have to say that it has been an impressive ride. Yes...there have been hitches and scares....none of them having a thing to do with Shriners Hospital or the care we got there and my hair is a little grayer now than it was when we started, but if I had to do it all over again....I would in a heartbeat. We are scheduled to go back May 25th (we will be driving this time) and I know that we will have many more trips to St. Louis in our future. I am good with this because I have seen from start to finish that Shriners truly do care and Shriners Hospital is an amazing place. Thank you all for all you did!!!!

If you have a child like David with CP or ortho problems and you think Shriners might be able to help them....find yourself a Shriner and get your child sponsored. Can't find a Shriner? Contact me and I will help you or you can call your local Shrine or Shriners Hospital directly. Your child....like mine deserves the chance to be as mobile and independent as possible and you and Shriners can give them that...so give them a call today! Shriners Hospital St. Louis!

Breathing Makes Everything Better

It is one of those perfect days when storms and rain are in the forecast pretty much all day. It is not going to be particularly cool...but the rain and storms make up for it. As I type it is raining and thundering and for the most part....all is darn near perfect in my world right now.

Last night I breathed my first comfortable breath in a couple of weeks. David did exceptionally well yesterday and I think I finally saw through others eyes just how well he is doing. In the last 48 hours....David has only had pain meds twice and one of those was plain tylenol. In light of that....yesterday he did 20 minutes of the dreaded tummy time, he spent several hours in his wheelchair and he actively worked with his speech therapist for almost two hours. His mood was great and only during tummy time and then again when getting him ready for bed last night were there any tears. What I am seeing though is amazing. Before Davids surgery his flexibility was very slim and his feet were always a purplish blue and cool to the touch. They had always been this way and when he sat in his wheelchair for a while or sat at the table for meals his feet would turn completely blue. His foot circulation was horrid. Since his surgery though....his feet are always warm and they stay a beautiful pink. It is amazing and everyone who knows David can't believe the change. His flexibility though is what impresses me. Before the surgery David really did little bending at the waste...now though.....being bent double seems to be his position of choice. He can sit in bed or in his wheelchair and bed completely over resting his head on his knees. I would kill for that kind of flexibility! His back and hip muscles are still pretty tight and painful but with all the tummy time....I am hoping that soon he will be able to arch his back and bring himself up with his arms. He has never been able to do this, but maybe now!

His speech therapist was very impressed with him yesterday. She said she couldn't remember when he had seemed as happy and relaxed as he was while she was here. He was very cooperative and he played and learned as I said....for the better part of two hours. The reality is we are only 16 days out from his surgery and he has made tremendous leaps and bounds even being held back a week with his extended hospital stay from pneumonia. Daily he fights through his pain and plays and laughs with the best of 'em! I am so proud of him and so grateful to Shriners and Dr. Keeler for getting him to this point.

Last night we may have found something that will help to keep him from getting leg sores. It was so simple....I just put long sweat pants on him. They acted as a barrier between him and his splints. This morning his legs looked much better. Luckily he has lots of sweat pants so maybe we are onto something.

Yes....breathing is good. I also feel a huge weight lifted off me knowing that there is money coming in again to help offset extra costs. Thanks to KEYN and also to people who have been patiently waiting for me to start baking again....there are cheesecakes again!!!!! I am thrilled to both be busy and also to be contributing to our finances again. It makes me feel whole and like I am taking care of my family. I have to say...that is a good feeling.

I can't believe that it is almost May! I really can't believe that it isn't even May and I already have had to have my air conditioning on. If David sweats at all he starts breaking out in heat rash and right now we don't need to be complicating any current situations so the air it is. This means my electric bill will sky rocket from the low $200's to the high $400's in a very short time. Another reason I am beyond grateful for the cheesecakes...they will make surviving the summer affordable. And thanks to a KEYN listener....I won't have to worry about mowing my yard this year (lawn mowers hate us in the best of years). He called me yesterday and told me he had a lawn service and although he didn't care for cheesecake...he would like to help....so he is taking care of my lawn this summer. I nearly cried as this is not a job I really thought about....but something that is so terribly necessary. Thank you Grizzly Bears Unlimited! You are awesome.

Well....David is enjoying this rainy morning and decided to take a nap. The temptation to join him is incredible....but I hear my kitchen calling me. Perhaps both mentally (for me) and physically (for David) things have turned the corner. Before long we will be back in St. Louis and hopefully get the "weight baring" okay and then Davids real work will begin. Good, bad or indifferent...this journey thus far has been amazing and I can't wait to see just how far or how wonderful it will turn out to be. And what have I learned so far???? Breathing makes everything better!

Blessed

I know over the years during the beginning of Lent Father always gives a talk about when someone comes up and asks us how we are doing....our response should always be "I am blessed!" Well I truly am! When I look around and take stock of my wonderful friends, family and the awesome people that reside with me in my home town....I absolutely could not consider myself anything but blessed. Add to all of this the new friends that David has brought to our lives and we are so beyond blessed it isn't even funny. In case I don't say it enough....."thank you" to all who have volunteered, prayed, talked me through paranoia and crisis, brought us food and who are like me......waiting to see David be the most independent that he can be. I am of the firm belief that angels walk this earth and I have had the privilege to meet quite a few of them.

This is such an interesting journey we are on. I know that it is full of a lifetimes worth of life lessons. Some days are good, some days are not so good but all days are a blessing...especially in light of the fact that we could so easily have lost David a couple of weeks ago. Today seems to be a good day. Yesterday wasn't too bad either. I got some peace of mind after going to the doctor and I also got some things in motion to possibly get home health care and also to get David something called "bunny boots" to help keep his ankles free from bed sores.

We made some awesome progress in moving David yesterday. His wheelchair transitions are getting so much easier and he is now starting to do some of his own transferring. While the pain is still obvious it is also obvious that he is trying hard to work his way through it. His upper body is so strong that he is learning to adjust himself in bed, in the wheelchair, etc to be comfortable. The only part of our day that is still HELL is tummy time. He hates tummy time with a passion and yet when we do it regularly (2x per day 15 min. each time) his pain seems to be less the next day. He had his first outing yesterday...albeit was only to the doctors office, but we figured out how to have him ride comfortably in the car and he really seemed to enjoy himself. He was very happy being outside and I'm sure simply being out of the house. I must admit it.....I enjoyed it too.

David was visited yesterday by an old friend of mine and David thoroughly enjoyed making a new friend. We also were blessed to have David's para from the school Niki volunteer some time yesterday evening which gave me some cheesecake baking time. All in all the day was a good one. The only down side was finding that I had $500 missing from my purse last night. I had every intention of taking it to the bank yesterday but after having David out at the doctors for awhile I decided that going straight home was our best bet. I figured that since I had an appointment today that I could just run by the bank on  my way. When I was preparing stuff last night for today I realized it was gone along with a $25 VISA gift card that I had been given. I have no idea when or where this took place but since I was the only one who even knew I had the money and where it was I simply just don't know what happened. At first I was literally sick and then I just thought that if someone went to the trouble of stealing it that they must have needed it far worse than I do. As disheartening as it was....we will survive and there are just too many other things to be grateful for. I refuse to let this one thing overshadow my blessings.

This morning my day started with David appearing to be in very little pain as we rolled him around getting him ready for the day. Then my phone rang. It was local dj's Don and Kim from KEYN asking if they could do a short interview about David. Of course I said "of course" and since I have had some wonderful phone calls. I can't thank these guys enough along with "whoever" got this ball rolling. I have had several orders along with an offer if I get too busy to use my own kitchen I can use their professional kitchen. Yes folks.....we are BLESSED and I will be the first one to admit it!

A Lesson in Gratitude...and Thank You KEYN!

From the outside looking in...it almost looks like I invent stuff to stress about. Trust me though....I don't. I will admit that at this point my anxiety levels have periods of being off the chart but then David smiles or laughs or "yee haws" and I remember that we WILL get through this.

Last night though....I started getting more concerned about his skin break down. I have duo-derm patches anywhere his skin is starting to look raw, but I keep feeling as if there is something I should be doing to prevent it. Again....no real instruction upon leaving the hospital. The instruction I was given was for when his legs and feet were swollen. That is no longer the case. I did put a facebook call out for suggestions. I got some great ones.....the best of which was "use the emerging bed sores as a way to spur on home health care coverage." I am on it! Then as I was getting David ready for bed last night....I noticed something in his lower regions that concerned me. One of his testicles does not look right. I can't imagine that the surgery would effect that in anyway....but one just isn't right.

When David was born and in the NICU....he had a testicular hernia. They did surgery and put in (as I recall) a mesh "ball"! At the time it was no big deal and way down low on the things that I was concerned about with his health. It has kind of gone to the back burner in my thoughts over the years. My question now is....is this just the result of the old surgery or is there something new and concerning going on? I have no intention of waiting and worrying further about something that may or may not be worth worrying about. So because of all this......David is taking his first outing today to the pediatrician. I think we are ready for this and with this trip we will kill two birds with one stone as I will have the doctor look at his sores. It will be a win win for us all. Hopefully this is nothing and it will once again be stored in the recesses of my mind....seldom if ever thought of again.

You see what I mean??? I am still waiting for that other shoe to drop. Outside my neuroticness (making up words again) David seems to be much better today. The only REAL issue I am having with him aside from the bed sores and the pain......is that he keeps sitting up straight in bed and then bending forward. While I am more than impressed at his stunning flexibility....I know that the reasons behind this behavior probably have much to do with his comfort. He still hates being on his stomach and fights me every second....but I think his bending forward is possibly a stretch that makes him feel better. Once in a upright position it is visibly obvious that lowering himself back down into a lying position is painful. He will do it, but he does it slowly and cautiously and if forced in the slightest will scream in pain. Last night during the night I had to get onto him numerous times for sitting up and trying to sleep lying forward....partly because it hurt me to see him sleep like that and partly because I can't imagine that it is good for his back. Maybe Dr. P can give me some guidance today....God knows I need every pearl of wisdom possible.

Aside from worrying some....I am feeling better. Yesterday I had my first volunteer come by. Wendy is a lady who is one of Z best friends mom. She stood watch on David and did a few little odd jobs while I took two misbehaving dogs to the vet and ran a few essential errands. It was wonderful to be able to mark some things off my "to do" list and also to get out of the house for a bit. I hope Wendy knows how much I appreciated her being here. It is such an "out of my box" type thing to have people come into my house and "help" me (Berty and Thiry don't count). I just know that after this experience.....I will be spending the rest of my life giving back. You have no idea how humbling this all can be and eye opening. Sometimes you have to throw upbringing and pride aside and just allow others to step in and help. Despite how much I wanted to believe differently....I simply can't do it all and that which I can't do will drive me insane until it gets done. Having help means I can keep my sanity and survive the sleepless nights and the days when pain rules David's day. It also insures that I have the time to do basic PT with David, give him baths, make sure he gets tummy time in and does his transfers to the wheelchair. Believe it or not...those all take a huge chunk from the day. So I admit it....help is necessary and I am truly grateful. I guess you could say that I am getting a major lesson in gratitude!

And speaking of grateful....as I was typing this....my phone rang. It was someone ordering cheesecakes. They had just heard about "Cheesecakes for David" on local radio station KEYN. While talking to this individual my call waiting went off. And then it went off again! Apparently the minute they heard about David they started calling to order. I am speechless. I have no idea who put this in motion but you can't imagine how grateful I am. I was wondering if after our hiatus if anyone would be interested in ordering again. Thank you whoever did this and thank you KEYN for telling the area about David and our cheesecakes!

Yesterday....I Forgot to Breathe

I am constantly amazed at how much life can change in a 24 hour period. You can go from completely happy to completely sad, from holding a grudge to forgiving, life to death and in my case go from feeling like the sky was falling to feeling like things are going to be okay. To be truly honest....I did not reach this destination without the help of two very kind individuals who talked me off my self imposed ledge and gave me back some peace of mind last night. I told them both my thoughts and fears on the whole situation. Mainly my fear is that after all this pain and suffering David has gone through that because I got no real training with him....that I don't have the first clue of what I am doing and therefore I could cause him more damage or at the very least unnecessary pain. I have no idea what I am looking at when I see his hips and legs. To me they look like they are healing okay but I really don't know for sure. The thought of him having to go through another surgery to fix something that I might inadvertently have caused was eating me up inside.

The first individual actually came and looked at David. After a once over and some gentle physical therapy, my mind was eased that we were on the right path. Apparently everything looked really good and I found that we didn't have to constantly keep his legs elevated and that we were fine to go without the stabilizer permanently and the splints could be used only at night. That was a relief. The only somewhat bothersome finding was David's left foot that seems to just lay to the side. He obviously has feeling in it and the doctor originally told me that this would take care of itself. However it is believed that the foot should continue to be watched. The really great thing is that even without his feet elevated...they still look pretty pink and the circulation seems to be much better. Thank God!

The second individual talked to me by phone. This person gave me hope for future medical help this summer and with somewhat of a medical background they gave me peace of mind about my parenting skills being just as important as any medical skills and assured me that I was likely doing things right. Both individuals made me feel better and also made me realize that sometimes a mother can be as beneficial as a doctor....especially when she knows her child well. Thank you both if you are reading this.

Today is also a better day as David appears to feel much better. Maybe it was the putting him on his stomach yesterday. He was crying so much and appeared to be in so much pain that I called Shriners. They asked me if I had been putting him on his stomach to help stretch his muscles. It struck me that maybe someone had said that to me at the hospital. I said no and they told me to start. It was literally HELL! You could tell that laying on his stomach was stretching him and hurting him. Before surgery he was no fan of his stomach and now it was pure torture. Even through all the crying though...I managed to get two "tummy times" in for about 15 minutes each. Perhaps that is why he is feeling better today or maybe yesterday was just a bad day for him which translated into being a bad day for me. Whatever the case....this morning he is happy and the diaper and bed change only took about 3 minutes. That is definitely a record for us.

For anyone thinking of taking their child to Shriners and having surgery done....don't let our experience scare you off. Ours was not the norm by any stretch of the imagination and honestly....if I had it to do all over again....if it meant he could be more mobile and independent....I would do it in a heartbeat! The reason I am so flying by the seat of my pants right now is because when we were at Shriners...we were about to go through the physical therapy and the therapist was going to show me everything I needed to know to work with David during his recovery. It was at that point that he got so ill and had to be transferred to St. Louis Children's. Once out of PICU they did put us on the Ortho floor but because his surgery was done at Shriners, other than take care of his health...they did little else. One day a PT came in and asked me if I could lift David from his bed to his wheelchair. I told her that I thought I could. She asked me to show her and after I did she left the room never to be seen again. I asked the nurse where she went and upon looking at the charting notes it said that since "mother can lift child to wheelchair"......her work was basically done. So the extent of training I got on David was the 15 minutes the PT at Shriners saw him before he got so sick. Most cases are not like that and the parent is sent home with a great deal of information on what to do. I just missed out.

At any rate....today I have had sleep. I am working through my insurance issues and my home health care situation and David is feeling much better. To top it off I actually have volunteers who are willing to start coming in so I can do errands like taking my dog to the vet, picking up Rx and paying my van payment. It is also looking like next week I will be back in the saddle again baking cheesecakes. Things are much better today. What I am learning is that in most cases when things look bad....if you just stop and breathe...things always look better. Yesterday I just forgot to breathe!

Perspective

Perspective! I believe that will be my word of the day! Perspective is hard to obtain, harder to maintain and very easily lost in a trying situation. Currently for me...it is an uphill battle. I find myself redirecting my focus and allowing myself to worry and nitpick about things that have nothing to do with the big picture. My house is one of those things. Since Z decided to paint...I see so much that is wrong with my house and needs repair and I find myself starting to obsess about it. My older son has something wrong with his chest and refuses to get it checked out and my dog has what I am sure is kennel cough. Some of these I can change, some I cannot....but all have me stressing to the point of irrationality simply because perspective is not clearly in hand. I know I am allowing myself to get so out of focus because that which I have been focusing on and still need to be has been so traumatic. I can almost feel myself pulling in and going into secluded, nitpicky, pure bitch mode. I am fighting it! Honestly I am.

Probably the thing most keeping me from going to the dark side is realizing how great David's needs are right now. I am trying very hard to focus on his comfort along with the things he needs to recuperate to the fullest. Feeling like I am not sure exactly what those needs is a bit daunting....but I am hoping as time goes on I will get it all figured out. I am assuming that true prospective in this situation would be the realization that I don't have all the answers but I will learn as I go and to reach out to all the information available either through the internet or those with past experience.

All this being said....there is much I have already learned. The wheel chair does work if we don't have the stabilizer between David's legs. He seems okay today without it so we are going with that. David's comfort level with his back is all over the place. Sometimes it appears to be a good 9.5 (with 10 being the best) and other times we are doing good to get a 2.5 and that is accompanied with a lot of tears. In all of Davids years I don't think he has cried as much as he has this weekend. He is so uncomfortable. I am wondering if putting a heating pad on his back might work? I am also thinking about massage as it appears to be spasms that he is dealing with. However....I am not sure he would hold still for massage. I guess I will be calling Shriners today and hopefully getting some answers.

I have hopes today to give David a bath (a sponge bath that is) and clean up our surroundings. We have a small space in this room to start with and with Z's desire to continue his self imposed remodel....things are still a mess. Perhaps a clean space and and clean body will help him feel a little better. I sure wish I had a time table on his pain. His tears are killing us both.

Well...I am sure today's blog is all over the place....just like I am. What do you expect though....it is a Monday after all?! There is much to do and very little enthusiasm to get it done. I will however fight through this melancholy and get to work. Pray that today goes better than it appears it might. Onward and upward....let this day begin! Perspective!!!!

My Less Than Attractive Side....

I know those of you who know me will find this hard to believe.....but I have a less than attractive side and I am afraid this whole ordeal is bringing it out. It doesn't help that at night my body is trying to reintroduce itself to sleep, we have a new puppy who cries at night incessantly, David wakes up two or three times a night crying in pain and to top it off the brief spans of sleep that I do get are filled with nightmares of the other shoe dropping....hard! It is taking everything I have to stay focused. Yesterday I completely gave up and did as little as I possibly could. Things irritate me in a major way (not David...just everything else) and I find myself as I said yesterday......very gritchy.

I can't stand clutter, dog hair or things left undone and my house is currently filled with all the above! Now is where you will find out just what kind of and unattractive person I really am. So when we left for St. Louis, Z was left home alone for the first time. Now a lot of parents would have to worry about just what shape their house would be in and who their kid had had in while they were gone. Not me! Instead of partying, running around and getting into trouble.....my 16 year old decided to paint the entire house! Yep...that's right! In the beginning I think he had a little help from Thiry and Berty as everyone was sick of me complaining about how bad I thought my living room looked. In fact...I had actually had some grandiose ideas about painting it before we left for St. Louis. It obviously didn't pan out. So they decided to surprise me when I got home. However, Z took things into his 16 year old hands and the painting project took on a life of it's own. He picked out all the colors and did not only the living room, but the basement stairway, the downstairs bathroom, the upstairs stairway and my room. Most he actually completed, but some are still left undone as he ran out of time and had those days when he was really sick. Now here's the deal. I love the thought that went into it, but he is 16 and things were cleaned up and put away like a 16 year old would do it. Now, woodwork needs to be cleaned and things are piled in the wrong rooms and some rooms have yet to be completed and instead of being grateful that I had a son that used his powers and free time for good instead of partying and me coming home to assess the damage....I am irritated, snappy and not very pretty! Yes...I do know that makes me a colossal bitch!

I think much of my issues stem from the fact that I am just tired. That is something that no one but me and time can fix. I am thinking that it is just part of the recovery period for all of us. Again...I should not complain because when I do sleep...it is without pain. David is the one suffering here....not me. I am simply making everyone else suffer because of my anal retentive attitude over the piddly things in life. It truly is ME and not THEM!

I am finding as the days progress....I know nothing! In fact....less than nothing may even be more accurate. I found myself wishing last night that we were recuperating closer to St. Louis so that he could regularly see the doctor and make sure I am doing everything right. I don't know how anything is suppose to look nor how much I am suppose to work with his range of motion. Dr. Keeler told us the Monday after his surgery that we no longer had to use the foam stabilizer between his legs if we didn't want to and that the splints only needed to be worn at night. While I am trying to ween him off the stabilizer....we keep going back when he cries because his legs are in pain. It appears to me to be almost a necessity when transferring him or adjusting him but then he doesn't fit in his wheelchair with it.

As far as the splints go. The minute I remove them he starts picking at the steri-strips. He has already ripped some off on his knee causing it to bleed and the scar to look yucky. Until the steri-strips fall off...the splints seem to be a must. So I try to give him periods of time without the stabilizer and then times where I take his splints off and work with his legs (those are no fun for either of us) and then times when we are in full leg gear. Hopefully I am doing all of this correctly. At the same time I am trying to ween him off the tylenol with codeine (they only gave us a Rx for one bottle) and get him switched over to plain tylenol. I don't want to be to the end of our bottle and his pain to be too great to make the switch then. Again....just flying blind here.

David has really been pretty good and much happier than I anticipated. He of course doesn't like having his legs messed with but if I explain to him ahead of time what I am doing....he is fairly tolerant. I try my best to get him through each transition, reposition and diaper change as quickly as possible with as little pain as possible but it is never quick enough for either of us. Thank God for that little yellow sponge called Spongebob. He seems to be capable of redirecting David fairly quickly....which makes us both happier.

I have noticed that David's skin around his ankles seems to be breaking down a bit. Thank goodness the nurses saw this one coming. They sent me home with some kind of derma strips that can be placed over the skin sores that will protect them from getting worse. So far I think he is up and about enough that his legs, back and rear end have remained sore free. It is a lot to keep ahead of but for now I think we have done okay on that front.

Our next appointment in St. Louis is May 25th. I know that if these weeks go like the weeks before his surgery....they will fly by. However....at this point....they can't go by fast enough. Now that enough time has passed for me to know the questions to ask....there is no one to ask the questions to. I am thinking that I will have to call Shriners tomorrow and start asking some questions.

For those reading this who at sometime may themselves go through this....a couple of suggestions. Make sure that the wheelchair is measured ahead of time and is wide enough to fit any casts, splints or other leg wear needed for the recovery. If the chair is not wide enough....the circulation will be cut off in the upper legs and it will end up causing more pain and issues than it helps. Second....be very careful about any hospital beds you get. If you can get one where the rails are a one piece plastic rather than the metal rails with gaps...do so. We found this morning that if David's bed is adjusted in a certain way...he can get his head caught in the rail as he likes to slide to the side. We have had to readjust everything which leaves him less comfortable but more safe. These are things that you need to be looking into several months before surgery as it takes at least that long to get everything processed and find out if your insurance will cover them. If for some reason it doesn't, there are other avenues to go down depending upon where you live. When in doubt though....go to your local Shriners and talk to them. If they can't help(I haven't found anything yet that they can't help with)....they can often point you in the direction of someone who can.

So there you have it. I am gritchy and anal and a colossal bitch...BUT David is doing well and we are just navigating over the speed bumps as they come. On a scale from 1 to 10....we are infinitely better than this time last week and trust me....I haven't forgotten that. I am hoping that this week will be the week that I get organized and get back into the swing of things. Maybe then the gritchiness will pass and we will all be in a better place!

Balance

I will be completely honest....I am a bit gritchy today. I think my body is finally telling me that it is rebelling against the last two weeks. During the night last night I woke up with a horrible headache. Just as I got back to sleep....David woke up crying. I think he is pushing himself too hard during the day and causing himself to maybe cramp up. The doctors had told me originally that David's worst pain would be in the first 72 hours and it would be mostly muscle spasms from the stretching of his hamstrings. Thanks to his baclofen pump he didn't seem to have muscle spasms or at least he didn't make me aware of them. Of course the first 72 hours he went from being so out of it from valum to so sick from the infection that he didn't really have a lot of time for muscle spasms. Now though it seems he may be having spasms....not in his legs, but in his back. At any rate....David and I neither one got much sleep last night and today my lack of it is showing in my attitude. Z has already pointed my less than pretty attitude out to me several times today! Grrrrrrrrrr

Davids spasms seem worse when I transfer him from his bed to his wheelchair or vice versa....the back of the bed or wheelchair must be straight up. If it is inclined at all he just screams. After the transfer then he can slowly go down and be fine, but he will just hold himself straight and arch his back otherwise. I am thinking that he is having pretty severe  spasms. I also think that because of the hip surgery....it pulls those hips when he tries to transfer flat. The funny thing is....once he is in bed and relaxed in a slightly tilted position, he then does sit ups on his own. He will pull himself to a 90 degree angle and then lay himself flat again. He doesn't seem to be in pain then. I have no idea what is going on.

When we left the hospital...the doctor said that David needed to spend at least an hour per day in his wheelchair. She suggested to spread it out over three different times. David loves being up in the wheelchair (once he is there) and yesterday when I put him in it in the morning he was there for about 3 hours. He has learned to wheel himself but unfortunately my house is a bit small for him to have too much leeway. I am really not a fan of the wheelchair as the width barely accommodates his legs in the splints and it doesn't allow him to sit fully back. Also the recline doesn't work well causing one side to be off and his back to not be even if reclined. Luckily he refuses to recline much. Perhaps when he is without his splints during the day the chair will accommodate him better. As it is though...it gets him out of bed and up and moving and that will make both him and his doctor very happy.

The hospital bed has been a Godsend. Without it, transferring David and giving him any sort of comfort would be extremely difficult. Being able to have his bed at close to a 90 degree angle when we transfer makes it so much easier for both of us. Also...being able to keep his legs elevated is wonderful too. Speaking of his legs (and also his feet) so many people have commented on how great his feet and legs look. David has always had poor leg circulation and his feet are always cool to cold and bluish purple....especially if he has sit for any period of time. Since he has had this surgery his feet are always warm and a beautiful pinkish color. Of course his feet are reclined most of the time....but for now...his feet look awesome.

I must thank some people here today. Yesterday was once again a day filled with friend blessings. Thiry was here early and watched David and vacuumed and mopped my floors (still picking up after a week and a half of 16 year old boy home alone) while I ran some errands. It felt so surreal and a little uncomfortable being away from David for any period of time and also a wonderful relief to be outside a hospital. Then yesterday afternoon we were visited by David's teacher Mrs. Leonard who brought David more get well cards from the kids along with a Spongebob dry erase board. David was extremely glad to see her. Then Cassie Allen came by and she had purchased for me a calendar organizer to organize volunteers to come in. She also graciously agreed to organize times for me. I told her that as of Monday I would have a better idea of how much help and what hours I would need the help. The reality hit me yesterday that I am going to have to get back to baking cheesecakes again to help out financially and so having people come in and watch him while I bake would be so helpful. And knowing that the scheduling is taken care of is amazing. I then had a friend let me know that he was going to be firing up his smoker and that some pork loin was going to be coming our way. I can't tell you how much I love pork loin and fresh out of the smoker will be so awesome. And finally....my wonderful friend Robin and her beautiful daughter Becky and granddaughter Paisley paid me a visit. They brought me days worth of homemade food that had been frozen and ready to put into the oven. Cooking will be taken care of for a while. Thank you all! You have no idea what all of this means to us. I am still trying to find the balance since 90% of my day is dedicated to David. This means that other things are going to fall to the wayside. Knowing that people are willing to help me keep my head above water is amazing! Balance...that is my word for the day!

Well...as you can see I actually have very little to be gritchy about. I am sure it is nothing that a weeks worth of sleep and a vacation in the Jamaica wouldn't fix. I would even settle for a nap and an hour to sit in the sun and read my book. It will come. Until then...I am grateful for ever single second I have with David because we all know...things could have truly gone a different way.

There's No Place Like Home

I awoke in my own bed (well the bed I am currently sleeping in taking care of David) but at least in my own house. It was a glorious feeling....and for those of you wondering if I slept????? I slept so well that the whole house overslept. Z had about 15 minutes to get out the door this morning. Yeah....I slept!

It doesn't really seem like the same universe where a week ago we almost lost David. My world then was no sleep and watching monitors like a hawk. Every time his numbers went too high or too low my stomach did a very uncomfortable flip. He was one sick little man. Thanks to  lots of prayers and some excellent healthcare.....that day is now but a memory. This morning David is in his new hospital bed in his new room....in his old home. He has no temp and he I believe...is very happy to be home.

Yesterday was a long day but one I had awaited with great anticipation. We were picked up from St. Louis Children's and on our way to Spirit field at 7 a.m. I of course had been awake since 4 a.m. after sleeping only a couple of hours. Lack of sleep this time was due to shear excitement. A new chapter was about to begin and I simply could not wait. Once at the air field...we were a little early so David got to relax on a stretcher and I got to pick through some Build-a-Bears that had been donated to Wings of Hope by Build-a-Bear. The lady told me to pick two. I have never done the whole Build-a-Bear thing, but I had a ball picking out two new additions to our family. We now have a puppy and a mouse. What can I say? It killed a good half hour.

I was greatly dismayed and slightly alarmed when they told me that we would be flying back in the same five seater torture device that we flew in on. It didn't matter though. I think I would have strapped myself to a wing if it meant getting home yesterday. Once the pilots were there we loaded up. They had actually removed the seat that I road in on and in its place was a gurney in which David was strapped into. I sat in the back seat (David's seat on the way out) and then there was room for a nurse and two pilots. I somehow was going back to Kansas with more "stuff" than I came to Missouri with. We had barely made it all fit on the flight out, but with some strategic maneuvering....we made it work. This time I decided to play it ahead of the game and I took two dramamine before I boarded. I gave David one two.

Taking off did not seem to bother me at all this time. I watched as we raced down the runway and slowly ascended into the air. Quickly the buildings became smaller and smaller until St. Louis looked like a little toy city. Davids vitals were monitored the whole way and after about 15 minutes into the air....he was out. I decided not to take any chances and said a rosary. Since last Friday...my praying skills had diminished greatly. I had resorted to one word or short phrase prayers. "Help!", "You know what is in my heart!" and "Please let him be okay!" These became the extent of my prayers. So being once again on the plane from hell...I decided some good ol' fashion rosary sayin' was in order. I fell asleep praying. Mom always said that was okay, because when you fall asleep praying....the angels finish your prayers for you. I am assuming not only did they finish them...but God heard because we made it safely back to Wichita and solid ground. The only tough spot (which wasn't even as scary as when we descended into St. Louis) was our descent into Wichita. The wind was a little high and our little tricycle with wings did quite a bit of bouncing. The end result though was....we were home!!!!!

We were met at Yingling by Sedgwick County EMS. They loaded David into the ambulance (along with all our stuff) giving me no end of crap about all my stuff and they brought us home. David loved the ride and every familiar land mark, street sign and building made my heart sore just a little more. We pulled down our street just as every neighbor in the hood was out. I am sure they heard David before they saw him as the EMS attendant was taking great delight in making him "yee haw" for him. As they pulled him out of the ambulance....David was sitting like a little king on his stretcher and he waved to all the neighbors as they watched him being taken up the driveway.

We had not been home more than a few minutes when people started showing up. It was a blessing as I had to get Davids prescriptions filled and I was having a difficult time getting my mind organized. Thiry watched David while I went to the pharmacy and picked up a few necessary groceries. When I got home....more people had arrived and the house was buzzing with activity. It felt so good to be home and I think after almost two weeks with no one home....Z was very happy to have all the commotion.

After everyone left and we all settled down last night I tried to plan out life for the next two weeks. I can't! I have no idea how the next two weeks will go. I am not even sure of the next two hours. I have much to do and a great deal of it will revolve around David's care. However...this morning I changed and moved David by myself. It was slow going because of his pain....but we succeeded. Next hurdle will be seeing how easily I can transfer him to the wheelchair.

I have many things I need to accomplish today and Thiry said she would come by and watch David while I ran to the store and did a couple of things. I have no doubt that I will get into the swing of things fairly quickly. It is just so good to be home and so wonderful to be starting down the path to David's recovery and new more independent life! Yeah....it's true! You gotta go through what you gotta go through....to get where you need to be! And boy are we ready!

The Journey Continues On........

I look back at the last week and a half and all I can say is...."WOW!" It has been a ride of epic proportions and one though necessary, I wouldn't be sad if I never had to take again. I will admit in light of last Friday's terrifying down turn and some of the less than stellar days that followed....I did question a time or two whether allowing David to have this surgery was a good idea. A couple of times it felt as if the surgery had put his life in danger. That of course was not the case, but if felt that way. Several times I went over everything in my head and second guessed myself wondering if I had just decided against the surgery or at the very least put it off....if things would have been different. Then I remembered....it has never been my choice to make. Not since the moment Jill Cook told me that she had talked to her dad about sponsoring David to go to Shriners. From that second on....God was in the drivers seat and I was merely along to sign the paperwork. David was suppose to have this surgery and for whatever reason....all the other events that have transpired were suppose to happen too.

Even though being at Shriners seems a million miles away right now....it was a wonderful  experience. Dr. Keeler was very good at what she did and David's hips and knees look awesome. The incisions are beautiful (if that kind of thing can be considered beautiful) and there is absolutely no redness or puckering. The staff at Shriners were amazing also. I have spent plenty of time in OR pre-ops and post-ops over the years. Never have I seen such an efficiently run nor such a patient/family oriented staff. Before surgery ever began...I was introduced to every member of the surgical team. Each member took the time to speak with me and tell me what part they would be playing in the surgery. They asked me David's likes and dislikes clear down to the kind of music he would like playing in the OR. Never has that happened before.

After David was taken back we were directed to the OR waiting room and told that we would be called in an hour with an update on his condition. At exactly one hour on the dot...they called to give me an update and then gave me the next time that they would call. This happened until the surgery was complete. When the surgery was over and David had woken up enough in post op...we were then allowed back to see him. The nurses were truly lovely to my mother in law and I and after my MIL left....they allowed me to stay several hours after the recovery  room visiting hours were up. When I eventually was asked to leave....they were more than understanding when I continued to call to check up on him and when I even snuck back down a couple of times for my own peace of mind.

Once on the floor...the floor staff were just as nice as all the others. With it being a smaller setting, the nurse to patient ratio is more proportionate which doesn't leave you with the feeling that if you have to step out....no one is paying any attention to your child. In fact...the nursing station is directly outside all the doors as the rooms are built in a circle around the station. The nurses are constantly checking not only on the well being of the child...but also the well being of the family. It is really a refreshing change from what you see in most hospitals.

As I have said before...I must give Shriners a great big hand for being crucial in helping to save David's life. David's life threatening condition was brought on not by anything that Shriners did wrong, but by the fact that he aspirated both food and drink when he was coughing while eating. I wasn't even aware it had happened until he was suctioned. Once though, they realized that David's health was compromised and even life threatening Shriners acted very quickly calling St Louis Children's Hospital to come get him and take up treatment where they had left off. The transition was seemless and the transportation was quick (even though it didn't feel like it at the time). Before we left Shriners the nurses, social worker, respiratory therapist and physical therapist were all there asking if I needed anything and trying to explain to me exactly what was going on. They were kind, compassionate and amazing....not things you always find in hospitals these days. I can't thank those at Shriners enough for all they did and for what I have every faith they will continue to do in the future where David is concerned.

We were doubly blessed with healthcare here in St. Louis. When we were brought to Children's...I didn't know what to think. The Children's transport team though were fabulous. I know that is a bit of an over the top word...but the job they did was over the top. They saved David's life. The team worked quickly to get meds and blood into David and somehow we made a close to half hour drive in just a matter of minutes (in traffic no less). Like I said...they were fabulous! Once at Children's...as we were ushered into the PICU, I knew immediately that David was in excellent hands. Three nurses gathered around him and began cleaning him up, changing his dressings and making him comfortable, while a doctor began asking me questions and allowed me to bring her up to date on what was going on with my little guy. Within 30 minutes David was showing signs of improvement. I was thankful beyond words....especially after I heard the doctor talking to someone at Shriners and telling them that another hour and they would likely have lost him. THANK YOU THANK YOU THANK YOU for helping us not to have gone down that road.

That night the PICU nurses and staff were wonderful. They constantly asked if I needed anything, they answered any and all my questions and a nurse was never more than 10 feet from him....always with a careful eye cast close by. It was amazing to know that my child was in such good hands.

When moved to the floor (10 W)....I was and still am....beyond impressed. Floor care is usually not as good as the acute/we need you right now care. Usually it is because the nursing staff is out numbered by the patients and the ratio is often 5 or more to 1. I have no idea what the patient/nurse ratio is at Children's but never once were we left hanging or waiting on anything. The nurses were punctual and efficient with everything from vital signs to meds and the bedside manner of all of them was friendly and professional.What I really liked too was that the staff actually listened to me and realized that after 11.5 years....I had a little working knowledge of David and his actions and reactions. They also realized that I wanted to be hands on in his care as soon, I would be the main one/often times the only one taking care of him. I would ask them to show me how to do certain things......watch them do them.....an then take over myself. They were more than willing to take a supervisory role in Davids care and allow me to put into practice how to turn, change and transition David. Without this experience....going home might be very difficult. They have been amazing. 

So today we go home. A part of me wants to grab David and run forward to this new experience. I actually feel ready for what lies ahead and I am confident that David is going to meet and exceed all goals set out for him. He will be my priority until he does. I won't lie though...there is also a part of me that is a little scared about what lies ahead. In just a few hours I will be on my own. There will be no nursing staff to fall back on and no monitors to warn me of anything. It will be just him and I and my instincts. It will be an adjustment but something I do think that I am ready for.

The time since we first stepped aboard that little five seater plane to come out here has been life changing. So much has happened from the emotional to the physical....that I feel like a different person. I honestly feel like I am on a different path now. It is a path I never saw coming but at the same time I am so excited to be on. I have absolutely no idea where I am going.....I just know I am ready. I see the same thing in David. While David has always pretty much understood anything I have said to him....he hasn't always listened. In the last few days...this has begun to change. His body has gone through a lot and like me....so have his emotions. While there are times he is in pain or frustrated and this comes out in his emotions with crying and even a little bit of aggression.....when I grab his hands and start explaining what is going on....he actually stops and listens. He acts on my words and he understands. I have explained that the only way to get through his pain is to move. He has to get in his wheel chair even though it hurts and he has to move in bed. He is more and more willing to allow me to put him in the chair and in bed...he is sitting himself up (this in itself is painful because of his hip surgery) and when I have to move him from side to side to change him or reposition him....he actually helps by grabbing the sides of the bed and doing a lot of the work himself. It is amazing and yet I don't know why I am surprised. This is all apart of the  determined attitude and spirit he has shown since he took his first breath outside the womb. The fact that he is listening and working so hard tells me that Dr. Keeler may be very surprised in May when she sees us again.

I already have his next appt. scheduled (May 25th). He is to be non-weight baring until that point...which means bed and wheelchair only with basic muscle manipulation. The terrible muscle spasms that generally go along with surgery have been somewhat alleviated by David's baclofen pump which means working with his muscles and doing range of motion will be much easier. I plan by May 25th to have David over much if not all of his pain and have his muscles to a point where he will be ready when Dr. Keeler gives us the okay....to start hard core physical therapy and be able to start weigh baring immediately. My hope is that by the time school starts....David is already showing a more independent and mobile life style.

So there you have it! As of 12:45 p.m. today....David and I will begin the next leg of this journey. I am hoping that the REALLY hard part is over and that from here on out....our hurdles are much smaller and much more quickly cleared. To the staff at Shriner's and also at St. Louis Children's I say thank you! You have been wonderful and you have changed David and I both. To all my family and friends and even complete strangers who prayed us through all of this and who constantly passed on kind words and good thoughts....you will never know how much this meant to me. And finally....for all the angels who sent other angels to me and the angels that just showed up.....you may not know it, but you saved me. You held me together and kept me from crumbling at a time when David needed me most. Thanks are not nearly enough....but it is all I have and it is very much heart felt. Thank you! 

And now, the journey continues on.........

What a Little Sleep Will Do

Oh Lord...I am trying! Actually I believe I am being tested. My faith is truly being tested and I am afraid I am failing. Every day there is something new or new rules or new guidelines or new doctors. Every night about 8 p.m. David starts having issues. Either his heart rate spikes or his temperature does. As of the last day or two...his blood pressure has begun spiking too. We have also thrown in a couple of seizures for good measure and a real good choking spell tonight along with congestion out the wazoo and with all of this.....what you have is a recipe that ensures Mom will never close an eye to sleep again.

While I am tired....I know that what I am going through is nothing compared to what David is currently and has in the last week gone through. His bones have been cut and twisted. Plates have been inserted in his body. He has lost blood and vital fluids and quite honestly.....his body has been through hell. Through it all though....he can still manage a "yee haw", he seldom cries and for the most part he has maintained a good demeanor and can still be distracted by Spongebob. With all of this....I have no room to complain at all.

What a difference a few hours sleep can make. The first two paragraphs were written last night about 12:30 a.m. when once again sleep looked like an unreachable shiny object in the distance. However, after having a mini seizure and then a scary choking incident followed by a panic attack....he settled down and drifted off to sleep. His heart rate and SpO2 sats were very good. His blood pressure was a little high but he is in a lot of pain. When I was sure that he was doing well, I decided I had to do a couple of basic hygenical (is that a word?) things for me. I have not left his side since we got here and I was out of clean clothes so I left him in the care of his nurses and went downstairs and did laundry. That was quite a leap of faith for me. Okay to be honest I ran back and forth from the LL to the 10th floor several times...but hey....I made the effort. Once the clothes were clean I decided that I couldn't put clean clothes on a dirty body (and yes....I was smelling again) so I took a shower!

The possibilities of sleeping were still iffy as I donned clean clothes, but at least if I had to spend another night awake....I wouldn't offend myself or those who had to be in the room with me. Luckily even after laundry and a shower he was still sleeping comfortably and his vital signs were good. I decided to try the whole sleep thing. I dozed off immediately to be awoken within five minutes with the alarm going off because his sats dropped to 85. It wasn't real...his little finger thing was coming off. We got that fixed and once again I laid down hoping I could drift........ I was out. I don't remember anything until the resident was waking me up this morning about 6 to talk to me. I had slept from about 1:30 a.m. until 6 a.m. I felt like a completely different person. Yay me! Today maybe I will be a little more ready for the day.

Yesterday was a hard day for David. I think this was the first day he REALLY felt his pain. Dr. Keeler had told us that we could keep his splints and leg wedges off him during the day. I don't think he is ready. We tried putting him in the wheel chair yesterday with no leg support and he was in agony. He was screaming and hitting and biting. I have never seen him cry like that. He literally begged me to put him back in bed. I explained to him that putting him back in bed would hurt just as bad and that if I did he couldn't hit, pinch or bite me. He shook his head "yes" that he understood. I then proceeded to lift him back into bed. He whimpered and cried a bit...but there was no fighting. He was so glad to be back in bed.



After getting him comfortable I reassessed the situation. It was then that I decided a couple of things. First I decided that any transfers or body adjustments in bed were going to include his splints and wedge for the next two weeks. I also decided that pain meds would be in him for at least 20 minutes before we decided to do any moving. I am also learning that his back is very much affected by his hips. When he is transferred back into bed his bed has to be sitting up pretty straight...otherwise he is in a lot of pain. Thank God for all those who helped fight to get him a hospital bed. (By the way...it HAS been delivered!)

I realize when we get home that we will have to work to get him comfortable without his wedge and his splints and we will. He has to be up in his wheel chair at least 3 times a day for at least 1 hour each. I will see that it is done. By the time we come back in a month...I hope to have him progressed to being able to do most everything without much if any pain. I have no doubt that David is going to once again show the world how tough and amazing he truly is.

Yesterday they decided that David was peeing too much. David always pees too much! After all....he is a teenage boy in a diaper who drinks about 64 ounces a day. There is going to be a lot of pee. Currently he is a teenage boy in a diaper who is on a constant IV fluid drip, has had several fluid boluses and still drinks about 64 ounces a day....and yet they are amazed that he pees like a race horse? Go figure! Still...they were concerned so they are having him checked out. I think they are just covering all their basis since they want to make sure they aren't missing something. So far we have been visited by the kidney doctor, they have drawn blood and also taken urine. We should know some preliminaries this morning. While I don't believe there is an issue here....I just hope I am not blind sided by something new. I have had way too much of that already! 

As I said...the ortho resident woke me up this morning to tell me that David is doing very well. He has been without a temp for 36 hours and other than when dealing with bouts of pain....his vitals have remained very good. Provided we don't find any issues with his kidneys (please God...no more issues!) then we should be good to go home tomorrow. I think David is very ready to go home and see his Spud, Izzy and the new addition to our four legged menagerie....Shane. I am sure he will also be glad to see is big bubbies Z too. I know I am beyond ready and I am confident that I can handle all that is to come.

I have spent the last few days having the nurses show me everything from changing his diaper to transferring and repositioning him. After they show me...I make them step aside and let me do it all. I want to be completely prepared when I get home. The staff has been awesome and they have loaded me down with supplies that I will need when I am doing it myself.

Davids bandages will be coming off in the next day or two but I will have to watch Mr. Elam like a hawk. He has been dying to go after those steri-strips and they are not quite ready to fall off yet. We really don't need any scabbing or infection setting up. I will say this.....as far as his surgery went....it couldn't have been better. His hips and knees look wonderful and I have great hopes that this will give him a much more independent and mobile life. 

It has been a good morning. David is bathed and now in his wheelchair (not one of his favorite things....yet) and soon we will be walking around looking at the garden and heading to the cafeteria. We are hoping today's lunch will be his last lunch here.

I am grateful today and hopeful (see what sleep will do for a person) that we are on the road to a new and better life for David. This week has been trial by fire for both of us and yet we continue on. Thank you all who have supported us and prayed us through this. We couldn't have done it without you!