CAUTION: this recovery is NOTHING like you may have come to know as the "norm" from any past experiences with surgeries.
Oct 28, 2010
We arrived at Ranken-Jordan as scheduled. Check in was meeting with an entire team of people that I still can't set straight. Once we finally got to our room, we found that our isolation/privacy room was not available and we are in a room with 3 other individuals. It is like a hospital room, as you only have curtains seperating you. It truly ain't as bad as it sounds. We are adjusting to the evening sounds, but last night took the cake for crazy noisy. Seems I ain't the only one that felt that way, for 3 out 4 wanted extra time in bed today.
Our first nursing experience was a dazavu from 2 days prior. You all know me, I repeat myself over and over to every new person I meet to make sure everyone heard what my sons needs are. Johnathan's next dose of pain meds was due at 5:30. We needed those pain meds before we could attempt to safely feed him. I went to the nurse about 5:20 stating our need for the pain meds before he eats and wondering if his IV was gonna be left in or pulled. She came a few minutes later to remove the IV, per orders. I asked again about pain meds and was this time told about following protocol, we would have to await orders. By 5:45-6P, knowing if Johnathan truly eats after 6:30 we will be up with reflux, again stating this fact, knowing only a phone call needed to be made to make sure this patient did not suffer, yet now knowing this nurse did not care, I stated that I was going to start a feed for him using my own pump, rather than doing a regular supper feed due to the fact he was in pain. The nurse rudely stated you're gonna do what you want anyway, and although I was stern, I was not rude, and yes, I was going to do whatevr was in the best interest of my son. Very shocked and yet upset to see our journey that is suppose to be all uphill for Johnathan starting out like this, I returned to the room, called the social worker and started gather ing things to get his feed going. While still on with the front desk, the nurse came into the room and yells out that his pain med is coming and he can have his feed, so I state to the lady onthe phone to hold on I think we have it covered. Only to be met by the nurse throwing up her arm, you gonna keep talkin to them then I am out of here. I stated who I was talkin to but she was already out the door. So I thne informed the lady on the phone that they best get the social worker in here now. When she came, I informed her of the situation and that this nurse does not care about her patients and will never work with my son. She stated the protocol; I stated how I knew only a phone call would solve the issue, but that this nurse was not willing to do what was necessary. Tears are bubbling now,a s I state how this is suppose to be a good journey, not a Children's Mercy journey. Somewhere in all this, I was told they did not have his allegra and wanted to use mine 'til theirs came in, so I stated that since I was giving his feed and truly he needs his nexium around feed time, and that I give nexium and allegra together, I will just give them now. That nurses shift ended shortly after, wehad our pain med and feed, so there was nothing we needed her for so allowed the shift to end and was thankful to hear their knowledge of her never returning to our bedside.
After that horrific night, we awoke with a refreshed outlook on our new journey. We have met nighting but awesome peopel since. Here, everyone gets a schedule that they go by every day, to be sure they are kept busy. However, the first few days is truly lying in limbo as everyone gets their accessments and then refigures their schedules. In the mean time I have tried to introduce Johnathan to the fun activities and events they have, but truly he is very angry with me for bringing him anywhere but home from the hospital. Tuesday afternoon, durign fun time, Johnatahn finally smiled for the first time. I soo wanted to snap a pic, but can't take any pics that may include anyone else that is here so will just have to keep this one in my mind. They have a young man with just a silly laugh that got Johnathan started and then the skeleton that dances and lowers his head and then his eyes pop out, got that belly laugh to appear. However, right when the event was done, our snarl came back out. We do have an outside area that has a hweelchair swing and a trail. First time in swing gave no smile at all. First walk was the same. Then yeterday, we finally got a half smile on the swing and a relaxed look during the walk. I even set up to leave him for that afternoon group so I could run to the store, but he chose to sleep instead. Which was even better for me, for I have not left him since that aide incident. I was back before he awoke.
He is now up to 2 hours at a time in his brace. He used a tilt table for the first tiem yesterday at about a 45 degree angle. Today we were going to get into a gait trainer of sorts, but a fever came on last night and has showed its face again this morning, so our day will be in bed.
His incision will lose its bandage later today. All has looked great as far as no seapage marks thru the tape are seen. His runny everywhere diapers seem to have stopped. His steroid, tordol and antibiotics were stopped once we left the hospital. Pain meds have been oxy every 6 hours and ibuprofen. We then switche dto oxy every 4 scheduled with ibuprofen scheduled in between. Yesterday I asled that we change the iburpofen to prn, but then 3 hours after what would have been the next scheduled dose, we had to request it for the fever. never knew the 10 day ibuprofen rule and more than the 5 day tordol rule, so now taking tylenol for fever so we can save that ibuprofen for later, when we wean him off the oxy.
John will get PT every day, OT 2 times a week and speech once a week. In between, they have sensory cooking, motor group, PHRS, which is just fun activities different from day to day, sensory stimulation, cognitive stimulation and meals that are to be in the cafeteria by all; about 5 hours total in between activities. They definately keep you going.
Hopefully our fever will subside and tomorrow we will get into a swing and working toward home.
Oct 28, 2010
Realy nothing new to report. Just ending this night still in bed with a fever of 101.5. Thought it was gone, for no tylenol between 11A, ready to bathe him after dinner, but he puked up a saliva bubble ball and showed us all his fever was still here.. So off to bed we go.
Oct 29, 2010
Bandage came off yesterday; all looks great. Today the bath took off the steri strips and this is what we see. If you look at the lower part of his spine on the bed side and you can kind of see a bit of an indent, you can almost see an angle line if you will. Then notice is kind of goes up over the incision and you can sort of see the puffy pocket that I felt. They say it is not red and it is not oozing, so they will watch it but that the body should absorb it.
On the other hand, after yesterdays post we spiked a 103 fever; by midnight we was 98.1. This morning all was well, we even bathed, walked the path outside, went to PT. By 3P we are 102.1, again down in bed. I am sick of this rollercoaster, stated I wanted labs and even though one doc feels this is like a central nervous system norm for after such a drastic change that has occured to it, he agreed to the labs also. He says that everything was out of wack, not paraphrasing obviously, but was a norm for him, and now we have made it out of wack by fixing it and as the system refigures its new system, sporadic fevers can be common. We have a new baclofen pump tubing, we have a straightened spine and we haev hardware, all doen around the central nervous system. Sadly, that makes sense, but none of this makes any sense compared to what I as a parent have come to know in my almost 12 eyars with my son and the other 11 surgeries we have been thru.
We are here for rehab, we had bed time at home. This is not how this is suppose to go. And I do believe that I astated this was to be a relaxing learning experience for me, not a crazy, chaotic, not knowing up from down daily ride. Thsi has got to stop.
Oct 29, 2010
Changes tonight...see the indent on this mornings spine pic and the poof out in the same spot on the evening pic???? Again they say it is not hot, red, or oozing, so just to watch and should go away. Labs from today will be in some time tomorrow. Feel the spot is harder than this am, but who knows at this point.
Below is 2 close ups the 1st will be am pic and the 2nd is pm pic...
Johnathan is finally sleeping and temp was 99.9....
God, you know why we are here, you know Johnathan has been thru so much already in his life..please help us to find his smle and drive and heal him, so we can move ahead on this new road for him...Thank you Lord
Oct. 30, 2010
Today they had their 5th annual something to do with handign out baseball trophies to those that played for their teams. We got to enjoy a BBQ and pettign zoo. Since there was no fever again this am, we went out and met a camel, a dinkey and King Ram.
Sadly, after our outside fun, we came back in for lunch and a break from ur brace and then awoke with yet another fever. Labs came back showing a slightly elevated white count and soem other thing that should be about 50/50 and it is 80/10, so we are starting an antibiotic that would be used for like a skin issue. Today the fluid seems more like it is poking out more at the bottom of the incision based on around the lower area, buit I truly feel there is no more fluid in that area. I did, however, notice the same puffiness about mid back too now????????
And thank you Christina for saving me by hunting me down a new computer chord!!!!!
Oct 31, 2010
Happy Halloween Everyone!!!
I am so happy that today, for the 1st time since surgery, we finally have a 97.7 temp, which is normal for us. I pray this means we are with all the fevers.
Oct 31, 2010
That was very short lived...101.3....another day in bed. Even reached 102.9 thruout the day. Been in bed all afternoon and evening, reflux in overdrive. He slept for about 2 hours and now sits wide awake after bedtime meds, awaiting order from doc for some PRN Zantac. Thank God I have a pot of coffee to hopefully help me thru the night.
Sure wish I knew what was truly wrong?????
Nov 1, 2010
Today started like every other day...we awoke to the sounds of a busy facility trying to get everyone up and off to breakfast by 8AM. There are those of us that stay in bed and those that go; those that get ready pretty much by ourselves adn those that require total help in getting up and ready. Like every morning, we start with meds, a feed and Elmo, right here in bed. Then we gather everything for our 9A whirlpool. After that, we address our weekly schedule to see what we have in store for the day. Today they had the sensory cooking at 10, so after John's whirlpool adn moms shower, we stopped and made soem chocolate chip cookies. They ahd soem really cool gadgets that the kids can acctivate with switches, even the blender...a must we will get on as soon as we get home. they used velcro on the side of measuring cups and this cool arm gadget that let everything slowly pour into the bowl by holding the switch down.
Sadly, while making our cookies, I noticed Johnathan getting flushed. I knew what that meant. But since I was already seperated from everyone else due to our daily fevers we have already suffered, we decided it okay tgo let Johnathan finish his fun.
Once we returned to our room, we only had a temp of 100.8, now it is 102.1. Labs have been retaken and once again our day will be spent lying around in bed.
Nov 1, 2010
So now totally not sure what is right. I got 3 docs saying get up, get out and do, whiel still running these unknown fevers. And to do this in a hospital facility that has children even more medically fragile than we even thought of being?????????????
Now, since ther eis 3 of them, I have to check myself and everything I have learned as a parent over the 21 years of hands on experience that I have here and at least attempt what they say, even though I totally disagree.
So, 100.5, got John up and headed to the cafeteria after everyone else had already left. Got invited to relaxation therapy, even after I stated mu unsurity of beign around anyone else; but again being told it okay, so thought it better than wlaking in circles while tryign to egt this up time. Sat maybe 20 minutes and heard the gurglin at the back of the throat that means stiffness; either in pain or just mad, not sure. Come back to room, transfer to bed and notice it is complete pain; we are almost 2 hours into oxy though, so should not be in pain. Take brace off, totally stiffness with hollering. Settle him in and take his temp to see we are now 102 and our reflux is in overdrive.
Now, I did fall asleep today and a nurse did what she normally does when settign up a feed; my noticing he was hooked up figured they just started what I already had in there kept it going to the very last drop. Later I learned she had dumped my feed and placed one and a half cans in there, so 12 ounce snack. Knowing he still needed supper, but wanting to get it in before the 6:30 we know to never feed after, 6:15 did a 4 ounce supper with a 2 unce flush of formula.
The n ther eis the fact he has yet to poop today, so waited a bit and then gave an enema. Completely filled runny brown, not dark grey anti colored, but still all liquid. why ain't that coming out on its own as it has at home???????????
So, now what to do about this doc plan that I didn't agree with in the beginning, yet tried and now am convinced that it ain't a good idea?????????????????????????????????????? Time to talk stright with Dr. Anderson myself to hear his reasoning.
Nov 2, 2010
So e-mailed Dr A, called and left message with his nurse and called in our doc for the day from here. Didn't truly get to talk with Dr A or his nurse, but have felt the need for us to just go home and do our recovery there. We aren't able to egt really any therapies here and getting up with temps is not only not ideal for Johnathan, but really also not safe for the other children here.
After speaking with our daily doc here abotu my concerns, we came up with a plan that seems workable. We will decrease his oral baclofen, which is great. We will increase his baclofen pump, which we already have. We have changed the double night dosing to one steady dosing and thne increased the day tiem dose for an overall 3% increase. His clonus is not as bad as it was before surgery, but is coming back strong, so maybe this is that key.We will start ibuprofen around the clock again and see if we can't mask the fevers and the ickiness that Johanthan feels also. Not sure how truly right or wrong this is, but willing to do what I must to make sure my son isn't feeling blah all the time. I am truly feeling that these fevers have been there all along and are the same one we started while still in ICU, for the only time we did not have fevers was when we were doing the ibuprofen around the clock for pain. Still puzzling to me as a parent as to the why. Another part of the plan is some thing that you can get while being on antis, and since we were while at the hospital on some strong ones, we have taken a stool sample to test for this bug. Since we have very loose stools still and truly we should be backed up from all the pain meds, this seems possible. I will try anything, well, almost anything, at this point.
So beyond the fevers, I am also puzzled byt he fact taht head movement causes pain, body stiffenign pain. I can lift his arms above his head, move his legs, everything but his head??????????????????
Time to get him up for his first true OT/Speech session and measurement for our new benniks. Our new bath brace will be here tomorrow. All our ordering of necessary supplies for home will be done.
Nov 3, 2010
Before speech was over yesterday, Johnathan was showing all the signs of having had enough. We quickly fixed his chair and got him measured for his hand splints (THANKS GUYS FOR BEING SO QUICK) and back to our oom we went.
In taking off his brace, Johnathan started crying. This is the second time, so I have to wonder about the fitting. I know Johnathans check in weight was 86.5 and now he is 84. I have had an issue with that check in weight all along, as his chekc in weight for surgery was 74.1; and there ain't no 10 pounds of hardware and brace on him. I knew our hands and feet were still swollen when we got here, so I do believe our weight loss is fluid and nothing more. Could this be the reason for the pain in removing the brace?????? Could this also be the reason for the pain I have noticed when moving his neck also?????
Got into bed and relaxed about 3:30-4P and Johnathan has been sleeping ever since. He awoke about 4:30 this am, only to fall back asleep; then again at 8 when I started his feed and then back down. I am sadden that all this probably is just rest necessary from the numerous days of fever and my still getting him up. We did increase the pump yesterday, but we are not snowed or floppy, just sleepy??????
Talked with the doc yesterday after therapy adn stated that we have tried all their ways, so now we are going to try mine; we are going to bed and staying there at least thru tomorrow. I guess Johantahn agrees with that plan. We'll see what arrises thruout the day.
Nov 3, 2010
WOW!!! With everything that haS been so up and down and getting John on track, I hear they are cutting back his pain meds and today is his last of 10 day ibuprofen.....WHAT....we just came up with a plan to try and get this boy up and that consists of adding ibuprofen back around the clock, not for just one day, hello. Then we are having a hard tiem fever, pain wise already and you think it is time to cut back....SERIOUSLY...we had a plan and it just flew right out the window.
Get us off oral baclofen and we are going home.
Nov 3, 2010
OK, everything is beign left as is for now and we can at least ahve th enecessary time to allow yesterdays changes to show their true faces and then we can make our next move; but first and foremost , keeping Johnathan out of pain still has to stay top priority.
Orthotic & Prosthetic lab should be here any minute with our new bath brace and to look at the fitting of out other brace. Maybe we'll get up for a bit today without issue. Still thinking maybe a pain patch for the area of the neck is necessary, but will wait another day.
No temps, but iburofen going around the clock. Seemingly relaxed, but again haven't really done anything all day. Praying this rest time is just what he needed to get him back up.
Nov 3, 2010
Bath brace is great. Kieth, for O&P showed me the easiest way to place Johanthan in his brace by rolling. I tried the rolling since I got the brace and found sitting him up to place it on was easier; yet truly nothing I had found as easy. Kieth just rolled to one side, but rolled over waay fatehr than I did, then just slid the brace on his back, rolled him back to the other side with a small tug and it was in place. I know it wasn't even close to that easy for me, yet I also know I never rolled him so far over either.
Since brace was placed and we had yet to be up and although pale, we looked okay, I felt we would stay up for supper and give it a whirl. I noticed he was even more pale by the time we got down the hall and snapped a pic. He gave me the attitude look, so thought it was just up 1st time after sleepin over 14 hours plus attitude. Got our dinners and sat away from everyone to seperate our still unsure illness (ibuprofen masked or not). Ate, cleaned up headed back to room to put stuff away, and puked all over; no grey color changes, so must be from sickness, whatever that is. So much for dinner.
We are now back in bed to stay and see what tomorrow holds.
Nov 4, 2010
Got Johnathans bath brace just in time for his 9AM bath. O&P, Kieth, showed me how to put it on yesterday with rgeat ease, but yet after 4 attempts I just settled for how it was, for I could not see putting Johnathan thru yet another attempt. I know the doc says this is necessary, but I fear I cause more pain in trying to put it on than to transfer without it. I definately need tons more practice.
Got him into bed, tried to sit him up into drinking position and pale he went, so backed off. Still not wanting to really swallow, so tube feeds for the day. He is already sleeping again, which jusr shows me that I have truly pushed him too far.
Oral baclofen will be done on Monday, so have called Mike to come get us on Friday. I feel a few days off the oral to be sure we are okay andstill able to have time for pump adjustments if need be. All this is only upon Dr Andersons approval though, so have e-mailed Staci and will await their answer.
Nov 4, 2010
LET'S PLAY HOUSE..and I do not meant he kind where you grab your dollies....I mean Dr. Gregory House from TV, yes seriously...if you have a special needs child, you do not need to watch an episode to know what I mean; but if you don't, watch an episode and pretend that the patient is your child; yes try and stand in the shoes of a parent that plays medical guessing games darn near daily...then you will undersand what it is to be me for today.
We have had over a week of sporadic fevers, occuring between 11A and 3P, mainly, 2 days he awoke with the fevers. We now have added instances of being very pale when sitting upright, like in wheelchair or in bed high enough to drink. Oh, and don't forget the pain when you reposition his head. Then there is the little issue of the leaky feeding tube, which some ehre say is normal, but I can swear it ain't normal to our year training at all. Then ther eis yesterdays terrible output of 3 small diapers; knowing we had fell asleep at 4P the afternoon before and should have leaked out everywhere by time he got up, so should have not only hit normal 5 but should have equaled about 7. Then there is todays 2 wet diapers, one a good one and the other smaller than normal. And also today, I thought the gagginess after drinks was reaction from the puking last night, sort of John's attitude/refusal to swallow cause it hurts, like he did after the nasal feed tube or the recent vent. But now, after a partial snack feed, I had to shut it down cause the gagginess turned to puking motions without projectile??????????
I had already started his feed late cause at 3 his feed tube was leaking milk yet when I opened it, so his belly was clearly still full. I only started it a bit after 4 cause I knew I also needed supper in before 6:30 so as not to be up all night with severe reflux. So, knowing food is out for today, and now his kid essentials is also too much on his tummy, what do we got left...think, think, think.....Pedialyte, okay, find doc...
Relay lack of output, and now input issues, what do you think.....she agrees, great...now, how to give, for instant could cause same issue as fornula...slow feed pump down, do that over hours thing like that other mother does, yeah...how many hours, leave that to the doc...now, short about 420, so cut in half and go over 2 hours, see how that goes, wait a couple hours, give the PRN zantac and start the 2nd half...if gagginess gets worse, stop and go to 3 hours, and so forth, until all gets in.
WE GOT A PLAN!!!! Now I just pray it works. Sadly we won't get to the bottom of this in an hours time; it has already been 9 days, and the guessing games are still going strong.
Nov 5, 2010
So doc came in this morning and said she heard from Dr A last night and he stated this is not his protocol, that we should be up and pain meds should be gone by now. I do not know how we can do both, especially with the way everything has been going down hill lately.
Last nights pedialyte had to be slowed to every 3 hours and did give us great output this am. I decided to try his formula for breakfast feed and see what would happen. He is making a few pukey faces, but not puking.
In speakign with doc, she also stated about going down on pain meds tomorrow since he is going down on oral baclofen today. I stated I would rather step back this am so I could have the same doc that has seen him re-evaluate later today, rather than have a doc that has not seen him before and after. So here we go. skipped 9A oxy and will give it at 11, then hope we do well. Now I am suppose to get him up and movign while also going down on pain meds; that part I think may be impossible, but who knows.
Either way, without moving him, or getting him up and hour and a half past 4hr oxy, we are sleeping.....good thus far then,I guess.
Another mother pointed out a few things that I have overlooked....upping the baclofen pump can cause the reflux to get worse and the swallow to get worse; oral baclofen can cause these same things. Oxy can also cause us to turn pale whwn getting up and can cause upset stomach. So everythign we need to get moving can also be what is causing us not to be able to move and advance????????? Plus there is the possibility tat when the surgery straightened the spine, we know it had to have moved that stomach, so, could the feed tube placement have changed????????????????
GOD, take this from me..I know not what way to go.....he's our son and he should never hurt....heal him, lay your hands upon him and heal him......give me the strength, the direction necessary to do what I need, for I know not what is right...tooo many factors, too many thoughts...too much to handle Lord.......take this...
Nov 5, 2010
AWESOME AFTERNOON!!!!
Johnathan woke up a little after 1P. Went thru the typical drink, change pants, etc. Then sat back down ready fro him to watch yet another cartoon, or to fall back asleep. Yet this time was different...he turned to me and "ehh" me. Thought it meant a different movie, so changed the movie. Then I noticed he wasn't even watching the movie and he "ehh" me again, but this time with tone in his arms and that slight lift. AAAWWW, you want up, okay. So got him up in his chair; he got a bit pale, but nothing like the last time. Then we did our round, bathroom, around the glass windows to look outside , then back around to the room. Yet, he wasn't ready to go back to the room, so we bagged up all his toys and went to the play/social room and found a table. We dropped otu our toys and started playing. We even had to take a break to coem back and get our backpack for our afternoon snack.
THEN, when we got back to our table, we got yet another blessing for the day......Glenda, John, Nick & Erin were standing there with cards and gifts and the much needed hugs. Made everything just fall away and peace hit my mind and soul...THANK YOU GUYS...thank you ALL for the cards and the snacks and the well wishes...PERFECT TIMING, as God always does..THANK YOU.
After our visit, we gathered everything and headed back to our room. Johnathan had been up for 2 1/2 hours in his brace and still was doing well; not bad for a boy that was and hour away from his pain med that had just been changed to Q6 from yesterdays Q4. Said our goodbyes and everyone left. John got upset when he learned he wasn't leaving too. Got him into bed and within minutes, he had fallen alsleep yet again. God heals durign sleep, so will take it as that and continue to enjoy this awesome day.
Nov 6, 2010
How many times in my life will I find myself physically and mentally drained, crying, on my knees???????????
WHEN will I finally learn to just give it to God before I get to that point???????
All I can say, is, THANK YOU, AGAIN, LORD, for taking this burden. I hate that I always seem to forget to hand it over immediately; or I think I say I handed it over, yet I forgot to let go of the reins. Yet I am thankful that no matter what, you have my back and you are always watching over my children.
Up at 4AM, ready to start the day. Mom held him off til about 6, then got us both up and showered and him back to sleep by 8..too much coffee has mom still going. SO VERY HAPPY TO HAVE FOUND MY BOY; aunry and ready to go!!!
Nov 7, 2010
Great night...sore morning, so we just hangin out watchin Sesame Street.
Still awaiting word from Dr A about whether or not we can go home Friday. Our appointment is following Wednesday, but have no problem coming back for it.
Incision still looks great. Fluid pocket at bottom seems to be gone;. The one in upper back was down to minimum, but seems to be back to the big side today; all just moving around I guess.
Feed tube still leaks when left open and reflux takes its stand more often than I have seen in a long time. Mike says not enough real food; I say too many drugs yet to tell.
We are doing good at the Q6 on the oxy though, so may be able to go Q6, or Q4 first, at a lower dose tomorrow?????
Nov 7, 2010
Overall good day; spent most of it outside enjoying the weather; got 3 hours in brace at one time.
Came back in about 1P and farted a big stain, so thought to get anenema to finish the job. Johnathan fell asleep instead of finishing. Gave him 3 P feed while still sleeping. Shortly after he awoke looking a little pale and a bit drolly, so we hung out.
Gave him basic supper of babyfood and his kid essentials,thne he did hat throat hard puke sound. Nothing came out, btu he instantly went flushed and truly feels hot. Temp only 99.4, as we are still on tylenol around the clock. However this is the 1st visible fever in days....looking back ooks like Thursday we started the tylenol, but we were on the ibuprofen sporadically before that. I am thinking it was before the 3 days of sleeping that I last saw the visible signs of a fever???????????????? Who knows now, everything is blending. We'll just hang out and keep a close eye.
THANKS AGAIN TO GLENDA, JOHN, NICK AND ERIN FOR BREAKING MY CHAOS AND BRINGING ME HUGS, CHEER AND CHOCOLATE.
Mike says since Johns one month appointment is next week, that I should stay until then and he can take us hoem then; that way Dr A gets to truly see John and we get to talk face to face with him on the plan. I say that's 5 days of home I could have in between that is priceless t me and John, but none of it means anythign until Dr. A gives the final say.
Nov 8, 2010
We have been up in our brace for 5 hours today; and we are only down now cause we are doing our 3P feed. We tried a sit-stand for PT today. I do not like the one we tried due to the fact that you strap in for the sitting position and as you stand, the head support and the trunk and chest straps do not move with you. They have some awesome ones for the little guys, but none on hand for the big guys. Plus the smaller ones allow you to place someone in it while lying, not trying to figit in thru this and that, to place in the sittign position. Either way, Johnathan stood today...the first time in over 2 years.
Our fever is still there, but doesn't seem to be an issue today. The reflux is always an issue. We went down to a lower dose of the oxy today, Q6...if it does not work, we have the same lower dose on stand by at a Q4...%P is 6 hours, so I think we may be good........
Nov 8, 2010
OMG.......THANK YOU!!! THANK YOU!!! THANK YOU!!! Dr Anderson has made time to see us Thursday morning and if x-rays and all look good, then we are out of here on Friday!!!!!!!!!!!!!!!!
Now, I told Johnathan....but he has been up from 10A-3P and then 3:30-5 in his chair...and even though he spent the last hour making this cool flower pot, he is very tuckered out and has nothing but rolling eyes for mom at this point. However, mom is thrilled that we can be up all day, if need be, and we tolerated the lower dose of oxy with almost complete ease. THAT'S MY BOY!!!! THANK YOU DR. ANDERSON!!!!! THANK YOU LORD!!!
Nov 9, 2010
Yet another busy day; yet another day of refusal to perform.
Tried a new walker in PT. It is the Evolv sit/stand. Seems to be the best stander for a child Johnathans size. we are too big for the prone/supine standers that our PT wants, so we truly are limited in our options.
Johnathan wasn't even willing to throw out a smile when the dogs came to play and even rolled his eyes thru most of music therapy. But when she pulled out the silly sounds and drums on the keyboards and Elmo music on the i-pod, we finally got a smile.
Then we were off to OT & speech to find the V-Max set up with the eye gaze that I desperately want for Johnathan. However, today, of all days, we have a head falling to the right. They did get to see his abilities though and agree with me that the eye gaze is better than head switches for him. So we will get home and get to cooking on the V-Max so we can pass our next eval and finally get the eyemax and show the world who we are.
So now we are kicking back in bed, relaxing for th e1st time all day, ready for snack and we get a visitor from the St Louis University Billikens, a good luck charm mascot.
Nov 9, 2010
Looking flushed before dinner so took his temp, 99.2, yet still on tylenol scheduled around the clock...headed down to dinner, soaked his shirt from drool, so hurried back to get brace off and let him lay back...then everything came back up.....hope that nexium and oxy got settled before hand......more tylenol and bed for the night.
Nov 10, 2010
Puked last night, puked this morning....todays plan was to again lower oxy and continue gettin up and going...now the plan is to stop the tylenol and see if this fever is gonna show its nasty little face, and how high is it gonna go (tylenol was due again at 11A, so should know within a few hours)......all while starting pedialyte to replace breakfast and cover lunch, yet over, say 4 hours, so as not to lose it again. ......and FINALLY someone listened to me about the leaky feedign tube. We were even going to exchange it for the 1.3 or 1.4 (longer), like I think we need, but they only have a 1.5 and that is waaay to long. So we replaced it with the same size, so now can see if the leakiness/open to the air, will make a difference with the reflux....so, overall, back in bed for the day.....
Nov 10, 2010
Tried cream of wheat with regular milk, syrup & butter forsupper; barely got 3 oz in before he started doing the puke gag, so stopped. After talkin with doc, we chose to do a regular kid essentials feed over 2 hours, so we could say we at least got soem in him.
No temp all day, beyond a 99.4, which John runs a degree to 2 below normal, so for him that is a temp, yet is subsided on its own. However, now, sitting in family lounge watching Sanford & Son, Johnathan looked all flushed, so we came back and found a 99.5. So we are in bed, finishing our feed and going to monitor the temps, yet let them go, as long as he is comfortable.
Dr. Anderson in the AM. Got bombarded, or at least it felt like it anyway, with the fact that I can not ride in their transport van and Johnathan can not ride in a cab with me without a car seat. Talk about make the tears a flow to know I must leave him in the care of someone I do not know, and that he does not know, and then allow them to transport him in a van, in his wheelchair, which is a whole lotta firsts at a time when stiffening up and stressing ain't what we want at all. It is a registered nurse, that has a special needs child of her own, which makes a bit of a difference, but nothing will make this easy for me. I know it is what is probably safest, yet him being without mom does not feel safe at all. I can't cancel the appointment, for Dr A is fititng us in to begin with and we need to see him in order to possibly go home, so all must be.
Nov 11, 2010
WE ARE GOING HOME TOMORROW!!!!!!!!
Our x-rays today look great. We have a 28 degree curve for our final results; 97 degree start...this is awesome. We are truly fused from T2 to the pelvis and the baclofen pump tubing is at C2. We will be back in a month for a follow up. Our therapies are not limited as long as we have the back brace on. We are down to 1 ml of oxy every 3 and Dr A says it will be no problem weaning him off the last of it.
Beyond that, the transport with Johnathan in one vehicle and me following in a cab, was hard, yet was not as bad as I imagined. And, actually, the 2nd cab ride would not have been acceptable for my little man anyway,
Then you have Ranken-Jordan as a whole.....truly, they have everything to offer a family that is thrown into the world of special needs, due to some tragedy. At a time when families are completely overwhelmed and truly traumatized, they have a team of people that they can get to know, and thus find comfort in, which truly is necessary when trying to heal and learn thru a crash course. I would highly recommend it to all families in such situations.
Then you have families like mine, that are lucky enough to have been born wiht special needs; and truly, this place has reminded me of that more than I cared to see; yet enough to help me stand strong and hopefully even help another. The other side, I also got to see a young man that threw the reality of what many parents with special needs children is faced with when they get older. This young man has a mother that loves him, but has no home. He will go to a facility that his mother works in, if he gets a medicaid waiver. HOW SAD. I can't imagine what it would be like to not only not be able to have my son at home, but to not even get the chance to place him in what you feel is the best place for him. I wish I could take him home with me. I know that even though he can't be with his mom all the time, some times will just have to be good enough; God will take care of the rest. Again, just reminds me how blessed I truly am.
Now, as far as a rehab/grab all together for the special needs child and the parents that have already had numerous crash courses, some good, some bad, so therefor may seem bitchy, yet truly just in it for the best interest of their child.....yeah, for those like me.....for a place that knows what team is all about, and who truly pow-wows with each other DAILY to get numerous points of view on each individual child, who is understanding and willing to be sure the family is involvedas much as they choose to be, for a place that has aides to help with everything you need, even floats that can with even more, to nurses that have time to hear what all you say and then truly relay them to the docs with quickness, placing their patients first, to docs that are visible thruout the day, making their rounds as many times as necessary to be sure each child gets the care they need. A doc here, at all times, with knowledge on each child, and the ability to make whatever changes are necessary with quickness. Then you have the therapists and PHRS staff that keep the kids up and going almost all day long. Therapists works so closely with vendors that you can try equipment and order it all within a weeks time. NO going home and hassling with finding a doc, waiting for that apoointment, then finally ordering whateve ris necessary; you go home wiht what you need, or it follows you shortly. They even go thru the whole home necessity list per each child and has the resources to again step in where needed.
OVERALL, I am very impressed with the capabilties of Ranken-Jordan as a whole. I will highly recommend them to any family that I come across that is in need of a great facility that can cover all the special needs necessary to get from hospital to home.
THANK YOU TO ALL THE STAFF FOR HELPING US THRU THIS ROUGH TIME; FOR PUTTING UP WITH SUCH A DEMANDING PARENT, WHILE ALSO KNOWING WHEN AND HOW TO PUT YOUR FOOT DOWN , YET STILL MAINTAINING A TEAM RELATIONSHIP. WE HOPE TO NEVER NEED TO COME BACK, BUT IF EVER I SHOULD NEED SUCH SERVICES AGAIN, THER EIS NO WHERE ELSE I WOULD TRUST WITH MY SPECIAL LITTLE MAN.
Nov 12, 2010
HEADING HOME!!!!!!
