the last 3 days at "Spa de Strong"

Sunday:
please add to your prayers for danielle more prayers for me... i'm feeling discouraged... she was able to double her days oral fluid intake that was tolerated to 89 ml compared to yesterdays 40ml. 89 ml equals 3 ounces of liquid. The very minimum we need to achieve is 48 ounces per day to be off of an IV... let's pray the rate of improvement starts to increase... I was firm about getting a swallow consult from speech therapy, I started asking for it on friday, and the md finally agreed to it today. ( he was still saying it wasn't needed, I made firm eye contact, put my hands on my hips and stared him down. On his way out he said he would put in the order. The consult should happen tomorrow...please pray they can find some answers or help for us, and that it actually does happen tomorrow. Please pray that I stay positive and that I don't let fear enter my heart.


Monday:
Today was a mixed bag for Danielle. We had some victories. Sips here and there (about 15 sips the whole day) from a water bottle on her own with bribery... ate a few bites of soft food a couple of times, and only one dose of IV pain med needed today. Did much more walking and was awake more because of less IV pain med. Unfortunately the sipping of water etc was nixed by 4:30, and she's either been asleep or crying since then...hence giving her that one dose of IV meds to get her comfortable again... progress is so slow but I must remember to give thanks that there was progress. My one saving grace HAD been that private room with the tub/shower for her and I. Notice the word *HAD*... oh well it was "nice" while it lasted. Also friday and saturday I had asked two different doctors...are you sure that's not thrush?? They said no. Today the speech therapist took one look and said "I think she has thrush"...therefore she is on meds for that now as well... lets hope it helps...


Tuesday:
Finally a day of progress from beginning to end...and not just baby steps! No IV pain meds at all today, so far at 7 pm up to 19.5 ounces of fluid intake orally, awake 70% of the day, took some bites of soft food, even ate a meatball, did lots of walking, etc...so we are on the way up finally!  Still not drinking enough to take the IV away, but they may reduce the amount of hydration to make her have a feeling of being thirsty to further stimulate a desire to drink.  The mouth looks much much better after a day of thrush treatments, and because she's drinking so much more and tolerating mouth care better the mucous is 90% gone.  I only had to suction her twice today.  She has a great desire to come home, and started crying when talking on the phone to her brothers and sister.  It's good though...wanting to go home is a good way to get her to understand why she needs to drink... prayer and more prayer appreciated...keep it coming.  Also prayers for Dan's father Norm Kulp who is upstairs on the 7th floor being treated with a drain for his left lung, and awaiting exploratory surgery.  Prayers too for my wonderful husband who's birthday is today, as he spent it visiting sick loved ones and holding down fort on the fort on the homefronts...

come on gal...it's rally day...

Alright girly.  Danielle you've got people waiting to play and have you up and at em...don't keep your public waiting!  Mommy is declaring and hoping that today will be rally day.  One of those days where we all say "holy moly girlfriend, I cant believe how much better you're doing"....are you on board with this goal for sunday??

A recap of yesterday:  You still slept most of your day away and are struggling to find your voice but a few nice successes that you claimed...

- your fever was short lived and conquered by a nice bath that you slept through!

- by 6 pm you initiated a walk around the nurses station and pushed your own iv pole.  I think you knew your body really needed this, because afterward you were able to cough up / loosen up "gobs" more of that thick superglue like mucous that is giving you so much trouble. ( yes gobs is a highly official medical term..)

-we are getting a better handle on your secretions in general...using humidfied air, saline nebs, sponging your mouth and using suction

-we were discouraged by no progress in regards to oral intake even with stronger pain medication until 7 pm.  Then a new med was tried that actually numbs the inside of your throat,  also zofran to help decrease nausea...by adding that you started to take in some fluids.  I can see a desire to eat is returning, and you get frustrated when you see food you want but cant make your mouth and throat cooperate to take it in.  Be frustrated girl...it will make you work hard to get back to what you love...eating and drinking.

- although 40 ml of liquids orally is a very small amount in the scheme of things, we worked very very hard to gradually conquer that tonight.  Little by little you did it!  I'm proud of you...and know it wasn't easy for you... but we have to start somewhere.  I'm thankful that your swallow is starting to figure itself out again.

- while you again slept a vast majority of the day, I did see your eyes open more often as you took in bits of a movie here or there or clutched on to your new toy horse...and you're trying to get that voice of yours to work again!

It's a good start sweet pea... and tomorrow I have faith that we'll blow all of those improvements out of the water... so sleep tight and get ready to have a wonderful day tomorrow...that's an order from mommy... love you dearly.

Today's plan for Danielle

We saw the docs...

danielle smiles...

they are not going to order a swallow eval.  In their opinion the mechanical trouble she's having with swallowing is all caused by her pain causing gag reflexes etc to kick in.  They feel once the pain is resolved then she will head in the right direction.  She is still on IV's to prevent further dehydration.

ENT took her immediately off tordol ( her iv pain med which she has been on thurs, frid and saturday ) because it is a high risk drug for bleeding problems post tonsillectomy. hmmmm

We already know tylenol and motrin aren't cutting it bc we had been using these religiously since day one...therefore they are saying she needs to go stronger, and she is now on morphine...which i am nervous about.

They feel if we get the pain under control then she should be able to swallow properly again... so that is today's project.  they want me to magically get her eating and drinking :)  I'll give it my best shot!

so far we've tried various liquids ...those still come right back up
pudding... goes down but then vomited back up
applesauce... we've gotten one spoonful down every 20 min or so...

she is very sleepy still... hard to know if it's the constant sleep she's been in since wednesday, or if it's morphine related... but she is harder to rouse... so i'm sure the morphine is contributing.  I am happy that i've gotten a few smiles out of her and that a few times she's signed that she wants to eat... but then gets mad bc it hurts and won't go down.  At least a little bit of desire is returning...

soooo if anyone knows how to get a sedated sleeping child to eat and drink... throw the tips my way !! :)

Danielle will be getting her special visitor as Daddy will be able to visit very soon!!!...maybe he will be able to work his magic with her too and get her to take in a little more by mouth...

all testing and lab work from yesterday have come back clear / normal so it's good we aren't dealing with flu or uti etc.

thank you for the continued prayers....

Updating you on Danielle's status...

This is probably the best way for me to update you since cell reciption is hit or miss here...

This is the scoop on danielle so far.  She has steadily declined instead of improved since her tonsillectomy on monday.  By thursday we were struggling so much to hydrate her at home that her urination stopped, so we knew it was time to go to the ED. 

We spent the whole day getting IV hydration and IV tordol. Once she urinated, they dc'ed us.  I was concerned about her gagging and choking when ever she did try to drink.  Our hope was that with the hydration she would rally on friday.

Friday things became worse, not better, so back to the ED we went.  By now she's been asleep 90% of the time since wednesday.  She has been admitted.  Danielle is the kind of gal who would love visitors and it would pep her up, unfortunately the hospital is on FLU protocol and she is only allowed to have 2 visitors the whole duration of her stay.  ( not 2 at a time, or two per day...but just 2 designated people and no others)  I'm sad because I know she would be uplifted by her grandma's, grandpa's or aunties and uncles coming to love on her.  If you have smart phones or an easy way to send pictures or videos to her she would probably love that....

I have been voicing my concern since our first ED visit about her gagging and choking.  Everyone said it was because she was in pain.  I think she is in pain, but I get the sense there is something physically wrong or malfunctioning with her swallow mechanism right now.  Her vitals are still good, her sats are good, and no temp.  She is now starting to heave and gag, no vomit bc she's eaten so little just flem and mucous, but definitely worsening of the vomiting type symptoms after trying to take her meds or sips of a drink.

Once we saw the doctor upstairs I again expressed my concerns.  She really took some time with danielle and examined her mouth/throat very thoroughly,  depressing her tounge and getting her to open as wide as possible.  A large amount of very thick, glue like mucous was able to be removed from the back of her mouth.  Also a colace pill ( gel like coating) was jammed in the back of her throat.  It was probably the one from tonight, because it would have dissolved if it was from this morning.  She was able to remove that carefully as well.

Our plan now is that danielle has been made NPO, ice chips and IV hydration and nutrician until tomorrow. She  has ordered an ENT consult for tomorrow and was surprised this hadn't been done yet.  Also they may order a swallow study to determine what textures of food or drink are safe at this time.  We need to be careful not to cause an aspiration pnuemonia as she's had in the past.  All her meds will be done IV for now, with the exception of one med that she's on daily - we are not sure if it has an IV form and it has withdrawl effects if stopped suddenly, so we are looking into that.

-Chest xray = clear  

-CBC= pretty close to normal

-still awaiting results on the nasal swab to check for flu, rsv etc

-still awaiting results on the urinalyisis

I think that's it for now...thank you for the prayers... keep em coming... and I guess catching that fainter in the hall did pay off because we have a private room with a shower... hallelujah!!

Why was he given another mountain to climb?

Over the last 3 months I have started to come to the realization that Shea may have yet another mountain to climb.  I would think that this little guy already was given his fair share of challenges in life... but here we go again.

Shea is very intelligent, very funny, very creative, very verbal, very social.  He also struggles INCREDIBLY with reading, writing and mathmatics.

He's not "just behind because he got a late start in life".  He has connections, decoding, and visual input/output methods that aren't working properly.

I know because of his Spina Bifida, and specifically for Shea some decreased development of his corpus collosum near his occipital lobe he is especially prone to these kinds of challenges.  I know it is probably not something that he is going to "just grow out of".

BUT, I know I have high hopes for what his future may hold, and what he can do with the many strengths that he has.

I know I have a long long way to go in regards to learning how to best teach and help shea.  After 3 months I still am having trouble even finding a way to get him tested for dyslexia in the rochester area.  I know almost all schools have a very long way to go in regards to learning how to best teach children with dyslexia.  I know bills in NYS assembly and senate( that would require schools to have a staff person who is certified in dyslexia intervention and recognition)  started in 2012 still don't even have a vote scheduled on the calender to date.

I am also learning that having trouble learning to read and write has nothing to do with my son's intelligence. He is very smart, he just has a brain that takes information in and puts information out in a different way.

I hurt when I see how frustrated he becomes with school and homework, and how he doubts himself...

We have another mountain to climb...together... and we are just embarking on the foothills...

Heck a few months ago i hadn't even really known that this mountain was in front of us... but here we go... ready to climb.  We will get tired i'm sure... i just hope we don't get lost, and that we don't quit!

This is a long video... but really hits the nail on the head.... if you have time take a look....

http://www.youtube.com/watch?v=cBIK0XVPbXo&feature=youtu.be