THE PAST, PRESENT, & LOOKING FORWARD

So where did we leave off.  I actually had to read the last blog post to see where we left everyone....So what has happened in the past 11 days...well where do we begin...

On a non scientific note, nurses who have not had Klara in 2 weeks or so, come in and immediately say "WOW, this is not the same baby i left 2 weeks ago."  Klara is showing signs of real improvement.  She is starting to move her arms and legs quite a bit more.  Even her head....she held her head off of my chest the other day..even though i was leaning trying to make her head fall.  the Little champion held her head off of myh chest.  That really felt good to see. 

so on the scientific note:  The EMG did finally happen.   Not as quickly as we thought it would, but it did happen.  It was a painful procedure (so we here) but Klara did great.  Mom laid next to her throughout the prcedure (the first time mom has been able to lay next to her).  So the RESULTS:  well, her  nerves or carrying the signal (nerve conductivity) as expected.  Good one might say..YES,but that brings us back to the muscles. 
So back to the muscles....the last we left them we were wating for the results of the muscle biopsy.  And we still are.  No definitive results .....  yet. 

And back to the NON Scientific updates:  Lily J has become a regular staple there at the NICU East Pod 72.  "Hold Me Klary.."  is all we hear.  Its so cute..and hysterical. She has made many nurse friends recently, due to her willingness to help and carry supplies from one bed to another....

SO LOOKING AHEAD:   Her speech therapist, has noticed a pattern with Klara's sucking.  She is developing a suck, suck swallow pattern and has ordered paci dips (dipping the pacifier in breast milk and giving it to her to see what she does {she loves it})

Feeds:  her feeding is still an issue.  She currenlty has an OD tube (in short, she cant come home with one) and next week due to her showing an increase of strenght in her peripheral muscles, they have to assume she has increase her muscle strength internally as well (including her stomach muscles).  So they will begin experimenting with feeding tube placement on monday and try to get her to an NG tube (a feeding tube she can come home on) .  CROSS YOUR FINGERS.  

Oxygen:  right now she is on 1/4 liter of 100% oxgen.  That means, she is on pretty much nothing.  Its something she can come home with.  In fact the docs dont really understand why she needs it.  They dont things its doing much for her.....

So looking at the long cuvey, mountainous, foggy, road ahead; which can go on for miles.....still alot of unknowns, but our Klara is fighting what she has with everything she has.  Please CONTINUE to keep her in your thoughts and prayers as she / we appreciate more than you can know.

KEEP LOOKING FORWARD..............

Still Going Strong

So this past week Klara has really done a great job.  She was extabated last Tuesday and has continued to wean from the flow.  Klara has never really needed oxygen, but she needs the air she is breathing to be pushed into her lungs = flow.  She is down to 3/4 liter of flow and doing well.  The Docs actually gave her a test of being off of the nasal canula for a day and Klara lasted about 10 hrs then she was showing signs of  struggling by desating and high respiration rate so the docs put her back on the flow. 
Tomorrow they have an EMG study scheduled.  Hopefully this will give them some answers.  The muscle biopsy has yet to give the docs anything definitive. 
So Klara is continueing to get stronger, she is awake for longer periods and is showing some real signs of getting stronger.  The docs really want to get her feeding and breathing stable so she can come home.  Of course the diagnosis is important but unfortunately that may not happen before we go home.
As always we appreciate all of the support you have given us along the way.  Thank you!

Take a deep breath....

Cause thats what Klara did today...

Finally some news and something (I want) to blog about...

Today Klara was Extubated and she did good.  She started breathing on her own fairly quickly w/ minimal support.  They (nurses) were impressed.  Since then (its been about 10 hours) she has had a few Desaturations but thats really all.  Now, Klara has thrown a few curveballs at us before so, we just need to keep the good vibes going her way so that she continues on this path and that she doesnt get tired again.  Not a pessimist, just trying to stay grounded.  She still has alot of HUGE obstacles but this is a BIG step for LITTLE k. 

Additionally her bones are showing some promising signs, so much so the Ortho Doc removed her Pavlic harnes (we call it the paratrooper suit).  So hopefully that rules out Major Bone disorders.

On her primary diagnosis...well they have done a BUNCH of testing but still no definitive results.  They have started to remove some things off the table, but right now still nothing is for sure.

They are planning to do an EMG test and a 3rd muscle ultra sound.  We are also still waiting for the results of the muscle biopsy. 

She is fighting every step of the way..she's a stubborn pedersen (wonder where she gets that from). 

Our Little Trooper.

Klara's surgery was scheduled for 12:15ish...apparently at CHOP that means 9:00 AM.  Unfortunately we weren't at the hospital when she left for surgery, which was very difficult for us, however, it was a quick procedure and when we arrived at 9:45 we only had to wait 10 min until we heard that her surgery was over and she would be back in her room by 10:30.   Thankfully, everything went well and Klara did great!  She was moving and opening her eyes when they brought her back to the room.  They had opted to bump her vent settings up a little bit post surgery to give her a little bit of a break and a couple hours later they were able lower them back down to her original settings.  She slept most of the day and true to Klara's fashion, she woke up right as we were planning to leave.  We did get to enjoy seeing her awake for a while before we headed home.  Her Doc stopped by and told us that the testing on her muscle could take up to a week or so for all of the results to be in...more waiting.  However, her nuerologist feels that we will get some answers from what he saw when he took a look her muscle.
The docs will continue to wean her vent settings as long as she can tolerate it.  They also plan to reintroduce breast milk this week and begin to wean her off of her IV fluids. 
Thankfully this week is over - it has been a stressful one for us.  Lets pray that next week is a better one!
Thank you for all of your warm thoughts and prayers.

Just another day....

Just a quick update...Klara is still on the vent and she is resting easy and her stats are great.  If you recall in the previous post we were hoping she had infection which would explain why she had the event on Tuesday.  Unfortunately they have not found any infection, so we have to assume that she was just not able her hold her own respiration.  She is doing well on the vent, and they are constantly lowering her level of support...so maybe she was just tired.  We can expect her to be on the vent for a couple weeks more...

Because she is on the vent they decided to perform surgery and do a muscle biopsy.  This muscle biopsy is cricital in confirming or denying the neurologist's beliefs to her primary diagnosis.  Will it be 100% definitive..NO...could it be..possibly..

So we were expecting to have this surgery next week.  Today we got notice that it was happening tommorrow afternoon, this evening we were told it would happen in the morning then our nurse called to tell us it was scheduled for noon..WOW.....

Thank god for Cousin Lila...She came up from B'more to hang with Lily tonight so we can head up to the hospital first thing in a.m. 

Whats the risk w/ this surgery?  the surgery nothing..the anesthesia..well some.  There is a risk w/ anesthesia for anyone...for klara...a little bit more... 

Ill post tommorrow to let everyone know how it goes..but tommorrow morning...please keep her in your thoughts. 

Klara Danielle..................................

Blog: (a contraction of the term "web log")[1] is a type of website, usually maintained by an individual with regular entries of commentary, descriptions of events, or other material such as graphics or video. Entries are commonly displayed in reverse-chronological order. "Blog" can also be used as a verb, meaning to maintain or add content to a blog.

I have to once again apologize for not keeping you up to date, but the days just started to seem routine (lets use routine LOOSELY).  Klara was having a few "episodes" every day but nothing she didnt bounce back from.  Her feeding was hit or miss, so they pushed an ND tube vs. her NG tube and things seemed ok. (i apologize for the clinical terms).  I promised to deliver news to everyone (good or bad) and i was waiting for some news.  For a while I was under the inpression that it was going to be GOOD news that we were talking with the docs about taking her home assuming we got her O2 and feeding in good order.  Then...

Lets just go back to yesterday.  At ~4pm 2/22 we had a meeting with all her docs and her neuro specialist.  We found out we were still w/o primary diagnosis but they were starting to eliminate some diags. Taking her home was at least 3 weeks away due to her current instability (and we thought this was bad when we left)

So we went home had our usual crazy fun w/ Lily J.  Woke up the next day and did our routine.  Lily's friends kate and megan  came down to play for the day and off we went.  Pulled into CHOP's parking garage ~9:45.  Got to the NICU entrance at ~10.  We were told we cannot go back and we were redirected to a conference room.(can this ever be good????)  Our Dr. came in and had some BAD NEWS.  We were told

     - "Klara had an episode that she could not recover from herself.  We had to stimulate her and Bag her.  She stopped breathing and now we are concerned about her respiration.  We are currently intebating her."

In layman's terms, she is now on mechanical ventilation.  They are concerned with her being able to breath for herself. ............  Im sure you just said WHY????

Here are options as to what/why..

      -  Whatever she has is progressive:  meaning if she has a muscular myopathy is now weakening her breathing muscles (diaphram/lungs) so much so she cannot sustain her own breathing.  I choose not to mention the prognosis if this was the case

     -   She has a blood infeciton that she recently caught in the hospital:  they have tested her for sepsis.  We hope this is what caused the issue w/ her breating.  At least with this there is hope she can recover her respiration strength.  Does this mean she is cured...NO.  It means she can hopefully one day breath on her own.  And right now that would be a victory to us.

Where we go now..is up to Klara...She is not giving up so we can't either.  I know everyone has been sending her love and prayers, but she needs a little bit more...more now than ever. 

I apologize for the grimm news but this is our way to communicate with you.  I dont want to end on bad news...so i wont...

Lily once agan terrorized the NICU this past sunday.  She got to hold Klara for the first time and LOVED IT.  We couldnt get her out of her hands.  Additionally we had our first family portrait (minus our dog carmen - the NICU wouldnt let her in). 

Please continue the prayers and support..we would be LOST w/o friends and family.  

Pics ....

Right now not much happening... so here is some of the latest pics  ...