Wordless Wednesday

Casts off..

I wasn't sure if I really wanted to post these.  Miss Kerstin's casts are off...they came off on April 9.  Her doctor came into the room after they were taken off to exam her, he was pleased and stated, " Well, she looks good, no need for more casts, she's healing nicely, looks really good!"  I'm looking at her scars and thinking, "Really??!?"  I actually said that to him.  I'm happy he thought so, but me, being mom, found my daughter's feet really hard to look at.

I must say now, two weeks later, she looks good and is healing nicely.

Unexpected happenings...

Unexpected indeed!  I had every intention of posting an update on last week of Kerstin's casts being changed and her neuro appointment.  My, how things change.  Last Monday, we went to Children's of Alabama for two appointments and ended up being admitted and she underwent another surgery....all in the span of a week.

So, casts were changed on March 18, appointment went well, ortho doctor was please with her surgical sites, even though they were not a pretty site for mom to look at. Her casts can come off on April 9 and doctor cleared her to return to school after spring break ( April 1 ).


The following Monday, we are back at Children's for an appointment with Kerstin's neurologist and to have a swallow study done. This began the day that I won't forget for a very long time. Things went well with her neurologist, he changed some seizure medicines, so we were to start the process of weaning off one and increasing the dosage on the new one.  The day was a beautiful day, sunny, yet very windy.  We had plans to go to the appointments and get to the nearest Target and walk around, as her treat for being in the house so much, not being able to go to school and mingle with her peers.

 It didn't work out that way.  We left neurologist's office, went up stairs for the swallow study...Barium mixed goodness =((   My sweet girl did not pass the study!! I was so hurt, so upset, I didn't even know who to be upset with and why!  The team attending her study wanted my contact numbers to call me once doctors were able to look at her study.  I had no idea that by the time we left the waiting room and were walking across the crosswalk to go home, my cell would ring!! Urgent call!  The speech therapist stated that the study had been reviewed and that they needed to admit Kerstin to ensure that she was able to get the proper nutrition.  She wanted to know had I left the hospital because the doctors didn't think it would be safe to continue feeding her the way she had been being fed.  I lied!! The tears were burning in my eyes as I looked at my daughter, smiling and looking at the trees ( from the crosswalk windows), I told the nurse that we had left the hospital.  She was so patient and caring, she told me that she knew we lived a few hours from the hospital and she didn't want us to get home and have to return to the hospital.  I told her we would come back inside.

Here comes the whirlwind!  Once back "inside", as we're walking to the admitting office, I could barely see and I was so overcome with so many emotions...I could no longer control the crying!!! The tears and the sobs escaped, I knew I didn't want my sweet girl to see me like this, so I stayed out of her eyesight. The nurses, bless them, they couldn't hold back the tears either!  Not sure if someone told the 'clowns' to come visit her room, but they came in soon after she was admitted!

We were admitted, get this, her room this time, was two doors down from her room after her ortho surgery. Now, in come different doctors, specialists, anesthesiology  nutritionist, nurses...I had to get out pen and paper to write down names and titles.  The TV in the room has notes popping up to watch this video on seizures, watch this video on gastrostomy tube care... I must say they make sure you are knowledgeable about why exactly your child is in the hospital.

An IV is started to get fluids into Kerstin.  Later in the day, a doctor comes in to explain the first step they're going to take.  Placing my princess on an NG tube, then she would have and upper GI study done to see how things flow and to determine g-tube placement.

Day 2:  NG tube is placed!  Her nurse, Justin, was so thoughtful and caring!  He came in earlier to tell me that they were going to place the tube, and that he thought it may be a little easy on mommy if I left the room for the procedure!  My sister, whose a nurse as well, had warned me the night before, she said " I know how you are, and it can be a bit hard to watch it done."  Justin told me to go downstairs and get breakfast and the he and another nurse, Amanda, would keep an eye on her until I got back to her room.  They did, and when I reutrned my daughter has a feeding tube in her little nose. Hard for this mom to look at!

Day 3:  Upper GI study.  Determined that the NG tube was placed properly, Barium laced Pedisure was flowing in the right direction.  She was rolled from side to side, on her back, on her side and back again.
Room filled once again with doctors, nurses, neurologist, surgical team, anesthesiology   Yes, g-tube will be placed!

Day 4:  Surgery day!  One month to the date of her ortho surgery, my daughter is about to go for yet another surgery. So, we go down for the procedure...meet yet another team of really nice doctors and nurses, all confirming that "we're going to take care of Kerstin this morning,,,"  While enjoying a nice cup of coffee, I get a call to come to the desk, I quickly pour out the coffee, rush to the desk...Doctor is there, he says "surgery went well, she's in recovery, do you have any questions for me?"  I did. I didn't know what to ask first, can she get in the tub, once her casts are off?  Will she be in a lot of pain? Is this permanent? I have no idea how to feed my child through a g-tube!!! Dr. Martin, another reassuring person at the hospital, calmly answered my questions and told me that we were not leaving the hospital until I had training on how to, what not to, what to do if/when...

Day 5:  Only clear liquids via her g-tube, Pedialyte and water, starting with smaller bolus feeds and increasing at each feed.  Her midnight feed  was not pleasant, she was so uncomfortable and grouchy.  The numbness was wearing off and her belly was full to the rim with clear liquids. It took a while to get her settled, and later in the night/morning more of the strange lip smacking from Missy.  Took a video to show her doctors.  Later determined that she was in fact having a mild seizure. Neurologist informed me that when children start growing and meds are changed, if the new one is doing it's job you will see mild seizures in your child. He also said that if the child does not go into full convulsions, then the new meds are working properly. Catch 22? Not sure!  He told me that as a parent you don't want your child to have seizures at all, TRUE, but you also don't want them so medicated that they are non-responsive and out of it most of the time, TRUE.

Day 6:  Bolus feeds of Pediasure...mommy gets g-tube training!  Kerstin is able to get bolus feeds of Pediasure and they will be introduced slowly, increasing at each feed.  So far, so good.  Thank God!  It is also day 6, when mommy has to get away to the meditation room in the hospital.  I'm Thankful to God, that surgery went well, I'm also thankful to Him that we're going to make it through this too!  So, we get a visit from her surgeon's nurse, she is here to train me on some basics, and what to look for, what to do if it pops out, how to take the extension tube off, how to lock it, etc...  Putting the extension tube on, made me feel so uncomfortable, she reassured me that if I gently hold the "button" and feel the little click, it will not hurt Kerstin. Okay!  More training to come for mommy...I have to know how to replace the tube; Pray I can handle it.

Day 7: Easter Sunday! How did she do overnight? Fine! We are able to go home!  Kerstin was so happy to see the trees and traffic, I thought she wanted to watch her TV as she normally does when we're riding...she was looking out the window with a beautiful smile on her face.  No more hospital walls!! We are heading home!! The view was nice from the 10th floor of the Benjamin Russell Hospital For Children, but it was time to go!

We did go on strolls just to get out of the room, nothing like being outside of the building altogether!

After 7 days 6 nights in the hospital, we're back home, trying to get used to new routines!  I know with all my heart we will make it!  Things will get easier each day!  This is all going to be for the best for Kerstin.  She will thrive, she will grow stronger, she will be just fine!  I thank God, for all of the doctors, nurses, and everyone we came in contact with.  They were really nice and caring, so understanding and patient. It made our stay more tolerable.  I've even nominated some for the hospital's Daisy Award, hope they're considered!

Surgery!

Well, February 28, 2013 came quickly and has gone just as fast. At Kerstin's December 2012 check up with her orthopedic specialist, we were told that she may need to have surgery soon on her feet.  Doctor told us that we didn't want her getting to a point where she wouldn't be able to comfortably wear shoes with them rubbing the bony part of her ankle and start to cause callouses, and we also didn't want it getting to a point where nothing could be done or the procedure would be extremely invasive.

So, about a month later my little princess was chilling on her bean bag after therapy and I noticed that her feet looked really odd, thinking and wondering if she was uncomfortable, hoping she wasn't.  I emailed pictures to her physical therapist, saying that she was not fussy about the position and it didn't seem to hurt but it just did NOT look comfy.  Therapist emailed me back, rather quickly, said that she was sending the pictures to Kerstin's ortho doc/nurse and that she was thinking we had put the surgery off long enough and it was time to go ahead with the surgery!!! I had to walk away from my daughter, I left her with one of teachers and went into the restroom, I could not stop the tears from falling.  No one wants surgery, especially when its needed for your child.

After avoiding this procedure it seemed as if surgery day came fast.  We had to have Kerstin at the Benjamin Russell Hospital for Children at Children's of Alabama at 5:30 am, which meant that we had to leave home at 3 am to make the two hour drive to get her there on time. It was such a quiet and chilly morning, we were surrounded by a lot of people that love, care for and support Kerstin.  If they couldn't make the trip, we had tons of texts, Facebook messages, emails and calls.

Prepping for surgery!  It seemed like every minute someone different came into surgery prep room 30, to tell us who they were, what their roll was in caring for Kerstin. We saw an orthotist, anesthesia tech, anesthesiology, nurses, and her ortho specialist. Didn't know that anesthesia came in so many "flavors".  My moment of tears came when her nurse came and said to me that she was Kerstin's OR nurse and she would be taking care of my princess this morning, and that they were headed to  the operating room.  My heart seemed to skip a few beats to watch her take my daughter down that hall without me!

After 3 hours of surgery and recovery, my princess came out with her pink and purple cast and tubes for drainage.  She looked good, just sleepy, her mouth was dry from the gas and tube they used during surgery. She was still numb from the nerve blocks they used to keep from having to give her so much narcotics right after surgery.  The procedure: Bilateral Triple Arthrodesis ( more info here ), had been performed successfully on my daughter.  Doctor said that he had to lengthen tendons/heel cord more on her left foot and that she would be more sensitive about that one ( that has proven true ). 

Heading home, once mommy figures out how to maneuver and handle her newly rented wheels! Kerstin was sent home with a rented wheelchair because her legs need to be elevated as much as possible and especially when she's mobile ( in a wheelchair ).  We figured it out and we set out for home.  

Happy to be home, sweet home! Blessed that she is a tough little fighter.  She tolerates her pains well and on Saturday didn't need much of her pain meds.  This Sunday morning was not the case though, she actually cried from her pains.  Made my eyes well up, but I held up.  I don't want her to see my cry, especially not when she's still sensitive about what has gone on with her feet.  I do believe and have faith that in just a matter of a few short days my princess will be fine and able to move her legs again without the pains she's getting when she moves them now. She has so much strength and courage, I wish I had the fight she has in her!  

More to come...

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