Wednesday, April 3, 2013

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 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!


  1. Matissa, this is such a compelling, gut-wrenching story and you've told it so well. I felt like I was with you as I read it. Your little sweetheart is such a doll . . . and she looks so little. Please continue to let me know @ellenzelwell when you post and when you can tweet an update. I will keep thinking of you and praying. ~Love xoxo, Ellen

    1. Thank you Ellen! It was a gut wrenching week for us. We are still getting used to things. I know we will be fine.