How do you prepare?

How do you prepare?  I've been asking myself that since last Tuesday!  How do I prepare, not only myself, but my daughter?  How do I prepare her for a third surgery in less than a year? NO child should have to endure this!  How do we get ready for the all the doctor's visits that are to come? The pre-op appointments with her orthopedic specialist and the new pulmonary doctor? How do we prepare for surgery day; the onslaught of doctors, nurses, anesthesiologists, specialists, etc... that will enter the room to introduce themselves before surgery?

How do I prepare for "several hours" of surgery?!?  Just the thought of that is so nerve-wrecking, to know that my sweet daughter will have to not only endure another surgery, but it will take several hours to complete.  I don't know how to prepare my child for, according to her doctor, at least another week in Children's Hospital?

This is a tough challenge we have ahead of us, one we can not avoid.  I'm so on edge and hurt by this because every surgery she's gone through so far, has been ones I thought could be avoided. They have been procedures that I thought I was doing everything for her to not have to go through them.  The February orthopedic surgery, I thought wouldn't happen because she was sleeping in her night time splints/AFO's, not every night, but even when she didn't sleep in them, she wore them the next day.  The March g-tube procedure, thought could be avoided by feeding her every three to four hours, buying lots of yogurts, apple sauces, mashed potatoes loaded with butter, my mom's homemade dressing, etc... This upcoming surgery...I  did what I was told, I put the scoliosis jacket on  Kerstin at night, and even after she didn't want to fall asleep in it, her doctor told me to make sure she wore in while she was relaxing on the sofa.  I did all of that! I still put the jacket on her, even after I thought she was pulling my leg and just didn't want it on.  Yet, her curve still increased!  She wasn't pulling my leg, we were told that the jacket had started to bother her.

How do you prepare?  How do I prepare?  The only thing I know to do is to stay prayerful, and know that she will be fine!  I'm trusting our Savior for that!

Psalms 55:22-Cast thy burden upon the Lord, and He shall sustain thee: He shall never suffer the righteous to be moved. 

Surgery day is coming...

We're getting so much support from family, friends and even strangers.  It's time now to mentally prepare myself for another surgery, and my daughter being in the hospital for at least a week later this fall.

It is going to be rough, this will lead to more appointments, follow up appointments and lots of trips to Birmingham...which is a 124 mile trip, one way.  I'm not looking forward to it, and it is going to be especially hard, since I no longer have a job, as of this past May.

I'm keeping my faith, I know the Lord will bless us, and put things in place so that we will not have to worry about the financial strain another surgery can bring.  All of this is for Kerstin, and her health! If you can, please make a donation to help us along the way.  It is greatly appreciated!

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Here we go again!

On Tuesday, Kerstin had her post-surgery, cast removal appointment with her orthopedic specialist.  We were excited, because her feet are looking good, healing fine, we just have to get her some school shoes that she can wear over the AFO's now.  Everything was going well, they didn't have that many patients, so the wait was minimal.  Although, I must say,  kept having a funny feeling about the appointment, before we left home, I kept thinking that I just did not want to take her. Even after arriving at the office, I was hoping maybe the doctor had to cancel for the day, I know they would have called beforehand.

We check-in, I was asked about the paperwork they mailed weeks before, to bring to the appointment...wouldn't you know, I completed the forms and forgot to take them with us.  Luckily, it wasn't a big deal, I redid the forms there.  Kerstin is called back, we talk with the nurse, Mandy,  about the spasms she's been having lately, I told her that I was also concerned with her leaning a lot when she's either in her wheelchair, Tumble Form seat or just seating on the sofa.  She was sent to ex-ray to get imaging done.  During the ex-ray I just had an overwhelming feeling that I wouldn't like the news we would get, yet, I was still hopeful.

We're back in the check up room, having playful convo, while I administer her bolus...in walks her doctor, file in hand. He spoke, took his seat in front of Kerstin, she never forgets a face, so she gave him that big smile, he rubbed her arm and spoke directly to her.  Exams starts, he stated she looks good in her AFO's and to keep her in them as much and as often as possible, he flexed her legs and said they looked good as well.  He even noted that her dislocated right hip has flexibility and show no arthritis.  All good news!  Then he looks at me and says, "Mom, we looked at her ex-ray and her curve has increased...she is now at a 50 degree curve..."  I think I stopped breathing!!! That's up from 40 degrees just in December.   He continued, " It's time now to talk with family, because we can't let her continue at this rate, without correcting the curve, when children get this much of an increase we have to do surgery so that it does not increase.  We don't want her at a point where she won't be able to even sit up in her wheelchair."  As always, I sitting there looking at this beautiful child that will have to undergo, yet another surgery, trying my best to hold back the tears that are burning in my eyes. " We also need to correct her at 50 degrees verses waiting to 75-80 degrees, and that surgery would be more intense and invasive, because she would have to be cut in the back as well as the front."  I'm trying to make sense of it all, even a day later...

We were also informed that, we are going to nee family friends donate blood for her surgery, they would give me all the directions for that prior to surgery. I asked how long would she be hospitalized for this surgery.  He said " Let's say surgery is Monday, she will be there at least until Friday or Saturday."  Another week at Children's of Alabama is in my near future, sigh!   He asked if Kerstin had a pulmonary doctor, no she doesn't.  He stated that was good, especially since she now has her feeding tube.  As he was talking, I'm thinking and trying to remember what is pulmonary? He told me that a pulmonologist is needed on the team because of the tube, to make sure breathing is fine, there will be heavy sedation for the procedure...he also said that the long stay is because they will have her on iv fluids, but they wouldn't want he too sedated to take her boluses, because of swelling/stomach expansion. Things went blank for me, I heard him, but it seemed like I didn't.   He continues on with reasons why it needs to be done in the next few months, pulmonary doctors don't like to have children having surgery when it's cold and flu season, the weather is too cold, because of the risk of them being in the hospital with sick children and them getting sick. I asked him if she could be fitted for another scoliosis jacket, and would it help?  He looked at me so somber and sad, he let out a sigh, and so it would not help at this stage. Devastated, because I was putting her jacket on her.  Like I said before, I thought she had started pulling my leg and not wanting it on at all.  He told me at another appointment that it was too painful for her.

 Doctor stepped out to get me the ex-ray image and said that his Nurse Mandy was going to talk with me about the pulmonologist and other things. She starts by saying that the new doctor will need to be seen a month before surgery.  I asked when does he want to do surgery, she said late September, October or early November.  I remember telling her, she will have just started back in school.  She said she understood, and we could do late October/ early November.  She said because if we do September we need to schedule the pulmonary doctor now.  So now, it up to me to talk things over, get family and friends to donate blood and let them know, late October or early November.

I'm not looking forward to the day!  Seeing this face, knowing she's about to go through something again, that no child should have to deal with, breaks my heart.

I looked at her and snapped this pic after her appointment.  I thought, "You have this beautiful smile on your face, after that appointment..." We ran a few errands and on our way home, I could not stop my tears, they were rolling down my face.  I saw her from the corner of my eye, looking at me...had to try and pull it together, no luck.  She eventually stopped and started back watch her movie.

I have faith and I know that this surgery will be a successful one as well!  I just can't help or control the feelings that this year of 2013, has not been kind.  If I could go back a couple of years...

Info:

"A Patient's Guide to Scoliosis" 

"Scoliosis and Rett Syndrome" 

"Scoliosis"

Video:

"Surgical Treatment for Scoliosis"

More to come...

My thoughts!

I guess I will "race-bait", if you want to call it that. Or, state the facts, voice my opinion, about what has been going on lately.
The election and re-election of President Obama, and as of late, the Zimmerman Trial has clearly shown that we do NOT live in a post-racial American society.  Yes, we are making strides to make sure EVERYONE is treated as equals and with respect, but we are not fully there.
As an African-American/Black woman I have never said that all white people were or are racist, that would not be fair.  I would love it if all black people were not considered lazy, ignorant, violent, criminal and angry--I am neither!
I would hope that the white people I consider friends and that have called me a friend wouldn't think I was a racist that I race-bait because I speak from experience about the inequalities we, as African-Americans face each and everyday.
Please don't think I'm stupid and angry because of my opinions on social, financial and political issues.  I am far from stupid!
I am one of 6 children, 5 living, raised by a single mom.  I can remember my mom talking to my brother before he would leave home just to hang out with friends and enjoy life, her telling him where to go, where not to go, how to act and what to do--just because he was young black male.
My mom, raised us to work for what we want, to be respectful and responsible, and to follow the rules/laws. We are all over 30 years old and none of us have been incarcerated.
So, am I angry? When I'm presumed ignorant, lazy, racist, stupid or criminal! Again, we are not post-racial and I'm not stupid! Just like so many, I just want a better life for my family!

More to come...

"It's something on Kerstin's stomach!"

As you all are well aware, Kerstin had her g-tube place back in March.  While she was in the hospital post surgery, I sent a text of her stomach before and after to our family ( it's also the one I included in a previous post ). So,  I have a very curious niece, that's 3 going on 33!  Her mom had told me a few times that  my niece would get her cell to look at Kerstin's picture every night and say that the doctor's had put "that" in Kerstin's stomach so that she could get her food.  Clearly, her mom really explained things to her, in an age appropriate way.  It became clear to me the other day that she either didn't believe her mom, or she needed further explanation, or that she finally got to see Kerstin's stomach in person, and thought she would get the full story from me, the mom.

Normally, when I give Kerstin her boluses, I do it discretely, since this is a personal and intimate process with me either having to lift her dress or her shirt to get to the 'button'.  Relaxing at home during summer break, enjoying a day at home with her cousins...Kerstin managed to pull her shirt up, exposing the port.
My niece being, curious little person, saw this and came to me and said, "it's something on Kerstin's stomach!"  I explained to her that it was Kerstin's "other belly button" and that is how she eats now. She wanted to know why because Kerstin has teeth too, like her.  Again, I explained, that she does, but she could no longer eat by mouth and that her food went directly to her stomach.  She smiled and sang my little feeding song that I sing to Kerstin at the start of her boluses: "It's going down, down, down, into your tummy, tummy, tummy!"

Yes!  Children are curious, they want to know what's going on in the world around them.  We have to be ready and willing to explain to them the things they are asking, age appropriate, of course. I believe that if we gently explain to our little ones that we all coexist here and that we all have different abilities, things would be better for all. Who knows?  Maybe then we won't have so many children staring at children and adults because they may be in a wheelchair, walk with a limp, wear glasses, talk a little differently, or have to eat from a feeding tube!

More to come...

The weight is...

UP!! Thankfully!!  My little angel was weighed again at her follow up g-tube appointment on June 3, 2013.  At that appointment she was up 9 lbs from March 30.

June 3:  We were at Children's of Alabama once again, meaning we've made the 123 mile one way trip for the 9th time since February 12.  This is the day mom gets more hands on training on her tube, the port, checking the water in the balloon, how to change it, what to do if it happens to come out...
I was a bit nervous about seeing her belly without the port, I'm not going to lie, it was a bit uncomfortable seeing her lying there with this little hole in her stomach.  ( No pictures, I couldn't this go round )  Now, every two weeks, I need to check the balloon to make sure it has 5 mL water in it. If it doesn't I need to add water to it.

Though, I'm very thankful for the weight gain, we've still been having issues with feedings and at times, her keeping so much of the formula in/down.  We are striving  and will press through those, along with the sleep deprivation I'm having because of my little one being awake most nights at 3 a.m. Just one more thing we will have to press through.

More to come...

Feeding Woes

Hard to believe it has been two months since I was told that Kerstin would have a feeding tube placed, to safely feed her and to aid in weight gain.  We have not had a weight check since it's been in place, but it is obvious she is finally gaining weight. Even after the ups and downs we've faced since she's been using the tube.

Since having the tube placed and we started her daily boluses of 1 full can of Pediasure 1.5 cal with Fiber four times daily with a 40 mL flush of water.  We still had the constant chewing, smacking her lips and dry heaving which sometimes lead to her actually vomiting.  Kerstin started to vomit so much, I took her to her pediatrician's office to make sure she didn't have a virus or cold. That weekend she was put on Pedialyte for the entire weekend.  We were in constant contact with her doctors and nutritionist at Children's about these issues either via calls or emails and even videos.  These concerns prompted her neurologist to order that she have an hour long EEG done to see if she was having seizures.  This meant another trip of 124 miles one way to get the test done.  This trip has been made 7 times in the past 2 1/2 months, with orthopedic appointments and surgery, casts changing, then cast removal, to neuro appointments and eventually another hospital stay and another surgery.

Got the EEG and  the tech told me that she did the chewing/smacking routine during the test.  A few days later, results showed that she was NOT having seizures during the study.  Thankful for that, but what is going on, causing her to do this?  Nutritionist decided and consulted with her doctor and nurse about a formula change.  Her Pedisure was changed to Pediasure Peptide 1.5 cal, same feeding schedule.  Still not working  sadly. Now, nutritionist suggests that her feeding changes altogether! Really?  How so?

Kerstin will need to have smaller boluses through the day, 10:30 am: 120 mL of Pediasure Peptide along with 40 mL water; the same at 1:30 pm, 4:30 pm and 7:30 pm; she will also get an overnight feed using a Kangaroo Joey feeding pump, to run 10 hours overnight, that would start at 9 pm in order for her to be off the pump around 7 am to get ready for school.  The first night of use, my princess looked frightened at the sight of the pole and pump.  We had to explain to her that she would not be stuck, and that it was not an IV.  Told her that she would have her Pediasure going "down down into her tummy tummy.." ( our little sing song, while she's receiving her boluses ).

 The new schedule did not work very long,  the second night/morning, Kerstin started to vomit while the feed was still going.  I'm so thankful that we have been blessed to have great people in our lives and a sister who is also a nurse.  She told me to check with them again because with her having a bolus at 7:30 pm and going on her pump at 9 was possibly too much on/in her stomach.  The 7:30 bolus was dropped and things have been going more smoothly.  Granted, she is still doing the chewing/smacking, not as often.  It is my prayer that these instances will cease altogether.

We finally got a schedule to wean completely off of the Topamax.  I guess her neurologist wanted to see the results of the EEG before deciding to stop that seizure medicine.

We are on a journey!  We are fighters and don't give up easily.  The Lord is blessing us, Thankful for it.

More to come...