Adjusting

Kelli is slowly getting back to her normal self.  She is finally eating and drinking more - which means we are going through LOTS of diapers because she needs to wear two at a time.  We tuck a smaller one inside the cast and place a larger one around it.

Now that she is mobile, she is able to explore and play more.  She likes to race Grandma and Aunt Katy across the floor.  She was even able to paint today!






Since it was cool this evening, we were able to take Kelli outside.  We went for a walk and then sat on the back porch to watch lightning bugs and fireworks.

On The Move

Sixteen days after her surgery, Kelli gathered the courage to try to crawl - and was successful!

Handling Emotions

Surgery is such a difficult thing for little ones to handle.  Even more so when that little one struggled with anxiety, fear, and self-esteem issues before the surgery.

The other day when Kelli and I were talking she told me that she didn't like herself.  I tried to get her to explain what she meant and why she felt that way, but either she didn't want to talk or she didn't know how to articulate her thoughts.  She has said such things before, and it seems like no matter how much I try to reassure her that she is wonderful just the way she is, that she is loved and accepted, it hasn't boosted her confidence.

So many things seem to trigger fear in her.  Seeing doctors or nurses.  Mentioning appointments.  Medicine.  Being picked up.  Bath time.  If I'm not sitting right beside her.  Using the potty.  When we were at the pediatrician's office this afternoon for her follow-up appointment, he said that her muscle spasm medicine also helps with anxiety.  We've only used it once for muscle spasms the first day after she was released from Sinai Hospital, so the doctor suggested that we consider starting her on it again for awhile to help her deal with the anxiety and fear.

I feel terrible, helpless - that as a mother I am unable to alleviate her anxiety and calm her fears.  I want so much to make everything better, but I am limited in what I can do.  I keep praying that God will step in to comfort her and heal those broken places that only He can reach.

The Adventure Continues

On Thursday we met with one of the doctors in Baltimore to talk about having a new cast put on.  Friday morning, Kelli got a new purple cast.  Fortunately, it is only on one leg and around her waist this time.  Her right leg is completely free.  The bad news is that light anesthesia makes her overly grouchy and irritable.  It was quite the difficult day for her (and us!).

Once we got home, she started to refuse to eat or drink again.  She was pitching fits and being completely defiant.  Sunday I had to call her pediatrician because she hadn't urinated in almost 20 hours.  We were told to take her back to the ER.  The wait to see a doctor was slightly over two hours, and in that time she finally used the potty.  Once we were taken back to one of the ER rooms, Kelli decided to eat some dry cereal and goldfish (the first she had eaten all day).  By the time the doctor came in, Kelli was in a playful, silly mood.  And she was willing to drink for him - something she wouldn't do at home.  Looks like it takes being at the hospital to get her to eat, drink, and use the potty!

Hospital Hopping

Kelli was release from our local hospital Wednesday evening. (I'm sure the hospital staff is thankful since she spent a good portion of her time there screaming and pitching fits!) She is now eating and drinking more and is using the potty more comfortably.

We had an appointment with the surgeon in Baltimore this morning, and she will be getting a new cast at Sinai Hospital tomorrow.  When the doctor asked if she wanted another pink cast, she said she wanted a purple one this time.

It's good to see her back to her normal, silly self again.  While waiting for the doctor come into the room, she decided to start singing and made up songs about squirrels.  (That was thanks to watching mommy's favorite Disney movie - Up.)

Quick Update

The doctors just came in and said they plan to keep Kelli in the hospital at least until tomorrow.  She needs to be eating and drinking on her own before they will release her.  Hopefully my stubborn little Peanut will stop refusing food so we can go home!

Another Hospital Stay

We took Kelli to the ER around 6:00 last night.  Fortunately, we didn't have to wait very long before we were called back to the triage nurse.  After a quick review of Kelli's symptoms and medical history, they took her straight back to an ER room.  They started IV fluids to help get her hydrated and encourage urination.  Her blood work came back normal, but an x-ray showed that she had some blocked stool in her body.

We were able to get settled in a room around 11:00 pm.  The IV continued, and Kelli was very uncomfortable and crying (and screaming) off and on.  By 11:45 she was ready to use the potty, but it was incredibly painful for her.  The fear and pain I could see in her eyes, and the piercing screams broke my heart, and it was all I could do not to cry.  I just want to make things better for her - but I know there is little I can do other than to be by her side.

She fell asleep for a few minutes after this.  Unfortunately, by 12:15 am, she needed to wake up for a suppository.  Needless to say, that was not an easy thing for her to endure.  I finally got her calmed down and back to sleep after it was over.

Between 3:00 and 4:00 in the morning (I was so tired that I don't remember the exact time) she was able to have a bowel movement.  Again, she screamed through it.  Once she was finished and cleaned up, she was able to fall back to sleep.  Thankfully she has been sleeping for a little over four hours now.

The doctors want to keep her here until they get another urine sample to test.  She may have a urinary tract infection, but they won't know until they confirm it with another test.  They also want her to be able and willing to eat and drink on her own before they release her.

Our plans to go back down to Baltimore to have a new (less smelly) cast put on has been put on hold until we take care of these medical issues first.

ER

We're getting ready to take Kelli up to our local ER as recommended by her surgeon's office.  She has not urinated in over 24 hours and is complaining of tummy pain which may be an indication of urinary retention.  She will need to have IV fluids for awhile since she hasn't been eating or drinking very much.  We also need to have her blood levels checked since I have been unable to locate the iron she needs (see previous post).  Because she has been having trouble coughing as well, they want to get a chest X-ray to check her lungs.

We still have a 7:30 am appointment in Baltimore to possibly have a new cast put on since this one is a little on the snug side and is very smelly.  However, if she is admitted to the hospital here, we will have to change that appointment.

Please keep her, and us, in your prayers.

Treasure Hunt

Who knew filling a prescription could be so difficult?  Because of the blood loss from the surgery, Kelli's surgeon prescribed a liquid iron medication which is supposed to be sold over the counter.  On Saturday, I went to Rite Aid to try to find it.  They didn't have it in stock but said they would order it for me, and it would be available Monday afternoon.

I decided that while I waited for Rite Aid to order and receive the medication I would check around to see if anyone else had it in stock.  I tried CVS and the pharmacy at Giant with the same results.  Luckily I had two doses of the iron from the hospital so I gave Kelli one dose Saturday evening and one Sunday evening, even though she was supposed to have two doses a day.

Today I went to Rite Aid to pick up the iron.  They didn't have it but said they would try to reorder it.  When they tried to look it up, they discovered that their supplier doesn't have it at all so they couldn't get it for me.  I was told that almost all the pharmacies in the area use the same supplier so most wouldn't be able to order it either.  They said my only hope was CVS who used a different supplier.

So, off I went to CVS.  They did find it in their system and are in the process of trying to order it for me for tomorrow.  On my way home, I stopped at my local neighborhood pharmacy to see if they might possibly have it in stock.  No luck.  And they couldn't order it either.

Which now has me wondering...why is this so difficult to find?  Is it rarely needed?  Is it a dangerous substance?  Are there no other young children in the area who need a liquid iron instead of the pills that need to be swallowed?  If she's not eating and not taking iron, how will this affect her?

Praying God takes care of my little girl while the doctors, pharmacies, and I search for answers...

Ups and Downs

Saturday was a great day for Kelli.  She was awake - and cheerful - most of the day.  It was good to see her playing and relaxing more.  There was a yard sale on our block, and we were able to pick up a huge stuffed horse for her to lay on.  (Thank you so much to my neighbor who gave it to us for free when she found out it was to help Kelli!)

Sunday was a different story.  Kelli was only awake for about two hours all day and was very grouchy.  Since she hasn't been eating or drinking much, she's barely used the potty.  She complains that it's difficult to get started - and she fusses off and on for a few hours before she is able to go.  Because of the way she is swollen, all urine goes down her right leg and soaks the cast.  We've tried to tape and pad the cast to keep it from getting wet, but there is not enough space between her skin and the cast to successfully do anything.

She's also having difficulty swallowing and coughing.  When she is able to cough, she says it hurts her belly.  Her left knee is bothering her also.

There's No Place Like Home

Me: : Kelli, are you glad to be home?
Kelli: Yes.
Me: So you're happy to be out of the hospital?
Kelli: Yes.
Me: Are you going to scream less now that you are not in the hospital?
Kelli: No.
At least she's honest....


I am happy to report that she had a great night last night!  Since she slept most of the day, she stayed awake until 11:30 playing and watching Cinderella II.  With the exception of having to wake up twice to take medication, she slept peacefully through the night.   As they say, "There's no place like home!"

A Collection of Facebook Updates

To save a bit of time, I'm going to copy my Facebook updates for those of you who have not seen them there...

Wednesday night:

My little Peanut is finally asleep for the night (at least I hope). Her temperature, pulse, and blood pressure are all up so the nurse gave her some more pain medication. Praying she has a restful, healing night's sleep.








Thursday morning:

holding mommy's hand 

Kelli seems to be in a pretty good mood at the moment. However, it was a difficult night for her (and mommy). For the first few hours last night she was waking up every half an hour. She pitched quite a fit when the nurse and I tried to give her medication around midnight. Then she woke up around 3:15 am and was awake and fussy for about an hour. She woke up once or twice more between then and now as well. Each time she woke up she wanted to have her arm rubbed or her hand held, so I moved my bed (aka reclining chair) right next to her so I could help soothe her back to sleep. Within the hour someone should be coming in to reduce her epidural and try switching her to oral pain medication. Hopeful that today will be an easier day for her. Thanks for all the prayers and encouraging words!

Thursday afternoon:

playing

Kelli's epidural is out and the catheter will come out when she gets her next dose of pain medication. Right now she is (finally!) eating. We've been offering her all of her favorite "junk" foods such as Doritos, chicken nuggets, fries...and the nurse offered ice cream, milkshakes, and lollipops. She has refused all. Today she finally said she wanted to eat something healthy. So, she is happily munching on an apple. Good choice, baby girl!




Friday morning:

trying to rest

Today's update: It was another difficult night for Kelli. She woke up a little before midnight in a lot of pain. Her temperature, blood pressure, and heart rate were all higher than normal like the previous night.  She needed to use the bathroom, but knew she couldn't move. She didn't want to use her diaper and wasn't successful with a bedpan. It took almost two hours before she was able to go. She screamed for quite awhile because it was so painful (which we were told was normal after a catheter has been removed). The nurse had to give her iv pain medication to help her calm down and get some rest. Afterwards, she was able to sleep for about 5 hours.
This morning she had difficulty using the diaper again and was screaming. A technician came in a bit later to trim back more of her cast around the inner thigh. Cast trimmings really scare her, and she screamed through that as well. (She's had her cast trimmed 3 times now.) Thankfully she is now sleeping peacefully. We may get to go home later today, and I'm hoping being at home will help her relax.

A Difficult Day For A Little One

Today was a bit rough for Kelli. She started to have painful muscle spasms and doesn't like the feeling of the cast or the ivs in her hands.  Since her surgery she has had an epidural which is scheduled to stay in until sometime tomorrow.  In the morning they will start to decrease the dose of medicine in the epidural and try an oral pain medication instead.  She is also taking a separate pain medication to help with the pain of the muscle spasms.  During a morning nap, they were so bad they would wake her up.  :(

Luckily she wasn't confined to her bed all day. We were able to get her into a wheelchair to take her on a walk through the hallway and to the playroom.  While she wasn't really interested in playing, the change of scenery was nice.  When we returned to her room, she opted to stay in the wheelchair instead of getting back into bed.  I'm not sure if that is because she doesn't like the idea of being in bed or the fact that she knows being moved causes her pain and discomfort.  

moving into a wheelchair

watching a movie

with her new Healing Helper puppy

Recovery

Kelli is now awake and in her own room. She doesn't want her cast on and wants to go home. However, watching her favorite movie with all her puppy friends seems to be helping.  Thank you to everyone who has been praying for Kelli and for us. You're prayers are being answered. 

Surgery Time

Kelli is now in surgery and will be for several hours.  She was a little nervous while waiting in the pre-op room.  It was the anesthesia mask that made her really flip out though.  Fortunately, it didn't take her long to fall asleep.   I'm glad I got to be with her until she was asleep.  Now praying that her pain levels will be low when she wakes up and that she will be able to handle being in a spica cast.

Super Hip Surgery

I found the article on the surgery that Kelli is going to have on Tuesday.  It's written in detailed medical terms, but it will give you an idea of what she will be experiencing.  The description starts on page 3 and goes to page 5.

click here to read about the super hip procedure

May God guide Dr. Herzenberg's hands as he performs Kelli's surgery.

Final Preparations

It's hard to believe that Kelli's surgery will be in three more days.  For the most part, I feel a peace about it.  I know God is with us and He has good plans for us.  There are moments when fear and anxiety try to creep in, but I am trying to focus on God and His promises.

Kelli knows what is going to take place, and while she really doesn't want to spend the summer in a cast, she doesn't seem to worried about it at this point.  She's starting to decide which stuffed animals, toys, and movies to take with her.  What she doesn't know is that Mommy and Grandma also have special toys to bring along to surprise her with while she recovers from the surgery.

As time allows, I will be posting pictures and updates here to keep everyone informed of how things are going for her.  Please pray for a quick recovery and for peace to fill all of us.  Blessings!