The wild Goose Chase

 

About a month ago I noticed that Hailey had begun turning her right foot inward as she walked. This was very inconsistent, so I decided just to watch and see how things went. Later that same week I decided we would get out and ride the bike she had gotten for her birthday. I quickly realized that she did not have the leg strength to peddle. SIGH! I tried not to cry, but it was very overwhelming to realize that Hailey had yet another battle to overcome. She will overcome, She ALWAYS does.

After I made this discovery, I started to ask others what they thought. I guess I should quit doing that, because I got so many different opinions that I started to doubt myself. Well, the doubt was gone when a friend of mine, whom I had not said anything to, asked what was wrong with Hailey’s leg. I knew then that I had to make an appointment.

I called the Neurosurgeon, who said to call the Pediatrician, who said to call the Neurosurgeon. And so the story goes when you are dealing with Chiari/Syringomyilea. We did end up going to the Ped. who looked Hailey over and acknowledged that she was weaker in her right leg. All that did was lead to more questions, and more tests. She is referring Hailey to have a MRI/CT scan. If there are any changes in that she will send us back to the Neurosurgeon.   She is also sending Hailey to get a Physical Therapy Evaluation done. Basically she thinks it’s due to the Chiari. and our NS doesn’t think anything could ever be related to the Chiari.

Just so we are clear I am going to list the most common symptoms of Chiari. and Syringomyelia. After you read them, you make your decision.

Chriari Malformation

• Neck pain (running down the shoulders at times) 
• Unsteady gait (problems with balance)
• Poor hand coordination (fine motor skills)
• Numbness and tingling of the hands and feet
• Dizziness
• Difficulty swallowing (sometimes accompanied by gagging, choking and vomiting)
• Vision problems (blurred or double vision)
• Slurred speech

Less often, people with Chiari malformation may experience:

• Ringing or buzzing in the ears (tinnitus)
• Poor bladder control
• Chest pain, in a band-like pattern around the chest
• Curvature of the spine (scoliosis) related to spinal cord impairment
• Abnormal breathing — specifically, sleep apnea, characterized by periods of breathing cessation during sleep

Syringomyelia

• Muscle weakness and wasting (atrophy)
• Loss of reflexes
• Loss of sensitivity to pain and temperature

Other signs and symptoms of syringomyelia may include:

• Stiffness in your back, shoulders, arms and legs
• Pain in your neck, arms and back
• Bowel and bladder function problems
• Muscle weakness and spasms in your legs
• Facial pain or numbness
• Spinal curvature (scoliosis)

Has it been that long?

Wow! I just realized how long it has been since I posted anything on this blog. I guess you could say that things have been more than a little but crazy.

Hailey had her follow up MRI, and we got the results Dec. 2. Everything looks great. Her Syrinx is still there, and it’s the same size, but it has not grown any, and that’s great! Hailey has had only one headache since we got her home, and that was because of her little brother. She also seems to be balancing better. The surgery has really seemed to help her those area’s, and for that I am glad.

Hailey’s time in the hospital is still fresh on her mind. She talks about it frequently, and with anyone who will listen. She is still bothered by her scars, and tries to show them to people even though her hair is growing back. I am really hoping that her anxiety about all that happened this summer will end soon. I feel helpless, and don’t know how to help her process it all.

Hailey is a big sister again. Liam Andrew was born Nov. 2. 2010. She is so good with him. Even as I type she is bouncing him and keeping him happy.

That’s about all I have for now. I am working on several posts. Some may back track a bit, but that’s ok. Now that I am back in the swing of things, I should be able to get them up.

The Ugly Truth

There is an ugly truth about having brain surgery. They shave parts of your hair. I have had several parents ask about how we dealt with the hair issue, and how Hailey dealt with it. So I thought that I would address that issue in hopes to ease some of your minds.

When Hailey had her first surgery I wasn’t really all that worried. They only shave a small portion of hair underneath her ponytail, so her hair laid over it perfectly. When we went back, and she had to have the other surgeries, it became clear, that this would not be the case, and I worried. (It is important to note that feeling this way is normal, and ok)

Comments by others and myself were quickly made about Hailey’s hair. She heard them and became self conscious. That is when I decided it was time to develop a different mind set.  Sure, we are all a little vain, and no one wants people starring at your child. But it’s more important that we focus on the fact that our children survived. When I caught onto this mindset it was much easier for me to discuss things with Hailey. I was able to put her mind at ease, and together we came up with simple things we could do to make her hair look better.

• Scarves
• Headbands
• Covering the front of her head with her bangs
• Letting her see other children with no hair, so that she didn’t feel alone.
• Talking to her about inner beauty, instead of focusing so much on outer beauty.
• Not saying much about where she could hear.
• Allowing her to express her feelings about it.
• Allowing her to tell others why her hair was shaved, if she felt uncomfortable, or saw them starring.
• Hat’s
• Encouraging her everyday, and letting her know how much you love her.

The most important thing that we learned to do was to drop it. It is possible to fix her hair in such a way that hide most of it. But when we as mom’s draw attention to what we are doing, the child becomes anxious, and self conscious. Since we learned to drop it, Hailey learned to drop it, and that was best for everyone.

Field of Angels

 

(long post, but worth the read)

If you have a child with special needs, whether it be medical needs, or mental health needs, you know the reality of your child being left out of activities. Now I am all for inclusion, but sometimes that is not a reality.

Take baseball for instance; Sure they will let your child on the team if they have ADHD, or even mild Autism. Some teams will have children in wheelchairs. But what is the reality of that child truly being included? They get to bat (because the league requires it), They may even play one inning in the field, but most of the game they are on the bench. It’s really hard for parents as well. That’s something only a parent of a SN child would understand. It’s so hard as the parent to fight ALL of the time for inclusion for your child.

Hailey has always wanted to play sports. We have tried several.  Though they were fun for her at times. They also presented challenges. Well, seeing as how she had 5 brain surgeries this summer, I was not planning to have her in any sports. The accommodations would just be overwhelming, and I didn’t feel like having her stared at and treated differently.

Last week I was told about a special needs Baseball league that was starting called, Field of Angel’s. I gathered all of the information, and reluctantly signed her up. I’ll be honest, I had no idea what to expect, and I was concerned that this would draw even more attention to the fact that she was different.

I was pleasantly surprised when we arrived at practice. She was accepted as part of the group right away. There were all types of children, with all types of diagnoses’. Hailey made friends immediately. Each child had a “Buddy” to assist them as little or as much as needed. There was no attention brought to the SN of the children. They were all treated just like any other child. Practice went like any other practice.

So what was the difference? Each child was given a fair chance to be successful,  Each child received the individual help that they needed, There was cheering and encouragement the whole time, If a child needed a break they took one, and nobody thought anything about it. They all got hit’s, They all got to play, they all made it to home plate! If they sat down in the field, it was OK, and nobody looked at the parent and wondered why their child wouldn’t cooperate. The parents were all understanding of each other, and therefore friendships could be made.

Saturday was their first game. It was set up like any other baseball game. the field was lined, the Fan’s were there, and the games went smoothly. It was the most amazing thing i have ever been apart of. Just look at the pictures and decide for yourself.

All I can say is that I was in tears the whole game. this league is truly amazing, and God given. I wish there were more things like this out there.

PICC Line is Gone!

We went to the Doctor yesterday, and Hailey is doing so well that they said she was done with her Antibiotics, and they took out her PICC Line. Hailey was so excited. It was like we let her off her leash. Walking no longer exists, she wants to run everywhere.

After going to the Doctor Chris and I took her to play Laser tag for the first time. That was a hoot. Hailey LOVED it.

Now we have to just watch for symptoms. If she has none we will have a follow up visit for an MRI comparison in 3 months.

Now to get to work on that pesky ADHD. LOL!

She's Home!

Through a lot of prayer Hailey was able to come home this past Thursday. She was so excited she was bouncing in the van and singing at the top of her lungs the whole way home.

When Hailey got home she was so excited to see everyone. They had streamers all over the yard, balloons on the mailbox, and her favorite meal waiting for her. Her brothers ran to her when they saw her and hugged her.

She has done a really good job helping to take care of her PICC Line. The biggest problem is just trying to hone her energy. She has also been picking at the tape, but that is to be expected. We are getting back into a routine, and that has been a challenge.

Hailey has to go to the Doctor next week to make sure that everything is going well, and if so the will remove her PICC Line.

Here are a bunch of pictures of her arrival home. Hope you enjoy.

Woo Hoo

The Doctor came in yesterday and was very pleased with the progress Hailey is making. He Clamped her EVD, and said that if all went well, they would remove the EVD the next day. (today)

I can't wait to get to the hospital today. I know that things went well yesterday, which means that she will get her EVD out today. They are going to do a Ct to make sure that the new patch is holding up well. If all of that looks good, they will begin the process of sending her home.

Hailey will come home with a PICC Line so that we can administer her antibiotics. She will have a lot of restrictions. At this point non of us care, we just want our baby girl HOME!

The Light at the end of the Tunnel?

It brings tears to my eyes to think about the improvement that Hailey has made. Friday the Doctor increased the pressure of her drain to 10. Hailey did so well, and had no headaches. She was able to get out of the room, and since my mom was here with her to level her drain, she was able to participate in family fun night. She had so much fun, and even participated in, and won BINGO.

When the Doctor came in Saturday morning, he was very pleased with how well Hailey was doing. he increased the pressure on her drain to 20. She has not had even one headache. I can't wait for him to come in today. I am hoping he will clamp the drain shut so we can see how she does.

4th Surgery

After they placed the EVD she drained a lot of fluid. They took some fluid fr testing and within 24 hours, Bacteria had grown. Pseudomonas, had reared it's ugly head, and lead the Doctors to believe that the bacterias had set up on the patch. The only option was to remove the patch, and open the Dura to make a new one.

Hailey was a little upset at the thought of having yet another surgery, and so was I. She went back to surgery, and we were sent to the ICU waiting room. When she came out of surgery and they brought her up to ICU we were able to see here for a moment. She looked so bad, and was so upset that I had to leave the room. It was more than I could bare. We were not allowed to stay with her that night, and that broke my heart. I worried about her all night. When we returned the next morning I was told that she and her nurse had a party. Though she was still very sick with a headache, I felt much better about things this time.

Yesterday she was moved from ICU to the Neuro Unit. She has received excellent care there. Today she is feeling much better, and has only had one headache that lasted only a short time. We were hoping that the Doctors would increase the pressure on her brain and begin the process of removing the EVD, but they said that she was still draining to much fluid. Maybe Tomorrow.

EVD Again

All night last night Hailey was screaming with her head. When the Doctor came in this morning he said that there was more swelling, and that they would have to put the drain back in. They got her back to surgery pretty fast.

They aren't sure why she is still not draining properly, but I think the next step is to p;ace a permanent shunt.

Romoval of EVD

Today the Doctor came in and because Hailey was doing so well being clamped he removed her EVD. They told us that she would not be going home because a new form of bacteria showed up.

Hailey was really down all day about not going home. She ended up spiking a fever and got even sadder because she thought she wasn't going to VBS either. I did however, end up taking her to VBS. Hailey met a friend there, and was doing so well, until about half way through when she said that her head was hurting. I took her back to her room, and she went to sleep.

Not what we were expecting from the removal.

Out and About

The Doctor upped the pressure level on Hailey’s brain. She responded really well. She only had a headache one day. Because she was responding so well, they got her up and into a wheelchair.

Yesterday, I was able to take Hailey out of her room for 30 minutes. We went out twice. First we went down to the play room they have here and she painted two pictures. Later, we went down to the Magic Room where they were doing Glamour Shots.

Hailey giggled the whole time. She was able to keep her hat and boa.

I am so glad that she is getting better. I feel like I can see a light at the end of the tunnel.

Wednesday Morning June 16th, I noticed that the back of Hailey’s hair was soaking wet. I asked the Nurse about it and she said that Hailey had been sweating. I was fearful that the bacteria from the sweat would get in the incisions and cause further infection, so I asked her is we could wash her hair. While the nurse was gone to get the stuff needed to wash Hailey’s hair, the NS came in. he immediately questioned me about Hailey’s hair. I told him that the nurse had said she was sweating. It turns out her incisions were leaking CSF. He immediately set her up to put stitches in to stop the leak.

Upon further inspection they found that there was swelling in the Brain, and Fluid build up. In order to release that pressure they were going to have to place an external shunt to drain the fluid. They were also afraid that she had a reaction to the derma patch, and were going to have to re-open the incisions from her first decompression and clean the are and see where the leak was coming from.

She was taken back to surgery and about 2 hours later they informed us that all went well, and that they found the leak and cleaned things up.




She was pretty out of it the rest of that night. It breaks my heart to see her this way, and to know that there is nothing I can do to help her.

(links were not working today, but I will come back and add them later. Sorry!)

Meningitis Confirmed

Tuesday June 15th the Doctors confirmed that Hailey sis in fact have Meningitis. They could not yet tell up what type of Meningitis she had. So we geared up for a few days in the hospital, and they started her on some really strong antibiotics.

I stayed with her at the hospital that night. Hailey’s heart rate kept dropping and the nurse petty much said it was nothing. At one point it dropped to 48. I was pretty scared about that and could not wait for the NS to get there in the morning, so I could ask him about it.

Recovery Success?

We got Hailey home from the surgery and it seemed like things were going great. Hailey was doing great getting up and walking around. her appetite was back, and she was even going to activities like, library craft time. She went and stayed with her Nana and while there she was able to cut back on her pain meds. We were so pleased. I had expected her to have a lot of pain for a while. her incisions were looking great. 

Friday night June 11th Hailey’s fever spiked. We decided that we would watch her and see how things went. All day she was nauseous, dizzy, and did not want to do anything but sleep. At one point her fever spiked to 102. That’s when we called her NS. They told us we could give her Motrin and see how she was on Sunday. Sunday came, and with her fever down (due to meds.) she was acting like she felt much better. So we did not worry about it much. Early Monday morning  Hailey woke with a huge headache and a fever of 101. I also noticed that the back of her hair was wet. We made the decision to take her to our local Children’s Hospital ER. I was afraid that her incisions were leaking.

I was surprised at how fast they got her in. They did Labs, a Chest x-ray, A CT, and a Spinal tap. They looked at her incisions, but found no leak. After her Labs, Ct, and X-Ray all looked clear, we were hopeful that all was well, and that I was just being a paranoid mom. We were all sad when they found that her white blood count, and protein levels were high. They also found that the Blood sugar in her Spinal Fluid was low. All of suggested infection. Seeing as how she had just had surgery, they suspected Meningitis. She was admitted to the Hospital that night.

Hailey cried, and cried, and so did I.

Decompression

 

(For more information on things like, Decompression Surgery click on the words in grey)

June 2nd we took Hailey to Monroe Carroll Jr. Children’s Hospital for Decompression surgery. We arrived at the hospital a little early and right away Hailey made a friend. There was a little stage there with a piano. She and this cute little girl danced around as I played the piano. It was so good that they we had time to do this because, it really calmed Hailey’s nerves.

Before Hailey went back to surgery the nurse dressed up Hailey’s doll. The doll stayed with Hailey throughout the surgery and seemed to help her cope. The stay in the waiting room seemed like an eternity, but the surgery only took an hour and a half. Chris and I went back with her while she was in recovery. It was a scary thing to see my daughter so out of it and just laying there in bed. We were there about 30 minutes when they took us up to PICU.

We spend one long night in PICU. Hailey was in a lot of pain, but  they gave her all kinds of medications to help. The nurses were were great, and looked after her well. I cried the first time I saw her incisions.

The next day they took Hailey to a room on the acute unit.  It was my understanding, that she would be seen by an PT to help get her up and moving around, and that she would not be able to go home until she was up moving around, eating well, and had good pain management. When the PT came she looked at her and did not really get her out of bed. She said that Hailey looked well, and that she would come by later that day with some neck exercises. The nurse that we had was just awful. She ignored us the whole day and when I would ask for pain meds, she would say, “I’ll go check, but would not return.” It was a very confusing day for us, and Hailey really wanted to go home. We finally found out that she would be staying the night. When the Doctor came in the next morning he said that she was ready to go home. It wasn’t until about 2:00 that we were released.

 

The trip home went well. She had pretty good pain management. And so began the road to recovery.

The Surgery Talk

Hailey's Decompression surgery is in three weeks. Hailey knew about the surgery, but we had only given her the minimal information because we did not want her to worry for very long. With surgery nearing, she started asking questions. We realized it was time to really talk with her about the surgery and answer any questions she had.

Hailey really surprised me at how well she took things. She even tried to make jokes about things. When we talked to her about how they may have to shave some of her hair, she asked if we could get her a wig so she could look like Hannah Montana. She was a bit nervous about the IV, but she really calmed down about it and has decided it's for the best. Her biggest concern is that she will not be able to eat or drink the day of the surgery. In fact she mentions it often.

I am so proud of the way she is handling this. Far beyond her seven years of life.

She Did It!

Hailey has always had weak leg muscles. When she did soccer she could only run after the boys for so long before she was to weak. We have been working with Hailey on her Bike riding skills and have found that her leg muscles have been a problem. She wants to be able to ride her bike without training wheels because she is the only one her age with them. Two days ago we went outside to work on her bike. Our goal was to get her riding up the sidewalk by herself. This requires a lot of leg muscles and balance. She has several of her friends show her how to stand up and push with her legs. (they were so kind to her) After I pushed her up the sidewalk several times she did it all by herself!!! I cried because she was so proud. Her friends cheered her on and really rallied around her. (Keep in mind that Hailey typically has no friends) I could not be prouder!

Surgery

It's official, Hailey will have decompression surgery June 2. We haven't really explained it all to her yet, but we know she will handle the news OK.

Neurosugeon Update

This past Monday we headed down to Vanderbilt to See a Neurosurgeon. We were excited and scared all at the same time. By the time we got there the what ifs had taken over. You know, What if he doesn't know what he's talking about, what if he doesn't listen to us, what if he says she needs surgery, what if they blow us off yet again? So we developed a plan of defense before we ever walked through the door. If they still had not corrected Hailey's name in their files, I was going to ask to speak to the office manager, If a student Dr. came in my Husband was going to tell him that we would prefer to speak with a "Real" Dr., and if they sent in any Dr. other than Dr. Tulipan I was going to demand to see him and write a nasty letter to the review board. (history. The last time we went there they sent in a different Dr. than the one we made an appointment with.



We went in and they ha not changed her name. So our plan went into action. Hopefully that is taken care of now. As we sat in the waiting room I was pleased as i watched all of the kids having fun. They were coloring and talking with each other. Hailey made a friend. I could tell right off that he had ADHD. Maybe that's why they bonded so quickly. They sat and talked. and talked, and talked. It was great! I also met a Lady who's 3 year old son had brain damage from a home accident. When he was two he pulled the pen out of a trailers door and it fell on top of him. His story of survival was amazing. I was able to talk with her about early interventions, and we will now be corresponding through e-mail. It was a much different waiting room experience than we have ever had. (we are in then ALL the time)



We were finally called back. As we sat in the room I went over our questions and asked Hailey if she had any. As you can see she was beaming from the friend she had met so getting her to focus was out of the question. Dr. Tulipan cam in. There was a student Dr. but he just stayed in the background, so our plan was not needed. We did have a bump in the road because I had forgotten to bring her scans with me. But he talked to us about Chiari and her Syrinx anyways. We were very comfortable with the information we received. Based on the radiologists report he did suggest surgery. He is going to call us when he reviews the scans so that he can have a better view and then we will know for sure weather or not surgery is in the plan. He said that anytime there is a syrinx of significant size he suggests decompression surgery. He gave us all of the facts, his success rates, and told us to think it over for a week or two and when he gets the scans he will call us and let us know what he thinks.

We couldn't have been more pleased. Now we are just praying about the possible surgery and deciding what is best for Hailey.