Sunday, October 11, 2009

Latest news

Well, I know it's been an extremely long time since I updated this blog. Sorry about that. Things have been busy around here with working full time and trying to get two kids off to kindergarten every morning. Now that I have some free time on this lazy Sunday afternoon, I'll let everyone know how Charlie is doing.

After Charlie was released from the hospital at the end of August, he started school a week later than the other kids. The first day he went for half a day - mainly for us to determine if he had enough endurance. He did great and shortly after started attending full days. The first week was difficult, as Charlie walked much slower than the other children, could not run, climb, or play very well with the other kids at recess, and more importantly he was unable to sit comfortably for any amount of time. We tried different chairs and different pillows for him at school. Nothing seemed to work, so I contacted the physical therapist at the elementary school. She was able to observe Charlie and make some recommendations and gave him a cushion for the back of his chair. He has been using the cushion every day to sit comfortably. Charlie's teacher has been great in working with us and making some modifications for Charlie in the classroom. Our next major goal is walking to school. We live about two blocks from the elementary school. Charlie so desperately wants to walk to school in the morning with the other neighborhood kids, however, I know with his slow pace and the distance, he will be so tired by the time he gets there . . . so we drive . . . I'm hoping within the next week or so we may be able to start walking to school.

Over the past few weeks, Charlie has slowly been regaining strength in his legs. It took us several weeks to schedule a physical therapy evaluation and begin sessions for him, mainly because there is a limited number of pediatric physical therapy locations in our area. Charlie has now been attending physical therapy for three weeks, and it has really helped! Charlie's strength has improved. He is starting to run and ride a bike again. He can bend down now without having to hold on to something to pull himself back up. He is able to sit more comfortably in chairs without a pillow or back cushion. Charlie is slowly starting to put his shoes and socks on by himself along with putting his own pants on, both of which have been painful for him (I guess because the way you have to bend or pick up your legs to do these things.)

We have visited the pediatrician and neurologist for follow up visits. Apparently, Charlie's case was fairly well-known and discussed while he was at Texas Children's Hospital - not only because Guillain-Barre Syndrome is a rare syndrome, but also because Charlie is so young and because he experienced some symptoms that are not necessarily typical of Guillain-Barre. Unbeknownst to us, several more doctors and neurologists were interested in Charlie's case and were consulted for treatment. Although Charlie's strength is improving in his legs, he still does not have any reflexes in his legs (you know, when the doctor hits your knees with that little rubber hammer and your leg is supposed to kick out - Charlie has no reflex). The neurologist says this is typical, and it may take Charlie up to six months to regain his reflexes . . . interesting to me. The neurologist also recommended that Charlie not get his flu shots this year - he said because Charlie's immune system is still weak and recuperating. So, the rest of us need to keep our selves healthy and try not to get sick - we've been lucky so far!!!

Each day is a new day for us, as Charlie slowly gets better. We are slowly trying to wean him from his pain medication. He actually poured his nighttime dose down the sink drain one night and then woke up screaming and crying because his legs hurt so bad. Stinker! So we know he still needs the pain medication right now - we are just decreasing the amount he takes. He is taking a specialized medication for nerve pain, which is quite expensive. We've also received his medical bills from his stay in the hopsital. All I can say is OMG and thank goodness the insurance covers a portion of this!!!

Again, I thank everyone for keeping Charlie in your prayers. So many of you have been concerned and keep asking about Charlie. We're so thankful for the continued prayers and support. For those who have given us specialized chairs, seat cushions, and helped take Charlie to his physical therapy sessions - we thank you! I'm so very appreciative of everyone who has offered help over the past few months. We are slowly getting back to normal . . .

Although Guillain-Barre is a rare syndrome, it seems that everywhere we go, people have told us about someone in their lives who has experienced this syndrome. When Charlie got his haircut and had trouble sitting in the chair, the hairdresser immediately made some modifications to help Charlie sit in the chair more comfortably, because her grandmother had suffered from Guillain-Barre, and she was aware of the painful side effects. I worked with a 13-year old student last year who had this syndrome. I just found out there is another teenage student at one of my campuses who is currently suffering from Guillain-Barre. When we were at Texas Children's Hospital, there were about six other patients who were there with the same syndrome.

**** So, I end on this final note: Guillain-Barre Syndrome is a rare syndrome. It is typically caused by a virus or vaccination. During this heightened flu season, there is so much media hype about getting your flu shot. Although there are several advantages to getting the seasonal flu shot and swine flu shots, please be aware of the side effects when considering these vaccines, especially for young children. (Ask the doctor/nurse for the insert in the box for the flu shot - you'll be amazed at what is listed). There are several natural remedies to keeping yourself healthy. Make your own informed decision. That's just my opinion. ****

Have a great week, friends!!

Monday, August 24, 2009

Going home!!

It has been a very busy past few days with a continuous stream of doctors and therapists visiting Charlie in his hospital room. We've even had some family come visit, which makes the day less "boring" for Charlie. Although TX Children's Hospital provides many services and activities for the patients, there's only so much you can do to take your mind off being there! Charlie's newest favorite thing to do is converse and interact with the nurses, as he has now decided he wants to be a nurse some day. Since Charlie does not like to take some of his medications and does not like the blood pressure cuff tightening on his little arm, he has bargained with the nurses by telling them that if he "is good" and takes his medicine or gets his blood pressure taken, then, in exchange, the nurses will let Charlie take their blood pressure and temperature. Charlie even likes to put on the doctor gloves as he listens to their heartbeats or puts the blood pressure cuff on the nurses (he even knows all the right buttons to push on the machine!). He struts himself down the hall saying "hi man" to the male nurses and therapists, pretending he is one of them.

Over the past few days, Charlie has slowly been regaining his strength and mobility in his lower body. He is walking better and climbing better. He still has difficulty sitting for extended periods of time, lying on his back, or bending over. He still experiences pain in his lower legs, especially when moving in certain positions. However, the pain does not appear as severe or as frequent as it was initially. Overall, the doctors have seen great improvement and decided to finally send Charlie home today - YEA!!! Interestingly enough, the neurologist says he is able to return to school; however, I think we will keep him home for a day or two or three to let him recover and monitor his pain and mobility.

Charlie is a strong little guy - so brave for all that he has endured. We are proud of him and hope to send him off to kindergarten soon. We know that he will experience some physical difficulties at school, such as not being able to sit all day or run as fast as the other kids, but he has so many other strengths and talents.

We will be following up with Charlie's pediatrician in the next week and again with the neurologists in one month. Charlie will receive physical therapy for one to two times per week to help him regain his strength and re-build his posture. Hope all goes well.

Thanks again for everyone's prayers, visits / stays at the hospital, and willingness to offer help. We appreciate each and every one of you! Hopefully, Charlie will have a peaceful rest at home in his own bed tonight. Good night and sleep well.

Friday, August 21, 2009

Good news

Thursday - We have good news! Charlie's condition is improving slowly. After lying in a bed either at the ER or in the hospital room for 2-1/2 days, Charlie is able to get up and move around with minimal assistance. The physical therapist (PT) and occupational therapist (OT) came to work with Charlie and helped him to sit up in a chair (still needs a pillow behind him for support, mainly because sitting straight up still hurts his legs), put his shirt and shorts on, eat by himself, and walk around the PCU floor (holding on to something for support). He did amazingly well! He is wobbly on his feet and has a difficult time just standing still. He is not walking on his tiptoes as much, which is a good sign. He is still unable to put on his shoes and socks - bending his legs hurts. The OT will continue to work with Charlie one time per day (fine motor skills - dressing self, eating), and the PT will work with him twice per day (gross motor skills - walking, kicking a ball, climbing, sitting).

The PCU doctor says Charlie is progressing well and put in an order this morning to move him to a regular floor. Procedures have been taking a while here, as we have learned that TX Children's Hospital is currently filled to capacity (Now we know why we were in the ER for almost 24 hours before being moved!). Luckily, we have had some really wonderful nurses and staff who have been helpful! We are so grateful!

The neurology team also came to assess Charlie. He is still experiencing leg pain and continues to wake up in the middle of the night crying. His pain medication has been increased - we'll see if that helps. Charlie continues to have pain in his legs when he lies on his back or sits straight up. This is something that the neurologists are not sure about. Although it may be related to his GBS, it may be related to something else in his back / spine. (We are still waiting for some of the results of the spinal tap.)

Friday - We finally got moved to a regular floor this afternoon! Yea! I have to say, the accommodations here have been good. TX Children's Hospital really provides some wonderful services to the patients and families.

Keep sending up prayers for Charlie. His doctor mentioned that the earliest he might go home is Monday (he would continue to have outpatient OT and PT to help him regain his strength and mobility).

Love to all,

Thursday, August 20, 2009

Charlie's diagnosis

(Although I wrote this on Wednesday, I am just now getting around to posting it - sleep deprivation and technology problems don't mix well.)

I decided to write this blog, as we have so many friends and family who are concerned, calling and asking about Charlie. Since our time has primarily been spent at the hospital the past few days, I thought this would be the easiest way to keep everyone informed about what is happening . . . I'll begin by letting everyone know how things got started and where we are now.

The first week of August, Charlie and Emma were enrolled in Vacation Bible School (VBS). They were so excited, especially since VBS was happening at gramma's church! On Wednesday night, August 5th, Charlie complained of a sore throat. He did not have a fever, so I sent him to bed and told him we would check his throat again in the morning. The next morning, Charlie continued to complain of a sore throat, so I gave him some meds for a pain reliever. About 10 minutes later, he was vomiting. He stayed home from VBS Thursday and Friday - he was very disappointed. He had symptoms of vomiting, sore throat, ear aches, and lethargy for Thursday - Saturday. No fever. By Sunday afternoon, he was back to his normal self - running and playing with his twin sister, Emma.

On Tuesday, August 11th, around lunch time, Charlie started to complain of leg pain (both legs, lower front area) and eye pain (both eyes, which he described as someone "poking" him in the eyes very hard). The pain was severe enough that he was screaming and crying that night and had a difficult time sleeping. This type of pain was unusual for Charlie - we knew something was wrong, so we called the on-call nurse. She did not have an explanation for the pain but advised us to continue Ibuprofen, heating pad, and ice packs for the leg pain. Although Charlie's eye pain was gone the next morning, he continued to experience leg pains the following day. On Thursday, we took Charlie to his pediatrician. The pediatrician suggested that perhaps the aches and pains were the result of his viral infection from the previous week. Charlie was tested for the flu - test came back negative. The pediatrician told us to continue what we were doing for the leg pain and continue to monitor his overall symptoms. We noticed that his leg pain seemed to be more severe at night, when he was lying down. We also started to notice that he was having difficulty doing things that he previously was able to do - he could no longer put on his own shoes and socks, bend down to touch his toes, pick things up off the floor, climb into his bed or the bathtub by himself, sit comfortably in his booster car seat, or swing his legs back-and-forth on the swing. This was very scary!! Saturday night he was so miserable and screamed and cried almost the entire night. He had not slept peacefully the past four nights. He also started to complain of a tingling sensation in his feet and toes. We called the on-call nurse and the on-call doctor at TX Children's Hospital. Neither could offer an explanation about the pain and seemed to be baffled at his symptoms. They suggested we contact the pediatrician again on Monday.

So . . . Monday afternoon (August 17th), I took Charlie to the pediatrician again. She examined Charlie again and suggested he might have meningitis due to some stiffness in the neck. She referred us to a pediatric specialist in the ER at St. Luke's Hospital in Sugarland. After another examination, the doctor at St. Luke's suggested that, instead of a problem in the neck, there might be a problem with Charlie's lower back that was causing his leg pain and mobility problems. Blood work and x-rays of lower back, hips, and legs came back with no significant findings. Next step was to see if there was something on Charlie's spinal cord (like a tumor or inflammation) that was causing his leg pain. An MRI was recommended. So, Charlie was transported to the ER at TX Children's Hospital in an ambulance (mommy got to ride along!!). Once at TX Children's Hospital, Charlie was examined by two different doctors and a neurologist. More blood work and an MRI on Charlie's spinal cord. On Tuesday morning, 18 hours from our initial visit with the pediatrician Monday afternoon, we finally had an answer. Charlie was diagnosed with Guillain-Barre Syndrome (GBS), a disorder in which the body's immune system attacks part of the nervous system. Although this appears to be a rare disorder, the neurologist at TX Children's told us that she has seen about 6 patients with GBS over the past week - very unusual.

Before I talk about treatment and prognosis, I also have to mention that after 21 hours involving doctors, examinations, blood work, x-rays, an MRI, and sitting in the ER, Charlie also endured a spinal tap to check the fluids in his spine - luckily, he was sooooo tired and worn out that he slept through the whole thing. Our big boy trooper!

Treatment and prognosis: His treatment will involve immunoglobulins through an IV for 5-10 days at TX Children's Hospital. He received his first dose on Tuesday evening. Good news - the doctors think they caught the GBS in the early stages, as it is his lower body that is affected at this point. Bad news - we have been told that the symptoms may get much worse before they get better. Possible paralysis, difficulty breathing . . . SCARY, but we will handle it as it comes. Although severe symptoms may occur, these symptoms are usually temporary and the majority of patients recover. Recovery may occur within a few weeks to several months and usually involves physical therapy and occupational therapy to help the patient regain his/her strength and functioning. Since severe symptoms are possible, Charlie is currently in a room at TX Children's on the Progressive Care Unit (PCU) - patient to nurse ratio is about 2:1, so Charlie can get immediate care if needed.

Here is a link to learn more about GBS -

Although the next few days are filled with uncertainty about the effectiveness of the treatment and Charlie's recovery rate, we know we are in good hands with the doctors, specialists, and therapists at TX Children's Hospital. This has all happened within such a short period of time and has seemed like a whirlwind of questions, physical exams, tests, and procedures. We have seen and talked to soooo many doctors, partly because some of his symptoms do not fit the "normal presentation" of GBS, so extra specialists or teams of doctors are consulted (plus this is considered a rare disorder). I am emotionally drained and soooo extremely tired. Luckily, my mother-in-law is in town this week, as she is here to watch the kids, since Hampton and I started back to work this week. We are grateful for our family who have been here to help and are so appreciative of friends and colleagues who have called or emailed us with their concerns and willingness to help.

I will continue to ask for prayers during these next few days. Keep us in your thoughts and prayers, especially Charlie - he is so excited about starting kindergarten this year!! He was supposed to start on Monday, August 24th, but, at this point, we have no idea when he will start. He was also excited to start playing flag football in a few weeks - don't know what will happen with that???

We will keep you all posted about Charlie's condition and recovery.

I'm dozing off as I write this, so I'm off to take a nap now . . .