A Day For Remembering

As Hurricane Isaac makes landfall and begins to splash and pound across the gulf coast, I am reminded of a day 7 years ago that feels eerily similar.  Actually, it was this exact day, 7 years ago when Hurricane Katrina came ashore in south Louisiana and became one of only a handful of hurricanes in the history of Louisiana, who's name will go down in history.  We've all seen the images, the very devastating images of the wrath she brought across 3 states along the gulf coast.  We've all heard stories, stories of tragedy and stories of heroism.  And if you go to those parts of the country today, you will still see signs that she was there and that those places will never, ever be the same.

New Orleans is my mother's home town.  It's where she was born and raised and where she lived until she went away to college.  It's also the place my brother, Jason, calls home today.  So it holds a special place in my heart and when something like Katrina or Isaac threatens the area, it makes me pay a little closer attention.  But on this day, 7 years ago, my attention was diverted elsewhere.

After 98 days spent watching over and holding my baby boy in the NICU at Texas Children's Hospital, we were finally preparing to bring him home.  It had been a very long process, one that I wasn't sure would ever come.  We actually thought we were going to bring him home a month earlier, but then it was decided that he would need a tracheotomy, and that delayed our homecoming by another month.  During that month, we spent time loving him and caring for him and learning how to do so at home.  We learned about suctioning secretions from his trach.  We learned how to give him a bath without getting water in the trach.  We learned how to clean the area around the trach and how often and we learned how to change the trach tube out at least once a month.  We went through a few "classes" with one of the nurses on how to do this, using a plastic baby to practice.  Then the day came when we had to do it on our real live baby boy.  That was pretty scary.  But we did it and proved to everyone that we would be able to do this on our own at home.  We had already taken a basic infant CPR class, but now we had to repeat the class and learn how to do CPR on an infant with a trach.  And our baby had to do a little test of his own to prove that he was ready for the trip.  He had to do a car seat test.  This means he had to spend 1 hour in his car seat without having any episodes of desaturation or bradycardia.  So we took that time to attach his car seat to his stroller and walk around the NICU, saying goodbye to the many nurses who had taken care of him over those 98 days and also to the few families we had met along the way.  The hospital did a great job of preparing us and him for the day we had been waiting to come for 3 months.  Then the day finally came.

We got him dressed in the cutest little Polo (yes we started him in Polo very early) onesie.  We got all of his belongings that he had collected along the way packed up and then we sat and waiting for the Kangaroo Crew to show up.  The hospital required that his first car ride home would be in an ambulance, just in case something happened along the way.  Once the crew showed up, and he had finally finished his last hospital feeding, we loaded him in his car seat.  I remember that he was really small in that seat, and we had to roll up a few blankets and put them around him in the seat so he wouldn't flop around in the extra space. We attached the seat to a gurney, and began to walk out of those NICU doors for the final time.  I remember many of the nurses lining up to tell us goodbye on the way out, and I remember one nurse in particular telling us not to come back.  That was just her way of telling us to take good care of him and make sure he doesn't need to come back to the hospital, like some other kids end up doing after discharge.  We went downstairs and loaded him into the ambulance and we were finally ready to drive him home for the first time. 

Tommy rode in the ambulance and I led the way in the car.  I couldn't believe this was actually happening.  When we drove up in front of our house, we were greeted by a few nurses from the nursing agency we would use.  The first few days, we had a nurse around the clock to help us take care of him.  Then after those first few days, we had a nurse for about 8 hours during the day and 12 hours at night, giving us about 4 hours by ourselves.  That lasted about a week before I was done having someone there during the day.  I didn't want to just let someone else take care of him.  I wanted to be just like every other mom who took care of their newborn.  So I really didn't let the nurse do much to help.  I finally decided it wasn't necessary to have someone there during the day when I was doing all of the work myself.

On August 29, 2005, our baby boy was finally home.  We brought him inside and layed him down in his crib for the first time.  He looked so incredibly small in that crib.  I look back at those pictures now and can't imagine that he was ever that small.  He did amazingly well with the trip and he adjusted to his new surroundings in no time at all.  We were finally home as a family of 3.   And with the exception of a few short stays, we made sure to heed the words of that nurse who told us to not come back.

 

 

 

Loaded in the car seat.

 

All tucked in, ready to go home.

I'm not so sure why it's so bright out here.

Loading up in the Ambulance

Home, but it's entirely too bright.

Thanks for the shade.

All comfy in my new bed.

Catching up

Yes, I know.  It's been a while since I have blogged.  It's summer time.  That's the only excuse I have.  Right now I'm sitting at TCH, which John has a bronchoscope and hearing test under anesthesia.  The bronchoscope was supposed to be a month ago, but when we decided to add a hearing test to it, we postponed so we could do them all at the same time.  Only one time under anesthesia is our motto.  So I have a good 2 hours or so to kill.

I was reading back at the last post about his sleep study results and discovered that there have been some changes since I last wrote.  After we saw the ENT and began capping him during all waking hours, he was doing great.  We continued putting him to sleep at night with his trach open and no oxygen and he slept well.  Then we saw the Pulmonologist.  We found out something about the sleep study that we were not aware of.  While his sleep apnea has greatly improved over time, he apparently had high levels of Carbon Dioxide for a large part of the study.  Of course this is not good.  The body needs to expel most of the Carbon Dioxide, otherwise, it can begin to affect other organs.  She said it isn't any kind of structural problem that is causing the retention, but it's just that his brain is not telling him to take deep enough breaths to get rid of it.  So she wants him back on the ventilator at night so it will help him to take deep enough breaths and expel the gas.  This is obviously not what we wanted to hear.  He had gone 6 months without a ventilator and we thought we were done with it for good.  And here we are going back on it.  What a pain.

The next week, we saw the sleep doctor/neurologist.  Her feeling was that if we take the trach out now, he may do ok.  But we don't know that for sure and it would be a risk.  She feels like if we wait 1 or 2 more years, then his airway will grow and he may be ready to have it removed then.  She asked us to just be patient.  I feel like that is all we have done for the last 7 years, but if he's not ready to be without it, then we want what's best for him.  We discussed the possibility of him using a bipap mask when he sleeps instead of the ventilator.  If he were able to use that, then the trach could come out because he would still be getting support.  However, there is no way in the world he will leave that thing on when he sleeps.  We even met with a nurse to work on getting him used to wearing it.  She gave us some tips to use to work on it at home.  He will let me put it on top of his head, but as soon as I get it to his nose, he is ripping it off.  I just don't see that happening, and honestly, I think we are better off just using the ventilator.  If we went to bipap, we would likely lose our night time nursing, which means I will be up and down all night and wouldn't get much sleep.

Last night, I took John to his new school to meet his new life skills teacher.  I have finally accepted that he has to go to this school.  I was feeling a little better about it, until I went to this orientation last night.  I discovered that his new class will have 12 kids in it to start the year, with 1 teacher and 3 paraprofessionals.  That is more kids than his class had last year with the same amount of adults.  I can't imagine why they moved him from the school he was at to alleviate some of the crowding problems, only to put him in a school where his class size is bigger.  I am going to meet with the nurse, teacher and teacher's aides on Friday to go over John's care with them and make sure everyone is on the same page.  But I get the impression that the teacher is going to be a bit overwhelmed.  I am worried about his health and personal care, of course, but now I'm beginning to worry even more that the progress he made last year will suffer this year.  I will just have to keep praying and trust God that  he will take care of everything.

I wanted to leave you with a picture of him in his extra special PJ's that Texas Children's has kids wear when they go into surgery, but my iPad won't let me.  So much for this Apple is superior garbage.

Finding a Church Home

We feel very blessed to be part of a church family that helps us to grow spiritually and who loves our family. Yesterday was the first Sunday in a few weeks that I was able to be at church, and I realized just how much I missed it. When I woke up this morning, it was on my heart that I needed to share with everyone (well, everyone who reads this) just how lucky we are to have such a great church home and why we love it so much. One day, before we were married, Tommy was in the grocery store on a Sunday just after noon. He rounded the corner and literally ran into a couple he knew from 1st Baptist in Lafayette. It was obvious to them by the way Tommy was dressed, that he wasn't at church that day. So they asked if he had found a place to go. They told him about this great church nearby that they were attending and told him to try it out. So two weeks after we were married, we attended our first Sunday at Tallowood Baptist Church. We fell in love immediately. We became regular members of a Sunday School class with other young married couples. We thoroughly enjoyed the pastor and the messages he brought to us each week. We also made good friends through the church, friends who are today some of our best friends. When John was born, most of our time was spent at the hospital with him. For 3 months, we spent every Sunday at Texas Children's Hospital, just being with our son. We had many visitors from our church over those 3 months. We had ministers come to visit us, we had friends from Sunday School come to visit and even once we had a total stranger come to visit. She and her husband had visited our Sunday School department the previous Sunday and she heard about our family. She happened to be a doctor at the hospital so she decided to come down and introduce herself to me and let me know that if there was anything I needed or something medical that I didn't understand, I could call her anytime and she would help me. All that from a total stranger. How awesome is that? We even got phone calls from people in the church that we didn't know, who saw in our Sunday bulletin that John had been born. Our church prints each Sunday when a new baby is born, who the parents are and how much the baby weighed. When they saw his weight, they figured he must have been premature, so they looked us up and called to tell us they had clothes that might fit him or just to offer us advice because they too were parents of a premature baby. All of these things made us feel very loved and gave us the support we desperately needed during those difficult times. When our church decided to start a new church in the Katy area, we toyed with the idea of going there because it was much closer to us. But we thought about how much we love our pastor and all of our friends and we thought about all of the support we got during those months and years after John was born, and we decided we just couldn't leave. After John came home from the hospital, we weren't sure what to do about church. We wanted to go, but because of his medical issues, we just weren't prepared to leave him in regular child care. We talked to the directors of our Sunday School department and they told us we could bring him with us to Sunday School. So that is what we did, for 3 years. Each Sunday, we would go to Sunday School and take John with us. We liked to say that he was our class mascot. But we would leave after Sunday School without going to the service. We felt he would be too much of a distraction during the church service. After 3 years of this, we finally met with the preschool minister to talk about finding John his own Sunday School class. We were aware that Tallowood had a department for kids with special needs, but the minimum age to be in that class was 6 years old. We finally found a class that we thought John would do well in. It was a class of 18-24 month old kids and the teachers of that class was a married couple who had experience with special needs. Once John started that class, we were finally able to go back to "Big Church". He got to spend 2 hours in there each Sunday and he seemed to really enjoy it. When promotion time came around the next year, it was decided that it would be best for him to stay in that class another year. So he did. We loved the Olivier's and the rest of the people who worked with him in there. But by the time he was 5, we all decided he was just too big to be with that same age group of kids. With nowhere else for him to go, the children's minister decided to let him into the Tallowood Treasures class a little early. We were so thankful that our church worked with us at finding a suitable place for John to spend his Sunday mornings, so that we could worship together. John has been part of the Tallowood Treasures for 2 years now. Two of the main teachers are certified life skills teachers. They know how to use different methods to teach our kids about God's love. There are also several volunteers who help the teachers and who love our kids deeply. We've always felt comfortable with John being there without us. Over the years, his medical issues became a little less urgent and since we were in the same building he was in, we knew that if there was a problem, we could be there in a hurry. But this year the church has started to kind of revamp the department just a little. All the teachers and volunteers are the same, but they decided to make one of the teachers the director of the department. And she has been working really hard, meeting with parents and researching other churches with special needs programs to find the best way to meet all of our needs and make it an even better place for our kids to spend their Sunday mornings. For the past two years, John has been able to attend Vacation Bible School as part of the Treasures class. This year, the church decided to go through a nursing agency and have a registered nurse spend the week with them in Vacation Bible School. It apparently went so well, that they decided to hire her on a regular basis. So now, each Sunday when our son goes to his class, not only does he have wonderful teachers and volunteers to help meet his spiritual needs, but he also has a registered nurse present to help meet his medical and physical needs. I am so excited that they have decided to do this. Maybe this will get more parents back to church who have been afraid to leave their child without the care of a medical professional. If you or someone you know has a special needs child and are looking for a wonderful church home in the Houston area, look us up. For more information, you can go to the church's website at www.tallowood.org or you can contact me. We would love to see you on Sundays.

Summer Fun

Last weekend, Tommy and I celebrated our 11th anniversary. If you recall, last year we went away for the weekend for the first time since John was born. It was a really big ordeal for us to leave overnight without him, but we had so much fun. So we decided to do it again this year. On Friday, we left around 1:00 and set out for San Antonio.

 We spent the next two nights at the JW Marriott Hill Country resort. We had lots of good food to eat and of course plenty of time to enjoy the pool and lazy river. Friday night, after a couple of hours in the pool, we enjoyed a casual dinner at the sports bar at the resort and because we were both so tired, went to bed early. After sleeping late on Saturday (oh how I miss doing that) we had a late breakfast and then spent a good bit of the afternoon floating the lazy river and hanging out in the adults only pool. We also did a few trips down the water slide, where Tommy thought it would be fun to flip my tube over, sending me underwater. Fun for him, not so much for me. We had planned on a later dinner, so after taking a late afternoon nap, we went to the golf clubhouse, where they have a very nice steakhouse. Again, we were both pretty tired, so we called it an early night. When I asked Tommy what his favorite part of the weekend was, he said sleeping late. I have to say that I agree. It really was nice to be away together with no responsibility and no need to need to keep an eye on the clock. I think we may try to make this an anniversary tradition.

11 Years of marriage

Of course today is July 4th. Such a fun holiday for families. One of my favorite July 4th holidays was the year we went to see my brother in Arkansas and the family rented a boat and spent the day out on the lake. It was such a fun and relaxing day and I wish we were able to spend more holidays like that. That's just one more reason I hope JT gets his trach out very soon. We aren't able to do any kind of swimming with him because of the trach, and without the pool to keep us cool, it's too hot to spend any amount of time outside. So today we went to lunch at the brand new Rudy's Barbecue here in Katy. Today was their first day open, and while I'm generally a little hesitant about trying a brand new place until they get the kinks worked out, I thought it was pretty good. And we got there at a good time, because by the time we left, the line was out the door. It was a very popular idea today. Now I'm sitting in my recliner, while JT naps and Tommy snores on the sofa. It is thundering outside, so maybe we'll get a little rain.

Because of the holiday, this week was a dead week for John's therapies. But next week, we'll be back at it. His horse therapy is really going well. He is loving the time he spends riding, and I have noticed it making a difference. During his first session, he didn't last the entire 45 minutes, and he spent a good majority of the time lying down on the horse. But last week, he rode the full time and spent most of the time sitting up. They are really working to get him sitting up straight. I've seen him doing that more at home too. He has 3 more sessions for the summer and then they take a break until September. Pray that a spot will open up for him and he'll be able to continue riding in the fall. I feel like more time spent on the horse for him could really make a difference. If he could strengthen his core and learn some trunk control, it could really go a long ways toward him being able to walk.

Other than therapy, our weeks have been pretty easy going. I almost have to really think to come up with ideas for us to get out of the house. Again, the heat is too bad to do much outside, and indoor activities are kind of limited. So I take him with me to the store when I can and yesterday, we just went for a walk around the mall. It was good exercise for me and he got a frozen yogurt treat at the end. We've also gone to see a couple of movies. We enjoy going to Studio Movie Grill because each week they show a different older kids movie and it's just $1 for kids and $2 for adults to get in. That's probably the best indoor activity I can come up with. In a couple of weeks, our niece, Jennifer, will be coming to stay with us so that will liven up the place a little. While he'll still have therapy and a few doctor's appointments, we'll still find some fun things to do while she's here. And he'll have a good time with her, even if we stay at home.

Have a Happy July 4th! Enjoy the time with your families!

Blessings

In light of the week I've had, I thought I'd share the following song with you. This has kind of become our family's theme song. It has such a good message, especially in times of trials and sorrow. The song is by Laura Story and it's called Blessings. Our favorite line is "What if a thousand sleepless nights are what it takes to know you're near." We have had those thousand sleepless nights (I've had two this week) and sometimes that is when I feel closest to God. I hope you enjoy the song.

Sleep Study Results

I'm sorry it's taken me so long to get you this update. I've had several people ask if we have gotten the results from the sleep study and I can finally say, "yes we have." We actually heard from the pulmonologist's nurse on Friday morning, but the results we had left us with more questions. So I was waiting to see the ENT today to get further clarification before updating you. On Friday we were told that he slept really well the first half of the night, when his trach was open. But during the second half of the night, when his trach was closed, he didn't sleep as well and he had some obstructive apnea. So it was determined that he is completely fine to sleep without the vent and without oxygen as long as his trach is opened. My question was how much obstruction did he have and how much was caused by the trach being in his airway. Also, if the trach were removed, would that take care of the obstruction. The nurse was supposed to talk to the doctor on Friday and call me back that afternoon, but I never heard back from her. So today, we saw the ENT. We like this doctor better anyway. She is just as anxious to get rid of the trach as we are, so I knew that we could at least come up with a plan. So she looked at the results and gave me the specifics from the sleep study. With his trach opened, he had approximately 5 central apnea events per hour (which is about what he had before) and he had 3 obstructive events per hour. With the trach closed however, he had 3 central apnea events per hour (less because he didn't sleep as much with his trach closed) and 13 obstructive events. His lowest oxygen saturation while opened and closed was 88%. That's actually not too bad. But it is of some concern that he had so much obstruction with the trach closed. So we came up with a plan. We are going to start capping John's trach for all waking hours. Then on July 20, the ENT will do a broncoscopy on John to check his airway for any kind of obstruction. Once that is done, Tommy and I will meet with her to discuss how we want to proceed from there. We will discuss the risks of decanulating John and whether or not it is worth doing. So, we didn't exactly hear what we were hoping to hear, that he is absolutely ready to have the trach removed, but it's not completely ruled out either. It just may not be this summer like we hoped.

Appeal....denied

Tonight, Tommy and I went before the Katy ISD school board to plead our case as to why we feel John should be allowed to remain a student at Kilpatrick Elementary. This really has been a long process. In case I haven't told you already, let me go back to the beginning. In mid April, John and I were on our way home from his hippo therapy evaluation when my cell phone rang. I was elated that the evaluation had gone well and that he was going to be able to ride this summer. I was feeling like things were finally falling into place for John and that he was finally getting just what he needs to become the person he is capable of being. I recognized the number on the caller ID as being a Katy ISD number, but I knew it wasn't from his school. The lady on the other end told me her name and that she worked with the Katy ISD special education department. She told me that because of the recent growth in Katy, and because of the 3 new elementary schools being opened, the district had decided to move John along with a small group of other life skills students at Kilpatrick, to the life skills program at Elementary #33, Schafer Elementary. I have known for a while this was a possibility because our neighborhood was being rezoned. But when I got that call, my heart sank. I asked the lady if there was anything I could do to change that decision and she informed me that I could file for an intradistrict transfer from Schafer to Kilpatrick. So that is what I did. The process of this is to fill out on online application. Once that was submitted, I then had to pay a $35 fee for the application to even be considered. Then I was told I would hear within 10 business days whether my application was accepted or denied. Talking with many people, I discovered that the office that handles these requests automatically denies all requests that are not from a district employee wanting to move a child to a school closer to where they work. So as expected, I received an email denying my request. I immediately requested to appeal the decision, and was given a date to meet with a district committee to explain to them why I think John should be allowed to remain at Kilpatrick. On May 10, I met with this 4 person committee. I had taken time to write down some talking points so that I could made sure all of my concerns were expressed. I even had a letter signed by John's pediatrician stating that John needed to be in an environment that had a registered nurse on staff to ensure that his medical needs were being met. I wasn't sure at the time, but later I found out that the new school was hiring a Licensed Vocation Nurse for their campus. While, I have nothing against LVN's and there are many out there that are wonderful nurses, I felt that the nurse who is at Kilpatrick is trained in trach care and has years of clinical experience in dealing with kids like John. She had to reinsert his trach tube 3 times this school year after it came dislodged at school. So I knew that he was in more than capable hands with her. I was not and still am not sure what kind of training the nurse at Schafer will have in dealing with kids like John. I felt like the meeting had gone well and was hopeful for a good outcome. A few days later I received an email with the committee's decision. My appeal had been denied. The reason cited was that they felt his needs would be met at Schafer Elementary. To me, that is not a good reason, and considering the fact they have never met my son, how do they really know what his needs are. I knew that we had one more option, appeal to the the school board. Tommy and I discussed whether this was the course we really wanted to take. After a little time deliberating, we decided that it was worth the effort if it would give us the opportunity to have John remain at Kilpatrick. I submitted the appeal to the Superintendent's office and received an email giving us a date and time to go before the board. Last night, we stayed up until midnight, listing out the things we wanted to say and Tommy typed them up in a dialogue format so that he could read them to the board. And today, at 5:30, we got the opportunity to express these concerns to the board. We decided to take John with us so the members of the board could see his face, and hopefully it would help them to think of him as a person and not just a number in the system. We also had Caitlin go with us so she could sit with him while we spoke. We were given 10 minutes to make our presentation then the representative from the administration was given 10 minutes to make his presentation. Members of the board then took turns asking questions of both sides to help them make a decision. We were told they would deliberate privately and then they would either vote on their decision during the open session that followed, or during next week's meeting. So Caitlin and I took John home so he could have dinner and Tommy stayed for the open session to see if they had a decision. He finally called me a few minutes after 7 and said that the board voted 5-2 to deny our appeal. So we had support from two of the board members, just not enough to have John remain at Kilpatrick. I have to be honest, although this decision was not a complete surprise, I was totally devastated by it. I was so in love with John's teacher this year, as well as the nurse at his school, and it completely breaks my heart to know that he will not be able to work with those people again. He learned so many things this year and I have seen a dramatic improvement in his listening skills, his communication skills and even his ability to follow simple commands. On top of that, he is actually learning things like his shapes and colors and even the letters in his name. His teacher found a way to get into his head and to understand him as well as to make him understand her, and I can't believe that he won't have her to learn from any more. Whoever the new teacher may be, no matter how good of a teacher she may be, it will take her some time to figure those things out, and it's not a guarantee that John will even be able to trust her enough to work for her. So instead of building on the things he learned this year and seeing where it can take him, he will be starting all over with a new team of people having to earn his trust. I fear that it will be a lost year and a huge setback for John's overall potential. It is truly shameful to me that the school district would put the business side of the district ahead of meeting student's needs. On top of that news, I also learned tonight that our nurse is not feeling well and would not be able to come in. The agency was unable to find a replacement for her tonight. So after little sleep last night, a full morning of Vacation Bible School, a dentist appointment this afternoon and then the board meeting, I will be getting little sleep again tonight. Tomorrow morning is another day of VBS and then John has an appointment with his ENT in the afternoon. And did I mention that Tommy is leaving tomorrow morning to go to Canada for the rest of the week? He was supposed to leave on Sunday, but stayed the extra day so he could attend the meeting with me. I will need lots of coffee just to get through the day tomorrow, and my emotional state will be very fragile for the rest of the week. My sweet husband did allow me to go to bed early and sleep for 3 hours or so while he was packing and getting ready for his trip. I will lay down on the couch and try to get a little more sleep tonight. Now is when I have to rely on God's strength more than ever. I need it every single day, but there are some days when I am reminded just how much I need it. I have been praying all along for his will to be done, so I choose to believe that he has bigger and better things planned for John. I cannot imagine in my wildest dreams that any school could be better than where he has been, but that is what God does. He goes beyond our wildest imaginations and provides us with more than we can dream of. I am so thankful for a God who loves me like that. Father, please give me strength and courage to face this change. God, you created John and you know his needs even better than I do. Give me peace of mind that you will provide all that John needs and that he will be okay. Use this situation to teach me to rely on you. Thank you for your reminder in Deutoronomy that says you will go before me, not to be afraid. You will never leave me or forsake me. Thank you for friends and family that pray for us every day. And thank you so much for the gift you gave us when you made us John's parents. We are so thankful to have a child that we can worry about and cry for when it seems that life is not fair. Mostly, God, thank you for showing your love for us each and every day. I know that I will be okay with a little time because I know you are still here, carrying me through and providing for me every step of the way.