Thursday, September 30, 2010
I have to say how very proud I am of the Knight (and Ladd) family. They have been so strong and full of peace. They have exuded love for Samuel and all around them. They have shared their faith and inspired us all.
The services have been beautiful. It has been so hard to say goodbye to "my baby", but so heartwarming to see how many people loved him. The final service is today. It is here at the hospital for staff. Missy's family will be here. Alex and I will attend and have been asked to speak. Alex has a few cute stories to tell. I am going to try and speak, but am not sure I can. If I can get it out, I plan on thanking the Knights for being our second family and for giving Alex the little brother he has always asked for. I watched Alex and Samuel grow so much in the last 2 years. I can't count the number of times they held each other hands for procedures. So many times when Samuel didn't want to do something we would say, "but Alex does it". I loved watching Samuel follow Alex and do whatever Alex was doing. I will forever be grateful that the boys had each other.
Please pray for Alex and I to have the strength to say what we need to today. PLease pray for the Knights as the week of services comes to an end and they try to find there new normal.
Monday, September 27, 2010
Alex continues to improve. His fever has been gone since Saturday. His headache is long gone. He has been up today playing and walking. He is off oxygen. We have started feeds at a very slow rate. We still have a few things to accomplish before we come home. We need to try a new seizure medication. We always have to be careful when trying a new medicine because of his history of anaphylaxis. It also looks like Alex may need to have a transfusion in the next couple of days.
Please keep the Knight family in your prayers as several days of services start tomorrow.
Saturday, September 25, 2010
Friday, September 24, 2010
I also ask for prayers for Alex today as we talk to him and that his little heart understands and that he is not scared.
Thursday, September 23, 2010
Right now Alex's temperature is back to 104.6. We have the room temp at 55 degrees. Alex is once again wrapped in wet cloths and has a fan blowing on him. He is still on oxygen. We also have him on TPN and IV meds trying to lessen the stress on his body.
I also ask that you keep Alex's "little brother" Samuel in your prayers. Samuel got really sick last night. He has a nasty line infection and is in the ICU.
I will update if anything changes.
Wednesday, September 22, 2010
Alex's temperature stayed at 105.5 for most of the morning. Concern grew as we couldn't get it down and it was decided we needed to be aggressive so the temperature in our room was lowered to 55 degrees, his cooling vest was soaked in ice water and put on, we placed cool cloths on his head, neck and feet and ice packs under his arms and in his groin. Then we set a fan up to blow on him. With all of these measures we were able to get the fever down to 103.7.
In the meantime, Dr. Koenig came in with the news that they had found the source of infection. His brain MRI's showed some pretty nasty sinusitis. And so a plan was formed. We consulted ENT, immunology and hematology. At this point it is thought that it is likely they will have to go in surgically and clean out his sinuses. The ENT has ordered a CT scan to be done tonight or tomorrow morning and then a definite decision will be made.
Alex had another possible seizure this afternoon despite an extra loading dose of seizure meds. We are giving high doses of meds and watching closely. We have also left him on oxygen. I think that is all. I will keep you posted.
Thank you for all the thoughts and prayers.
Tuesday, September 21, 2010
Monday, September 20, 2010
Other then the fever, Alex's main symptom is a horrible headache. He has been in tears 6 times today crying about his head. Because of the headache there is some concern that he could have meningitis. He is being squeezed onto the schedule tomorrow for a brain MRI (we will also do the spine MRI that needs to be done). There is also some discussion about whether he needs a lumbar puncture. We have stopped feeds and started IV fluids to prepare for these tests tomorrow. We are waiting on cultures from his central line. We have not gotten his temperature below 103 even with tylenol.
I am going to try and get some sleep. I will update as I know more tomorrow.
If someone had asked me before Alex was born what mitochondria were? I probably would have looked at them like they were crazy. I have long ago forgot much of my early biology. (Although I better start learning so I can teach Alex!)And yet these tiny parts of our cells have impacted our lives in ways I never could have imagined.
The mitochondria are equivalent to a battery. They make the power for things to work. When the TV remote's battery dies, the remote can't do a thing until the battery is replaced. You may be able to coax a few more uses out of that battery. You take the cover off and spin the batteries. You shake and hit the remote. You stand in just the right spot and you may get the volume adjusted a bit. But, ultimately, you know the battery is done for. The same works for our mitochondria. When they are sick, they lose the ability to power our body. We can do little things to improve their function... take vitamins, avoid stressors, preserve the energy used, but ultimately, the mitochondria are failing. But, unlike the TV remote, there is no way to replace the power source. No fix. No treatment. No cure. (Thanks Missy for this analogy)
Mitochondria keep Alex from doing so much that every child should enjoy. He can't eat, he doesn't go to school, he spends 2/3 of his time sleeping, he tires out making it impossible to play sports or even go for a walk, he spends a 1/4 of each year in the hospital. Our biggest hope is that a cure will be discovered in Alex's lifetime. The way to find a cure is by spreading awareness and funding research.
This week as you get out of bed and go about your everyday activities, activities that most of us take for granted, please think about Alex and all his little buddies and spread the word about this devestating disease!
Wednesday, September 15, 2010
As a little girl, my most fervent dream was always to be a mother. I was the girl who started babysitting at 10. The one who would gravitate towards the babies at events. The day Alex was born not only was the happiest day of my life it also was MY dream come true. Of course, God's plans for my life and the way my dream would play out are a little different then I envisioned! Our house is not like most houses. Our closets are filled with medical supplies. Alex has a refrigerator in his closet full of medications and IV fluids. I could practically run an ER in his room. Our days are full of giving meds and taking vital signs. And yet I strive every day to make life "normal" for Alex. We have a ton of limitations, but I am always looking for ways to push the boundaries. For activities for Buggy and friends and the childhood he deserves. Some days I feel like we do a good job and other days I feel like I have utterly failed. And so as I begged the doctors last spring to let Bug go to school this year which was met with a resounding no, 15 seconds into the conversation by 2 separate doctors, I pondered what we could do. Although Bruce and I are both sports lovers, sports were out. And so I asked about cub scouts and was told we could give it a try with restrictions. And so all summer I told Buggy how awesome cub scouts was going to be. How much fun we were going to have. How cool it was. It didn't hurt that one of his best buddies Walker was going to join him on this journey. And so last week our adventure began....
Kelly and I ventured to the cub scout store last Friday to buy the boys their uniforms. All I can say is thank goodness there are people there who know what they are doing because we were clueless! We quickly realized the pants were a no-go as the smallest size is a size 6 (about 3 sizes too big for Bug). But we gathered everything else. Saturday We got Buggy in his uniform for the first time. And oh my goodness (I know he is mine BUT) he is the cutest thing ever in a uniform!
We headed out to sell popcorn for the first time. As those of you who know him can atest too, he is a natural salesman. He had the other parents hysterical as he convinced person after person to donate or buy popcorn. I mean who could say no to the little pipsqueak with the sweet face. He came home exhausted, but so happy to have made new friends. Friends who were now his best friends forever.
Yesterday, was our first pack meeting. So once again we donned our uniform. He was so excited to see his friends again. His den all sat together. It warmed my heart to watch him make the cub scout sign, stand for the pledge of alliegance, and follow his friends outside to play while the parents met. I love this glimpse into what life is supposed to be. I love to see him enjoying being a kid. I love to watch the joy and excitement as he runs to catch up with friends. I soak in every minute. At times it is bittersweet because I realize how much he misses out on and yet he is so happy and appreciative of every opportunity he is afforded. And so we came home last night with new found friends and a community to belong to. We look forward to our weekly meetings and our upcoming camping trip. (I am still figuring out how I am going to swing 2 days of medical supplies/procedures while camping) And as a Mom I am so very proud of my little man who adapts to every situation and finds so much happiness in his crazy life!
Let's see what else....
School is going awesome! Alex likes his new math curriculum a hundred times better then last years. We have also changed where we are doing school. We used to sit in Alex's room, but he was having a hard time focusing. We have moved to the dining room table and he is doing much better. He enjoys history and already has favorite books. Creating our hideaways (forts) has been a hit. Overall, it has just gone really well.
Medically things are also pretty good. We are waiting on a date to head back to Houston to repeat the MRI and SSEP to determine whether we need to "fix" the syrinx now or just continue to watch it. We have also started the MCT oil to help him gain weight. He is at 1/5 of his dose and has had some minor issues, but we are continuing unless it becomes worse.
Last, Alex is starting to sell popcorn for cub scouts. This is hysterical to me. Alex's first anaphylactic reaction was to corn. Seriously...of all things popcorn sales! Anyway, I am going to attempt to post the link to his page here, but am not sure the shortcut will work. Do not feel obligated, but if you would like to support Alex on his cub scout journey you can click here:
http://www.trails-end.com/estore/home_alt.jsp?_requestid=327417 If you need his scout id #, it is 7676878.
Thanks for allowing me a place to share my feelings and more importantly my Bug!
PS- Guess who is the proud leader of Den 2....Me!
Saturday, September 11, 2010
I need to update you on his two appointments we had on Wednesday. We started with cardiology. It was a LONG appt. We were there from 9:00 until 1:15. After all was said and done, the cardiologist felt that his heart is doing well. She wanted to look at the images from the echo again and see his lab results, but she didn't expect to find anything. So that was awesome news! next we saw hematology. Dr. Brown is a doctor that I like more and more each time I see her. She increased Alex's Vitamin B12 a ton. We also discussed when we will use the Vitamin K shots that help with his clotting. The last thing we talked about is surgeries and what needs to be done before each surgery. She would like Alex to receive a plasma transfusion before any surgery that "could" cause bleeding. So all in all we had a productive appt. We were at the hospital from 8:30-5:00 so it was a long day.
After leaving the hospital, Missy and I left the kids with Ben and headed off to a meeting about an upcoming fundraiser for mitochondrial disease. Some of you may remember that 2 years ago I walked in the Christopher's Heart Fun Run. That event has teamed up with the UMDF and this year (February) it will be the Energy for Life Walkathon. I am excited to walk with Alex and to raise money for research to find treatments and hopefully a cure for mito.
I promise a "fun" update soon with some pictures.
Thank you for continuing to lift our family in prayer.
Tuesday, September 7, 2010
Many of you may remember that I walked in a fundraiser to benefit the UMDF a few years ago. I am planning to do that again this year so I will attend an informational meeting tomorrow before I head home.
Please say a prayer for PopPop (Mom's Husband). Mom had to take him to the ER tonight with a high fever and not feeling well. We love you Mimi and PopPop.
That is all I got! I'll update either tomorrow or Thursday from home.
Sunday, September 5, 2010
Alex is doing very well. He is having some pain around the tube, but it is tolerable. Our feeds are up to 20 cc/hr. he is tolerating them like a champ and I don't see any reason why we won't be on full feeds by Tuesday. Yesterday was just a quiet day. Alex was happy to wean off his O2 in the morning and then spend the day "visiting" with all the nurses.
Alex's Vitamin B12 level came back okay. This is both good and bad. It is great that he is absorbing it better now. However, we were hoping low B12 levels were to blame for some of his other symptoms. Because it is normal, it is more likely that his syrinx is causing these issues. I will talk to Dr. Koenig this week and see when we will repeat the MRI of his spine.
We are still in Houston a few more days. Wednesday we finally see Cardiology and then we also see Hematology. We should be on the way home Thursday! Alex and I are ready to get home and back into our schedule and doing school.
Friday, September 3, 2010
I was once again awoken at 6:30 this morning by the surgery team. I reiterated my concerns with the plan as it was not what I had discussed with Dr. Tsao. They agreed to call and double check. Less then 30 minutes later we were headed to pre-op. Alex cried the whole way down. He finally settled down when our favorite anesthesiologist came in and said she would be in the OR. We waited about 45 minutes and then someone came in and told us that we were going back upstairs. They had cancelled the surgery because Dr. tsao wanted to try TPAing the port. I was obviously frustrated.
We got up to the floor and immediately I asked how we were going to address his Jtube problems if we weren't going to the OR. We were told by the surgery resident that they were going to sedate him bedside and do it. That was the final straw for me. Alex is damn near impossible to sedate. The anesthesiologists frequently comment that "it takes enough to kill 3 grown men" to sedate him. That can not safely be done without the ability to intubate. On top of that I didn't want Buggy to be only half asleep and be in pain while they cut off tissue. The final thing is that Alex is VERY afraid of "going to sleep" (anesthesia). Right now he loves our normal unit of the hospital. I did not want to do anything to make him afraid of being here with as many days as we are here.
Since the nurses and I weren't getting anywhere, I decided to email Dr. K. She came to the rescue and got in touch with Dr. Tsao. She let me know not to let them do anything. That Dr. Tsao would be up to see us when he was out of surgery. In the meantine we TPAed the port and were able to get blood! Woohoo!
I waited and waited and Dr. Tsao finally made it up here around 1:00. He made the decision that it was best to head to the OR to remove the scar tissue and replace the Jtube. Less then 10 min later they were here to take us back to pre-op. So off we went with Alex crying again. Luckily, our child life specialist came down with us and helped me distract Alex. We had an anesthesiologist we know and his fave came by to check on us again and make sure they knew the ins and outs of taking care of buggy. Alex's was taken back around 3. Dr. Tsao was pretty quick, however, he came out of the OR telling me that the port had given them some issues. I am somewhat concerned at this point that we made the wrong choice by not replacing the port. So far it is working okay since we have been in the room. I am hoping that it will continue to work ok without any further problems.
Alex was as sweet as possible coming out of anesthesia. The first thing he did in recovery was pull me close and tell me that he loves me. He is doing really well. He is saying his belly doesn't hurt at all. He is also tolerating the oxygen (that he is always on after surgery) better then he ever has. He is tired and getting ready to crash for the night.
I continue to struggle with the care Alex is getting on the surgery team. They are not use to having to deal with the complexity of his issues. They don't know us and the way we do things. I feel like I am having to fight to get him cared for correctly. I am tired of putting out fires because they don't know us well. I am hoping they will listen to me and the nurses and that tomorrow things will improve.
Thank you for all the prayers today.
Thursday, September 2, 2010
Please keep Bug in your prayers tomorrow and I will update when I get a chance.