Friday, December 31, 2010
Today was a day that started not very good and ended so well. Alex had a nother rough morning. He was so weak he didn't want to sit up or play. He just laid in bed and wached tv and was very quiet. We scrambled once again to come up with a plan as his temp continued to saty in the high 101's. We ran flu tests, rsv, looked at his ears, nose and throat all despite the fact that he has no symptoms of a virus. We were just hoping we would find some easy reason for a fever. Unfortunately it wasn't to be. The plan as of now is that if Buggy still has a fever tomorrow the femoral line must come out. We started a third antibiotic today (one he was on in the PICU but was stopped early in the week). If he still is febrile tomorrow we will add yet another med after pulling the line. We would either place a femoral line on the other side or a PICC line in his arm. We also did another CT scan today to look at his pancreas and the clot again. I have not received results yet.
The day turned around this afternoon when our good friends the Morgans got to the hospital. Kelly called me yesterday and told me that they didn't want me and Buggy to spend New Years alone so they would like to coem spend the day with us. It was such a nice treat to have a peice of home with us. Alex was SO happy to see Walker. The boys played games, watched movies, fought and laughed. We rang in the New Year around 9 and by the time I got back from walking the out Alex was sound asleep. We will get to spend some more time with them tomorrow before they head back to Fort Worth. I am so thankful for such incredible friends that came so far to put smiles on faces. We love you guys.
Our prayers are for a New Year filled with love laughter and health.
Thursday, December 30, 2010
This is what we know...Alex has pancreatitis. Alex has a blood clot at the end of his fem line which is sitting in his IVC. Alex has a fever.
This is where it gets confusing. Alex's pancreatitis has been the same for a week. There would be no reason for him to all of a sudden develop a fever. The doctors do not like to leave a femoral line in for this long bc they can be prone to infection. Also, a clot can be a source of infection. BUT, all of the cultures we have taken are negative and his labs do not look like he has an infection. The question is whether he has an infection that is not showing bc he is on two big gun antibiotics. SO, one group of doctors think we should pull the fem line. But we need access so we would have to do another line somewhere else that would be temporary. This would use up a central access spot that could be necessary down the road for a short time. THere is one spot they could do a peripheral IV, but then they would really struggle to get all of his medications in and they wouldn't be able to get nutrition into him which is never good with Alex bc he is already so skinny. The other group of doctors thinks we should try to leave the line and just watch until he gets worse or we find a definite cause of this fever. The problem with this is that if it is the line or the clot, he could become septic again and we could wind up in the same position we were in last week. Also complicating matters is that if we pull the line we could dislodge the clot and it could travel to his lungs and cause issues. We have done a chest xray. We will do more testing if his fever continues to climb. We are also waiting on our surgeon to come by and weigh in. Unfortunately, each day with a fever is another day before we can do surgery to replace our port and means another day we are stuck here. So the wheels have been spinning here all morning as we weigh the pros and cons. There is no right answer.
I am doing okay. I was lucky to have lunch with Momo (Missy's mom) today. She brought me food from my favorite restaurant and kept me company for a while. Tomorrow, the Morgan family is coming to celebrate New Year's with us. I am so thankful for friends. I was sad we didn't get to have the vacation we had planned with Grandpa. I was sad to say goodbye to my Mom. I am sad that Bruce is not here to help with Alex. But I am surrounded by people that love me and Alex and take the best possible care of him. I am bolstered by the love and prayers of all of our friends and family. I am thankful for the generosity of others that truly showed us the magic of the season and eased the burden of our house so I could concentrate on taking care of my precious baby. There are so many people I need to thank. Please know that I am thankful just too tired and busy to write you proper thank yous right now. The messages, notes, emails, cards and prayers have kept me going over the last 10 days.
Tuesday, December 28, 2010
We had to say goodbye to Mimi today. Alex and I were both so sad to see her go. The three of us are of one heart and one soul. We are happiest when we are together. I will forever be thankful to have such a strong, caring, kind, loving mother who taught me how to be a good mother and a strong woman. Without hesitation last week she jumped on a plane to be here for me and Bug. She spent a week with little sleep and a broken heart as she watched her Bug struggle back from the brink of death and supported me in every way possible. Thank you doesn't even begin to express what it means. We will be counting the days until we are together again.
The new Lovenox injections stink! There is no two ways about it. The medicine burns and Alex is in tears as soon as he knows it is getting close to time. I cannot imagine doing this for the next 3 months!
To top the day off, Bug is asleep with a temp of 100.5. Which means we have to call the doctors and most likely start all kinds of tests to be sure he doesn't have another infection brewing.
This poor little angel has been through enough, I am praying that he starts to feel better and gets a reprieve soon.
Monday, December 27, 2010
We had a visit from our beloved surgeon. He always checks on us when we are hospitalized and he wanted to touch base regarding the plan for replacing his port. As of now the plan is to go to the OR on Monday to get a new port. However, Dr. Tsao wants to see how he is doing later in the week. He is concerned to take him to the OR with pancreatitis and with him as weak as he is. He is ordering an ultrasound of his chest to look at the vasculature so he has an idea of where he has some options for the port. We also discussed the need for a unit of plasma before the surgery.
We also had a visit from the neuro-sciences scheduler talking to us about getting some testing done this week that was previously scheduled for late next week outpatient. The hope is that if we can get this testing done while inpatient we will be able to get home sooner.
Last we went for the CT scan. It was uneventful and we expected it to come back normal. But I should know by now that nothing comes back normal! While they did not see anything explaining his latest bout of pancreatitis, they did see a blood clot on the end of his femoral line. We are extremely lucky we did this test because a clot can be very dangerous if undetected. This started a whole slew of converstions between 4 doctors and the pharmacist. We will be starting lovenox injections tonight. Lovenox is a blood thinner. The problem is that Alex tyically does not clot well. The fear is that in trying to break up this clot we will cause him to have clotting issues elsewhere. After talking to our hematologist, immunologist and pediatrician it was decided we will give the first injection tonight and then check labs a few hours later. The outcome of those labs will determine if he will receive subsequent doses. Assuming he does ok with the medication he will receive injections twice a day for anywhere between a week and several months.
I was supposed to be taking Mom to the airport in the morning, but after all of this it was decided that I needed to be here to monitor and speak to the doctors. Luckily, our second family has once again come to the rescue and Momo has graciously agreed to take Mimi to the airport. Our families have meshed to the point where there are no lines. I am so grateful to have them to lean on. Alex and I will miss Mimi more then we can say. We will never be able to thank her enough for walking through the trials and tribulations of the last week with us.
Please pray that the night and tomorrow are uneventful.
Sunday, December 26, 2010
Alex's pancreatic enzymes continue to be extremely high. They did an abdominal ultrasound yesterday and we got the results today. His spleen and liver are enlarged. Unfortunately they were not able to view his pancreas because his intestines continue to be full of air. The distention in his bowels obscured the view of the pancreas. The plan today was to run a CT scan to get a look at the pancreas and liver again, however there was a miscommunication about the orders. They have tried to get them worked out, but it looks like the scan will happen tomorrow. He is also running a little dry so they have added some additional fluids.
We were sad to see Grandpa and Daddy leave, but were glad they were able to spend Christmas with us. I cannot believe that this nightmare started a week ago today. By this time last week they were already intubating Alex. In some ways it has gone fast and in other ways it seems so long ago. I am so happy Alex has come through the sepsis as well as he has, but it is sad to see the toll it has taken on his body. He has not sat up for more then a few minutes at a time in over a week. He has not been out of bed. He is just sleeping and watching movies. But it is so nice to see a smile and hear a giggle. We will just pray that his strength improves each day.
We are hoping for a quiet night and to get back into a normal routine tomorrow. Thank you for your continued prayers.
Saturday, December 25, 2010
Buggy has done okay. He is still in quite a bit of pain and pretty nauseous from the pancreatitis. He is also very weak. He can sit up for a few minutes at a time, but still spends 90% of the time lying down watching movies or resting.
Santa was very good to Buggy. He had a lot from Santa and the family lus people from the hospital kept bringing stuff in. He had quite a load by the end of the day. We had the room decorated and a Christmas tree. And made things as festive as possible.
The plan from here....We were supposed to be going to surgery on Monday to place a new port, but surgery would like to wait until his 2 week course of antibiotics is done. The doctors are all hashing it out. So I am not sure. We also did an abdominal ultrasound today to make sure nothing was going on internally. Alex's pancreatitis numbers continue to rise despite not getting anything in his gut and draining both his G and J tube. They want to be sure this is just Alex's "regular" pancreatitis and not a cyst, infection, obstruction, etc. So for now we sit and wait. Alex does not feel well enough to come home yet anyway so I am in no rush to push him out the door.
Bruce and Dad will leave tomorrow. Mom will stay until Tuesday. I am so glad to have my family here through this. I will update as I know more.
Thursday, December 23, 2010
Alex does indeed have pancreatitis to complicate matters further. He has been in quite a bit of pain and nauseous, but when he has meds he is happy and playing. He is still pretty weak and cannot yet sit up on his own, but we are able to prop him up some. Labs continue to improve.
As for the flu...I have gotten some clarification. It is not the typical flu. He has haemophilus parainfluenza. It is a bacterial infection that should also respond to the antibiotics. The PICU fellow last night told us we weren't supposed to have a checklist of diagnoses. Alex never does anything halfway!
We are currently still in the PICU, but are in the process of being transferred to our regular "step down" unit. We are just waiting on a bed to open up.
I am so thankful my Mom has been here to suppport me since early Monday morning. As soon as she knew how sick Buggy was she jumped on a plane. I don't know how I would have made it through this week withot her. Buggy and I love her more then anything and couldn't imagine her not being here.
I am also so thankful for Missy for dropping everything and rushing to the hospital Sunday night as soon as she knew how sick Buggy was. We have walked the hardest of roads together over the last two years and her friendship and love was perfect. She sat with me all night Sunday and besides picking up Mom all day Monday. I will always treasure our frienship.
There are countless others who have called, prayed, brought food, sent gifts. Thank you!
Others have asked if there is anything you can do. Over the last three years Alex has counted on blood products numerous times. While they have always been important before, they literally saved Alex's life this week. If you are able please donate blood for Alex and all the other kids who rely on the blood banks.
I am going to recount the early part of what happened since I have had some questions... Saturday night around 3 AM Alex spiked a fever of 103.9. I gave him a dose of tylenol and put cool cloths on him. Within an hour and a half his temp was down to 100. Typically, Alex doesn't bring his temp down no matter what interventions we use so I thought perhaps we had just overdone it. When we woke up Sunday morning Alex's temp was 98 and he was playing and acting ok. Around 11, he started crying and shaking uncontrollably and quickly respiked a fever. We rushed to Cook Children's (around 12:30)and were immediately taken back to a room. We saw the attending quickly who called Dr. Koenig and transfer orders were started within minutes. We were on our way to the airport by 4 and at Children's Memorial Hermann by 6. We were taken to a room in our regular unit, but on arrival his lips were blue, he was shaking, his eyes were sunken, he was disoriented and overall not looking good. The first resident to see him knows us well and has seen Alex pretty sick many times. She didn't like the way he looked and consulted the PICU and Dr. Pacheco. Together the decision was made that he needed to be in the Intensive Care Unit. Things deteriorated quickly and by the time we got back to the PICU it was clear he was in trouble. Thus the decision to intubate and let his body rest. Because of the line infection, Alex was in septic shock. He was in DIC (Disseminated Intravascular Coagulation)which is a serious disorder in which the proteins that control clotting do not work correctly. You can bleed out from this condition. He also was in the early stages of kidney and liver failure. Because of the quick action of the two hospitals coordinating the transfer and the exceptional care we received here, we were able to stabilize Alex and protect his organs. It was a rough couple of days, but Alex has proven to all of us what a fighter and true miracle he is. I am going to post a few pictures. Some of them are not pretty, but I want show the miraculous turnaround he has made.
Thank you for your continued prayers.
Wednesday, December 22, 2010
This afternoon/evening we have been battling some new issues. First we were informed that Alex's virus swab came back positive for H flu. I am not sure what this means and if we need to do anyting. The main problem we are having is Alex is crying in pain about his belly hurting. He is extremely restless. He cannot get comfortable. He is telling me it feels like when he has had pancreatitis so we are running labs to see.
We are hopeful that we will be moved out of the PICU tomorrow and into our regular unit. We appreciate all of you who have been praying for you and to those of you who have to the hospital to bring us food and support.
As of tonight Alex is still in the PICU on the ventilator. The hope is that we can get him off the vent tomorrow. Some of his labs have stabilized while others remain troublesome. He has been alert some today and is able to communicate with us. One of our biggest problems remains the continuing allergic reactions. I have been concerned about extubating bc he is SO swollen and I worry about his airway. I have been assured that they will only do what is safe for Alex. They have added a steroid today to help with the swelling.
If we are able to extubate tomorrow, we should be able to get out to our regulare unit on Thursday.
So overall, Alex remains very sick, but is moving in the right direction.
Tuesday, December 21, 2010
Monday, December 20, 2010
Saturday night Alex spiked a fever that came down very quickly with cool cloths and a dose of Tylenol. Because Alex typically won't respond to tylenol when he is really sick, I thought we would be okay to watch him and reassess in the morning. Alex woke up with a temp of 98.8 and was happy and playing. Around 11:00 AM on Sunday he took a turn for the worse and suddenly starting shaking really badly. He was crying in pain and clearly not well. I put in a call to the doctors and it was decided we needed to head to the hospital. I did not feel like I could safely make the trip to Houston so I decided to head to the local children's hospital. We were taken to a room immediately and the decision was made pretty quickly to transfer us by jet, as Alex's temp was back up in the 104's. Within 4 hours we were in the hospital in Houston. Within minutes of arriving it was decided that we would be heading to the PICU "for closer observation". Before we were able to get him to the PICU, he became very disoriented, starting having seizures and was having very high heartrates and respirations. Once getting to the PICU things started moving very quickly. He was given 2 boluses of medication to stop seizures, extra IV's were started, more meds were given. labs were drawn, etc. He continued to get worse and within an hour the decision was made to place him on a ventilator so his little body could rest.
Once intubated, we saw his vital signs start to stabilize, however his labs continued to look bad. We had multiple doctors and nurses in our room at all times last night. At this point his vital signs remain okay, but he is still extremely sick. He is heavily sedated and still on the ventilator. We know he has a line infection (gram negative rods for those that are interested) which has caused the septic shock. He has also had numerous severe allergic reactions to medications. They are reducing the settings on his ventilator in the hopes that he will take some breaths on his own. He will not be able to come off the ventilator until the swelling subsides and his labs stabilize.
I am extremely thankful for the fast transfer from Fort Worth and the exceptional care we received upon arrival. I truly believe they saved Alex's life. We continue to ask for your prayers as we have a long road to recovery.
Tuesday, December 14, 2010
I love you.
Saturday, December 11, 2010
So now you know why my blogging has been less then stellar....But in the meantime we have also mananged to have some good times. First and foremost, our Mimi was here this past week. There is nothing Buggy and I love more then time with our Mimi! The relationship between Alex and my Mom is one of the most pure, loving relationships I have ever had the privilege of witnessing. They just light up in each others company. To me it is so bittersweet. I love to watch the love between them, but am saddened that the visits are so few and far between. My most fervent wish is that someday we will be closer together.
Mom- Thank you for always making my Buggy feel so loved and special. Everything we do is better when you are here. I love you.
So while Mom was here we went to a Christmas parade, went on a trip with cub scouts to the fire house, went bowling, went rollerskating, rode on a horse and buggy and had three visits with Santa. All with a 48 hr hospital stay squeezed in the middle (more on this in a minute). How's that for busy! We have also continued with school and had the joy of spending an afternoon with playgroup.
We have a few quiet days to recoup and then Grandpa will be here Wednesday to stay through Christmas!
Medically things have been OK... Alex continues to have seizures on an almost daily basis. His feeds are stuck 5 cc lower then our baseline. His belly hurts and is distended. But he has stayed relatively healthy and his energy levels have been decent. We had to make a quick trip to the hospital for an observation. Alex's OCD (obsessive Compulsive Disorder) and anxiety has been much worse over the last few months. He is seeing a behavioral therapist, but we also decided it was time to start a medication. Because he has had SO many anaphylactic reactions to medications in the past, his doctors decided the safest thing to do was admit him and watch as he received the first few doses. He did great and we have seen an improvement in his symptoms.
We have a ton of medical stuff coming up in January, but I will post on that another time.
Thank you for all the love you have shown our family and for your patience with me during this trying time. I know I have not been a good friend to many of you while I try and work through this hard time.
PS- A very special thank you to Missy for working really hard to set up a donation account to try and help us. The Knights have been such loyal, good friends to us in so many ways. They continue to show us the true love of good friends as they do everything in there power to help us through this stretch.
Friday, November 26, 2010
Monday, November 8, 2010
We went to see the Blue Angels as guests of Make a Wish. We were so close to the runway. It was so incredible. It is a day Alex and I will never forget. After the show we got the honor of meeting the pilots. Being the crazy woman I am I took over 500 pictures! Looking through the pictures was almost like reliving the show. Hope you enjoy them!
Straight from the air show, we got on the road for camp. We were headed to Camp for All. Camp for All is a barrier free camp that allows chronically ill and disabled children to enjoy camp like everyone else. Mito camp was set up with the kids separated from the adults. So once we arrived Friday night, we checked in at the medical clinic and Alex was off to join the other little boys in his cabin. One of the great things is that each camper has their own counselor. The ratio was 1:1 or 1:2. Alex had a counselor to himself to make sure he was safe. We saw him at meals and for a few activities, but for the most part he was away from us. We were able to climb a rock wall, go down a zipline, canoe, fish, cook with a chef, petting zoo and horseback riding. I am not sure who had more fun the kids or the adults. I just know that we will all be looking forward to next year! (I don't have many pics bc my camera died and I forgot my charger)
After camp we headed back to Hotel Knight to prepare for trick or treating! We had a great time spending the night with good friends. Alex was thrilled to trade Daddy his candy for a new game!
Wednesday, November 3, 2010
We had an incredible time at the blue angels air show and at mito camp! We have had a good week of appts and are hoping to be home by the weekend.
Monday we saw ENT. They feel like Alex's adenoids and sinuses re both okay to just watch at this point unless they begin causing more problems. We do need to start ear drops to break up a ton of impacted wax in his ears that could be efecting his hearing. The next time Alex goes to the OR they will clean out his ears.
Tuesday we saw Dr. Navarro (GI). He was absolutely thrilled with Alex's weight gain. Alex has gained 4 lbs since starting our 3 nights a week of TPN. He is on the weight chart at the 1%. His BMI is also on the chart now. We will continue the TPN for the forseeable future because of the good results. We also discussed Alex's liver and the concerns about future liver failure. We will set up a consult with the liver transplant specialist at the hospital so we can understand the process and the testing we would undergo if a transplant becomes necessary. Other then that we will keep everything the same.
Today we saw Dr. Pacheco (immunology). She is also happy with how he is doing. We will run some labs. We also performed a Pulmonary Function Test that looked good.
The bad news is that once again Alex's port is not drawing back. How many times have I blogged that in the last few years!!! Alex's surgeon called me today and once again we have decided to go to all costs to save this line. Alex will be admitted tomorrow morning. He will have a chest xray to make sure the line is where it should be. Then they will TPA it. Assuming the blood return is back we will be discharged. If we can't get it working, Alex will go to surgery Friday morning to replacet he line. I have no reason to believe this will be any different then any other time, so I expect to be in and out of the hospital.
In the meantime, we are enjoying time in our second home with our "other" family! As I promised a much better post when i get home!
Friday, October 29, 2010
We have been so busy. Friday we had therapy and school. School is going very well. Saturday we met Missy and Ben (who were in Dallas for the weekend) for breakfast and then headed home to rest before we headed out to a hockey game. Starlight Foundation sent us to see a hockey game. Alex LOVED it! We had planned on leaving after 2 periods, but Alex begged and we stayed till the end of the game. He was not happy the Brahmas lost, but had fun regardless.
Sunday we had our first "go-see-it" with Cub Scouts. We went to the log cabin village which is a replica of a colonial village. The boys really weren't nearly as interested in colonial timeas as they were with chasing each other. It was fun anyway. Alex talks about his friends all the time. He is so happy when he is with other kids. It is always bittersweet. I love to see him enjoy himself, but wish it wasn't such a treat just to be around other kids. Here are some pictures:
Alex and Walker
Thursday, October 21, 2010
As you can see Alex had a great time with Reagan and Riley. It is so neat to get to spend time with friends. Tuesday we had a cub scout meeting and Alex had so much fun playing with the boys. Watching him enjoy life so fully right now really warms my heart.
Saturday, October 16, 2010
Tuesday night was our monthly pack meeting. We knew Alex was going to earn his first badge, the Bobcat Badge. He was really excited. He had also worked hard to earn 3 belt loops in computers, videogames, and bicycling. As we were heading out I grabbed the camera and video camera and told Bruce he was in charge of pictures while I tended to the meeting and making sure my Den was doing what they were supposed to. (I got home and downloaded 3 pictures, so Bruce has forever been fired as photographer). Right after the meeting got started they had a uniform contest. Each den had to send up one boy to represent them. My co-leader and I started looking at the boys and she immediately said, "Let's send Alex up". So we sent Alex up to join the representatives from the other den's. The Cubmaster and another committee member conferred and announced Buggy the winner. I am not sure his uniform was the best, but who could ignore how stinkin cute he was. He was so much littler then every one else. He was so excited to be the winner and get to choose a compass. Later in the meeting the Tiger Cubs were awarded there Bobcat Badges. There was a ceremony where they painted different colors on their faces to represent the values they will need. It was really cute. I continue to love to watch Alex grow and be confident in who he is regardless of the challenges he faces.
Today was our second Cub Scout activity of the week...a rocket launch! After several trips to Hobby Lobby we picked out our rocket, our engines and Alex and Bruce were hard at work making sure it was assembled correctly. We headed out this morning with our rocket ready. What a neat experience. Words can't describe it so here are some pictures....
Alex with his Rocket
On it's way down
Alex, Owen, and a new friend
We are so thankful we are part of this awesome pack! We cannot wait for our next fun pack activity!
Sunday, October 10, 2010
Today was truly special. Something we have talked about for quite a while. Three years ago when Alex was diagnosed with Mitochondrial disease we learned that he was eligible for Make A Wish. Being granted a wish is truly bittersweet. While the idea of a wish is incredible, the reality is that you are not granted a wish unless you have a life threatening disease. That is a hard pill for any parent to swallow. For a long time, Bruce did not want to do a wish, feeling like it meant we were admitting death was in Alex's near future. He has realized over the ensuing years that the reality of this disease is that we don't know what the future holds and letting Alex accept a wsh doesn't change that. I was adamant that I wanted Alex to be old enough to enjoy and appreciate the experience. And so with some (okay, a lot) persuasion from my friends we contacted Make A Wish at the end of the summer. We were supposed to meet with them in late September, but once again our plans were derailed by our hospital admission. So Today was the day to meet Buggy'd wish granters! Make A Wish of North Texas is truly magical. The wishing tower and whole wishing place were incredible. Alex was so excited to meet Abbey and Lloyd our wish granters. We arrived and Alex got to choose a color for the wishing tower. Once he had, the room lit up in that color and we followed a magical path into a sitting area. Alex was able to watch a video about the different types of wishes you can make. Then we moved into the wishing room where Alex was given several gifts. Finally we got on to the actual wishing! They had Alex draw his wish. He drew a picture of a zebra. His wish was to sleep with the zebras. After talking to Alex it was decided that we will travel to San Diego where Alex will get to visit the San Diego Zoo, sleep with the zebras at the San Diego Animal Park and visit legoland. Our wish granters were excited about his wish as they do so many trips to Disney, it is neat for them to plan something new. We will not be travelling for some time so I will keep you updated as the process continues!
Arriving at The Wishing Place