We arrived in Houston on Tuesday. We had a sleep study scheduled for Tuesday night. Sleep studies are one of Alex's least favorite tests, but he did VERY well. He was a trooper while they hooked him up and was asleep before the tech even left the room. Poor baby was exhausted!
We woke up yesterday morning to quickly run home and shower before heading to the hospital for 2 appointments. Our first appt was with Dr. P (Alex's allergist/immunologist). She totally caught me off guard when as soon as she walked in she announced that she was going to be starting Alex on Sub Q immunoglobulin (just like IVIG, but a different infusion method). This is a treatment that has been used sporadically on Alex many times and has been on the table as a regular treatment for a long time! It is an infusion that should help Alex's immune system work better and keep him from getting sick so often and so severely. The majority of the appointment was spent discussing this. Alex also needed to get another vaccine as he has no titers for pneumoccocal.
After a break to visit some friends and grab lunch, we headed to our second appt with Dr. J (the pulmonologist/sleep dr). She unfortunately only had very preliminary results so we discussed a lot of "what ifs". The first thing she did was a Pulmonary Function Test. Alex's results were significantly worse then his last two PFT's. She also confirmed that Alex definitely has asthma. After discussing that we moved on to the sleep study. She does know that Alex has both restless leg syndrome as well as Periodic Limb Movement Disorder. She is going to run some labs before we determine whether or not to treat. She did not have any results, but we discussed possible oxygen or bipap at night depending on what the results show.
We see GI tomorrow. I have been told at this point that we are putting Alex back on TPN at night. I will not know until tomorrow whether we will be admitted for a few days or not.
Ali
Alex and Maddy
Thursday, September 8, 2011
Tuesday, September 6, 2011
On the Road again...
I feel like this is the story of my life recently and I am pretty sure Brucey would agree! We stop in briefly to do laundry and restock meds and supplies, but I feel like I have spent the last 6 months living out of a suitcase!
This time we are in our second home...Houston! We drove in bright and early this morning. We were hoping our GI would have a cancellation today and be able to squeeze us in, but he didn't even have clinic. OOPS! Alex has a sleep study tonight which he is less then excited about. We have only done one sleep study almost 3 years ago and it was traumatic to stay the least. For a child with sensory issues there is nothing fun about eeg leads that smell and oxygen cannulas. Luckily we are 3 years into this journey and have been through much worse. At this point Alex is on oxygen almost every time we are in the hospital so he isn't nearly as freaked out as last time. I just hope he keeps us the brave face once we get there tonight!
Tomorrow, we see our immunologist and pulmonologist. The allergist/immunologist is one of the main members of Alex's health care team. One of the doctor's who knows him best. So Dr. K wants her opinion to weigh in on what we should do regarding Alex's weight loss and hydration issues. On Friday we see GI and then they will make a decision. We have been told by numerous people to expect to be admitted.
At this point we will let the week play out. I am unsure how long we will be in Houston. Hoping for a quick turnaround and some quality time in our own house!!!
Ali
PS- I guess I should say he is doing fabulous on the new med. The first two doses caused some stomach pain, but since then we have had no problems.
This time we are in our second home...Houston! We drove in bright and early this morning. We were hoping our GI would have a cancellation today and be able to squeeze us in, but he didn't even have clinic. OOPS! Alex has a sleep study tonight which he is less then excited about. We have only done one sleep study almost 3 years ago and it was traumatic to stay the least. For a child with sensory issues there is nothing fun about eeg leads that smell and oxygen cannulas. Luckily we are 3 years into this journey and have been through much worse. At this point Alex is on oxygen almost every time we are in the hospital so he isn't nearly as freaked out as last time. I just hope he keeps us the brave face once we get there tonight!
Tomorrow, we see our immunologist and pulmonologist. The allergist/immunologist is one of the main members of Alex's health care team. One of the doctor's who knows him best. So Dr. K wants her opinion to weigh in on what we should do regarding Alex's weight loss and hydration issues. On Friday we see GI and then they will make a decision. We have been told by numerous people to expect to be admitted.
At this point we will let the week play out. I am unsure how long we will be in Houston. Hoping for a quick turnaround and some quality time in our own house!!!
Ali
PS- I guess I should say he is doing fabulous on the new med. The first two doses caused some stomach pain, but since then we have had no problems.
Wednesday, August 31, 2011
Doing Great
I cannot believe we have only been here for two days! We have been BUSY!!! Alex and I arrived safely on Monday afternoon. Although I was worried I was able to juggle my Bug, a suitcase, a car seat, a wheelchair and two carryons and safely make it onto a monorail to the rental car center and then drive the 30 min to our hotel! Needless to say we were happy to arrive at our hotel. But WOW I was not prepared for the beauty of Northern California. I truly enjoyed the scenic drive from the airport to our hotel. Buggy just wished I would stop telling him to check out the scenery. Shortly after arriving we were able to visit with one of my good friends (Erin) since high school who made the trip up from Southern Cal to visit!
Tuesday I wasn't sure what to expect. All I knew was that we were supposed to meet at the clinic at 9 with Dr. E (the geneticist in charge of the study) and his clinical coordinator, Katherine. After a LARGE starbucks to help propel me through the day, we were off. I must say I have been thrilled with how nice and accomodating the staff here has been. Katherine met us in the waiting room and immediately took us back to a room. We were in clinic for 2 and a half hours! The first little bit was going over Alex's meds and allergies. Then we went over his history. Finally, Dr. E explained the trial and let me ask as many questions as I had. Last he examined/videotaped Bug. I was impressed with how patient they were with both Alex and I and how willing to answer all of our questions. Dr. E also asked us about participating in a few other studies he is doing and offered some possible suggestions to help his liver. After finishing in clinic we headed downstairs to run labs. Then we had a quick hour break to grab a bite to eat before we were off to the hospital for an EKG and Echocardiogram of Bug's heart. We finally finished up for the day at 2:45. We hurried back to the hotel to meet up with our dear friends the Spry's. I have blogged many times about the special friendship Mariah and I have. Mariah and I met online when we thought the kids "just" had food allergies. Her twins (who are just 2 weeks younger then Alex) and Alex were diagnosed with eosinophilic disorders, got tubes and were diagnosed with mito within months of each other. Mariah and I have buoyed each other through 6 years of this journey, but have rarely gotten to see each other in person. Luckily they were able to spend a few hours with us yesterday. We are hopeful that we will have more time together on subsequent trips. Then Erin and I were able to spend more time grabbing dinner and chatting late into the night before she had to head back home. I was so blessed to have these two special friends take the time to come to Stanford to make this trip easier for Alex and I.
This morning we had to be at the hospital at 8 for a special test called a Brain Spect. It was difficult for Alex. I was so proud of him as he did a GREAT job. We had been told to prepare for him to have to lay still for 25 min. however, they failed to mention the first part of the test. Alex and I were taken into a holding room. he had to lay on a bed with the lights out for 30 min as still as possible and he wasn't allowed to talk to me or me to him. Then they injected him with the radioactive tracer before he had to lay still and quiet for another 30 min. Finally he was taken to the scanner room where he was strapped to a table and unable to move at all for the final 25 min while they did the scan. Well, anyone who knows Alex and I knows being quiet for an hour and a half is NOT easy!!! While this wasn't a painful or scary test, it was hard. I was so proud of my mature, brave boy who did fantastic. When that first scan was done, we had a break until 1, when we had to be back to repeat another 25 min scan (but did not have the hour lead up). I was lucky to get to spend some time talking to the radiologist who pioneered this test and the use of studying the function of the mitochondria in the brain. Once again he was so nice and forthcoming and willing to answer ALL my questions. Once the second scan was done, Alex and I came back to the hotel and crashed! We were still tired after waking up and decided to get room service instead of going out to eat.
Tomorrow is the big day! It will once again be quite busy. He has his first dose of the medication, 3 separate sets of labs throughout the day and another EKG of his heart.
I have been very happy with the care here and excited for the prospects of what is to come. I have felt you all lifting us up this week as I have been calm and at peace throughout. We are so lucky to have so many friends and family who say faithfully love us and pray for us. I ask specifically for prayers tomorrow that Alex does not have an allergic reaction to the medication. I will update tomorrow to let you know how he does!
Ali
Tuesday I wasn't sure what to expect. All I knew was that we were supposed to meet at the clinic at 9 with Dr. E (the geneticist in charge of the study) and his clinical coordinator, Katherine. After a LARGE starbucks to help propel me through the day, we were off. I must say I have been thrilled with how nice and accomodating the staff here has been. Katherine met us in the waiting room and immediately took us back to a room. We were in clinic for 2 and a half hours! The first little bit was going over Alex's meds and allergies. Then we went over his history. Finally, Dr. E explained the trial and let me ask as many questions as I had. Last he examined/videotaped Bug. I was impressed with how patient they were with both Alex and I and how willing to answer all of our questions. Dr. E also asked us about participating in a few other studies he is doing and offered some possible suggestions to help his liver. After finishing in clinic we headed downstairs to run labs. Then we had a quick hour break to grab a bite to eat before we were off to the hospital for an EKG and Echocardiogram of Bug's heart. We finally finished up for the day at 2:45. We hurried back to the hotel to meet up with our dear friends the Spry's. I have blogged many times about the special friendship Mariah and I have. Mariah and I met online when we thought the kids "just" had food allergies. Her twins (who are just 2 weeks younger then Alex) and Alex were diagnosed with eosinophilic disorders, got tubes and were diagnosed with mito within months of each other. Mariah and I have buoyed each other through 6 years of this journey, but have rarely gotten to see each other in person. Luckily they were able to spend a few hours with us yesterday. We are hopeful that we will have more time together on subsequent trips. Then Erin and I were able to spend more time grabbing dinner and chatting late into the night before she had to head back home. I was so blessed to have these two special friends take the time to come to Stanford to make this trip easier for Alex and I.
This morning we had to be at the hospital at 8 for a special test called a Brain Spect. It was difficult for Alex. I was so proud of him as he did a GREAT job. We had been told to prepare for him to have to lay still for 25 min. however, they failed to mention the first part of the test. Alex and I were taken into a holding room. he had to lay on a bed with the lights out for 30 min as still as possible and he wasn't allowed to talk to me or me to him. Then they injected him with the radioactive tracer before he had to lay still and quiet for another 30 min. Finally he was taken to the scanner room where he was strapped to a table and unable to move at all for the final 25 min while they did the scan. Well, anyone who knows Alex and I knows being quiet for an hour and a half is NOT easy!!! While this wasn't a painful or scary test, it was hard. I was so proud of my mature, brave boy who did fantastic. When that first scan was done, we had a break until 1, when we had to be back to repeat another 25 min scan (but did not have the hour lead up). I was lucky to get to spend some time talking to the radiologist who pioneered this test and the use of studying the function of the mitochondria in the brain. Once again he was so nice and forthcoming and willing to answer ALL my questions. Once the second scan was done, Alex and I came back to the hotel and crashed! We were still tired after waking up and decided to get room service instead of going out to eat.
Tomorrow is the big day! It will once again be quite busy. He has his first dose of the medication, 3 separate sets of labs throughout the day and another EKG of his heart.
I have been very happy with the care here and excited for the prospects of what is to come. I have felt you all lifting us up this week as I have been calm and at peace throughout. We are so lucky to have so many friends and family who say faithfully love us and pray for us. I ask specifically for prayers tomorrow that Alex does not have an allergic reaction to the medication. I will update tomorrow to let you know how he does!
Ali
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