What a long day it has been! Let me back up though and start from yesterday....
Yesterday morning, Alex and I headed in to Fort Worth to Cook children's Hospital for an appointment with Dr. O, our GI. Dr. O direct admitted Alex following the appointment so we could complete some procedures and testing. Luckily, they had a room at the hospital ready for us as soon as our appointment was over, but it makes for a long day entertaining a healthy 8 year old boy in a hospital room. Alex was pretty good and we had anesthesia come by to discuss Alex's history and past problems with anesthesia. I was pleasantly suprised by how open and receptive the doctor was to listening to me and our past history and trying to come up with the best plan possible for Alex. His hope was that he himself would be assigned to Alex's case this morning, but he assured me that if not he would pass on all the info. Late yesterday afternoon I got a call from a 2nd anesthesiologist who was actually going to be doing Alex's case and he went over a bunch of info as well. He even went so far as to call our favorite anesthesiologist in Houston to discuss Bug with her. I was very happy with the overall time and care that was taken to assure that Alex was safe.
This morning we were scheduled for 9:30. They called up and said they were running a few minutes behind and would be up in a bit for him. They came to grab us about 10:15. When we got to pre-op, we spoke to a few people and then they let us know that there was a problem and it would be about an hour. Okay, no big deal....well 1 hour turned into 3 hours! They finally took Bug to the OR about 1:10. I was able to go with him and he did the best he has ever done from an anxiety standpoint. They gave him a steroid and something to control seizures and started the anesthesia. I left him shortly after. They were doing several things while under. They did an upper endoscopy (which looked good except for irritation by his Gtube which he has been complaining about), a pyloric dilation with botox (to open the opening between his stomach and intestines) and they placed probes throughout his GI tract for an advanced test that will be performed tomorrow. Dr. O came out to talk to me shortly before 3. Alex did well. His pylorus was once again very tightly closed (this is the third time we have done surgery on it) Dr. O is hoping that the dilation with the botox will work better this time. At this point Alex is still sleeping and is doing well despite running a temperature. We are watching him closely, but overall things went as well as could be hoped for.
Tomorrow they will hook up the probes to a computer and see how his GI system is working both with and without feeds running. We will also try 2 medications to see if either one improves his GI motility. Our hope is that this test will give some good information that will help us with Alex's GI system and especially the bloating that is causing so many respiratory issues at this point.
I will try and update at some point tomorrow.
Ali
Alex and Maddy
Wednesday, April 17, 2013
Sunday, April 14, 2013
Update on Appointments
We made it home from our trip to Houston late on Wednesday. It was kind of a mixed bag.
Monday we only had one appointment with our Pulmonologist. It was by far the "worst" appointment of the week. Alex has been complaining of shortness of breath for some time. I knew it needed to be addressed, but wasn't ready for some really bad news! We repeated Alex's PFT's (Pulmonary Function Test). Two and a half years ago, Alex's PFT's were perfect at 100%. We have been watching them slowly decline since then. Presently, he is sitting at 40%. More concerning, they are showing a "restrictive lung disease" pattern, not asthma. This confirms our worst fears that Alex's GI problems are negatively impacting his respiratory status in a big way. His GI bloating and distention has always been a problem. It is so extensive at this point that it is resttricting his lung space and not allowing his lungs to expand properly. This needs to be addressed immediately. Unfortunately, we have already been aggressively trying to control the bloating. It is a real possibility that we may lose feeds do to this problem. It would be devastating to go TPN only because of this after working so hard for so many years to keep some feeds going. We see GI Tuesday and this will be a big topic of conversation.
Tuesday we saw Dr. Koenig. She is overall very happy with where Alex is, but concerned about this new development. We also saw the opthamologist. Alex's eyes are nearsighted, but because he doesn't drive we can hold off on glasses a little longer.
Wednesday we saw Dr. Pacheco who was also thrilled with how Alex looks and is doing. Things are status quo from her stand point. We also saw cardiology. Alex's ASD closure looks great with the closure device in place and no leaking around the edges. YAY!
In other news, we have withdrawn Alex from school this week. At the beginning Alex loved going. He looked forward to it. I think a big credit goes to his first teacher who worked really hard to make Alex feel included. In February, she moved into an administration position and he had a new teacher. We have also noticed Alex's anxiety and OCD getting worse. We had a couple of thoughts on cause, but we knew the pressure of the upcoming end of grade test was one of the causes. That coupled with the chaos of our new schedule were a lot for him to handle. He wanted to go less and less and was acting out more and more. Weeks we didn't have school we noticed a totally different child. Regardless, we were sticking it out....until I got a call last week informing me that Alex's homebound teacher was also being removed and changed to someone new. Another change in teacher after working so hard to establish a relationship with our other teacher is not in Alex's best interest. It was the final straw. Alex and I have been very happy and successful homeschooling for many years and are ready to get back to "normal".
We have had a really nice visit with Mimi and PopPop and are really looking forward to our summer trip!
Ali
Monday we only had one appointment with our Pulmonologist. It was by far the "worst" appointment of the week. Alex has been complaining of shortness of breath for some time. I knew it needed to be addressed, but wasn't ready for some really bad news! We repeated Alex's PFT's (Pulmonary Function Test). Two and a half years ago, Alex's PFT's were perfect at 100%. We have been watching them slowly decline since then. Presently, he is sitting at 40%. More concerning, they are showing a "restrictive lung disease" pattern, not asthma. This confirms our worst fears that Alex's GI problems are negatively impacting his respiratory status in a big way. His GI bloating and distention has always been a problem. It is so extensive at this point that it is resttricting his lung space and not allowing his lungs to expand properly. This needs to be addressed immediately. Unfortunately, we have already been aggressively trying to control the bloating. It is a real possibility that we may lose feeds do to this problem. It would be devastating to go TPN only because of this after working so hard for so many years to keep some feeds going. We see GI Tuesday and this will be a big topic of conversation.
Tuesday we saw Dr. Koenig. She is overall very happy with where Alex is, but concerned about this new development. We also saw the opthamologist. Alex's eyes are nearsighted, but because he doesn't drive we can hold off on glasses a little longer.
Wednesday we saw Dr. Pacheco who was also thrilled with how Alex looks and is doing. Things are status quo from her stand point. We also saw cardiology. Alex's ASD closure looks great with the closure device in place and no leaking around the edges. YAY!
In other news, we have withdrawn Alex from school this week. At the beginning Alex loved going. He looked forward to it. I think a big credit goes to his first teacher who worked really hard to make Alex feel included. In February, she moved into an administration position and he had a new teacher. We have also noticed Alex's anxiety and OCD getting worse. We had a couple of thoughts on cause, but we knew the pressure of the upcoming end of grade test was one of the causes. That coupled with the chaos of our new schedule were a lot for him to handle. He wanted to go less and less and was acting out more and more. Weeks we didn't have school we noticed a totally different child. Regardless, we were sticking it out....until I got a call last week informing me that Alex's homebound teacher was also being removed and changed to someone new. Another change in teacher after working so hard to establish a relationship with our other teacher is not in Alex's best interest. It was the final straw. Alex and I have been very happy and successful homeschooling for many years and are ready to get back to "normal".
We have had a really nice visit with Mimi and PopPop and are really looking forward to our summer trip!
Ali
Friday, April 5, 2013
No news is good News
I know, I know, I have been totally slack about updating! As always, no news is good news! Alex is doing great. We are finally seeing some of the spark in him that we have always seen when he is on TPN. It took so much longer this time. I was speaking to a doctor we have seen for a while and she really felt that him taking so long to come around really speaks to how big of a hole we had dug nutritionally. She commented that this is the best she has ever seen him look!
Staying on the medical front...Alex and I head to Houston this week for a number of follow up appointments. It should be a pretty laid back trip as I don't have a whole lot of concerns. My one main concern is that Alex is having a lot of respiratory issues. He is feeling short of breath multiple times a day. All of the doctors feel like this is most likely related to his GI distension/bloating, but I still need someone to address how we can make him more comfortable.
Alex is bouncing off the walls with excitement because Mimi and PopPop are arriving tomorrow for a vacation! We can't wait for them to get here. They will be joining us on our trip to Houston and then staying for a few more days when we get back!
Alex and I trialled a Homeschool Co-op this morning that we will be joining in the fall. Alex had an absolute blast. We had only planned on staying for the first 2 hours, but wound up staying the last hour as well because Alex didn't want to leave. He was chattering about lots of new friends on the way home. He can't wait until the fall when we can join them on a regular basis. I am always amazed by Alex's confidence and grace as he handles new situations and questions. He just loves people and thrives around kids of all ages. It was nice to be in a group of nice, well behaved Christian kids with the same values we have. Alex felt right at home. On the way home, he told me,"I think homeschool kids have are more imaginative, just like me". So true!
Alex continues to love his Mia. She really is such a good match. She loves to play with him, but also is really sweet and cuddly. She is so smart. She is definitely a water dog. Twice now she has taken a flying leap into the bath tub to join me or Alex! I think swimming is in her future.
Bruce continues to love his job. Life around our house is so much better with him so happy at work. We are feeling very blessed right now.
I will update next week from Houston.
Ali
Staying on the medical front...Alex and I head to Houston this week for a number of follow up appointments. It should be a pretty laid back trip as I don't have a whole lot of concerns. My one main concern is that Alex is having a lot of respiratory issues. He is feeling short of breath multiple times a day. All of the doctors feel like this is most likely related to his GI distension/bloating, but I still need someone to address how we can make him more comfortable.
Alex is bouncing off the walls with excitement because Mimi and PopPop are arriving tomorrow for a vacation! We can't wait for them to get here. They will be joining us on our trip to Houston and then staying for a few more days when we get back!
Alex and I trialled a Homeschool Co-op this morning that we will be joining in the fall. Alex had an absolute blast. We had only planned on staying for the first 2 hours, but wound up staying the last hour as well because Alex didn't want to leave. He was chattering about lots of new friends on the way home. He can't wait until the fall when we can join them on a regular basis. I am always amazed by Alex's confidence and grace as he handles new situations and questions. He just loves people and thrives around kids of all ages. It was nice to be in a group of nice, well behaved Christian kids with the same values we have. Alex felt right at home. On the way home, he told me,"I think homeschool kids have are more imaginative, just like me". So true!
Alex continues to love his Mia. She really is such a good match. She loves to play with him, but also is really sweet and cuddly. She is so smart. She is definitely a water dog. Twice now she has taken a flying leap into the bath tub to join me or Alex! I think swimming is in her future.
Bruce continues to love his job. Life around our house is so much better with him so happy at work. We are feeling very blessed right now.
I will update next week from Houston.
Ali
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