Another long day comes to an end! The tests this morning did not happen. They were not scheduled with anesthesia and when we got there they told us they refuse to do it without anesthesia because it is too painful. So they cancelled the test. I was pretty frustrated as I had asked for it to be moved to be under anesthesia with his tube change. We are trying to decide if we will do it while we are here ar just do it another time.
Alex's tube change went well. It was super quick!We are very excited to have our new tube which is a better fit and a better design. Dr. Tsao came out afterward and said it was oozing quite a bit which leads him to believe it was prety irritated inside. We are hoping this tube will make a difference in Alex's comfort level. We wound up in PACU (recovery) for quite a while as there were no rooms available on our floor. We finally got settled in about 6:30.
I will update when I know more of the plan about discharge.
Ali
Alex and Maddy
Tuesday, November 10, 2009
Monday, November 9, 2009
This will not be my most detailed post as I am exhausted!
Friday we saw GI. I was very happy with the appointment. For the most part we kept things the same, but we tweaked a few things to make my life easier! One we have stopped measuring Alex's urine output which means he can pee in the potty! We are only replacing fluids based on GI output. We are also going to space labs to every other week. The last decision was to increase one of his motility meds again. The only "bad" news was that both Alex's liver numbers and pancreas numbers increased significantly when he was sick last week. However, we expect those to go back down.
Saturday was a fun day! We headed to the Kemah boardwalk and enjoyed a morning of rides, sunshine and laughter. After a lunch at a themed restaurant we headed back to the hotel for some R and R. Sunday we headed to Missy's house to throw in a load of laundry and let the kids have some playtime.
Last night we had Alex's sleep study. While for most a sleep study is pretty easy for Alex it was nothing short of traumatic. Alex has pretty severe sensory issues. Especially around his face. Gluing 20 leads to his face and head and sticking two probes up his nose equals disaster. He was crying to the point of shaking, kicking, hitting, just completely panicked! Luckily we got everything on and the sleep study finished. They forgot to bring me any pillows or blankets so I never slept all night. (Thus my exhaustion today) We should have results in about a week.
Today was a marathon day. It started with an ultrasound of Buggy's kidneys. They look great! Then it was off to preop with Mimi for her muscle biopsy. Buggy was a great helper holding Mimi's hand and comforting her. After a quick trip to visit our friends upstairs on the 9th floor we headed off to the opthamologist. Buggy did great. His vision was fine and we quickly headed back to check on MImi. After learning she had just been taken back, we headed back up to the ninth floor to kill some time. We finally got Mimi and headed back to the hotel at 7 tonight!!! Mimi is doing great and after begging to sleep all day, Buggy was out within minutes.
Tomorrow is another big day and one we could use lots of prayers for. We start with a test bright and early that will be somewhere between uncomfortable and downright painful for Buggy. He is having a test to check the syrinx (fluid) in his spinal cord. They will shock his limbs and see how his brain responds. Then we have a hearing test. After a quick clinic vist with Dr. K, we check in for surgery at 12. Buggy is scheduled to have his tube changed tomorrow afternoon. We will be admitted afterwards for observation.
I will update tomorrow night. Thanks for checking on us!
Ali
Friday we saw GI. I was very happy with the appointment. For the most part we kept things the same, but we tweaked a few things to make my life easier! One we have stopped measuring Alex's urine output which means he can pee in the potty! We are only replacing fluids based on GI output. We are also going to space labs to every other week. The last decision was to increase one of his motility meds again. The only "bad" news was that both Alex's liver numbers and pancreas numbers increased significantly when he was sick last week. However, we expect those to go back down.
Saturday was a fun day! We headed to the Kemah boardwalk and enjoyed a morning of rides, sunshine and laughter. After a lunch at a themed restaurant we headed back to the hotel for some R and R. Sunday we headed to Missy's house to throw in a load of laundry and let the kids have some playtime.
Last night we had Alex's sleep study. While for most a sleep study is pretty easy for Alex it was nothing short of traumatic. Alex has pretty severe sensory issues. Especially around his face. Gluing 20 leads to his face and head and sticking two probes up his nose equals disaster. He was crying to the point of shaking, kicking, hitting, just completely panicked! Luckily we got everything on and the sleep study finished. They forgot to bring me any pillows or blankets so I never slept all night. (Thus my exhaustion today) We should have results in about a week.
Today was a marathon day. It started with an ultrasound of Buggy's kidneys. They look great! Then it was off to preop with Mimi for her muscle biopsy. Buggy was a great helper holding Mimi's hand and comforting her. After a quick trip to visit our friends upstairs on the 9th floor we headed off to the opthamologist. Buggy did great. His vision was fine and we quickly headed back to check on MImi. After learning she had just been taken back, we headed back up to the ninth floor to kill some time. We finally got Mimi and headed back to the hotel at 7 tonight!!! Mimi is doing great and after begging to sleep all day, Buggy was out within minutes.
Tomorrow is another big day and one we could use lots of prayers for. We start with a test bright and early that will be somewhere between uncomfortable and downright painful for Buggy. He is having a test to check the syrinx (fluid) in his spinal cord. They will shock his limbs and see how his brain responds. Then we have a hearing test. After a quick clinic vist with Dr. K, we check in for surgery at 12. Buggy is scheduled to have his tube changed tomorrow afternoon. We will be admitted afterwards for observation.
I will update tomorrow night. Thanks for checking on us!
Ali
Friday, November 6, 2009
Ok, I finally have a few minutes to recap the last few days!
Tuesday was a long and frustrating day. We knew Monday we were ready to be discharged. The only things we needed to accomplish were seeing Hematology and getting a Vitmain K infusion. We sat and sat and sat all day! In the end Hematology didn't come. (Basically, they don't know what to do with Alex because he doesn't fit in their normal pretty little boxes, so they decided just to not show up) Vitamin K took all day to get, so wwe weren't discharged till 6:00!
Tuesday night we spent the night at our good friend's house and had a blast! Samuel, Lauren and Alex played and enjoyed their time together. Missy and I may have laughed harder and had more fun! And she kept me up WAY past my bedtime. We felt like kids having a sleepover. It was comical at times when we would both be doing some medical intervention and look over at each other and realize how abnormal our lives are, but how comfortable we have become in them. Alex and Samuel thought it was great that they got meds at the same times and had to endure the same interruptions to their play. So all in all a huge success and I am sure not the last "slumber party" we will have. Ben and Missy- Thank you for so graciously accepting us into your home and making both Alex and I feel so comfortable!
Wednesday was the big day! The much anticipated arrival of Mimi!!!!! Alex woke up and the first words out of his mouth were "are we going to get Mimi?" Well, her flight arrived at 5:00 PM. It always brings me great joy to see the love between my Mom and my Son. I do not know two people who wholeheartedly love each other more or enjoy each others company more. It is just a true, pure relationship and it makes me very happy to watch.
Our hotel is as wonderful as advertised and we are really comfortable here so we would willingly use Hotwire again even though I was panicked about it!
Yesterday, we had appointments at the hospital. Alex saw our surgeon who took one look at his Jtube and decided to change it! I am so hopeful that this will be the end of his pain!!! We are not 100% sure this is the cause, but the button is too big and it is reasonable to change it and try and fix the problem. I love Alex's surgeon. He has gone out of his way to accomodate us. If you remember in September he came into the hospital on his day off to see Alex and yesterday he saw us in clinic on a day he didn't have clinic. It really means a lot to have a dr who puts Alex's needs first! Mimi also had 2 appointments and then we headed to the zoo for a few hours to enjoy the 80 degree weather!
Today we are off for more appointments. Thank you to everyone who has kept Alex in their prayers. And for all the messages I have received. I cannot tell you how much they mean!
Ali
Tuesday was a long and frustrating day. We knew Monday we were ready to be discharged. The only things we needed to accomplish were seeing Hematology and getting a Vitmain K infusion. We sat and sat and sat all day! In the end Hematology didn't come. (Basically, they don't know what to do with Alex because he doesn't fit in their normal pretty little boxes, so they decided just to not show up) Vitamin K took all day to get, so wwe weren't discharged till 6:00!
Tuesday night we spent the night at our good friend's house and had a blast! Samuel, Lauren and Alex played and enjoyed their time together. Missy and I may have laughed harder and had more fun! And she kept me up WAY past my bedtime. We felt like kids having a sleepover. It was comical at times when we would both be doing some medical intervention and look over at each other and realize how abnormal our lives are, but how comfortable we have become in them. Alex and Samuel thought it was great that they got meds at the same times and had to endure the same interruptions to their play. So all in all a huge success and I am sure not the last "slumber party" we will have. Ben and Missy- Thank you for so graciously accepting us into your home and making both Alex and I feel so comfortable!
Wednesday was the big day! The much anticipated arrival of Mimi!!!!! Alex woke up and the first words out of his mouth were "are we going to get Mimi?" Well, her flight arrived at 5:00 PM. It always brings me great joy to see the love between my Mom and my Son. I do not know two people who wholeheartedly love each other more or enjoy each others company more. It is just a true, pure relationship and it makes me very happy to watch.
Our hotel is as wonderful as advertised and we are really comfortable here so we would willingly use Hotwire again even though I was panicked about it!
Yesterday, we had appointments at the hospital. Alex saw our surgeon who took one look at his Jtube and decided to change it! I am so hopeful that this will be the end of his pain!!! We are not 100% sure this is the cause, but the button is too big and it is reasonable to change it and try and fix the problem. I love Alex's surgeon. He has gone out of his way to accomodate us. If you remember in September he came into the hospital on his day off to see Alex and yesterday he saw us in clinic on a day he didn't have clinic. It really means a lot to have a dr who puts Alex's needs first! Mimi also had 2 appointments and then we headed to the zoo for a few hours to enjoy the 80 degree weather!
Today we are off for more appointments. Thank you to everyone who has kept Alex in their prayers. And for all the messages I have received. I cannot tell you how much they mean!
Ali
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