We are hopefully heading home (to Missy's) today!
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.
Ali
Alex and Maddy
Sunday, September 5, 2010
Friday, September 3, 2010
Even Worse!
If I thought yesterday was bad I had no idea what was in store for me today! After updating last night I went to bed still unsure of what the final plan was. At midnight I was woken up by the surgery resident to sign consent. It was a consent to replace his port. I let him know that this was not the plan I had discussed with Dr. Tsao and was he certain we were not going to TPA the port. I was assured that this is what Dr. Tsao wanted. So I went back to sleep thinking Alex was going into surgery this morning to have his Jtube replaced, scar tissue removed and port replaced.
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.
Ali
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.
Ali
Thursday, September 2, 2010
So Frustrated!
That has been the most exasperating day! We arrived at the hospital at 9 Am to be direct admitted. The plan was to TPA the port to try and get it functioning again and reassess his tube to determine whether he needed surgery. We never got a room until 3:00. Alex and I then sat and waited as the hours ticked away to see a surgeon. At 7:00 the surgeons finally came to write orders and left without ever speaking to me. Our nurse came in and told me that they would not write orders for the TPA. The orders were to stop feeds at midnight. We will head to the OR tomorrow and they will remove the tissue around his tube, replace the tube, and take care of the port. I have been trying to get clarification on if the port is being replaced or what will happen, but I cannot get answers tonight. From what the nurses have been told, the surgeon wants to assess the port when they are down there. I will not sign consent until I speak to Dr. Tsao and get a better feel for what is going to happen. In the meantime, Buggy had to be stuck to get labs because they have to check his clotting and blood counts before tomorrow.
Please keep Bug in your prayers tomorrow and I will update when I get a chance.
Ali
Please keep Bug in your prayers tomorrow and I will update when I get a chance.
Ali
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