Three Appointments Down, but still stuck in Houston

Bare with me, it's been a crazy day!

We arrived in Houston on Sunday in time to celebrate Samuel's fourth birthday. Alex considers Samuel his brother so it was important for us to be here for it. Alex loved painting pottery and made an awesome frog box. Then it was early to bed to gear up for our appointments.

Yesterday we saw our surgeon, Dr. Tsao. I trust him completely and he has proven to always have Alex's best interests in mind. He makes all his decisions to help Alex have the most hope for the future. This week he proved this once again. The easy answer would have been to just replace Alex's port. However, a person only has a limited number of spots to put a central line. Once you use a spot it is gone. Knowing that Alex will most likely need a port his entire life, Dr. Tsao is doing everything in his power to preserve Alex's current port as long as possible. So Alex will be admitted on Thursday and they will once again use a "clot busting medication" to get Alex's port functioning again.
Dr. Tsao also looked at some tissue that had grown around Alex's Jtube and is pushing the tube up. He decided to use silver nitrate to "burn" the tissue. This is very unpleasant and Alex was a real trooper. On Thursday, he will look at the site again and determine if he needs to take Buggy into the OR to remove the tissue surgically. At this point, it looks likely that that will be necessary as the silver nitrate does not appear to be taking care of the problem.

Today we had appointments with both Dr. Koenig and Dr. Navarro (GI). As always Alex couldn't wait to get to Dr. K's and waited by the elevator for her to get there this morning. Then he ran into her waiting arms. What a blessing to have a doctor that loves Buggy and that he loves so much. The appointment was much more "serious" then I anticipated. Alex has a syrinx in his spine. A syrinx is a cavity of fluid in the spinal cord. We have been routinely watching this through frequent MRI's and other tests. Up until now he has been asymptomatic. Recently he has developed some symptoms that "may" be caused by the syrinx. We are going to run some simple bloodwork (once his port is working) to rule out some easy fixes for these symptoms. If the labs are ok, then we will quickly schedule an MRI and SSEP. We are praying this is not the syrinx. If the syrinx is the cause then we will have no choice but to put Buggy through a pretty serious surgery and place a shunt in his spine. This has some pretty scary possible side effects so we are hoping we can avoid this. We also discussed Alex's improvement since his Keppra (seizure med) increase. The last thing we talked about was his overall trouble with absorption. Other then that Dr. Koenig is pretty happy with things overall.
After leaving Dr. Koenig we headed to Dr. Navarro's. Alex is at his GI baseline. It is not the world's best GI situation, but it is Alex's normal and we are happy to be there as we have seen much worse. I was expecting to have Dr. Navarro come in say keep things status quo and see you in a couple months. Unfortunately, that was not the case. He came in and told me he was concerned with Alex's weight. Over the last year and a half, Alex has had no net weight gain. They have decided that it is the time to address this. He hasn't even gained as well as expected on TPN. His best growth has been when he is on both TPN and feeds together. We are trying to avoid TPN so the decision was made to put MCT (medium chain triglycerides) oil in Buggy's tube a few times a day. This is the only fat source that does cause the pancreas to release enzymes. Of course with Alex's history of pancreatitis we would not want to do anything to aggrevate his pancreas. I left there thinking we had a great plan assuming Buggy could tolerate it. BUT...after talking to Dr. K this afternoon she told me that MCT can sometimes cause metabolic issues in these kids. Alex has shown us in the past that he can become metabolically unstable pretty easily so we will have to keep a close eye on him. We are going to start this inpatient this week so we can monitor his labs and make sure he is doing okay.
We were supposed to have 2 appointments tomorrow (Hematology and cardiology), but both have been moved to next Wed.
I think that about sums up our crazy start to the week. It looks like we will be here through next Thursday unless something changes.
I will continue to update as the week progresses.
Ali