Appointments and Updates....

It was/is and will continue to be busy around here. I just want to write an update so all who want to know, can know what is going on with Sir Owen.

November 23, Owen has a spinal MRI. Just about everyone who treats him feels that this will reveal that his spinal cord is tethered. A tethered spinal cord is when the cord attaches to this tissue around it which anchors it and inhibits its ability to move up or down in the spinal canal as he moves and grows. Our first whole body MRI revealed that he had a "borderline" tether. Surgery will need to be done immediately (within a few weeks).

December 13, Owen has testicle surgery. We have done this before and hopefully if all goes well with intubation this time, we will be in and out of surgery in a few hours and settled in for our night of observation. The doctor will make three tiny incisions, put a scope through one, locate the testicle and push it down through one incision and pull it through the other. He will have 6-10 meltaway stitches and hopefully it will go as well as the first surgery.

We met with Dr. Campbell. Dr. Campbell took one look at Owens films, ordered a whole bunch more and told us that Owens spine is trying to torque to his right. So as it tries to turn, its shutting the ribs on the right side like a shutter. In addition, his lung on his left side which is on the concave side of his body is being compromised vertically. Dr. Campbell created the VEPTR, which I have wrote about before. VEPTR stands for Vertical Expandable Prosthetic Titanium Rib. Owen will need two, one for each side and a set of anchors on each side that give the prosthetics some extra strength. One of the prosthesis will apply pressure down on the spine pushing the spine back, as it tries to continue to turn. The other will open and spread his ribs creating room for the lung. The before and after x-rays that we saw were remarkable. Owen will be straighter as result of the surgery, although its not the goal of the surgery. The goal is to create space for the lungs to grow and for biology to work for itself without further intervention by us. Needless to say, this is big for Owen. In good ways and bad. It potentially saves his life and allows his lungs to grow and have the space they need. It also begins the next 12 or more years of expansion surgeries which happen every 6 months. Most of the risks are rare, but skin breakthrough seems to be inevitable. Surgery is tentatively scheduled for March 22 in at CHOP in Philly.

This has also pretty much guaranteed Owen will be getting a feeding tube. We have one more month of feeding him as we are and seeing what his weight gain is and then we will have to have one. Nick thinks I have made the feeding tube symbolic of all Owens problems. I think as his mom, one of my most important jobs in taking care of him has been to feed him and now I feel like I am being usurped.

It doesn't matter though because he needs it for surgery and that is the end of that. He needs it, he gets it. Now I just have to figure out what that means for us, the baby sitter and potentially a nurse, since I work.

Wednesday of this week, we are back to CHOP for pulmonology tests for the VEPTR. Soon after we will be scheduled for the Dynamic MRI and a CT scan so that the doc can look down O's spinal cord.

That's all I have for now.

For anyone who is interested, here is Dr. Campbell's testimony before the Senate Health Committee regarding the VEPTR. http://www.aap.org/advocacy/washing/Therapeutics/docs/campbell.pdf

Owens Ribs

A couple of weeks ago we had a chest x-ray for Owen. The orthopedist ordered this because Owen is not gaining weight fast enough and sometimes in Escobar babies, this happens because they have very small chest cavities and/or the scoliosis makes it difficult for them to breathe. In such a small baby, that effort to breathe causes them to expend a significant amount of calories thereby making his ability to gain weight a problem. We really were hoping that this would not be the case with Owen, but the doc called us yesterday and it is. Owens left lung does not have enough room and it needs to be fixed. We have to meet with the pulmonoligist on Thursday of next week. Today I have to make our appointments to go to CHOP (Children's Hospital of Philly) to meet with Dr. Campbell to have a real time MRI and sleep tests done to see what Owen's breathing capacity is. Depending on the results, we will be figuring out when we will schedule (or hopefully how long we can put off) surgery. The surgery is called VEPTR or the titanium rib project. We are fortunate enough to be able to meet with Dr. Campbell himself as he is the inventor of the titanium rib. Our ortho and our pulmonologist trained with him so one or both will assist in the surgery, whenever it may be. I feel a little defeated by all of this. Its huge surgery and once its done, every 6 months they will go in (surgically) and adjust it. I cannot tell you how badly I wish this wasn't the case. The doctor said, in terms of a lethal diagnosis, if anything were going to go wrong, it would be related to the lung and the difficulty breathing and therefore it must be fixed. I don't really have any positive thoughts or words on this. I am just upset. I don't know why this particular issue has me crying and so down, but I guess I felt like I was at my limit before this call came and now, I am certainly there. What my baby is going to have to face in these next few years is breaking my heart and I know I can't let him know that and I have to put on a brave face and be strong for Owen. I just have to find some strength because today I feel as though I have run out.