Wednesday, February 8, 2012

9 Month Checkup in Houston

We traveled to Houston Jan 29-Feb 2 for Elizabeth's 9 month checkup. Thankfully she did well with flying and slept the entire time on all of the flights! We were fortunate enough to be able to stay with our wonderful friend, Shelley and her family during our stay this time instead of at the Ronald McDonald House.  She is one of the amazing nurses that took such great care of Elizabeth during her stay at TCH.  During her visit Elizabeth had lots of labwork done, a brochoscopy,  and a chest xray. We met with the transplant team, dietician, social worker, and genetics during our visit.
Thankfully all of her lab work looks good. They were happy with all of her nutrition levels - which makes me feel better about the home blended diet we are doing. At least I know we are mixing the right foods for her. They did decrease her steroids and one of the anti-rejection meds due to higher levels. The downside of having the higher levels is that her immune system is even lower than "normal" for an immunosuppressed kiddo, so we have to be extra careful until her levels are within normal range again. All of her labs will be repeated here at home sometime next week. During the bronchoscopy her lungs looked good. The Dr is still concerned about her floppy airway. We will be heading back to Vanderbilt to see the ENT Dr there and we will discuss the plan for either fixing her airway (surgery, stenting, dilation) or waiting it out. Thankfully the transplant Dr is planning to discuss everything with ENT, so that everyone is on the same page as far as what needs to be done and then deciding where it needs to be done at.
     We met with genetics during this visit and again discussed Elizabeth's diagnosis with the FLNA mutation. I know in the past I have mentioned it and the fact that it is what basically caused her medical problems. It is such a rare and underdiagnosed condition that there just isnt much research availabile, or much knowledge regarding it. We asked lots of questions about other medical issues it causes, we want to be sure we know what to ask our Drs to look for.  Now that we have "fixed" the lung issue. We have to focus on the other problems that this mutation can cause. Cardiac issues are one of the biggest concerns, so we have to be sure that her Cardioloigst at Vanderbilt is looking for the right things on her echos and that they are being done frequently. She will be seeing him in March, and we plan to discuss everything and make sure he is up to date on this disorder and what needs to be looked for.  Other issues that we were told to monitor closely are her hearing and vision screenings. And of course the hypermobility that this mutation causes, she will need therapy services for a very long time. We also discussed the possiblites of having more children, and the chances of this mutation occurring again. We were told that the possibility is extremely low, the chances of this occurring again would be the same chance of it happening to anyone else in the general population.




   So all in all her 9 month evaluation was very good. The transplant team is happy with her progress, they just want her to gain some weight :) We are very thankful for a good report, and a safe trip. We will travel back to Texas in April for her 1 year evaluation and if all goes well then, her evaluations will be moved to every 6 months instead of every 3. Kind of exciting and scary to me. I almost like knowing that they see her so often right now. But not having to travel that far every 3 months (for a not very fun trip) will be good for all of us.  I am so thankful that she is doing so well, and just hope and pray that she continues too!!

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