We have been ENJOYING our summer!!! Last year, we all held down the fort at home. Only family and our nurse came in, and we only left for doctor appointments and visits to CHOP. We wrote down every last detail of Xavier's life. How much he weighted, how many times he went to the bathroom, how much he ate, how much he slept, his meds....we did everything we could to keep him healthy leading up to his Glen. This summer we are much more relaxed. I still write down how much he eats and goes to the bathroom, but he only take two meds and instead we spend the day playing and learning new things.
We just recently got back from a wonderful visit to Rhode Island. We had the opportunity to see family members that X had never met, we got to spend time with Auntie Shayna and Uncle Charlie, who just bought a beautiful new home and threw Xavier a HUGE birthday bash!! We spent time with Grammy and Grampy in Rhode Island, laying on the beach, eating great food and SLEEPING IN!!! Xavier sleeps very well on vacation!!!!!!
Xavier's first pony ride...Aunt Shayna had a petting zoo at his party!
Birthday Boy!
Playing with his friend Charlie and Auntie Sue!
Xavier LOVES Olivia!
We love the beach!
Playing with Grampy!
Beach Baby!!
This is the LIFE!!
I am ready for some fun in the sun!!
We got back from Rhode Island just in time to head to CHOP for Xavier's one year Neuro-Cardiac Care Program visit. I always feel so nervous and worried before any visit, but this visit had me really on edge, because Xavier's favorite Cardiologist and the man who saved his life the night after the Norwood when he had his internal bleeding episode, was not going to be there because of a personal leave from the hospital. When I see Dr. Wernovsky, I defiantly calm down a little so knowing that he was not going to be there, I spend some time with my old friend ANXIETY! All in all the appointment went well. Speech saw Xavier and they were happy with his progress. We met with a developmental ped. who feels that he is pretty much where he needs to be, but that he is slow to warm up (you think???? He had two open heart surgeries and more pokes and probes then anyone should have their entire life...plus he is one!), PT told us what we already know...Xavier is delayed in gross motor skills, he will continue to see his physical therapist and now he wears shoes when he practices his standing. He likes to "sit on air" when you try to get him to stand. When you put heavy shoes on him, it pulls his legs down and allows him to stand with a little bit of help. He is getting there!! We saw our friend and Neurologist Dr. Licht! Of course he suggests that Xavier stay on the blood thinner Lovenox at least until his next surgery...I feel in my gut that he doesn't need it, but at this point, it is not hurting him and I would never be able to live with myself if we took him off of it and something happened to him! And finally we saw Dr. Ravishankar, a cardiologist at CHOP. She was Xavier's attending cardiologist last summer when we were in for a few days because of his blood transfusion. It was amazing that she remembered everything about him, even the reaction that he had to a certain type of medicine that was giving to during that time. I felt much better having her look over Xavier's most recent MRI results, because there was some questions as to weather or not he needed a cath to coil some collateral veins that had grown in his heart.
Clinic visits can be long...so we came armed with Xavier's favorite toys!
She sat down at the computer to look at the film and there is was again...that feeling of Anxiety in my stomach, affecting my breathing. I kept a smile on my face, but all I wanted to do was grab Xavier and run out of the room!! She spun her chair around and started talking about the collateral veins and how she was concerned with the amount that he has (based on his age) and that she is recommending a cath to our surgeon, Dr. Gaynor. She was going to meet with him on Thursday to come up with a plan. There is also a tiny bit of narrowing at the Glen site, but she isn't sure if it will need any intervention. She does feel that coiling the collaterials will help with the leak, because there will be less flow in that valve.
Mid-day nap, while waiting to see more doctors!
So last night (Friday) we got the call that he will be having a cath. She is going to call me on Monday and give us more details. Usually a cath means an overnight stay...so nothing major, but he will be under sedation and most likely get a breathing tube during the procedure, because he usually needs one under sedation. Of course a cath is less invasive then his open heart surgeries, but their are risks. Major risks are rare, but can include heart attack, stroke, damage to the tissue in the heart, and infection. Please continue to pray for Xavier, his team at CHOP and for Nate and I. Xavier is doing well...Dr. Ravishankar said that he looks great and is showing no symptoms of the leak (many times there will be a noticeable difference in color between the top half and bottom half of the body, shortness of breath, leg swelling) collateral veins are not affecting heart function, which is when they usually like to get rid of them..but because of the amount, she does not want to wait till his heart is compromised. We want to do what we can to protect that right side, it is all he has left!!! It is also possible that having this cath will buy us some more time before the Fontan, the last in the three steps. We want him to be big enough and really the older the better for this last one, but the leaky valve made him an earlier candidate.
HERE ARE JUST A FEW OF THE PICTURES FROM XAVIER'S CHOP PHOTO SHOOT!!!
So again, we play the waiting game..we wait for a date, we wait for the cath, we wait for them to take him back, we wait for them to finish, we wait for word on how great he did, we wait for him to recover. Xavier has taught me so many things...what unconditional love looks like, what it really means to have faith, that miracles really do happen, that God can help us through the darkest of nights and that being a heart mom means having patience and being comfortable with waiting. What a blessing it is to be Xavier's mommy. What a blessing it is when he throws his arms around my neck and hugs me close. What a blessing to have such an amazing, supportive husband to help navigate this journey. What a blessing to have such a supportive family. What a blessing to be a part of the CHD community, one where we laugh and cry together. What a blessing to have new and old friends support us. What a blessing to be a CHOP family. What a blessing to have strangers who go out of their way to help us! As worried as I can get, as sad as I feel at times, and even though Anxiety and Grief are now old friends, I am surrounded by blessings. I see the world in a way that I never did before X. Every day, every hour, every minute, every second is a blessing and now those blessings do not go unnoticed.
Playing with Jackson!
We are family!!
This is fun!
Xavier loves his Grammy!
Xavier loves the feel of grass on his feet!
