Andrew and Jared returned home and everything went wonderful! Everything looks good (all the blood flow, etc.) with no sign of aneurysm formation. They removed the stents and cleaned him all out and everything looked great! What a relief! What a blessing! Jared seems just like his normal self. Andrew said Jared couldn't wait to get back home to be with his cousins that are still here visiting.
A funny thing that happened to Andrew yesterday at the hospital. Andrew requested Jared's medical record to be printed so that we could overnight it to our Doctor in Boston. About four hours later he gets a call telling him that it's just over 1200 sheets of paper and the total cost would be $465.00!!!! So of course shocked, alarmed and frustrated Andrew went to discuss the whole thing . . . long story short he talked to the supervisor, explained the three items that the Doctor requested and it was resolved in minutes. She printed off what he needed for free and Andrew had to write a note with the phrase "continuous care" on it and that made it so he didn't have to pay for the 3-ream thick pile of papers that claimed to be Jared's medical record. Funny, funny . . .
Now . . . we just need to work on dates for Boston.
Monday, July 6, 2009
I can't believe it has been a month since Jared's surgery and how well he is doing. When we first returned home from Pittsburgh, that first week was a little hard. He was still taking his steroids, which made him more emotional, and irritable. He cried a couple of times saying, "I just want to feel like a normal kid again." It just broke my heart, but after he was done with the steroids things improved sooo much. He and Gabrielle started to play like they used to and his whole mood about him improved. Our other worry since we have been home is Jared's low grade fevers. At first we were giving him Advil around the clock and now they have come much more infrequent. We had him checked for pneumonia, and other infections, but there was never evidence of any type of infection. He is on antibiotics and we feel that these fevers are due to the plastic stents in his nose. Andrew and Jared will be leaving Wednesday to return to Pittsburgh so that Jared can get these stents removed and also receive an angiogram. If all goes well they will return on Friday.
We still have not yet received word about specific dates for Jared's radiation treatment. The radiologist oncologist contacted us a couple of weeks ago and we plan on making contact with him this week. Hopefully, within the week or so we should know more so we can plan more with regards to housing, etc.
Jared really is doing so well. His speech is great (it's quiet, but very understandable) and even his eye has improved greatly since first being at home. We feel so grateful for how things have come about since first being diagnosed. It really is a miracle! Jared had a great 4th of July celebration with cousins that came to see him from Texas. It has been so good for him to be able to be with those he loves to be with, to work, play, be active, laugh - doing exactly what a seven year old should be doing. We know Heavenly Father's hand has been in all of this from the beginning and we feel so grateful to Him for all the blessings.
Happy 4th of July everyone! Thank you all so much.
Posted by jlvance at 9:46 PM