After enjoying our Sunday back at RMH, we had his inthrathecal injection and ABR sedated hearing test on Monday. We got some bad news in that he has mild hearing loss in both ears and needs hearing aids. He can't hear high pitched sounds which include the isolated letters/sounds of S, Th, Sh, Ch and F. Kids some times have a heard time understanding plurals if they can't hear the S sound. As we suspected, due to his narrow airway, they had problems intubating him and I know his throat must hurt afterward. We had a longer than expected recovery (4 hrs.) wait due to having his first round of chemo and having a suppressed immune system. Tuesday we actually had a free day from the hospital which we needed. Today was his ERT day and we started off with a clogged line. After x- rays and a 2 hr. delay they determined that the line was still in place so they ran an anti-clogging med through his line and it cleared it. However late in the day the radiologist looked at the line and since the "cuff" that was supposed to be under the skin had been exposed (pulled out) the line has to be replaced before we do chemo again. So another surgery and a another sedation scheduled for Friday. I'm not sure which is worse.
I met another Hurler family tonight at RMH. The mother had emailed me a while back and her son was diagnosed/ had his BMT at the same age as Coleson. He is 7 years out and looks great but has undergone numerous surgeries and is back for another hip replacement surgery. As I've said, this BMT is only the beginning.... It is always so nice to meet another family and Hurler kid. It truly gives me hope, which I needed today.
Before I forget, we had several packages delivered to us today at the hospital and I want to thank all of you for the care packages, cards, gifts, Banners, "support", :) etc. We have the best of friends and are very thankful. Tomorrow is Neuropsych so no needles, blood, tubes, sedation, or enzymes! Just "play", to see where he stands developmentally.
Also, we've met some wonderful families and kids here, all with there own story/battle. We also have a colleague/friend that has been battering his own cancer journey for the last 18 months. All of which could use your thought, prayers tonight.
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