Friday, January 15, 2010

A Very Intense Week

This has been quite a week! We have had a very intense appointment schedule along with a full day of surgeries. Overall, it has been an optimistic one though. So we can relish in that for awhile. On Monday Elias had an upper GI study done as a precursor for his surgery on Wednesday. For the first time ever we heard a doctor tell us that everything was in the right place and working as it should.Elias! playing with one of his cars We could only laugh when he said that, which of course got us some strange looks. After explaining why we chuckled, they understood exactly why we had that reaction. Tuesday was crazy. We crammed in an occupational therapy, speech therapy, pre-op appointment and a hand surgeon consult. The therapist were suppose to overlap by 30 minutes to co-treat and both arrived late which had us pushing them out the door to get to Cincinnati on time for our appointments there. Then the pre-op clinic was running over an hour behind causing us to miss our scheduled time with the hand surgeon, who was already seeing us outside his normal clinic day as part of the FA team. Fortunate for us they were still able to see us. We will discuss a little more about what we learned from that appointment shortly. Wednesday was the surgeries. It is getting to the point where anytime Elias goes into the operating room, everyone wants their hand in the cookie jar, so to speak. Which is actually a positive and a tribute to the doctors being so willing to work together and coordinate putting Elias under anesthesia fewer times. It is always a risky thing when he goes under because we never know how he will respond. This time he was under about 3 1/2-4 hours and when we saw him in the PACU recovery he was already off the oxygen, alert and trying to get off the bed. We were super impressed with him. We will also cover the findings and results from the surgeries shortly. Thursday was more therapy and today was a cancelled therapy session by his physical therapist, so we thought we were going to get a break today. No No No silly family. Elias had a very dark red area near his central line. For those who may not remember the central line is  a catheter tunneled into the chest and into a vein. This is a direct shot to the heart so any infection at the site could be deadly and fast. Not only that threat, but the fact the Elias line is like gold because he has such poor access issues for IVs we have to always be over cautious. We called our pediatrician at first, who was out of the office today as our luck would have it. His partners tried to help, but not being familiar with Elias they recommended we go to the hospital. So we called the FA clinic and they brought us in on the spot. Fortunately, it doesn’t appear to be anything serious, just a very tough skin break down. We were shown an alternate method of dressing and given new orders for more frequent changes, like we aren’t already busy enough hahahaha. We will check in on Tuesday after the holiday weekend and hope there is improvement. If not we will be returning to the hospital and from there who knows. Things have gone this well so far in 2010, this will too by golly!

Now, onto the surgical findings and outcomes. The first part of the surgery was pulmonary and ENT doing their routine scopes of Elias’ airway. Two contrasting styles of bronchoscopies, rigid and flexible.  I cracked the pulmonologist, Dr. Wood up when he came into the consultation room. In the past he has always come in with a gruff sigh, not in a bad way mind you but to emphasis his displeasure in what he sees inside Elias. This time was less gruff. After his sigh before he could speak I jokingly said, “well that is better than we normally start off.” We began laughing hysterically and asked Katharine, “where did you find this optimist?” Anyway, his findings were that things in the airway are basically unchanged, maybe a scooch better, were his terms, but nothing to celebrate. He continued to say that given this is Elias we are looking inside he was pleased to see that it wasn’t any worse. He did play with some pressures while inside simulating what a vent or bi-pap does and found that even raising the pressures to a high limit had minimal effect in expanding the airway. He said at best it flinched. Now that is not all bad, but it means we hold steady for now. Slow and steady wins the race. He was not prepared to make any real decisions, he wanted a few days to mull it over. There will be a meeting next week to discuss things among the airway doctors about Elias and we will anxiously await what they have to offer. Elias also had an Endoscope of his esophagus and stomach. The stricture we had to dilate so frequently the first year of Elias life seems to be doing well and a dilatation was not necessary. So we have gone 7 months without one. We use to do it every 7-8 weeks, sometimes more. The G-tube is in a great spot and his stomach doing well. Not much else to report from the GI doctor on that. We will follow up in a month or so to chart his weight and try manage that. Elias had been gaining weight nicely, but has been holding steady at 16 lbs +/- a few ounces for about a month. We think he has become so active he is burning all the calories and volume he is getting. Fingers crossed that we are right on that one. I know the photos make him look much bigger, but that is really what he weighs. He is getting taller though, 27 inches!! Elias also had some urology surgeries, but we have not spoken with the urologist on that yet so nothing to report. Finally was the much anticipated ABR, done correctly and without being forced. Oh the difference. We can not really say we were surprised by the results. Elias can NOT hear. Sound is simply not going in. There is a positive though, that is through air testing. Conduction resulted in some responses, some very positive responses. This is a result of Elias ear anomalies. The right ear of course is atretic ,meaning without opening and not fully formed, but it seems there is some ability to function through conduction. The left ear is formed and has a very small ear canal. She noted that an ear drum could not be found which would also explain the failing of the air test. However the same response applies with the conduction test. This makes Elias a strong candidate for a bone conduction hearing aid. We are being paired with an audiologist who specializes in these type of hearing aids and in conjunction with Dr. Choo, our Ear specialist we will work on finding the right one. Baha has been mentioned as the likely source, but we do not have enough information yet. We will keep you posted as we learn more. One thing we do know is that at times getting these bone conduction aids can be a treacherous navigation that ultimately comes up with denial by insurance many times. However, part of this audiologist specialty includes navigating that successfully. So we are going to let her work her mojo in them! We are sure many of you have already thought it and some have asked us already, YES we will have a video camera when Elias gets to HEAR for the first time. That is too historic a moment to miss. Hopefully, it will be a positive initial experience for him. We were both very tearful after speaking with the audiologist. They were tears of joy as she felt strongly that Elias could have some element of hearing and at a fairly decent level with these conduction aids. Getting here was a long tough battle and we are ready for the next one in getting him the equipment he needs. Hopefully, much quicker.

Well this update has become quite lengthy. I think I shall wrap it up here. I will update further on the orthopedic hand surgeon later. It is again positive, but we have some options and time to consider them. We hope everyone is wearing a smile on their faces after reading all this wonderful news. We certainly a hoping this is a sign of how 2010 will be. Elias deserves this break!

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