January 16, 2013

January 16, 2013

Where to start.
It's cold. Very cold...and wet too. I had to get Clayton some gloves tonight so his hands don't freeze walking to and from the hospital. He continues to be happy as he can be which is awesome and I was SO proud of him in clinic today. He was so good while I was talking to the doctor. He sat in their office chair playing with the nurse practitioner and looking at the Wild Things book. No fussing or whining to go out the door or any of the usual which typically makes it hard for me to talk to the doctors. It was so nice. Especially after yesterday.
Let me start from the beginning...
Clayton has a history of croup before cancer and then for the past few months, he has been having respiratory issues; these issues have gotten worse to the point that they landed us in the ER multiple times in December. On one of the ER visits he turned blue in the ER twice in one hour. So for some unexplained reason things obviously got worse; in a very bad, bad way. Our wonderful pediatrician (who by the way came to the ER to check on us) had us go see an ENT a couple of weeks back. To be perfectly honest, it ended up seeming like a useless appointment because the ENT checked his ears, talked to me and said things look OK, I recommend you go see a pulmonologist. So we waited hours to see a man for less than ten minutes who then told us to go see someone else.
Since MSKCC had mentioned a pulmonologist before, we made an appointment up here for this week to see what they could tell us. We met with Dr. Stone yesterday and she was lovely. I mean absolutely wonderful. I think she talked to us for nearly two hours. Literally. She mentioned a bunch of maybe's, but we left her office with a low dose steroid inhaler prescription, her word to talk to the doctors at MSKCC, the idea of investigating further on our next trip, a recommendation to see another ENT and our plans for scans this week still intact. Dr. Stone was obviously concerned, but she seemed to be trying to decide how concerned she was. We left her office at noon and at one we got a phone call that she had made an appointment for us to see their ENT at 3:30. I didn't argue and went with it, anxious to get this respiratory issue resolved. The ENT was very nice, but surprised us by having me sit in the chair, wrap my legs around Clayton's legs and wrap my arms around his arms against his chest, while a nurse held his head and the doctor fed a tube down his nose to get a quick 15 second look at his airway. Oh it was miserable. It makes you feel like such a traitor; and that is coming from some one who has had to hold down their child a lot. Anyway, the doctor said his upper airway looked a little swollen, but not much and that was good news. However, when Dr. Modi (ENT) continued to talk to me and the pulmonologist (who at one point was on speaker phone) and learned of the turning blue episode, he became very stern that he recommend we do not sedate Clayton again until he can do a bronchoscopy. Oh crap. It was 4:00 and he was changing the game plan for the whole week. Dr. Modi and Dr. Stone both rearranged their schedules in order to do the bronchoscopy Thursday...only we didn't know what time. Well when I called MSKCC late Tuesday after meeting with Dr. Modi, they had not heard from him, so they were still expecting us to do the CT Wednesday and expecting that we were premeding Clayton for his MIBG injection for the scan on Thursday. Here is where things get a little (more) complicated:
The ENT said don't sedate him until we do this procedure, but MSKCC had not yet heard that, so they were planning to go ahead with scans for which he has to be sedated.
In order for Clayton to get his MIBG injection on Wednesday, I am suppose to give him a dose of steroids 24 hours and 12 hours before the injection to prevent his allergic reaction. However, the steroids would interfere with the bronchoscopy on Thursday which we would not have confirmation on until late in the day Wednesday. But if I don't premed Clayton, they will reschedule his MIBG no matter what.
And if they have to reschedule his scans for any reason, that means we have to stay up here into next week.
So, lots of little hitches thrown in my giddy up the first day. This is just a glimpse of the chain reaction the last minute ENT appointment spurred. While it is frustrating to balance all of these little things and have a constantly changing schedule and not be able to count on anything, George and I are thrilled to be having this done and to have had these doctors rearrange things to fit this in. It means so much that they put such an emphasis on Clayton's well being. George and I have lost so much sleep this past month or two over Clayton's respiratory issues that hopefully this will bring us some peace. The ENT in mobile mentioned he would not do a bronchoscopy on Clayton in Mobile anyway and would have sent us to Birmingham; so we would have to do this away from home no matter what. We hot as far as giving him his contrast for his CT this morning before the doctors called it off and we finally got confirmation at the end of the day that we will do the procedure at 7:30 Thursday morning. This means they have canceled all of Clayton's scans until the doctors can see what's going on in Clayton's airway. The procedure will involve the ENT scoping the upper airway, followed by the pulmonologist scoping the lower airway. We will do this at New York Presbyterian Hospital across the street from MSKCC.
So Tuesday turned things upside down, Wednesday we were searching for clarity and Thursday hopefully we will get some answers. Waiting to hear what the new schedule for our scans will be...for now just glad to know what's next...or at least what we are doing tomorrow ;)

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