So to start the day off, Liam woke up like this today... We knew he had started getting a fever last night but this is how our day started. Not fun after we were up all night because of his 104 temp. I swear it's literally always something or somebody around here! The Dr. thinks it's a reaction to the Septra he was on or of course a virus is always a possibility. I'm much more inclined to think it's a sulfa reaction since I had a severe reaction to sulfa as a child and my mom also has a bad allergy to it. That is why I have never let them give it to Riley. We will see how he is tomorrow. She changed his abx since his throat is very red and we have had strep running crazy through the house. Along with some other sinus thing that Ry and I have. Hopefully he will start to look slightly better by tomorrow. His fever was over 101 and usually 102 even with Tylenol and Motrin.
Anyway, we have had a lot of appt. and things since the last time I updated. Riley saw the hematologist, pulmonologist, opthamologist, and of course the pediatrician last week. The eye doctor said she looked great and he doesn't need to see her for 6mo. !!!! Wooo Hooo, always nice to have good news. The hematologist appt. wasn't very informative except we realized Riley has gained 1 1/2 lbs. in about a week and a half. This is worrisome due to the fact that it's mostly swelling and we knew the first sign of any issues with her SVC would be swelling in the top half of her body. He couldn't find any of her records from the visit for some reason and since he wasn't the Dr. who saw her in the hospital he didn't know any details except what I told him. He was going to try to find out if there was any testing we could do to check this but I never heard back from them and this was last Tuesday. We had a good appt with the pulminologist. He said she has had no apnea on her monitor in awhile so we can start trying to wean her caffeine again. He did agree with me that the apnea alarms she had been having were probably just due to hypoventilation rather than true apnea. So, once we have the caffeine weaned in a 2 or 3mo. we will repeat her sleep study. The pediatrician appt went good we checked her Lovenox level although I haven't heard yet how it was and did a blood cx just to be safe since she had a small temp in the office. We are sure though it is just from the obvious cold she has although you always have to be safe. She was also concerned with the weight gain. She has been getting the same amount of fluids and the same TPN formula for several months now so it's most likely not do to that. To make a long and very aggravating story short the final word from the cardiologist was that there is really nothing they can do right now unless they sedate her for an echo which even then isn't always accurate as we now know, so the only way of knowing for sure would be to do another cardiac cath which no one wants to do so soon. So, basically we have to wait until it's bad enough to be causing obvious major issues again.... GREAT! Especially since those like to pop up at the best times.
I also got a call out of the blue from Dr. Mehta who was very unhappy. He heard that we were now having issues with getting the insurance approval to go to NC next week. If we don't get to go next week he is absolutely not willing to wait any longer and wants her to have surgery immediately. Due to the major life-threatening issues she has had over the time we have spent waiting for this appt. He is no longer willing to wait even one more day. I had to agree with him though. I also heard CMS is trying to say she doesn't even need to go and they don't see the point. They think she just needs to have the pyloraplasty done and there is no need to go there since we would still do the surgery once we come home anyway. So, basically they are the one's who have made it so we will not be able to go. Or at the very least it's going to take a miracle for sure! This is also the same agency who had ABSOLUTELY no idea what all of Riley's medical problems really are and have no updated records since she was maybe 3mo. old. Lets just say they thought she only saw 3 specialists...... Trust me you don't even want to get me started on them!
Liam finally had his surgery on Thursday after all the time we waited. Everything went very well. He was able to remove the tube and patch the ear and re-tube it. I think we later found out the problem, He could have sworn he remembered telling us not to use drops in that ear after the first surgery since it was patched but I don't remember him saying that. It obviously isn't the point at least now we know why it probably happened. The ear drops they have you use will essentially "wash" the patch away before it has had time to adequately adhere to the ear canal. So, NO swimming for him until he is re-checked, lol. His nose looked good though, at least the Septra did something good for us! Everything was still open except for one of his maxillary sinuses so he re-opened it and then cleaned everything out. He did say there was still quite a bit of swelling in there so that is probably why he's having so many issues breathing still. Hopefully that will go down with some time.
Onto other things, my mom was able to come down for Liam's birthday which was on Saturday. She got in Thursday morning and the kids had a great time seeing her and we loved having her here too! Liam was able to have a wonderful b-day this year even with all the craziness. He loved thinking all the fireworks were for his b-day, lol! He LOVED all the attention and got spoiled rotten despite our poor nurse being sick that day and unable to come, Riley being sick, and the fact that it was to hot to go out and do anything. My mom left early on the 4th but I had to be at work anyway and besides it rained most of the day anyway so we weren't able to do much that night either.
For this week there is of course to many things to remember as usual. We are supposed to go to TPN clinic tomorrow since Dr. Mehta wanted her seen once I told him about the weight gain issues. The nurse never has called me back with an appt. though despite calling her and leaving a message at least once a day since I talked to him! We were also supposed to go and take pictures with Flashes of Hope since they were going to be at APH tomorrow. I guess we wont be getting to do that now since Liam is sick :( I am really upset about this, we had to cancel our spot last time they were here in March due to the kids having RSV... Guess we'll have to wait until they come next time. Liam has his 4yo check-up on Thursday and he'll also have his appt in the evening with his new behavior/play therapist. She is supposed to be wonderful and was very nice on the phone. I am really hoping she will be able to help us with some of the issues we have had lately. But I am just praying we have a nice quite week that involves no hospital visits. I think we all need it...
Here are a few pics from last week. My mom has all the pics from Liam's birthday and stuff. Once she sends them to me I'll post some of them.
Liam happily "drunk" on his Versed and Tylenol. At least
this time he didn't tell any nurses to take off their clothes!
Riley running around and being her wild cute self in the OR waiting room.