December 28- She has her TPT tube and is getting continuous feeds for 24 hours to help her with her nutrition. She seems to be tolerating it well. We are slowly increasing the feedings until we reach our target feed rate. We are hoping with some nutrition we will begin to see a little change in her. She still sleeps a lot. She still isn't talking and really isn't interested in anything. Pt came and showed us some things to do with her. Unfortunately she will be off for the holidays and won't be back to visit until next Wednesday. Which is very disheartening. It's hard being the parent and the therapist. She is able to shake her head yes and no when asked questions. It is hard to get an answer though because she remains irritable. They think it is due to the Decadron and the cerebellar mutism. Poor baby.
December 29- Everything remains the same. The nutrition doesn't seem to help the way we had hoped. We just keep watching and waiting. We start worrying about her not having a good BM.
December 30 - The pediatrician wants to do yet another CT scan just to rule stuff out. Shayleigh is given 1 mg Ativan before procedure and 12.5 of Benadryl. She refuses to stay still for the scan. The nurse ends up giving her another 1 mg of Ativan and they have to use a whole roll of tape to tape her head down. LOL. My little girl is a fighter. I was kinda worried because that is A LOT of medicine,but the nurse and the resident went down with her and were ready with an ambu bag if needed. The CT comes back and shows she has even less swelling, although swelling still remains in her right and left cerebellum. So that is good news for us!
December 31- New Year's Eve. The hospital basically shuts down except for nurses and doctors. Nick and I are frustrated that no one is working with our girl. We get her up and ride her down the hallwall in a wheelchair and try to get her sitting up and interested in anything. Not even play-doh merits a reaction. And she LOVES play-doh. It is harder and harder to remain encouraged. We have changed her feeds from regular pedialyte to pedialyte with fiber. She is also taking colace and miralax. She hasn't had a good BM. She is able to hold her head up a little more today that she has been. The doctors all remain positive and have nothing negative to say. We continue to wait.
January 1- Happy New Year. Nick and I have now decided if we knew then what we know now we would have waited for surgery. The plan was to have surgery on the 21 and be out by the 26 or 27. Shayleigh still dosen't say anything. She remains irritable & kinda lethargic. She gets super upset when we even mention food or drink to her. She isn't even interested in suckers. Before surgery she would eat suckers all day if I would let her. Goodness forbid we try to put anything to her lips. Even carmex or "lip stick" as we call it gets her agitated. She starts crying, clenching her lips and throwing her head around. We are ready for therapy services to start tomorrow. She is supposed to have a swallow test done in the morning and that will tell us more about where she is swallowing wise. The neurosurgeon has mentioned getting the ball rolling for inpatient therapy. She told us she will speak with the case manager. She gives us a choice between Baylor in Dallas or Childrens in New Orleans.
January 2 - We turned her feedings off at 0200 this morning so she would be ready to eat something. The neurosurgeon comes around and she gets so agitated her TPT comes out. We don't want to replace it until we get the swallow test and results. We have been told we will do it this am. Finally, at 1:30 p.m. we find out that the swallow test that was scheduled for 0800 this am isn't happening because the pediatric speech therapist (the ONLY one they have) is out of town until tomorrow. Mommy makes a HUGE big stink!! We decide that we will go ahead and put the tube back in and then go from there. We will have to shut the feeding off tomorrow morning around 0300 so she can take the swallow test in the morning. Mommy basically has a melt down and lets everyone know that she isn't happy. I realize people need breaks and holidays are breaks, but I do NOT understand letting your one and only speech therapist leave town with no backup for so long. I mean, at least have someone on call for emergencies. I have decided (with a little nudging) that I will be complaining about this therapy issue to management. She is more alert today, but slightly agitated. Of course, she is probably picking up that from me. We have started making a fuss and pushing to be transferred to inpatient rehab. We have told case management that we want to go to Baylor in Dallas. She has sent the paperwork and informs us that they will discuss it tomorrow and let us know if they accept her or not. Nick's boss has been absolutely amazing,but one of us does need to go back to work, which means he will only be able to visit on weekends. We feel that LSU was the best choice to have the surgery, but we are wasting time here now. We know that she needs aggressive therapy. We feel that each and everyday we spend here at LSU makes it much longer until we can get her back to where she needs to be therapy wise.
January 3- Our swallow test is scheduled for sometime this morning. Since Nick was supposed to go back to work yesterday and ended up waiting basically all day on a swallow test that didn't happen I have decided they better come and do this test early this morning. I told them that if we haven't gone by 10 am then I will really raise a ruckus. LOL. The staff assures me that they totally understand and I think they are just as frustrated as we are. We finally have the swallow test and upper GI around 0900 (a really good thing). We find out she is able to swallow without aspirating, but her tongue isn't working like it should. She can't move it and she isn't able to move stuff to the back of her mouth. The upper GI was fine. We were encouraged. We were super glad we did not go straight to a PEG tube as well. We ended up having to replace her TPT tube again. Nick heads to work for the afternoon, although I don't think he gets a whole lot of work done due to all the phone calls. We find out we are accepted at Baylor with transfer being set up for 0700 that next morning! The case manager told us that she had NEVER had anyone be accepted to Baylor that quickly. She said normally it takes 2-3 days just to hear back from them. By this time, we are really overwhelmed. We then decide we should probably find out if our insurance will cover Dallas. We find out that Baylor isn't in network and that our insurance will only pay 80% until a certain amount and then it will be covered at 100%. But, it also depends on how they bill we may end up going above and beyond that amount. With this new information we ask the case manager to send paperwork to Children's in New Orleans because it is in network. We hear from the case manager that IF we get accepted into Children's it would be late Friday afternoon/evening before we could get down there and we wouldn't get seen by anyone until Monday. So basically, we would be waiting...again. So, with this information we decide Baylor is where we are meant to go. At this point, like most parents (at least I hope most parents are like this) we just want what is best for our baby girl. If that means paying medical bills for the next few years then so be it. My OBGYN calls before we hear back from Baylor and we decide to set my glucose test for the next day at 0845. Once we decide about Baylor however I have to call her back and they fit me in for the glucose test and an appt that afternoon. I get back to the hospital after my appointment and the OBGYNS nurse calls to tell me that I failed my 1 hour glucose test and since I am leaving town in the am they will call out a glucometer for me to check my sugars. I have to check a fasting sugar and 2 hours after breakfast, lunch and dinner. She tells me to call in with my numbers Monday morning and we will go from there. I can't tell you how excited that makes me (heavy sarcasm). So, once Nick gets back to the hospital that night we bathe Shayleigh, shovel some food down and I head to the house to pack. At this point, I haven't been home AT all since 12/21.
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