Long Makenzie Update
Well I clearly spoke too soon when I posted this. I now feel like we have taken ten steps backwards! Makenzie had been doing so well & just occasionally throwing up, but for the most part just spitting up here and there and overall way better. We were not sure if it was the new medicine or if she was just on a good track.
Unfortunately last Friday Makenzie started with one of her “episodes” as I refer to them. I knew after her projectile vomiting twice within 10 minutes that it was not good. Then Saturday morning as Carl says it was the worst we have ever seen her getting sick to the point it scared me. I ended up calling the on call GI Dr at Duke and honestly it was not very helpful because he was unfamiliar with her case, but he did give a few suggestions. He thought maybe it’s just a virus so try some Zofran we had, but if that did not work then it was most likely her GI issues so to thicken her feeding even more. I told him I don’t think at all it is a virus and what has happened in the past and I wanted to avoid her losing any weight and ending up in the hospital. Needless to say the Zofran did not work…shocker! Saturday was rough for her, Sunday was ok, but she really did not eat much at all & what she did eat came back out. So Monday I called Duke back and they wanted to see her on Tuesday. I asked what they would do at the appointment and if I could just take her to her pediatrician because I was taking her sister to be seen. They said that was fine to just get her weight and check for dehydration and call them and let them know what happened. After spending hours at the Dr trying to get urine and then ending up having to draw blood (what a horrible experience that was) we finally headed home. I called to let Duke know her weight (down just two ounces) and they had to draw blood so we were unsure of the dehydration, but the Dr did not think she looked it so we were not that concerned. The nurse called me back from Duke to say they need to just see her…I questioned it, but went ahead and made an appointment but said that if she kept down her food and milk that night I would cancel because I had no one to watch her sister. She said that was fine and offered to help with Makayla if I had to come in.
Well Monday night was AWFUL (I will spare you all the details)! Tuesday we headed to Duke and Makenzie was not herself at all. No matter how sick she gets and all she goes through she always remains the happiest and sweetest little girl. For her to be lethargic and just plain sad I knew it was bad. We got to Duke and they weighed her…she was down six ounces from her last appointment (8 days earlier) and I knew this was not going to go well. The resident came in and then her normal Dr came in to evaluate her and long story short they decided they needed to admit her to the hospital. They have not really witnessed her while actually going through one of her episodes (other than the records from Wake Med & the Pediatrician office plus all the pictures and videos we have shown them) so they were surprised by how bad things got so quickly. They truly were concerned and wanted to get to the bottom of things and get her well asap…what a good feeling knowing they care! Somewhere in the middle of all of this her pediatrician called to let us know that her blood work came back abnormal so they wanted Duke to repeat it…good thing they were admitting her.
The next couple hours were chaotic and a blur. Carl was stuck with work so I had to ask my parents to leave work to come get Makayla who was not the happiest camper watching her sister go through all of this (maybe she does feel her pain). They needed to get an IV going immediately in Makenzie which SUCKED to say the least (especially on a dehydrated baby) , they had to get tubes of blood drawn, and were getting all of her intake stuff while waiting on a room to open up. My parents finally arrived and of course things settled down a bit once they got there.
Once our room was ready they transported us over to the main hospital and we settled in fairly quickly. My parents left with Makayla and Makenzie and I waited on the Dr’s and Carl to arrive. Throughout this entire day they would not let me feed Makenzie so she was miserable!!!!!!!! I could not put her down for 1 second so I was so thankful when Carl arrived. After meeting with the Dr they finally let us give her some pedialyte, then got some Potassium, meds, and sugar water going through her IV. Other than getting blood and urine that was pretty much the only tests they did on her. Once the staff changed over we finally talked the night Dr into letting me feed her which put her to sleep after crying basically the whole day. Of course 45 minutes later the nurse came in and woke her up…GRRRR why do they do that?! All night long they were doing stuff to wake her!!! I will never understand that.
The team of Dr’s came in first thing in the morning and little did I know they had been working on her case since they admitted her (how awesome and such a nice change!!). After going over her records and ruling stuff out they have decided to try and treat her for Abdominal Migraines and Cyclic Vomiting Syndrome aka CVS (click on the words to read more about it). As they made very clear this is something that will take time to know if this is what it really is. They have ruled out some major stuff so now it is almost a guessing game which is frustrating, but at least they are trying. We are still waiting on her blood work results to see if there are any metabolic issues she has, but those take weeks to get back and we were not sticking around for those results!
Because Makenzie had done better throughout the night and not been sick since 6 am they finally let us feed her food again around 9 am. Unfortunately she did not really want much food, but after meeting with the dietician and speech therapist later in the day they were not concerned at all. They said she may not eat food for a while, but as long as she continues to breast and bottle feed that is what matters. They also said that she may eat better once she is home and in her normal surroundings. I was a little worried because we are already so concerned about her gaining weight, but for now we just need to focus on keeping her out of the hospital they said.
Throughout the day/night Makenzie continued to improve! Because they decided right now we are not going to do any more diagnostic tests and they just want to move forward with a new plan of action they gave us the option of staying or going home and continuing care as an outpatient. Makenzie was doing way better and we were comfortable going home so we packed up and hit the road!
Long story short the new plan is some outpatient appointments with Speech therapy, GI, and her pediatrician (and possibly some consults with other departments) and most importantly two new meds. We will also slowly take her off of the Baclofen she is on for her inappropriate Sphincter and see if that makes any difference. So far since we have been home things have been going better each day. She is finally wanting food again and eating! One bonus of her new medicine for the Abdominal migraines is that it is suppose to increase her appetite and I think it is starting to do that…even though her appetite has never been a problem maybe it will still help somehow.
We can’t thank you all enough for your thoughts and prayers throughout all of this. We still have a ways to go so we hope you will continue and please know it truly means the world to us and is helping tremendously!!!
