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Friday, May 30, 2014

Hospital Stay #1

I posted back in November about Macy and her being sick and losing weight…In December and January she seemed to be doing a little better but she was still spitting up most of her food and she was still not acting like a 8 month should act (no rolling, sitting, crawling, etc…) Around the beginning of the new year she also got a nasty cough that lingered and lingered; she would couch all night long and even if I held her, it scared me on multiple occasions but was not sure what to do, since she would finally get out of the coughing spell and be okay. I was trying to hold out to go to the doctor until her well visit that was scheduled for Feb 18th; but I went with my friend Wende to visit a lady named Ruby on February 6th and Macy started coughing in the car on the way and on the way home…she told me it sounded bad and I should make an appointment and bring her in. I called the doctor right then and scheduled an appointment for the following morning.
Left photo is Macy at 3 months old-her little outfit was getting too small her she had chubby legs...the picture on the Right is her at 10 months-I had dug out this 0-3 month outfit and it fit her comfortably- =(
 I left the house Friday morning the 7th not expecting that I would not be home for a while. We got to the doctor’s office and waited for a little while-my mom had Teddy with her which was nice-we were meeting some friend for lunch after the appointment; so finally we got called back and they weighed her and she was down another pound; I was shocked to see that on the scale; I am around her all day long, I hold a lot during the day and so she seemed like she was getting heavier…but really she had been losing. The doctor told me that she had exhausted all her resources and was going to send us to the hospital for more testing, she was diagnosed with Failure to Thrive for the second time, first time being back in November and we were heading to the hospital. I ended up going to lunch with my mom, Ashlee and some friends; we were celebrating Ashlee’s birthday. My mom took Teddy with her and then Wende watched him for a little while until Ashlee got off of work. I am very grateful for all their help. We got to the hospital and had to go through the ER; everyone kept asking me if Macy was always this color, I had no idea that she was pale but she was. They got us back and we just waited and waited; I just thought we would get some labs and tests and go home; they ended up admitting her.
 We got up to our room later that evening, my parents came to visit and Macy loved seeing them.  The game plan ended up being to monitor her feeding and how often she spit up and the GI doctors and medical doctors would work together and see what to do. They kept her on the prevacid but upted it to twice a day; they actually found fluid in one of her ears, so they put her on amoxicillin to treat the ear infection and they started another antibiotic called erythromycin that they said would help try and push her food through.
Saturday and Sunday were just long days of monitoring, they were not going to start testing until the new week. Sunday a neurologist come in, he did say that she was severely lacking muscle mass but he was not sure if it was related to the malnutrition side or an enzyme disorder or something like that. He scheduled an MRI and lab work just to be sure.  
BED HEAD HAIR
 She found her umbilical hernia-played with it all the time!!!
Ashlee and our friend Becky Forte visited us on Sunday, it was so nice to see some new faces; it was something that we would look forward to the coming week.
Sunday night I kinda had a little melt down after everyone left-I was very vulnerable and scared, all I wanted to do was run away and hide. I sat on the bathroom floor in the dark; I do not remember how long I stayed in there but it made me feel a little better to just let it all out. 

Monday came and the game plan was so weigh her each morning and make sure that she was not losing; they scheduled the MRI and labs for Tuesday morning and she had to be fasting 12 hours for the labs, so around midnight we stopped the feeding; lucky they let her have IV fluids, the night went okay, thank goodness.
Tuesday we waited and waited for them to finally take us down for the MRI, we could not be with her and so my mom came and we went to get something to eat at the cafeteria during the procedure. I was on edge because she was going to be under anesthesia and my heart did not calm down until I got to see her again.
 
 After the MRI-she only wanted my mom!!!
 
Her newborn bracelet had to come off for the MRI-I have not taken it off since she got it at like a week old...It looked so small when I took it off her wrist-this picture actually makes it look bigger than it really is.
 My friend Anissa stopped by the hospital and brought Macy a little stuffed animal and me some candy and reading material; such a sweet friend; Macy loved seeing her and so did I

The test results came back from the MRI a little later; they said that she had more room than normal in her frontal lobe but once they looked at her and asked if big heads run in our family, they said they were not worried. They said they did find two little cysts but they were not something that was worrisome at the moment but we would monitor it later on. Ashlee also has the cysts and has given her headaches at times, so hopefully we can get it checked out later if we need to. Later that afternoon she was still coughing really bad so they scheduled her to do a swallow study; it took a long time for transport to come and get us and the test lasted maybe a minute-it seemed like a waste of time in the moment because it took so much time and effort to get to the test and then they said, o she looks fine. In hindsight, we needed to know if she was aspirating at all but at the moment it was just hard to have another test come back positive when I knew something was not right with her. They can only transport you in a wheel chair back and forth from the various test and procedures and after the swallow study we were sitting in this room FOREVER-my emotions were getting the best of me and I was sick. I finally told them I was going to get up and walk if someone did not come right then, they came!!!   
We got to skype with my sister Lindsay and her family that night and that was fun. Ashlee had lent me her laptop while I was there and that was very nice of her. Tuesday was also the day that Sam was able to come to the hospital; Sat, Sun, Mon and Tuesday he had the biggest tournament of the year at his golf course, he was gone from 5am to 8pm everyday…it was not a great time for this but there was nothing I could do about it. He stopped to see Macy before his softball game; she loved seeing her daddy and my dad also came by and she loved seeing papa. She actually loved seeing anyone other than me; when someone said they wanted to come visit, my heart would be happy, because Macy just loved seeing a new face.
Wednesday they scheduled her to have an endoscopy and scope of the sigmoid colon to check the severity of the reflux; this test she had to be fasting for again but lucky it was only a 8 hour fast; Wednesday morning was the first day that she got a pass to the play room and we went and she loved it. She sat in a little bumbo chair and played with the toys; the found this little pink cell phone with some Disney princesses on it, they let her take it back with us; she help onto that and the hall pass for dear life when we went back to the room.
They had to transport her in a crib downstairs, she looked so small in this big crib-normally they let me hold her in a wheelchair but this time because it was actually a surgery/operation they had to use a bed or crib. She had her trusty cell phone with her the whole time and my mom showed up a few minutes before she went in. It was nice of her to come and be with me while we waited; this time I was on more of an edge, because for the MRI they did local anesthesia but for this procedure they put her all the way out; for little kids that put a breathing tube down to help them as well; it was very nice when they called and said she was out and doing okay.
They put a probe down her nose at the end of the procedure and it would check the acidity and other things in the tummy and record it on a devise; and then I would have a piece of paper and have to record every little thing that happened (coughed, spit up, burped…and if she was laying down, siting, etc).  I was nervous that I was going to do something wrong, but did it anyway.  

My friend Cassie came to visit us that afternoon; she is a mother of three and teaches full time and still took time out of her day to come and see us; so so thoughtful and like I said before, we loved it. 

Then Sam came up with Teddy-it was so cute to see him turn the corner and see us for the first time. He was so gentle and soft; he did not last long in the room, so I left Macy with Sam and took Teddy down to see the castle and trains. I knew that Ashlee was going to be coming up too; so we waited for her and then went back up to the room and then Sam and I took teddy down for a little while, I had wanted some time with him. He is such a good boy, he was been sleeping at my parents and my parents have mostly been watching him. My friend Brittney watched him for a few hours one morning and he had a blast; they have a son a year older then Teddy and they played and played-l am so grateful for everyone that helped us out and for all the prayers in our behalf. I would update my social media pages at the end of the day just so I could let everyone know what was going on.

 She slept okay that night and in the morning the nurse said that the doctor would be in to check on her-I tried to keep her in the crib for as long as possible because it was a pain to move her with the cords and things. She finally got restless so I decided to move her to the bed and try and hold her there. I got her to the bed and we somehow got all tangled and I turned to get something and turned back and she had the probe in her hand and just yanked it out; my heart hit the floor I was so sad, I was mad at myself for moving her and for messing up the test-it was supposed to have been in there for 24 hours and I think we had it 16…so at least time to analyze the data and they said they would not put it back in. They came back later in the afternoon and said that she did have a lot of wet burps, meaning spit up…but her endoscopy did not show that much damage to the esophagus-I am guessing to that she normally spits up right after she eats, meaning its undigested food that does not have too much acidity and it just spells like the formula; there are times she spits up and its more smelly and what not. So that was positive. They did say that her sigmoid probe did test positive for an allergy; they diagnosed it as allergic colitis and told us to keep on the hypoallergenic formula and we would have to monitor it later on-I sure hope that it does not turn into full blown colitis, which is no bueno. So her weight the whole week had fluctuated, she would be up and then down, up and then down…so they told me that once we got her weight consistently going up, even if a little, they would let us go home. 
Friday morning they weighed her and she was up a little, I started sorta cleaning up and packing my bags-it was February 14th, Valentine’s day and marked a week in the hospital. I was so tired of the small little room and everything; the medical doctor came in in the morning and said that he still wanted her to get more consistent and gain a little more, so he was going to keep her over the weekend. I was sad but not sad at the same time-like I said I was tired but grateful that they cared enough about her to make sure she was good before she left. Later that afternoon, the GI doctors came around and said that she was looking so much better than when she first came in. They had seen her lethargic and pale in the ER that day and I asked them if we could leave-they talked to the MD and they ended up saying we could head home. They contemplated sending her home with a feeding tube but I told them I would keep up with what we had been doing here and then make a follow up appointment and we could check her in a few weeks. I also still had her well visit scheduled for the 18th and would be able to get her checked out there too. It was so nice to finally be heading home. 
 These sweet UCF college students came in and played with Macy and took her for a little walk and stayed with us in the play room
 Valentines Day Cards
 We're headed home!!!
We left around 4 and made it to my parents to get Teddy ; Sam made it home and he watched Teddy while I went to the pharmacy to pick up the prescriptions with Macy. We went to our normal pharmacy at Publix but they did not have the erythromycin; they were nice enough to call around and found one Walgreens in town that had it in stock; it was the farthest away from me but I did not care, we went and picked it up; we got home and were able to just spend a nice valentines evening together. We watched a movie and went to bed early.
Saturday was a hard day; I was going through some withdrawals-a week of my life had just went poof and now I was home and had to pick up where we left off-my house was still a mess and it was just a rough day emotionally and physically. Macy also started getting a reaction in the afternoon and by the evening started to get worse; she seemed to be breathing okay. She had hives and her whole body was splotchy.  Sunday it was the same thing, Sam had to work so I brought the kids to church myself, it ended up being just crazy, I sorta wish I would not have brought them. I was able to show Wende her rash and a few other people. The only thing I could think of that caused the rash was the prescription that I had picked up on Friday evening; it was the next day that the rash started; the only puzzling thing about that was, she had been on the same medicine in the hospital the whole week; it was just crazy.
Monday I called the doctor and asked them if I could change her well visit and come in today but they said they were not able to do that; so we waited Monday out and then went Tuesday. The doctor was concerned about the rash but wanted the GI doctors to make the ultimate decision; so Wednesday we went up there-the office is right next to the hospital in Orlando-I paid $50 for the specialty visit for them to say that they did not think it was the medicine but just an reaction called erythema multiforme; it was annoying that I had to drive up there, pay that amount of money for a quick visit for nothing-saying it looks okay and just monitor it but I guess I was glad it was nothing worse. Since then she has been doing a little better, the reflux medicine seems to be helping her spit up, the only problem now is she is constipated-the erythromycin was helping her push her food through. Sometimes she just wrenches in pain and I have watched her little bum try and push out this big, hard feces and it is just sad. They did say I could try some over the counter stuff, maybe that will help!!!
I am grateful for the help of the doctors and nurses at the hospital and for all those that sent prayers in our behalf. Macy and I definitely felt them and my heart is full of gratitude for my little girl, she is such a trooper and I hope we can get to the bottom of all this and she had grow bigger!!!