Wednesday, February 20, 2013

Through the mill

I am writing this post as a thankful and exhausted mother who has never worried so much in my entire life as I have this past week. Let me start my saying that Addison is on the mend. We have a way to go, but we are not where we started this whole journey and for that I praise God.

Addison started getting a little red rash one night before we put her to bed and if you remember, I posted a picture of it on Facebook to see if anyone knew what it could possibly be. We got many different opinions, but ultimately the doctor told us it was an allergic reaction to SOMETHING, good luck figuring out what. So we exhausted ourselves with what it could be. Changed the laundry detergent. Made an appointment to have the carpets cleaned in case it was something we spilled. Racked our brains with different/new foods Addy had tried. Washed sheets. You name it, we thought if it, but nothing seemed to be stopping this horrid rash. It grew, it spread and it changed in color until we went back to the doctors office for the second time. Again, she is allergic to something. Here are my thoughts in that statement:"So glad I just paid a copay at your office for you to tell me my daughter is having a reaction to something. I could have NEVER guessed that at home." I will not get on a tangent!







these pictures are just a few to show you what the rash has looked like through the various stages. I have about 100 more on my ipad and phone, but I just wanted to show you a few.

So Super Bowl Sunday we ran some errands as a family and I just kept telling Mike that this persistent rash just wasn't settling well with me. Something didn't feel right. Call it a mother's intuition or whatever else you want, but I knew something was wrong. So when we got home I called the on call nurse who instructed me to take Addy's temperature and call her back. It was 102.6 and the rash was now hot to touch. When I called her back, she phoned the on call doctor who referred us to Kosair ER. I freaked! You want me to take my otherwise perfectly healthy baby to the ER?! In my mind that is where kids went who are really, really sick! I cried the entire time I got her dressed and ready to go.

So we get to the hospital, the doctors examine this "impressive" rash and determine that she has hives. They gave us a steroid, referred us to an allergist for some further testing and sent us home. That was Super Bowl Sunday.




So Monday after work I went to the pharmacy and picked up Addison's steroid, gave it to her and went to bed content feeling that things were about to get better from here.  WRONG!

Tuesday...I wake up everyday for work at 5:30 and leave the house no later that 6:30. As I am getting ready to leave, I hear Addy fuss and Mike get up to comfort her. Right as I was about to walk out the door, Mike and Addy came into our bedroom and I started talking to her, telling her I hoped she had a good day and out of nowhere she vomits in the floor. I was kind of thinking it might be because of the steroid, so Mike and I decided that it was best if I went on to work and call my mom to see if she could come in to help while we worked, just in case it was more than the steroids. That was the hardest morning I've ever had leaving for work. There was my baby girl sick and vomiting and I just left. So I called my mom, hysterical by the way, and she assures me that she will simply throw clothes in a bag and head our way.

So she holds the fort down while we were at work and I get back home ASAP.

When I returned home from work Addy just wasn't her chipper self. She was rather puny and I could just tell that she didn't feel well. Oh and while I was at work, mom and Mike took Addison to the doctor and they just said that it was a virus that would last two or three days.

So here is where it gets kind of confusing, so hang in there. All night Tuesday Addison vomited, had a high fever  (103.5) and had diarrhea. She was pitiful. My mom had decided to stay the night and help just in case and basically the three of us pulled an all nighter to help our girl. Addison's fever broke in the night and we thought that we might be on the home stretch. Wrong again. By Wednesday afternoon I was vomiting and so was my mom. Don't forget that I was wrong about Addy, so she was continuing this whole vicious cycle as well. My mom decided to leave and try to make it home since we would just be passing this while thing back and forth. The drive that normally takes about one and a half hours, took my mom over three. She was miserably sick and had to stop at numerous restaurants and gas stations because the vomiting was so bad.

Ok, so to recap. Addison is vomiting with the rash. I am vomiting. My mom is vomiting. So in come Mike and my mother in law. In order to take care of Addison while she was sick was really a two man job, that is why you are seeing me refer to teams of two. They cared for Addison, I rested and the vomiting for both us us subsided and now we are at Friday. 

Mike had to work most of the weekend so he suggested that we go and spend the weekend with my mom and dad since I was better, but not still 100% and might need some extra help. I agreed since my mom was feeling better and we traveled to Nicholasville on Friday night.

On Friday night the vomiting for Addison returned again. I called the on call doctor the next morning and guess what she said? It's a virus that can last from 5-7 days. See a pattern here? First they buy time by saying that it was a virus for 2-3 days and now they are buying time saying 5-7 days. Here is what I don't get. If you are a doctor and you don't know what it is, why don't you just say so and then refer me to someone who will know? That won't make me mad, but buying time will. And that's basically what I told that doctor in a not so nice way.

So Saturday passes and in the night my mom gets round 2 of this horrendous virus. Addy has subsided with the vomiting but still has the fever and the diarrhea, not to mention the rash. My mom started feeling better right after she vomited, so the next afternoon she decided to come back to our house to help out again in case Addison was to become sick again.I haven't mention this before, by my mom is a nurse, so we felt a little more comfortable with her in the house.

So we headed home to a clean and bleached house that my mother in law so graciously spent her day off cleaning so that when we came back home I wouldn't have to worry about that. Did I ever mention to you how lucky I am to have the mother in law that I do? Because I am lucky, very lucky! After we got home Addy got fussy again and vomited once more. I wanted to cry. My baby was miserable. The doctors are pushing me away and I didn't think it was getting one bit better.

Then the phone rang and it was my little sister. She tells my mom that she and my dad are both now in separate bathrooms vomiting. You've got to be kidding me! In my 27 years of life I have NEVER seen my dad sick and here he is laying on the bathroom floor begging my mother not to drive back home because if she was to have a wreck or a flat time he was too sick to come and help her. This virus=no joke!

Bless my poor mother's heart. She wanted to help us and she wanted to help my sister and dad, but basically she was stuck. So throughout the night she called and checked in on them and left very early in the morning. 

Through that night Addison became very attached to me. She would cry if I put her down so I held her all night long. I wanted her to know that I will always be there for her. I so wish I could have just taken her place, but I couldn't, so I was more than willing to do whatever it took to make her content.

Monday morning rolled around and we made another appointment at the doctor's office. This time we saw someone new because he was open, our regular pediatrician was booked and the other doctor I had not been very nice to and I didn't want to deal with that while Addison was sick. This new doctor checked Addison from head to toe and told us that he would feel the most comfortable with us going to have some lab work and a urine analysis done just to make sure it wasn't something more than a virus. So we did and it was awful to see my baby cry and scream in pain. The good thing is that all the tests were negative and Addison seemed to be feeling a tad bit better. The doctor instructed us to make sure (as they had before) that she continued drinking lots of liquids and to bring her back on Tuesday for a follow up.


That seemed like good news to us, so I decided that I would go back to work on Tuesday and Mike would take Addy to the follow up appointment whenever they had an opening during the day. So that is what we did and everything seemed to be looking good, but when I got home from work Addison was sleeping (not normal for her) and she slept until I woke her up at 6:45. She was burning up when I picked her up and she wasn't really wanting to eat. Mike then informed me that she had slept for most of the day and hadn't really had that much to eat. I knew that wasn't normal, so again I called the doctor and he said that worried him too. We were then referred to the Kosair hospital downtown and Addison was going to be admitted. I was so incredibly scared although I was a tad bit thankful that someone was just as concerned about my daughter as I was. I was also thankful that we were going to be receiving some answers, but oh my gosh, my baby was being admitted to the hospital?! My most precious possession?! I was petrified!

While we packed for the night, I bawled my eyes out and Addison vomited again. She hadn't had much to eat remember, so vomiting it back up was not a good sign. So we left for the hospital, Mike driving and me in the back with Addison. She was really fussy. I can't blame her...she was tired, achy, had been vomiting for almost a week and frankly just didn't feel good. She turned and made eye contact with me and just looked at me as if she were asking me to help her. I couldn't do anything in that situation and I have never in my entire life felt so helpless. I talked to her, reassured her that everything would be alright and she just put her little hand on top of mine. That was awful; to know your baby is looking at you for help and reassurance and there is nothing in the world that you can do. I just began to pray and while I was, Addy vomited yet again. Really big and it scared me so bad because she was in her car seat that tilted her backward and I was afraid she was choking. Buddy let me tell you something... Don't get in the way of a scared or mad mother. I displayed strength I didn't know I had in that moment. All I could think of was get her tilted forward so she doesn't choke. I jerked that car seat up (although it was not the safest thing to do on the interstate) while Mike pulled over so he could get out and help me get her settled again.

Then we decided we needed to get her to the hospital asap because this was not right. Mike "stepped on it" if you will. 

So that is basically how we ended up in the hospital. From that Tuesday until last night my poor baby was poked, examined, listened to, tested and put through the mill more than I ever wanted her to have to experience. There were labs drawn numerous times. IV's started twice. Catheters put in for urine analysis tests three times altogether. Allergists that examined her. Heart ultrasounds. Stool samples. Blood cultures. You name it, she had to do it. She cried and looked at me the whole time they would do these things and I cried a lot of the times along with her. 

Our room was basically a room that Addison was in to be quarantined. She was not allowed to leave the room and anyone that entered had to wear gloves, a mask and a gown to make sure not to track germs in or to take them out. There were signs on the door that just made our room look scary. She was so scared of the doctor's in that get up too. She became so scared, in fact, that every single time anyone else would hold her she would scream until I would come and get her. Even Mike. As much as I hated that, I am so glad that my baby knows that when she is with me, she is safe. I hope that is a feeling that she always knows, but my heart was breaking that my normally social, bubbly girl was screaming in terror of other people. 

It was kind of a catch 22. We had all these tests run and we were hoping for an answer to why our baby continues to have a fever and a rash, but at the same time, we kind of didn't want an answer because we were scared of what that answer might be. Test after test came back negative and so basically we spent a week in the hospital to be told there was nothing that they could do for her because it was viral. 

Our next step yesterday was to schedule her for a colonoscapy if we chose to, or kind of chalk it up to a virus. We just didn't feel comfortable with the doctor's saying the chances of her having a bowel disease at her age was basically so slim that if she did have one someone would probably want to write a research paper about it and then making the decision to put our child to sleep and have an invasive procedure done. So we declined. The conversation after that was basically that they were not doing anything for Addison at that point that we couldn't do at home, so they discharged us although she is still not 100%. We are supposed to monitor her food intake, temperature spikes and other things for a period of a couple of weeks and they are going to basically start following us as outpatient clients on a weekly basis.


The rash on Addison's leg the night we were admitted.


Bless our poor baby's heart. She was so brave.








She ended up spending her first Valentine's day in the hospital, but Mommy and  Daddy got her an elmo puppet (her favorite), she received flowers from her Mimi and Papaw and her Nanny and Papaw gave her her first sucker. Normally we would have said no to candy, but we felt like it was a special circumstance ;)


Gotta do what you gotta do to get comfortable.




We felt like caged animals. Addison was sitting in the window seal looking out at the cars and people below. A change of scenery is always good. 


Love bug's rash one night. It looked so bad that evening.


Here is how amazing our daughter is. She had been put through so much and she is so very brave. She was still smiling as much as she could. Oh how my cup runneth over for this child!




Addison received this one night from the kids in my class wishing her a Happy Valentine's Day. This made me cry. What special kids.!

So...one week in the hospital, multiple tests done, 15 or more doctors seen and we still have the same answer...your baby had a virus that has to run its course. That's kind of frustrating, but at the same time we are thankful it wasn't something so much worse. We are at home now and I am still home from work so that Mike and I can make sure we are watching her very closely. She has had a good day today in the sense that she has eaten very well, she has played and her temperature has not been over 99.5.

My family is so incredibly thankful for the prayers, phone calls, cards and encouraging text messages over the past week. I truly believe in the power of prayer and for all of you who have said one for us, I love you. Truly, I do. I believe that in our moments of weakness, God has the ability to shine the most. He is working in our child and with our family, so as much as I feel scared, worried, exhausted, frustrated or anything else, I will continue to choose to trust in Christ. He knows the plans for our family and for that I say Praise to the King. Please don't stop praying for Addison's temperature, the doctor's wisdom and the strength Mike and I will need to continue to wake up throughout the night and monitor Addison the way she needs.


God is good, friends. You can tell that she is sick in this picture just by looking at her eyes, but that contagious smile is ever present on her face. We will get through this and we will give God all the glory!

6 comments:

  1. Oh Megan how awful :( I am so sorry you had to endure something like this. I am glad you wrote about it because I was curious but knew you had enough to deal with. Glad you found the strength to keep yourself going and kept the faith through it all too!

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  2. You ALL have so much strength on your side! God is good and He is a healing God! Continued prayers! Love you all!

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  3. So sorry and so scary! We will continue to pray for you guys and hoping she gets better soon!

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  4. You have been so extremely strong through all of this; I commend you. She is an absolute angel and I, too, have faith that our Heavenly Father has his eyes on that little one and your family. :) I hope things continue to look up!

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  5. Oh, Megan. This had me crying for your big Momma heart and your sweet little girl. I am so terribly sorry for everything you have been through. Our family will certainly continue to pray for yours.

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  6. Hi Megan-

    I have been following your blog for quite some time now. I just read this story and man, my heart is breaking for you guys. I actually shed some tears for your beautiful baby girl. I pray that you find answers to whatever is causing this in her.

    Your students' messages were precious. Choked me up.

    Lindsay

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