Friday, August 31, 2012

At a loss...

I really didn't know how to title this post. Isn't this painting lovely? This is Hunting Island South Carolina. We have booked a family vacation there in a few weeks. I'm praying we can still make it happen. 

(this is one of my favorite pictures of Elliott from Halloween 2010,he was Jon from Peter Pan)

On Monday of this week Elliott spiked a fever. He had been doing so well, no fevers, no seizures. But, he did break out in a strange rash the week after we got here. It started on his legs,then worked it's way up to his trunk and arms, eventually showing splotches on his face. On Monday he not only woke up from his nap with a fever of 103.7 but, the rash looked worse than ever. He didn't want us to touch him , telling me he hurt. I gave him Tylenol right away and called his pediatrician. I didn't hear back from the pediatrician (they had already closed) and he was just acting like he was miserable. I took his temp after one hour, still  a high fever. I decided I better take him to the ER before he started seizing. 

We spent the night in the ER. They did all the routine things, and when the blood sample came back his white blood count (WBC) was 25,000! The attending Dr. was in shock, they started an IV antibiodic. They also performed a skin strep test, it came back positive. Dr said he had not seen many cases of that. They contacted the pediatrician on call. He was not convinced that it was strep of the skin...considering he had the rash for 6 weeks, then got a fever

The ER doctor was really concerned and wanted to admit Elliott. The pediatrician on call, didn't.

 Considering the Dr. on call didn't know any of Elliott's history, or for that matter had ever seen him. We went with the ER doctors suggestion. We stayed through the night to monitor the fever, they gave him saline and IV antibiotics and fever reducers through IV. His temp slowly began to come down, still there, but not so high. At 6am they took another blood sample (from the same IV site where they had administered the drugs) his WBC was 10,000. So, they sent us home and said to see his Doctor on Wednesday.

 Elliott slept most of the day on Tuesday, and was acting pretty miserable, rash and fever were still the same. So Wednesday we saw his pediatrician. He was not convinced that Elliott's WBC came down that fast, said that was virtually impossible. He looked through his past medical history, and every lab showed high white counts. The pediatrician wanted to contact Elliott's infectious disease dr in Indiana to get his opinion. Our pediatrician said he wanted to refer us to Atlanta, but wasn't sure what kind of doctor would be best. Since our doctor in Indiana knew all the tests we have already been through,and all of Elliott's history. I thought that was very wise.

 Yesterday while I was in the shower, the phone rang. It was the pediatrician. He talked to our doctor in Indiana, as well as the ER attending doctor we saw on Monday. All three agreed Elliott needs to be seen by a rheumotologist.

 If there was ever a moment in my life where time seemed to stop. That was it. The pediatrician's voice got really soft and serious and he began asking me a lot of questions about family history of medical problems. I took a minute to answer, but it seemed more like ten as I held the phone thinking, trying to put together my thoughts. 

He then told me they would be sending us to Emory University children's health center. How they have some of the best doctors in the country. He told me a few things that his symptoms match, but of course to " not worry because we are not sure yet". "The doctors in Atlanta can run more tests,and likely need a bone marrow sample". "You might want to take things with you to be prepared for an over night stay, they want to test him while he has the fever".

 I stood there in the shower stunned. Or better word would be numb. I thought we were done with all of this. Elliott had been doing great. The rash was just  supposed to be 5ths disease, or maybe an allergic reaction. My heart broke for Elliott, more doctors, more pokes (bad painful pokes now), more waiting for test results. You think you will know what to do, and how you would handle things if your child were to be sick. And in that moment, I was at a loss.

 I'm glad I was in the shower,I hung up, turned the shower on and stood there numb. My mind went racing back to being in the hospital in May, they were going to do a lumbar spinal tap then. But decided not to. I should have insisted they do it. His white counts were crazy high then, I should of asked more questions as to why they were still so high even after days of IV antibiotics. How could we have gone THIS LONG with no answers! 

And then, I just broke down. The pent up emotions of having moved away from everything that is familiar, to still being ever so tight financially, to now being faced with having to tell Elliott we have to go to another hospital, and endure holding my baby down for more pokes.

 My emotions rushed over me like the hot water over my head. 

My heart was literally breaking. 

Brandon had the day off work, and sat in the bathroom and we talked. I got out finally as the water was going cold. Able to gather my emotions and so glad the kids didn't see me falling apart. The kids had been playing in the living room, Jackson had set up a puppet show, doing hilarious things, while the others giggled. They laid out blankets so Elliott could lay on the floor and watch. I don't want to forget that moment. It was just a normal afternoon together at home. Daddy doing house repairs, mowing the grass. I made dinner, and special "Yes Mamma" charts for every time they respond with a "Yes Mamma,I'd be happy to!" they get a penny. (Thank you the Duggars book for giving me that idea!) Kids played outside, Jackson caught a ton of frogs, and climbed over the fence to play with their cousins. Even though it was a day laced with Elliott in our bed resting, or me snuggling him, or giving him some meds  to help with what he calls "whole body hurts", it was a "normal day".

 And I realized that we will be having a new normal, and it's okay, because the kids adjust. They make pallets on the floor so their brother can still participate, they read him books in my bed. They bring the frog inside to show him, they help him over into the back yard at their cousins so he can try to play for a little bit (lasted about 8minutes, then was ready to go inside and lay down). We can do this, I can do this. I gain so much strength from watching them. They just go with the flow, and make adjustments, and giggle away the day. My verse for this season....

"She is clothed with strength and dignity, and she laughs without fear of the future." Proverbs 31:25
The king james version says she "rejoices in the days to come". I'm not there yet, I can laugh, and I can put my trust in the Lord and not succumb to fear. Rejoice in it? Working on that. 

I couldn't sleep well last night. My darn brain can't seem to shut down. I did drift in and out of sleep. Clara came to our room after having a bad dream. I wasn't glad she had a bad dream, but was that I could snuggle one of my babies. She drifted off to sleep, and I put her back to bed at 5:30. At 7:30 my phone rang. It was the doctor in Atlanta. She wanted to assure me that we would get an appointment asap, and asked if I could send her all of Elliott's medical files via fax. Then her nurse called me to say they could get Elliott in  on Sept.14th...that is the day before our family vacation. My heart sank. She is working now to see if they can get him in sooner, so that we can still go on vacation, thankfully where we are going is only 2hrs away from Atlanta, so if something should happen we would be able to get him to help fairly quickly. 

We need a vacation as a family, just to be together and have fun. It will be the first time we have gone just on a vacation as just our little family. Usually we have my parents with us on vacation. It just made it easier when the kids were little, now that there are no babies in diapers, going on a vacation can actually be just that. A vacation! :) We plan to camp on Hunting Island for four days. Pray that we can still go, as this is something we ALL have been looking SO forward to! 

Pray God works a miracle, and that Elliott's health would be restored. Pray for peace as we wait, and no more hospital stays between now and his appointment. Thank you friends and family for loving us, and praying for us. 

For I know the thoughts that I think toward you, says the LORD, thoughts of peace, and not of evil, to give you an expected end. JeremIah 29:11


Anonymous said...

Prayers for you all. *hugs*

Mommy5SC said...

I cannot remember how I found your blog, but I've been following your posts for a few months now. I will be praying for peace for you and for the doctors to have answers and solutions. Four years ago, I was that mother with an appointment with a specialist and a child with strange symptoms. I've been the one in the shower or in the car crying out to God for answers and solutions and for child to be well. It's been four years, but she is well again, and God has been so good. Although I wouldn't wish our journey on anyone (she had cancer), I can honestly say I am thankful for how God used it in our lives to refine us. -- Amy

6HartsforHim said...

Thank you so much for your prayers! We still await appointments and answers. Knowing your praying and thinking of us during this time is ever so comforting!