Just when you think...

It's been a wild and crazy time since I last updated the blog. Just when we thought things were settling down and here we are at almost a week at Levine Children's Hospital. It proves that you just never know what God has planned or what the devil uses to try and derail you.

Let's start with the good news....we have completed our round of ACTH shots!!! WHOO HOO!! There were a total of 40 shots that Logan endured like a champ, but we are glad they are behind us. Not just because of the actual shot that had to be done every day, but because of all of the side effects that have occured due to the medicine. He has gained quite a bit of weight, had a huge appetite meaning he wanted to eat all the time, his face has broken out with what looks like acne, he battled thrush, his blood pressure was a little high throughout the process and now he is likely battling this unknown infection because the steroids compromise his immune system. Without a doubt, this little fella has taken more medication in the last 3 months than I have in my entire life and he keeps going and going. He is so strong and so amazing. Only God could create children to be like that, there's no other explanation.

Now the not so great news. Last Friday, Logan had one of the best days he has had in a while. He was smiling much more and more often. We were working on excercises with him and he loved it! He seemed to feel so much better once we stretched and pulled his little muscles. Nana stayed with us that night so that I could get a little sleep and he had a pretty good night. A seizure awoke him around 3:30am, but he took his bottle and went back to sleep. Around 7:30am he had another seizure, but he also went back to sleep after this one. That part was unusual. I was sleeping off and on until around 9am, which is unheard of in our house these days. Thank you Fred and Nana! But I was uneasy because he is usually wide awake and screaming to eat by 7:30 each morning, at the latest.

When he finally awoke, he cried a little so we fixed his bottle, cereal, applesauce and all of his medications. He took everything, but was basically asleep as he did so. We thought maybe he was just settling down a little because we had been weaning off the steroids. After all of the food and meds were in him, Nana had him on her shoulder. He was sound asleep, but his breathing was fairly rapid. I called the neurologists office, but they do not have an after hours nurse on call, so I reluctantly called our pedicatrician - on her mobile phone. She is truly a gift from God! She and her husband were on their way to a football game, the first time they left their son, and she actually answered my call. I also sent her a video of his breathing - I love technology!! After a bit of discussion she sent us to the ER. Things just didn't seem right. The sleepiness could be attributed to an increase in one of his seizure meds, but the breathing issues were a whole different story.

So we get to the ER just before 1pm. The short version of the story is that his temperature was 102 when we entered the ER and his breathing was definitely faster that it should have been. After multiple tries they finally got an IV in, blood drawn, urine acquired, a chest xray completed and invited us to stay the night at Levine. This is familiar territory for us, only this time we didn't pack our bags ahead of time. It is now just after 8pm.

What I have come to realize is that if we are ever able to schedule an illness, we need to schedule it during the week. It is painfully clear to me that everyone does not have the sense of responsibility of our pediatrician. The urine sample from the ER (just imagine how they had to get that from Logan) did not get entered in the computer system, it took 14 hours to get Enfamil Nutramigen in powder form and his meds didn't arrive until after midnight (and that was early thanks to our persistent nurse). We have had wonderful experiences at this hospital, and for the most part this time hasn't been much different, but it was a challenging start.

God did balance out the challenges with wonderful visits from Dr. Al, Uncle Jimmy and Aunt Pegs and our dear friend Carey (who brought pound cake!), amazing doctors (yet again) and the best nursing staff around. Our overnight nurse, Aslin and the day nurse, Nicole, were so sweet and caring - even in dealing with the issues we had. You can tell when nurses truly love what they do. It was so comforting.

So basically we stay a couple of nights, Logan takes motrin for the fever and an antibiotic for the infection, but they can't determine exactly what is going on with him. He doesn't sound that bad, he's not showing any symptoms really and he seems to respond well to the antibiotic. Nothing shows up on any of the tests and his white blood cell count comes down. So around lunchtime on Monday we head home. YAY!

Monday night is essentially the same as any other night, although consistency has not been a word we can use much lately. Still, everything is as typical as it can be. Once again, Nana takes the night shift. From about 2am he is restless, has a couple of seizures and struggles through one bottle. As I'm getting Freddie fed and dressed for school I hear Nana and Logan - Logan is screaming. When I check on them we realize Logan is burning up. His fever is back - over 102. I call the after hours service and leave a message for the nurse and head out to take Freddie to school. Of course, the nurse calls back when I'm in the drop off line and I can't take the call. Any of you who have ever left a message for an after hours nurse know that once you miss that call you start the hour long process all over again. So, I call the direct line of Ashley's (our pediatrician) nurse, Debbie. These days I seem to think it's okay to bypass all of the typical channels to reach medical professionals. Luckily they let me get by with it.

Long story short, again, we visit Ashley, get another white blood cell reading and head back to Levine. The white blood cell count this time is over what it was when we came on Saturday and a chest xray didn't look normal. We "check back in" and start the process.

We were thrilled to see our favorite nurse Jenny! We have seen or worked with her on every visit to the hospital and she has helped us out in more ways that we can recount. She is a blessing to us and we are thrilled that she has also become a friend.

The basics of the story to this point are that they are still unsure of what is actually going on with him. It's a very good possibility that he came in last Saturday with one infection and caught something else while he was here. He is clearly fighting something, but it's hard to tell exactly what it is. His immune system is comprimised because of the steroids, which makes it even harder to tell what he may be fighting. All of the tests come back negative, the 2 additional chest xrays are not normal, but do not clearly show a pneumonia. He's starting to develop respiratory symptoms, so he is now on breathing treatments and respiratory PT for those. They have not ruled out spinal meningitis because the fever is still up and down, but we'll decide with the infectious disease specialists in the morning whether or not to do a spinal tap.

Last night was particularly bad, because he was much fussier than he has ever been. For over two and half hours he screamed and cried. It's hard to really know what to attribute it to, but here's the list of possibilities. His little behind is raw (sometimes bleeding) because of the antibiotics, the antibiotics also may be upsetting his stomach causing him to poop which causes his little behind to be raw. If his stomach is hurting he wants to eat, but has a hard time doing so because he struggles to breath. On top of all of that, the fever likely makes him feel pretty rotten. We also still have to get all of his meds in him. I can't think of one of them that he likes taking, so that doesn't help any of this. It's a vicious cycle.

So that's where we are with Logan. It's a long hard road, but the blessings are amazing along the way. Just this e vening he spent more time than he has in a while smiling as big as I've seen from him. Even with the fever this time, he's been pretty happy and content. The breathing treatments seem to help, so we will not mind when they come in every 3 hours for those and then add the PT session to every other one - which means he gets patted on the back pretty hard to help loosen everything in his lungs. It's going to be a long night, but we'll take it if he gets better.

Throughout the day today I've been updating Facebook. We want to keep everyone informed, but I also selfishly appreciate more than anyone will know the kind words and encouragement that we receive back. We have had calls, voicemails, emails, cards and so much more sent our way. I think that we are strong enough to handle this on our own from time to time, but I realize that we are never handling this on our own. The strength that you all provide gives me chills.

I also realized tonight that being here is not just about healing Logan. God opens so many doors for us to spread his word. I still believe that there is something angelic about Logan and I know, without a doubt, that our mission through all of this is to spread the love of God with everyone we encounter - either through or because of Logan. I realize too that it may start with Logan, but more and more everyday I realize that God blessed us with two angels. How could we be so lucky? It also comes with a huge amount of responsibility, but we are trying to live up to what God expects.

We had the opportunity to pray for one of the nurses who is having a tough time with her son's teacher, Dr. Cadenhead (our most precious pastor and friend) prayed with us in the ER, the nurse in the ER prayed for us -and by the way, the prayers worked! I also had an amazing conversation with one of Logan's doctors tonight - about God. We first met her Dr. Kiehl when Logan was diagnosed with PMG. She was there to help pick up the pieces I mentioned in an earlier post. It was a brief meeting, but I never forgot her. Tonight she told me that we had touched her and that there was just something about us. Although I believe Fred and I are fairly charming, I'm pretty sure that God's light shone through the lack of shower and a toothbrush. It was amazing! That word is so overused, especially by me, but it was. She and I could have talked for hours. And God was our connection.

The peace that I usually feel hasn't been missing, but I've felt unsettled. Thank our good Lord for bringing it back to me.

Since you are my rock and my fortress, for the sake of your name lead and guide me. - Psalm 31:3 3

I have had multiple people send verses and encouragement this week, and it has made all the difference. Almost straightened and cleared the path.

Your word is a lamp unto my feet and a light unto my path. - Psalm 119:10

...in all your ways acknowledge him and he will make your paths straight. - Proverbs 3:6

The last verse reminds me of our boys - it was read at both of their dedications. As always, praise God, Freddie is unreal. Nana, Papa and Freddie dropped off clothes, food and mail tonight. We had to visit with them in the lobby because little ones can't come upstairs right now as a precaution. He screamed Mommy and came running to me with open arms. Between that and Logan's smiles this afternoon, I am a happy, blessed and proud Mommy.

It's time now for Logan's nightly round of meds. He's getting his IV anitbiotic as Fred is feeding him and we'll start the rest soon.

I am so grateful for the love of God, my amazing husband, our precious boys and our loving family and friends. To God be ALL THE GLORY for this amazing life.