Saturday, April 25, 2015

Ryder's Battle with Fevers - Part 14

Need to catch up? Part 1 - Part 2 - Part 3 - Part 4 - Part 5 - Part 6 - Part 7Part 8-Part 9-Part 10 - Part 11Part 12 - Part 13

Monday was the worst day by far. 

Ryder could have pain medicine every 3 hours, but woke up every two hours Sunday night/Monday morning. He would cry inconsolably and only wanted ice chips. 

We finally just got up for the day and spent the day in a cycle of cuddling, crying and medicine. Every little thing caused a meltdown, and I knew that it was just because he felt so miserable. I also knew crying like that couldn't be good for his throat. So we were in this endless cycle of his throat hurting, so he was more emotional and would be screaming and crying which made his throat hurt more. Night. Mare.

Monday night/Tuesday morning were a little better. He might have woke up crying one less time. We stayed up on his pain meds and there was a little less crying. 

Wednesday we had Iyla's 6 month check up, and her doctor took a look at Ryder's throat and said it was healing wonderfully. He was very impressed with how everything looked. And we sighed a sigh of relief.

Thursday we were able to cut back on his pain meds, and Friday we made it all the way to the evening before we had to have any.

Today Ryder has been running around, playing and coping with everything as he normally would! Praise God!

The next fever is supposed to arrive within the next week to week and a half. Hopefully, I will be able to update soon that we have missed the first fever! 

We can't thank you enough for all your prayers and thoughtful concern. Our little guy is truly loved by so many, and we greatly appreciate it. 

Friday, April 24, 2015

Ryder's Battle with Fevers - Part 13

Need to catch up? Part 1 - Part 2 - Part 3 - Part 4 - Part 5 - Part 6 - Part 7Part 8-Part 9-Part 10 - Part 11- Part 12

We are a week and a half out from surgery now. I had hoped to write this post sooner, but things were changing daily, so I couldn't really write and "after-surgery update" post until we had made it through all the after-surgery ickiness.

I cannot say enough about Peyton Manning Children's Hospital, the staff, nurses and Dr. T. They. Are. Amazing. 

Ryder left us for surgery in a car, and I literally had to repeat his name to get him to look at me and give me a wave by. He had a blast playing with everyone there.

As soon as he woke up, I was taken to his side and put on the bed so that he could cuddle up in my lap. When I walked into recovery, he was crying. Once I had him in my lap, he was asleep in less than five minutes. Perfect. 

They rolled both of us up to his room and we settled in for a day of cuddles and movies. They seriously had more movies than we do at home, so we just went from one to another, cuddling and snoozing.

Ryder started drinking almost immediately. He was hungry, so by afternoon, he was eating soft foods. Oddly, he had no interest in popsicles...which are generally his favorite.

We stayed the night and the pull-out couch they had for Michael and I was wonderful and could be pulled right up next to Ryder's bed. Ryder and I spent the night holding hands...which worked out great to comfort him, and for me so I didn't have to sit up all night to comfort him.

We were released the next day and had a pretty smooth few days of cuddles and ice chips. They said Friday would probably be the worst day, but it wasn't too bad. So I sighed with relief and then Monday came.

Babies are, I'll have to tell you about Monday tomorrow.

Monday, April 13, 2015

Ryder's Battle with Fevers - Part 12

Need to catch up? Part 1 - Part 2 - Part 3 - Part 4 - Part 5 - Part 6 - Part 7Part 8-Part 9-Part 10 - Part 11

Tomorrow's the day. 

We have to be at the hospital (that is two hours away) at 8:00 a.m. My nothing-registers-until-after-9-a.m. husband is not looking forward to being out of the house by 6:00, but it has to be done. 

We register at 8:00 a.m. and then the surgery will be an hour to an hour and a half later. They won't give us an exact time. 

The surgery is going to happen at the "main" hospital. Once he is released from recovery, he will be moved to a room in the children's hospital. The hospitals have had a high rate of respiratory illnesses, so Ryder won't be allowed any visitors outside of Michael and I. 

Those are all the details. Those are the things that I am trying to focus on. That and the fact that this is a "routine" surgery that is done every day. That after this, Ryder will hopefully be fever free...or at the very least, the fevers will lessen in severity. 

However, Satan is getting me good on this one. I don't know how to put it into words exactly. I just have an anxious spirit. I know that is not from God. He tells us that fear is not from Him. So I'm praying...and praying...and praying. 

I have Ryder's bag packed. I let him pick out his favorite jammies. Packed both sets of slippers because you never know which ones he will want. Packed some of his favorite books and all his DVDs. Reiney (his stuffed reindeer) and his blankets will be packed Tuesday morning. (Dear God, PLEASE don't let me forget Reiney!)

If you know me well, you know that I am not an overindulgent parent. I want Ryder to know that he is loved greatly, but he does not get everything he wants and knows that if he doesn't listen, he will get in trouble. In this case though, I just want to protect him and make him as comfortable and at peace as possible. 

I think he has picked up on my anxious spirit though. He has been extra fussy and not himself the last few days. So again, I am praying. 

Good thoughts are all well and good, but they don't do anything. So, please pray for Ryder. Pray for the Pediatric ENT doing the surgery. Pray for Michael and I as we wait and as we try to comfort Ryder afterward. Pray for Iyla as she will be away from me for 24 hours (and has never been away from me for more than a few hours). Pray for my parents as they deal with a 6-month-old baby that is missing her mommy. Just please pray.

Saturday, April 4, 2015

Out of the Mouths of Babes

I work from home, and I wouldn't have it any other way after experiencing it. 

It is wonderful. 

It is incredibly hard.

It is worth it because I get to spend 24/7 with my kids...but as any mom can tell you, spending 24/7 with your kids takes a toll on you. 

I have a two - almost three - year old and a five-month-old at this point in our lives. This means there are lots of smiles and giggles, but there are also times when I think I might lose my hearing from all the screaming and crying. It seems they already like to see who is the loudest. Crying in stereo is not fun.

The other day I was having "one of those days" and was pushed to the limit. As I sat in Ryder's floor to put a diaper on him for nap time and was going through the daily battle of wills with my two-year-old, I whispered to God that I needed help...that I needed just a little break. 

A few seconds later, Ryder looks at me and says, "God made you special, and He loves you very much!" with a huge grin. 

Ryder has never said these words to me before, but they are at the end of all his Veggie Tales videos...I believe with my whole heart that Ryder saying that to me at that exact moment was a gift from God. He gave me help and my "little break" through my beautiful, wonderful child. All the weight that had been on my shoulders just moments before lifted. I wrapped my arms around Ryder and couldn't stop smiling as I hugged him tight.

So in case you need to hear it just like I it for the first time or as a reminder...God made you special, and He loves you very much!

Friday, April 3, 2015

Ryder's Battle with Fevers (Part 11)

Need to catch up? Part 1 - Part 2 - Part 3 - Part 4 - Part 5 - Part 6 - Part 7Part 8-Part 9-Part 10

I had to figure out a way to get Ryder in to see a specialist. Iyla has a doctor, but Ryder hasn't been sick except for his fevers, so he hasn't been to the doctor since Dr. D moved to Indy. While I love Iyla's doctor, I just didn't feel right asking him to do it. 

So I hunted down Dr. D's new number and gave them a call to see what he would recommend. They set us up for an appointment for Friday that same week. Awesomesauce.

They gave us the last appointment of the day so that we didn't have to miss any more work than necessary. So after two hours in the car, we go in the office, fill out all the forms and give them our "insurance" information (we are a part of a Christian medical bill sharing program that isn't technically insurance, so it throws a lot of offices off at first). The ladies are having trouble with inputting our "insurance", but it is so late that they can't call and talk to the "insurance" office to ask questions. The admin ladies inform Dr. D of the trouble. This is the conversation as the admin lady relayed it to us.

Admin: We are having trouble with a patient's insurance information.
Dr. D: Tell me it isn't the last appointment of the day!
Admin: Actually, it is.
Dr. D: I don't care. I am seeing them. They have traveled too far. They are not going home without seeing me. I will do the appointment for free if need be.


Is that an awesome doctor or what?!

Dr. D explained that seeing him wasn't for us to find out anything new, but for us to get into his new office's system so that he could make a referral for Ryder and keep up with his care as needed. After the amazing treatment we received from the wonderful staff and Dr. D himself, I do believe we will be heading to Indy every year for Ryder's yearly appointment. I will forever thank God that he brought Dr. D into our lives.

Dr. D set us up with an appointment with Dr. T at Peyton Manning Children's Hospital. The appointment went really smoothly.

We really like Dr. T. He has seen many cases of PFAPA over the years and was able to explain to us that there is a 90% success rate, and that he had had a 100% success rate up until a few years ago. While the surgery did not take away the child's fevers completely, it did make them less intense. At this point, I will take either. Dr. T had an air of confidence, assurance, and knowledge of PFAPA that was really comforting.

Ryder is scheduled for surgery on April 14th. 

The Mommy in me is terrified and wants to go into the operating room to hold his hand even while he is under. The Daughter of God in me is reminding the Mommy that God is in control. I can trust him with my son...He did, after all, send His son to die for us and conquered sin for us. I have to trust God in whatever comes our way, otherwise, everything in this life is meaningless and overwhelmingly scary. 

So please say a prayer for Ryder, Michael, myself and Dr. T and his team. I will update again after his surgery. THEN, hopefully, I will be reporting in the near future that we have missed our first fever!

Thursday, April 2, 2015

Ryder's Battle with Fevers (Part 10)

Need to catch up? Part 1 - Part 2 - Part 3 - Part 4 - Part 5 - Part 6 - Part 7Part 8-Part 9

Ryder was acting off that Friday morning. I took his temperature and it wasn't at fever level yet, but it was higher than his normal temp. 

Michael's mom called and wanted to have Ryder come spend the night with her two hours away. I was hesitant. In my mommy heart, I knew that it wasn't a good idea. I still can't remember WHY in the world I agreed to it. Maybe it was the puppy dog eyes Michael gave me pleading his mother's case...maybe it was Ryder begging me to let him go see his Grammy and telling me that he felt fine...maybe it is that my mom has kept him through fevers before when I was out of town on business and then when I had Iyla...I don't know...I guess it doesn't matter because Ryder ended up going down in the early afternoon to Evansville. 

I gave Michael's mom strict instructions about what to watch for, how often to take his temperature and at what temperature he was to come home regardless of the time of night or day. As it turned out, my instincts were right and at 10:00 at night I was in my car heading to the rendezvous point over an hour away to pick up Ryder.

I am SO glad I got him back. This is the fever that changed everything.

Everything was "normal" for a fever on Friday night. Saturday he was sluggish, whiny and cuddly in the morning...which again, is normal for fever. The weather was nice, so he wanted to go outside. We have found that being outside usually really helps him feel better, so I agreed. When he came in for lunch, I was surprised at how red his cheeks were, so I took his temperature. 103.9! Ugh! So this was going to be a bad one. 

He was acting fine at this point, so all I could do is marvel at this incredibly strong and resilient little boy that is my son. If I had a fever that was bordering 104, I would be a whimpering mess. He was all smiles and happy to be playing outside. 

Ryder's fever bobbed up and down for the rest of the day, but that night was the night that changed everything. We had been painting the living room and were up late while Michael was finishing up edging in. 

Ryder wanted to be held non stop and his cheeks quickly became flaming red. I took his temperature. It was 105.1. Over the next twelve hours, he hit 105.4 and 105.1 again. He was MISERABLE. Tylenol and Ibuprofen are no help. We did everything we could to cool him down in other ways. Putting a cool, wet washcloth on his neck and head worked the best and kept him as comfortable as possible. 

That's when I knew we had to do something. Ryder couldn't keep enduring this. I couldn't watch it anymore. It is just too much. As much as I fear Ryder going under for surgery, I know that it isn't fair to let my fear keep him from having a chance at having a normal life. He has had a fever on every vacation he has ever been on! We are going to Disney this maybe, just maybe, we can be rid of these fevers, and he won't have to spend 3-5 days of his vacation fighting a fever and the aches that come with it. That is IF we could find someone to do a referral to a Pediatric ENT and get the surgery scheduled.

The problem was that Dr. D had moved to Indianapolis and Ryder hadn't seen another doctor since his last appointment with Dr. D. How do you get a referral to a specialist when you don't have a Dr? 

(To be continued...)

Wednesday, April 1, 2015

Ryder's Battle with Fevers (Part 9)

Need to catch up? Part 1 - Part 2 - Part 3 - Part 4 - Part 5 - Part 6 - Part 7- Part 8

So it has been a LONG time since I wrote about Ryder's fevers.

Life has been hectic. The fevers have become an almost normal part of our lives. Don't get me wrong...I HATE them with a firey passion, but when you deal with them every three weeks, it has become a part of our hectic routine. 

Something has changed recently, and I am still trying to sort out all my feelings, so it helps to write it out. So let me catch you up. 

We tried the steroids. 

The first time, Ryder gagged and threw up all over me. And I mean ALL over me. I was holding him in my lap when I gave it to him, and there was a puddle by the time he was through. (Praise God for wood floors in times like these!) I literally heard a huge splat when I stood up. Ryder was sobbing uncontrollably. He had never thrown up before and was scared. He was also covered in nasty milk puke. So I whisked him off to the bathroom, stripped him down and cleaned him up while trying to calm and reassure him. 

Next, I called the Dr. D's office and asked what they wanted me to do. I knew I was supposed to give it to him, but what do you do when it was immediately thrown up? They gave me instructions, which I followed. 

The second attempt was met with the same fate even though I mixed it in ice cream (per the Dr's office suggestion)...oh wow. I just made the connection. Ryder doesn't want anything to do with ice cream! I have always thought that was strange, but I guess I know why now! So anyway they prescribed me the same steroid, but with flavoring in it. 

The third attempt, while not pretty since Ryder was terrified of taking medicine at this point, was successful and his fever went away within a few hours. So that gave us the diagnosis of PFAPA. Our only options were steroids or having his tonsils and adenoids removed. Neither option really appealed to me. So...

We have lived since then with fevers every 2-4 weeks. Ryder has been a trooper. For a while, we thought he might be close to outgrowing them. We had a good run where they were getting closer to 4 weeks apart and were only reaching the 102's. It was great! 

Then a fever hit 6 weeks ago...
Google Analytics Alternative