Once Again, He Is My Hideaway

Back in 2005, when I was pregnant with Noly and scared to death I was going to miscarry my 8th child, I could often be found balling my eyes out. There was one song that brought me great comfort, and I remember driving home from Music Rehearsal one night just weeping. I played the song on the car stereo and had to crank it up and put my leg against the speaker so I could not only hear the song, but also feel the song. Maybe I felt like I needed her to feel the peace of the vibrations. The song was "Sacred Hideaway" by Marty Magehee. I played it over and over until God's peace permeated me. I played it until my heart no longer felt overwhelmed.

Now, I am a person who updates my Facebook status around 2-3 times a day, but since Jule's surgery on Tuesday, I had not updated...until today. This last croup incident left me feeling so utterly helpless, and getting the news that it can happen over and over and over again made my heart feel so overwhelmed. I have felt like my heart has been silent. I had nothing to say...though I played with my kids as I normally would, talked to people at work like I normally would, talked to others around me and pretty much acted normal. But that doesn't mean my heart was normal. My heart was screaming out, "Why can't somebody fix my child!?" In the times I was alone, there were no words...just silence. Then today, as I was driving to church to look at a keyboard for tomorrow's services, I got a picture in my head of 4 Him's CD, "The Message." It's black with white writing all over it. I pulled it out and put it in, and suddenly I remembered...Number 9, "Sacred Hideaway!" I played it, and I played it, and I played it until my heart felt it. "There's a shadow I can't see from a holy canopy that my Father spread for me. When I'm strong or when I'm weak, when I wake or when I sleep. He is watching over me." I felt my silent, overwhelmed heart break into peace, and I finally cried. I felt the weight of the night we rushed to the ER, and I cried. I felt the pain that my very being felt when we got the news of what was found during surgery, and I cried. And I once again felt the Hand that brought my baby girl to me when no other baby had survived in my body, and I cried.

God is with us, and God has Jule covered in His canopy. I can do this if we have to rush to the ER over and over. I can withstand this when I'm underneath His wings. It's not easy, but I have done it, and God will continue to give me what I need to do this. I have to give Jule to Him continually just as I had to give Noly to Him continually when she was inside my belly. His grasp is sure, His grip is firm, and His coverage is complete.

Surgery Results

Jule's surgery went well Tuesday, other than being 3 hours later than scheduled because the surgery before his had some complications. He went into the OR very drunk of Versed, so he didn't cry for us. He did cry some when he woke up, but he did a lot better than in the past.

The ENT found a very minor subglottic stenosis. It does not need to be operated on, but it can aggravate the area allowing croup to develop more easily. My understanding is that it is something that will always be there; but his airway will grow as he grows, so the croup should go away as he grows.

We are thrilled that he does not need surgery, and we also feel helpless because we can't do anything to stop the croup from happening again. I'm feeling very silent becasue I just have to let it all sink in. Do I prepare myself for more trips to the ER? Will he grow out of it next week? I need some time to pray about it all.

More Surgery

We went to our ENT today. Jule was pretty hesitant since he had just been in the ER, and the ENT is located in the hospital. Overall, he did very well though. The ENT was very informative, and he said the number of croup episodes is definitely not normal. It would be normal for a child to have 1 to 2 croup episodes in their life. Some may have a little more, but nothing near what Jule has had. He has had 4 ambulance rides, several visits to the Ped's office, and many more where the steamy bathroom and a breathing treatment did the trick.

So, he suggested that we do an exploratory surgery of Jule's upper airway. He said there are many things that could be wrong that would cause recurring croup. Some are fixable, and some are not. But at least we would know what we are dealing with even if it is not fixable. OR Jule may just be very unlucky. The fact that he has been intubated 3 times makes him suspicious that something may not be right in Jule's airway. The surgery only takes around 8 minutes and will not require intubation. Yay! This particular ENT did both sets of Noly's tubes and Jule's first set. It is with the hospital I work with, so it will not cost us a lot of money. God is providing in ways that make me feel very peaceful about our decision. I really pray that they find something fixable so that Jule does not have to go through this over and over, but I am ok with the possibility that they may find nothing or find something they cannot fix.

I'm so exhausted that I fear I am not making any sense :) Right now, I am having about 2 migraines a week, but they are not keeping me in bed. I'm having a lot of side effects from the preventive, so I don't think I can up it any more. My sugar is dropping like crazy very often, which can be a huge problem. So, I may need to go off of it. I just have to get Jule through the surgery, then I can deal with my med change. Noly is my little bright light. She let Jule play in her room (normally off limits) because he was sick, and she has been so sweet and helpful with him, even wiping his runny nose! I'm so thankful for her kind, compassionate heart, and I can appreciate her zeal for trying to get him into a Princess dress. I do not think that one is going to happen though. Good night!

Our Daily Bread

The past two days have been a bad whirlwind. Yesterday, Jule was coughing so hard that he was dry heaving and retching. I called the nurse, and she said to give him breathing treatments of Albuterol, 4 hours apart. I was fine with that because, after all, he didn't sounds croupy at all. We did two treatments, and they seemed to help slow his cough down a little. We put him to bed around 9:30, and he fell asleep right away.

Kevin and I got ready for bed, and Kevin was asleep when "it" happened yet again. It was around 11:30. Jule woke up AGAIN with severe croup. Kevin ran in to get him, and I ran into the bathroom and started the shower as hot as possible. We took him in there, but it wasn't steamy enough yet, and he was not doing well at all. He was struggling to breathe, croupy coughing, retching, letting out as much of a cry as he could...over and over. We ran him downstairs to put his head in the freezer, and we just could not get him close enough to the cold. I was having to hold a bowl under him while he tried to catch his breath and stop dry heaving. It.was.horrible :(

Kevin called 911 during this, and we ran back up to the bathroom, which was now very steamy. I sat on the toilet seat and rocked him while Kevin waited for the ambulance. I was able to calm him enough in the bathroom to get him to stop retching, and he would cough off and on, but he still had a lot of strider when he was breathing. Thankfully, the fire truck arrived in minutes, and we had four very helpful firemen in our bathroom (which freaked Jule out more). By the time I was dressed for the ER, the ambulance was here, and off we went.

Thankfully, our neighbor heard the fire truck and ambulance and offered to help with Noly. Kev took Noly next door to have a sleepover with her little 6-year-old friend, and then he was able to come down to the ER to be with us. They treated him with steroids, and we were home by 2:30.

He seemed to sleep peacefully through the night, but he could not stop coughing when he woke up. It wasn't croupy, but very forceful and still causing gagging. We got in with a Pediatrician at noon today, and we have an ENT appointment with the ENT we love tomorrow to try to see if he can find out why this keeps happening (4x in 4 months).

As I sat in my dining room eating a sub for lunch while Jule played, I prayed, "Give me this day my daily bread." I looked down, and literally, I was eating bread. But that wasn't what the prayer meant to me. He is the Bread of Life, and from Him comes all I need. I need Him to give me, each day, what I need. The "food" that comes from Him brings life, and I can't live day-to-day without that in my life. I NEED Him. I need Him to help me get through all of this. It is so hard watching my child suffer. It is so hard watching him struggle for breath. I hate it. And it happens over and over and over, and we don't really know why. The ER staff acted like this was crazy frequent. Please pray with us that God will give the Doctors wisdom to find what is causing this, that God will touch and heal Jule's body, and that God will give us peace in the meantime. We are praying for much-needed sleep for all tonight.

Noly

Today, I got a phone call from the kids' school. They said that Jule did not have his "pretty" (blankey) and that he was screaming. I quickly realized that his sweet pretty was at home in the dryer. I told her I could come get him and take him home with me to get it and bring him back with it (making me miss at least an hour of work), but then I had an idea...I asked her to go get Noly's "geeky" (blankey) to see if he would accept it. She said she would try and call me back. I got the most wonderful call back. She said that she went to Noly's building and explained to her that Jule's pretty was at home and that he was very upset. She asked Noly if Jule could use her geeky so that he would not be so upset. She said Noly's eyes lit up, and she ran to her backpack to get her blanket for Jule. She took delight in giving up something she had so that he could be comforted. This from the little girl who told me a few days ago that she wished she never had a little brother because he always cracked her up (drove her nuts). I am so proud of her very willing sacrifice! Jule accepted "sissy's pretty" and quieted right down. So many times, it is hard to have a good attitude and give willingly when God asks us to give, especially when He asks us to give something precious to us to someone we may not necessarily enjoy being around :) I was reminded of II Corinthians 9:7 "Each of you should give what you have decided in your heart to give, not reluctantly or under compulsion, for God loves a cheerful giver." I am so proud of her cheerful giving, and I will surely be telling her that when I pick her up today! I pray that I think about her example the next time God asks me to give something, and I pray I am as cheerful of a giver as she is. Healthwise, we have had some better days! We had another croup episode with Jule last week where he struggled with his breathing for several days, but we did not have to take him to the ER. My migraines are off and on right now, and I'm focusing on thoroughly enjoying the pain-free days that I have. I go back to the Neurologist in May, and I'm not really sure whether the preventive is actually working or not. I guess I'll have to see what he thinks. I am also going to a Chiropractor next week to discuss whether or not he may be able to help. Over the weekend, we got to take the kids to the Children's Museum! This was a big deal to me because we have been too sick to go for such a long time. The kids had a wonderful time, and so did Kevin and I. We love to see them playing happily and experiencing new things with other children! I'm praying for better, healthier days is the future. How wonderful it is to be able to leave the house and have fun! Thanks be to God!