This has been one crazy week!
For those who heard that there was a tornado in Louisville, not to worry, we are no longer in Louisville. The brunt of it hit 20 miles away. It hit Tuesday night and last night there were still 15,000 people who did not have electricity.
Our crazy week actually started more than a week ago on Saturday the 19th. Dawn woke up with a sore back and as the day went on it got worse. Needless to say, we didn’t do too much that day, but worse than that, by Sunday she couldn’t move. She spent the weekend relaxing and taking it easy and by the end of Sunday she was feeling a little better. It went away in another day or two and she is doing much better now. This was just the beginning of our eventful week.
On Tuesday we finally had our long awaited appointment with the nutritionist and things went well. I had arranged it so that I would be feeding Emily at the time she came. It was a great plan and she was able to see that at the beginning of the feeding, Emily began to fuss and this continued throughout the feeding. She was able to come up with some solutions to try and put things in the works for us to get a pump that will feed her slowly and gradually through the night instead of getting three feedings with several ounces at once. We are to give her a greater amount of food during the night and we can give her smaller portions during the day, making it easier to digest.
It seems that whenever we change something in Emily’s diet, she improves for a day, and then it gets worse again. The pump was no exception. But I will get back to that in a minute because we didn’t get the pump until Saturday.
On Thursday, I fed her at 9:00 am as usual and everything went well. I put her on her tummy for “Tummy time” and she actually stayed there for quite a while before she got uncomfortable. The real problem didn’t occur until it was time for the 1:00 pm feeding. I got her food ready and went to insert the tube when I realized it wasn’t there. At first this confused me before I realized it had fallen out. For the past week I had been saying that I needed to check the level of fluid in the balloon that holds it in place, but I never got to it. Well, as you probably guessed by now, the balloon shrunk enough that it was not able to stay in for tummy time.
It must have fallen out closer to 10:00 than 1:00 because I couldn’t see the hole that the tube goes into because it had closed over. This automatically meant a trip to the Emergency Room. I won’t go into all the details of the ER because I could write a book on that one day! I will just say that the last time we were there they spent an hour and a half trying to get an IV in, and Emily did not enjoy it AT ALL. I told them when I got there that she was NOT getting an IV under any circumstance and after three and a half hours of waiting they informed me the surgeon would not be out for another hour and Emily would need an IV so she didn’t dehydrate. I lost it and fought hard for my little girl. I won and after a total of 4.5 hours we left the hospital vowing never to return for a G-tube replacement. I watched closely so I could do it next time it falls out.
It was a very long and stressful day and I was looking forward to a good nights sleep. What I didn’t realize is that I was going to wake up in at 4:30 in the morning doubled over in pain. I got up to go to the bathroom and when I got back into bed, I couldn’t lie down. Dawn was asking me what was wrong, but I was in so much pain that I couldn’t reply. Not long after that, I ran to the bathroom and tossed my cookies; as I did three more times in the next fifteen minutes. Needless to say, we went to the ER and got me some serious drugs as quickly as we could. I had a kidney stone! If you have never had one…trust me, you don’t want one. If you have had one, you know what I mean. So I pretty much spent Friday in bed, although I did have to run some errands in the afternoon. I was told in the ER that the stone had moved past the painful point and it should remove itself within a day or so. I will just say that it did pass and the drugs worked wonders!
Saturday was a new day and it started off with a men’s breakfast at my church that I was running. It was planned for my Sunday school class and there were a total of six of us there. As usual, I made too much food. I blame my mom for that. She taught me it is better to have too much than not enough. After our meal, we had a good chat and I look forward to doing it on a regular basis.
Upon arriving home, my wife informed me that we had an appointment at the Pediatrician in an hour. We had changed Emily’s formula three times in two weeks trying to find a more digestible solution and in the process she had gotten a good case of diarrhea which caused a diaper rash that had gotten pretty nasty looking. So, here we are again in the doctor’s office…three times in three days! The solution was a very expensive ointment and some “butt paste.” Changing her diaper became a long drawn out task. This came back to haunt us on Sunday morning, but I’ll get to that later.
After the Dr’s visit, we had a gentleman come over and deliver the feeding pump and give us some instructions on how to use it. Instead of getting three feedings at 9 pm, 1 am and 5 am, she will get one continuous feeding of 400 cc’s at 40 cc’s an hour for ten hours. She will then get three other feeding of 90 cc’s throughout the day. She was getting 110 cc’s six times a day. This meant that we could sleep through the night and not have to get up to feed her. I was doing the 1 am feeding and Dawn was doing the 5 am feeding. Finally, all three of us could sleep through the night…ideally.
As per usual, the first 24 hours went well. She slept through the night and the food went in with no problems. We woke her up at around 9:30 and planned on going to church at 10:30. I changed her diaper and it was empty, but I wanted to reapply the creams. As I went through the long process of wiping, applying one lotion and then the other, she peed. I started over and so did she. SIX diapers later she was finally changed and the lotions were applied!
We vowed that we would do everything in our power to avoid Dr’s for at least one day and enjoyed the rest of our day.
Sunday night we put Emily to bed and set up the pump to go through the night. It resembles an IV stand that you see in the hospital and has clamps at various points to stop the flow if needed. I filled the bag and set up the pump and went back to watch TV for an hour. She was a little fussy about fifteen minutes later, but we let her cry it out. It didn’t take long for her to stop so we didn’t think anything about it…until we went to bed. I was lying in bed and looking at the tube in the dark. Something looked wrong. When Dawn came to bed, I asked her to check it. I had neglected to release one of the clamps and a valve had popped and spilled formula into a puddle all over Emily. She was sleeping nicely in a puddle of formula. In the process of changing her sheet, mattress cover and her clothes, she woke up! So much fun!!! It was a long night for all of us.
Her feeding on Monday became a struggle again; so the saga continues. At the meeting with the nutritionist on Tuesday, she mentioned going to a GI doctor. At the pediatrician on Saturday, we asked her about it and she set up an appointment for this Wednesday. But on to Tuesday first…
Tuesday was a big day for us because we finally got our meeting with all the therapists and made a schedule for Emily’s visits. They will all be calling me within a few days and setting up appointments. We know that tomorrow the PT starts and we will meet with the nutritionist in a month, although we are still in constant contact with her. Emily will have her eyes checked once a month and her speech therapy will come once a week to work on her mouth feeding. It is finally all coming together…two months later.
Yesterday I met with the GI doctor. We had a huge storm here on Tuesday night and the doctor’s office didn’t have power. Fortunately, there were many windows and the doctor didn’t need any instruments that required electricity. She asked a lot of questions and scheduled an appointment at Kosair Children’s Hospital for an Upper GI. This will take place next Thursday and hopefully give us a better picture of what is going on in her tummy.
Through all this I have been going back and forth with a marketing person putting together a brochure for my summer camp that I am planning. I have rejected about ten different logos, but finally agreed on one. We go to print today and I will get some of them tomorrow. There is a conference at Southern Seminary this weekend and I am supposed to have a booth there to start my marketing. God willing, all will go well and I will get some reservations. I have put together a website and soon I will have all the kinks worked out of it. My time has been so full between the camp and taking care of Emily that I have not had time to look for a job, which is what I really want to do. God’s timing is not my timing and I trust that all things will work out in the end. I am where I need to be for now and when things calm down here, He will open an opportunity that will be perfect for me.
I have rambled WAAYY too long! Just know that although things here are very hectic, we are still praising God for all He is doing in our lives. He is in control and we are just His humble servants willing to do whatever He wants and go wherever He leads. He wants us right here for now, and we accept that.
We love you all and look forward to hearing about how things are going in your lives.
All for HIS glory,