Pulmonology Appointment and G-tube Mishaps

On Friday, April 17, Caden had an appointment with a pediatric pulmonologist. He asked me a bunch of questions and did an exam as well. Overall he said he thought Caden looked really good which is always reassuring. He wanted us to count his respirations when he is sleeping a couple times a week. He wants the respirations to be less than 50/minute. There is NO way they will be that low. I counted them twice already this week so far and they were 90 and 86! He wants me to track it and call him if it remains consistently high. I'm not sure what he's going to do about it. But I will call him after I've documented it for a couple weeks.

Then, on Saturday, April 18, the g-tube came out again. It had only been eight days since I had replaced it and had the contrast study done to confirm placement! I was so exasperated about it. This time, however, I just put the new one in and didn't take him in to have a study done. I felt very confident that it was in the right place. However, I did have to call our home medical supply company and ask them to send me more replacements for the g-tube. I asked them to send me two of them just in case we had a similar problem with them coming out so quickly. I also talked to them about whether or not they thought they were defective or what the problem was. They really couldn't say either way. But they recommended checking the fluid level in the balloon a couple times/week just to monitor whether it was leaking or not. So during the next week, I checked the fluid several times and every time it looked like it had the same 5 mls that it should have. So I thought we were doing okay...

Wishful thinking! On Tuesday, April 21, I got Caden up at 7 am and went to change his diaper before starting his feeding. When I pulled up his onesie, I discovered the g-tube had come out. I don't know what time it came out, but it was sometime between 4:30 and 7 am. But I could tell by looking at it that it was starting to close up and I didn't think I would be able to get the replacement in. Unfortunately I was correct. I couldn't get the tube in because the hole had closed too much. So I called our pediatrician and asked him what he wanted me to do. He said I should take him to the ER and have them try to get it back in because the longer it is out, the harder it is to get something back in. And, the worst case scenario would be the hole would close completely and he would have to have another surgery to get it put back in.

He wanted us to go to Sutter Memorial Hospital downtown just in case we needed the pediatric surgeons to get involved. So, by now, it is 7:45 and traffic is terrible, but I took Caden to the ER there. Thankfully Greg hadn't left for work yet by the time I had to leave. So he was able to stay home with Kyler for a few hours in the morning. Of course you never know how long things are going to take at the ER.

When I got to the ER, they were able to see us pretty quickly which was good. The doctor tried to get the g-tube in without success. So he put in a foley catheter. Once it was placed, they called x-ray down to do a contrast study to make sure it was placed correctly before I could feed him. It ended up being after 10 am before I could feed him so he had already missed one feeding. I had to get the nurse's help in order to know how to use the foley to do the gravity feeding. Caden had been really fussy all morning and when I started the feeding, I could only get about half of it in before he really started screaming. It was good I tried to do it there, because we realized after we stopped the feeding that the plug for the foley wouldn't stay in. It just kept popping out. So, the nurse came up with another solution for us. Thankfully we are still able to use the feeding pump at home. But we have to use different syringes for medications. It makes everything a little bit more complicated. I didn't realize how easy we had it with the g-tube. Now that we have the foley, I realize how convenient it was before!

Because we weren't sure how long we were going to be at the ER, we needed help with Kyler because Greg had to get to work. We are so lucky to have such good friends! Greg was able to drop Kyler off at a friend's house on his way into work and they kept him there until I could go pick him up later that day. So awesome!

Also, when I left the hospital, I took Caden straight to the pediatrician's office because he had an appointment to get his last synagis shot for RSV. It was just a really stressful day for me.

Greg and I had already arranged with one of the pastors from our church and his wife to watch our boys that night so we could go out on a date. I almost canceled because I wasn't sure how it was all going to work out. But Greg reminded me how much more we actually needed that time away. So we ended up going out as planned. We were able to have a nice dinner, go on a short walk and have a wonderful dessert together. It was so nice and relaxing!

So, today is a new day. It feels like my to-do list is never-ending. The long list of appointments I have to make for Caden grows every day. It's amazing how many specialists and therapists he has to see! Of course, it's all for his benefit and development so I am happy about it. But it's crazy to coordinate it all! Our next appointment is with the pediatric gastrointerologist this Friday. Then, next Wednesday we see the pediatric surgeon to hopefully get the g-tube put back in and get rid of the foley catheter!

The excitement never ends around here! I wish it would though... Please pray that the foley doesn't come out during the next week. I don't want to deal with another trip to the ER!

Here's a couple photos of Kyler loving on Caden. We're so glad he loves his brother!