In summary, Oliver's g-tube fell out, and we had an unexpected trip to Portland to get it replaced.
When I went to start Oliver's 2pm meal last Wednesday he was sleeping soundly. I unbundled him as usual so I could hook up his feeding tube only to find that his g-tube (the short tube that gives direct access to his stomach that was surgically placed last month) had come out! This was NOT supposed to happen, especially in the first 6-8 weeks after it was first put in. At that point we'll be trained to put it in ourselves, but until then the stoma (the opening in the skin and stomach where the tub in placed) is still healing and we were given instructions to head straight to the ER if it came out. So within about 15 minutes I had called for a dear friend to come sit with the girls, filled a bag with all of Oliver's necessities, and Oliver and I were headed out the door to the ER at Rogue Valley Medical Center (RVMC). Joel joined me there.
Unfortunately I'm not sure exactly when the tube fell out - it could have been anytime after 11 am when I fed him last and he fell asleep. By the time we got into a room and were seen by a doctor and the ostomy nurse it could have been out for as long as 4 hours, and a new stoma can start closing in as little as 20 minutes. They tried right away to fit the tube back in but were unsuccessful. We called up to OHSU (Portland) for instructions, and they were willing to talk the nurse and doctor through a procedure to dilate the opening, first using a smaller diameter catheter and then easing up to a larger one, but nurse said the hole looked fully closed and they did not want to try it. The surgery nurse at OHSU gave us instructions to head to Portland right away and check into the ER for the children's hospital when we arrived. The doctor and nurse at RVMC said we could feed him using a nasal feeding tube because the stoma looked closed, but OSHU recommended not feeding him in case they found they needed to do some procedure that required an empty stomach.
Praise God for our friends who could help us a such short notice! Elsa and Nora got to stay at home and a friend came over to stay the night with them and care for them the next day. We weren't sure how long we would be gone, but God has blessed us with such wonderful "family" here that we were confident that the girls (and cats!) would have been cared for.
We made good time on the highway and arrived in Portland 5 1/2 hours later. Even though he must have been hungry, Oliver slept the whole trip. We spend about half of the time driving praying together for our son. A g-tube is a simple matter in the medical world, but Oliver is not. We didn't know what the doctors would need to do to salvage his g-tube site, or if it even could be salvaged. We prayed that we would not have to make a decision about whether put him under anesthesia again for non-vital procedure considering what happened last time, and if we did have to make a decision that it would be very clear to us what to do. We knew we could have just gone back to using a nasal feeding tube - it would have been terribly inconvenient and annoying, but he'd still get fed and not have the risk of surgery. We also prayed that God would open the stoma so they could just put the g-tube back in and we could go home.
We checked into the ER at 10:30 pm, so his tube had been out for 9 to 12 hours by then. We were seen shortly by the pediatric surgeon. She first tried to put the original tube back in - it is a size 14. It didn't go in. Then she tried a slightly smaller, size 10 catheter, and it went it!!!!!!!! Alleluia! We then had to wait a while to have an x-ray done to confirm that the catheter was in the right place and that the original track had not become separated from his stomach. In the meantime five (or six? I lost count) futile attempts were made by three different nurses to give him an IV. They wanted to be able to give him fluids right away and overnight until the surgery team could do their evaluation since he hadn't eaten in 12 hours. But, since he had not eaten in 12 hours he was rather dehydrated and even more difficult to poke than usual. Thankfully the x-ray showed that the catheter tube was in the right place and the doctor working with us said we could start him on a slow drip feed for the rest of the night, so he was able to get away without an IV!
We got to our room by 2am, let the nurses start Oliver's meal, and went to sleep. We stopped his food in time for him to have an empty stomach by the time the nurses came to dilate his stoma to the correct size for his g-tube. They did it in two or three stages, but I don't know for sure because I had to leave the room. Oliver usually cries when he gets poked for labs and IVs, but this was definitely a different level of pain for him. We talked to the doctors about anesthesia before hand but there wasn't anything they could do locally that would help. It was a very short procedure, less than ten minutes, but I just couldn't listen to him and I was so tired I just had to leave.
We gave him one regular full meal and then were discharged by 5pm. We drove home, relieved our friend of babysitting duty by 11pm, and fell into bed. Joel had already planned to take the next day, Friday, off, and we spent the day playing with the girls and sleeping. Then on Saturday I had to take Oliver in to the pediatrician unexpectedly because of a concerning lab result, but thankfully we were able to reach the right doctor for consultation and Oliver's doing fine. I feel like I'm just finally starting to catch up from our sudden trip.
Aside from the adventure of his g-tube falling out, Oliver's tube feeds have been going very well. He still is eating only breast milk, and I've been slowly increasing his daytime meals and decreasing his nighttime drip feed. I figured that our girls had both slept through the night for several months by this age, so why not see if Oliver could "eat" all of his food during the day too. I do not do well on interrupted sleep, especially not for five months in a row, even though Joel and I take turns getting up to refill his milk and restart his pump.
Finally our goal has been reached! He now gets all his food during six "meals" during the day and none at night! This is a pretty big deal because usually tube fed babies cannot tolerate large meals (or bolus feeds) very well and do best on slow, overnight drips when they are sleeping, so we were told that we probably wouldn't be able to eliminate the night feeds.
Oliver has always "slept through the night," and now we'll finally get to! Whahoo!
This is Oliver watching his first "movie." Elsa entertained herself that afternoon making movies on our Flip camera and showing them to Oliver.
When I went to start Oliver's 2pm meal last Wednesday he was sleeping soundly. I unbundled him as usual so I could hook up his feeding tube only to find that his g-tube (the short tube that gives direct access to his stomach that was surgically placed last month) had come out! This was NOT supposed to happen, especially in the first 6-8 weeks after it was first put in. At that point we'll be trained to put it in ourselves, but until then the stoma (the opening in the skin and stomach where the tub in placed) is still healing and we were given instructions to head straight to the ER if it came out. So within about 15 minutes I had called for a dear friend to come sit with the girls, filled a bag with all of Oliver's necessities, and Oliver and I were headed out the door to the ER at Rogue Valley Medical Center (RVMC). Joel joined me there.
Unfortunately I'm not sure exactly when the tube fell out - it could have been anytime after 11 am when I fed him last and he fell asleep. By the time we got into a room and were seen by a doctor and the ostomy nurse it could have been out for as long as 4 hours, and a new stoma can start closing in as little as 20 minutes. They tried right away to fit the tube back in but were unsuccessful. We called up to OHSU (Portland) for instructions, and they were willing to talk the nurse and doctor through a procedure to dilate the opening, first using a smaller diameter catheter and then easing up to a larger one, but nurse said the hole looked fully closed and they did not want to try it. The surgery nurse at OHSU gave us instructions to head to Portland right away and check into the ER for the children's hospital when we arrived. The doctor and nurse at RVMC said we could feed him using a nasal feeding tube because the stoma looked closed, but OSHU recommended not feeding him in case they found they needed to do some procedure that required an empty stomach.
Praise God for our friends who could help us a such short notice! Elsa and Nora got to stay at home and a friend came over to stay the night with them and care for them the next day. We weren't sure how long we would be gone, but God has blessed us with such wonderful "family" here that we were confident that the girls (and cats!) would have been cared for.
We made good time on the highway and arrived in Portland 5 1/2 hours later. Even though he must have been hungry, Oliver slept the whole trip. We spend about half of the time driving praying together for our son. A g-tube is a simple matter in the medical world, but Oliver is not. We didn't know what the doctors would need to do to salvage his g-tube site, or if it even could be salvaged. We prayed that we would not have to make a decision about whether put him under anesthesia again for non-vital procedure considering what happened last time, and if we did have to make a decision that it would be very clear to us what to do. We knew we could have just gone back to using a nasal feeding tube - it would have been terribly inconvenient and annoying, but he'd still get fed and not have the risk of surgery. We also prayed that God would open the stoma so they could just put the g-tube back in and we could go home.
We checked into the ER at 10:30 pm, so his tube had been out for 9 to 12 hours by then. We were seen shortly by the pediatric surgeon. She first tried to put the original tube back in - it is a size 14. It didn't go in. Then she tried a slightly smaller, size 10 catheter, and it went it!!!!!!!! Alleluia! We then had to wait a while to have an x-ray done to confirm that the catheter was in the right place and that the original track had not become separated from his stomach. In the meantime five (or six? I lost count) futile attempts were made by three different nurses to give him an IV. They wanted to be able to give him fluids right away and overnight until the surgery team could do their evaluation since he hadn't eaten in 12 hours. But, since he had not eaten in 12 hours he was rather dehydrated and even more difficult to poke than usual. Thankfully the x-ray showed that the catheter tube was in the right place and the doctor working with us said we could start him on a slow drip feed for the rest of the night, so he was able to get away without an IV!
We got to our room by 2am, let the nurses start Oliver's meal, and went to sleep. We stopped his food in time for him to have an empty stomach by the time the nurses came to dilate his stoma to the correct size for his g-tube. They did it in two or three stages, but I don't know for sure because I had to leave the room. Oliver usually cries when he gets poked for labs and IVs, but this was definitely a different level of pain for him. We talked to the doctors about anesthesia before hand but there wasn't anything they could do locally that would help. It was a very short procedure, less than ten minutes, but I just couldn't listen to him and I was so tired I just had to leave.
We gave him one regular full meal and then were discharged by 5pm. We drove home, relieved our friend of babysitting duty by 11pm, and fell into bed. Joel had already planned to take the next day, Friday, off, and we spent the day playing with the girls and sleeping. Then on Saturday I had to take Oliver in to the pediatrician unexpectedly because of a concerning lab result, but thankfully we were able to reach the right doctor for consultation and Oliver's doing fine. I feel like I'm just finally starting to catch up from our sudden trip.
Aside from the adventure of his g-tube falling out, Oliver's tube feeds have been going very well. He still is eating only breast milk, and I've been slowly increasing his daytime meals and decreasing his nighttime drip feed. I figured that our girls had both slept through the night for several months by this age, so why not see if Oliver could "eat" all of his food during the day too. I do not do well on interrupted sleep, especially not for five months in a row, even though Joel and I take turns getting up to refill his milk and restart his pump.
Finally our goal has been reached! He now gets all his food during six "meals" during the day and none at night! This is a pretty big deal because usually tube fed babies cannot tolerate large meals (or bolus feeds) very well and do best on slow, overnight drips when they are sleeping, so we were told that we probably wouldn't be able to eliminate the night feeds.
Oliver has always "slept through the night," and now we'll finally get to! Whahoo!
This is Oliver watching his first "movie." Elsa entertained herself that afternoon making movies on our Flip camera and showing them to Oliver.
I'm so sorry that you had to rush back up to Portland to deal with all of this, but what a blessing that DCH was able to help little Oliver and get you home quickly. We're thinking of you guys.
ReplyDeleteSo glad his g-tube is fine now.
ReplyDeleteIsn't sleep wonderful! :)
That is too cute...watching a movie Elsa made.