I know many of you know that K was in the ER on Wednesday and again on Thursday and was then admitted, but many of you are probably wondering what actually happened and why she is still struggling. Hopefully, this will help explain a bit…if you can slog through it all. 😛
Tuesday, she saw her new motility specialist. He ordered some changes, one of which was a GJ tube placement. It was scheduled for the following Tuesday, but her current g-tube just could not wait that long and it up and broke on us Wednesday afternoon. Because K’s g-button was a Bard, it is not a type we can replace at home, so I called Dr. C’s clinic to see what we should do and the nurse said to go to the ER and see if IR could get her in to go ahead and place the GJ. Thankfully the ER was pretty empty and we got a bed pretty quick, but by the time the doc actually rounded on us, IR was closed. He did manage to get us a slot for 2pm Thursday and we fixed her tube well enough to start a feed (though we had to keep an extension in all all times or her stomach contents would come rushing out) and we headed home.
On the ride home, K started to complain of being “too full” and looked pretty green in the backseat, so when we got home, I hooked her up to a Farrell bag (a bag that allows stomach contents to drain) and basically all of the formula came out. Fast. She had been fasting most of the day because of the broken tube (and she hadn’t gotten all of her feed that morning at science camp because she had shut it off because she was annoyed by the error beeps), so we were really already behind the eight ball, but she was not feeling right and we couldn’t push it. I had to leave her hooked up to continue venting and she went to sleep. Not long after that, she woke up and vomited. She slept for a while and then vomited again early Thursday morning. She also had a fever of 101.7. I gave Zofran and tried to give some clears by tube, but she couldn’t tolerate it. She peed and was spilling a large amount of ketones (one of her red flags) and was very lethargic, so we went to the ER. It was so different compared to the day before. Poor kid could not even hold her head up in her wheelchair. It was sad. I gave them our protocol letter in triage and from that point, they worked fast.
As soon as we were in a room, the attending came to check on her, followed by a resident, two nurses, someone from Child Life, and 2 students who were observing. Our tiny room was PACKED. They tried to start an IV, but K was super upset and struggling and it blew before it was ever placed. She kept screaming, “I surrender! Why are you still hurting me?!” So they made a second attempt and got the IV placed, but it wouldn’t give any blood…so they had to stick her a third time to get blood for her urgent labs. It was veeeeery unpleasant. They got her hooked up to her oxygen and left us to rest once her fluids were running. It was QUIET in that room. Too quiet for a room that contained K! She basically slept for hours and woke up when someone from IR came to get her to place her new tube. I was SO nervous about how she would do with her tube placement as being awake for it is a first for her, but evidently she handled it like a champ. The hardest part was pulling out her old tube, but she found the rest (watching the placement in her intestines via the fluoroscope) very cool. They came out laughing and telling me she was so funny and that she mentioned she has a husband with a GJ tube, too. Of course, she did! She mentions him just about anytime she can work it into a conversation.
We went back to our ER room and after a bit the resident had us trial G-feeds with clears. No go. Then she had us trial G-feeds at half that rate. Still no go. And again at half THAT rate. Still no go. So then we tried J-feeds, very slowly. Success! We worked up to her goal rate on clears without too much fuss. There was a lot of back and forth because the ER felt she should be kept for observation and GI did NOT want to admit. Finally, after MIDNIGHT, GI decided to admit us to be sure we could get her to her goal rate with formula (thank goodness they did, or we’d have bounced right back in the morning). Our good friends J and Laura came up to the hospital at about 8pm to keep us company (and bring me delicious gluten-free food for dinner) and stayed until after 1 when the docs finally talked about getting us to a room. It was after 2am before we were settled in.
Friday we basically attempted to work up to goal rates of formula unsuccessfully. We’d make a little progress, then there would be pain and vomiting. She was still needing to drain out her G and dumping a lot of bile. For some reason that still does not make sense to me, they took her off IV fluids. My parents came up in the early afternoon so I could go have lunch, then Josh came by later in the afternoon. That evening J and Laura came back up and we had a pretty nice evening (and more yummy food) while playing games on the tablets together.
She also got to talk to her “husband” on the phone that night. And man, did she ever TALK. I don’t know if he got more than a word or two in! She told him, “If you come visit tomorrow, you can touch my bile bag…it’s not off limits!” They are so cute together. and it is so nice that they have a friend who really understands the atypical parts of their lives.
I was awakened EARLY Saturday morning with the undeniable urge to run to the bathroom and revisit what was left of my dinner from the night before. YUCK. Whatever virus had started all of this for K, it had hit me, too. I called Josh and asked him to PLEASE bring me the Zofran as soon as humanly possible and hero that he is, he was there within the hour. I would not have made it through without that Zofran. Even with it, I was still getting sick here and there, but it was manageable at least. The boys spent most of the day visiting once they were done with their boy scout car wash. It was good to have extra help while I was feeling so yuck. Man, I hate puking and I HATE fevers. No fun at all. We had the best nurse that day and she got them to restart fluids (that never should have been stopped) because K was not peeing anymore, called vascular to place a new IV when K’s blew, and got her a Project Linus blanket to make up for her ouchies. She was the only person on the floor that seemed to have K’s best interests in mind. It was a very up and down day overall. Oh, and she was dumping PURPLE bile out of her G, which stumped the docs, but not enough for them to actually look into it. OF COURSE! So if anyone knows anything about purple bile, I’d love to know. She has been NPO for days, so it was not from meds or popsicles or anything like that.
Sunday morning we were up to goal rates, but she woke up vomiting in spite of the Zofran. After that, she went back to sleep for a while…
She was still not doing well, but they were okay with discharging us and I didn’t feel like she was getting what she needed from them anyway (they were not doing IV fluids or trying to figure out why she kept vomiting and having pain), so we left that afternoon with plans to bounce back to our main hospital if needed. (The one we were at is not her main hospital, but because that is where the tube placement was ordered, that is where we ended up. It can be tough to straddle 2 hospital systems at times!) Things sort of improved at home, though we’ve been having our share of issues even here. We almost had to go back to the ER yesterday because she didn’t produce urine for almost 24 hours. I’m so hoping we can manage the rest of this at home and she will be back to her normal self soon! Our best guess for WHY this happened, is that the GI bug triggered the majority of her GI tract to just shut down on her…now the power is back on, but the lights are still flickering. Hopefully she will be back to full power soon!
In all of this I have been so thankful for the support we received from family and friends, in Facebook messages and texts and in-person visits…and especially for the advice I’ve gotten from friends who have been there, done that with their own kids (Melody!) because the doctors just seem to have NO idea what to do or say to get us through this rough patch. K (and us by extension) has a wonderful little community of support and we appreciate every bit of it! 🙂
June 19, 2013 at 8:28 pm
Oh sweet Katie. I am so sorry she had such a rough week and was so miserable. But- I am thrilled that the tube change wasn’t traumatic- I know that’s such a relief for you. I really hope having the J will make a huge difference for her and quality of life. Hugs to you and your girl- prayers for continued healing this week!
June 20, 2013 at 6:38 am
r.e. purple bile – porphyria is a group of genetic diseases associated with purple pigment in the urine and faeces. Since much of the colour in faeces comes form the bile, it is possible that these patients have purple bile. Given K’s complex metabolic issues, porphyria (a genetic disease) is probably not the issue, but porphyrin/haemoglobin metabolism might be a starting point for investigation.
(I’ve been reading your blog for a few years now, and never felt that I had something to add until now….)
June 20, 2013 at 9:45 am
Wow, thanks! That is interesting. It is really difficult to find any information about purple bile or possible causes for it. I snapped a pic of the drain bag with the purple stuff in there, so I’ll go over it with her docs in our next round of appointments and ask them if that could factor in somehow.
June 21, 2013 at 1:09 pm
Dear Kyla, Katie and family, I have just been reading about the difficulties you all have endured this past week – and wonder how you find the strength to fight this battle day after day after day. When God sent Katie to sojourn for a time on earth, He must have consulted with all of His wise friends: Elijah, Paul, Daniel, Isaiah – to decide upon the BEST parents for her. And they all agreed – it will be that cute couple down in Texas: Josh and Kyla! Remember, dear ones, that to nourish children and raise them against odds is in any time, any place, more valuable than to fix bolts in cars or design nuclear weapons.
From Aunt Jeri
June 22, 2013 at 7:26 pm
My daughter was also in the hospital recently. She wasn’t tolerating her feeds after getting strep. Did your daughter get the amt g-jet? My daughter has the mic-key g-j and has had it for 3 1/2 years.
June 22, 2013 at 10:42 pm
Yes, she did end up with the G-Jet. We hemmed and hawed over which to go with, but in the end it was done so quickly and urgently that the people in IR decided for us! I plan to do a post about it soon, but we like it so far. The ONLY issue is that we can’t give meds with a syringe via her G anymore! They size the ports differently for the G and J to keep errors with feeding into the wrong port to a minimum, but the down side is no more easy med doses via the G. We are also getting used to the locking extensions as she had a Bard before so it is a whole new world in that respect!