Yesterday Brent spent ALL day at home waiting on oxygen. Brent works from home on Wednesdays to wait for oxygen to be delivered. It is supposed to be delivered between 1-4 but in the last month they have not been delivered in that time frame once. Its rather common that they come whatever time they please, which is why we have to have someone here all day and the girls have therapy on Wednesday. However yesterday pushed that to a new level. The girls and I ran some errands after therapy and were planning on taking our time coming home because Brent was planning on going to church to work on sound stuff after he was done working but instead I got a text from him at 4:30 that oxygen still had not come so he called them and I headed home. By the time we got home he decided to just head to church a different night and we waited and waited for oxygen. They finally showed up at 7:20pm! Three weeks ago they showed up at 10am, two weeks ago they showed up at 9 am, last week they showed up at 5:20pm and then this week... this is worse then waiting for the cable guy... and its weekly! And people wonder why it is hard for families with traditional jobs and special needs to hold their jobs...
This morning I woke up and realized I never heard back about a blood test Jilli had last week. Her CBC was off in June when we had it run (one of her old lead level tests had been recalled because they found out the machine wasn't working right so we needed to redo that so while Lydi was in for her 2yr check up we just ran bloodwork on them both) so they asked us to come back in a month and have Jilli's done again so we went last Friday to get it done. It was one of the harder blood draws that Jilli has had in a while because they did a finger prick instead of a vain draw. Jilli hates finger pricks... they hurt having them squeeze your finger for several minutes to get enough blood to fill a vile and to her a vain draw is normal and she sits nice for them but finger pricks are odd for her so she was not happy at all. The person was looking at me like all kids throw fits like that for blood draws but what they don't get is that for vain draws she sits nice, hands them her arm and talks to them the whole time... for her mentally a vain draw is less invasive. Well I can see online that they results look almost identical to the last CBC so I messed the doctor this morning and received a message from the nurse that the doctor is out this week and someone will get back to me Monday. I know in the big picture this test being off might not be much but I hate waiting. I was talking to my mom the other day and I said that special needs parenting is just a giant lesson in timing and patience and a lesson that I keep fooling myself in thinking that I have learned.
My mom came over today to help with the kids while I worked on laundry. Jilli went to climb up on the couch and her tube got caught and it pulled and my mom said I needed to look... I look over and mom it holding Jilli's extension that connects to her tube and the small plastic piece that goes into the tube is no longer connected to the tube. I mutter a few words and run upstairs. Thankfully I had a splinter this weekend and realized that we needed new tweezers so I got new ones the other day, so I grabbed the tweezers. As I was doing that both my dad and Brent called... apparently they knew crazy was going on lol. I laid Jilli down and tried getting the piece out as bile was pouring out... like you know those medical drama scenes where blood is just pouring out of the body... think like that but with bile. We once had a nursing instructor teaching a student in our room and she told the student that with a j tube you do not have to clamp the extension because a j can not backflow because the intestines only flow one direction... and I laughed a little and advised that if they didn't want a mess that they need to clamp Jilli's. Both girls have motility issues in their entire GI system so things flow multiple directions. We were grabbing handfulls of paper towels trying to stop the bile from getting everywhere (bile does not feel good on skin and sucks to get out of a rug). So for 20min I tried to get the piece to turn the way it needed to (it needed to turn 180* and then come up) while bile was flowing out... and it wasn't working. It was too wet. Mom called Brent as he was on his way to church to work on the stuff he wasn't able to last night and he told us about some other pliers that he had so mom found those and I tried with those and it just wouldn't turn. It was now after 4:40 and IR (the department that changes gj tubes) was closed for the day so I called the special needs voice mail and left a message to see if they had any ideas to help or if not if they could let the ER know that we were coming. Mom and Jilli prayed while I went to grab gauze and tape and clothes for Jilli so we could head to the ER. I came back downstairs and the bile flow had stopped. I grabbed the tweezers and decided to give it one last go. I tried for several minutes and called Brent and let him know that we needed to head to the ER... as I was on the phone with him I kept trying and it started to turn and slowly I was able to get it to turn all of the way! I got the piece out and got a new extension and and flushed the tube and it worked. We cleaned Jilli up and cleaned up the mess all over. As we finished our Special Needs doctor called and said that he had called IR and asked for a team so stay so that they could replace the tube and we could avoid admission. I told him that I got it fixed... everyone was shocked that I got it out! But I am so thankful it came out at home because IR is ordering more of our feeding tube but they are not due in for another week so if we had to go in we would have likely had to go to the tube that doesn't work for Jilli. I am thankful though that our team worked so hard at finding a solution to avoid being admitted.
Jilli was a rockstar during this all. She said a few times that she didn't want to have to be admitted, that she wanted to stay at home to play with her toys (logical) but she said that as long as we brought her hospital bag that she was ok with having to go to the hospital and that it would be ok. She did everything we asked of her while we tried to get it out and she laid so still for 45min. She stayed calm even though the situation was not fun. She din't have a single tear, she started a few times that it wasn't comfortable and the bile really didn't feel great, but she used her words calmly to tell us. She was a rock star! My mom had found a Wellie Wisher on clearance a few weeks ago and we had it tucked away and we decided after the rockstar that she was during the whole thing that she earned it tonight!
Lydia was also so sweet. She wanted to help so bad. She would grab paper towels and put them on Jilli and on the mess. She kept handing me tweezers... it was very 2 year old helping but she was trying so hard and her heart was in a place of service. She kept asking Jilli if she was ok and giving her hugs and kisses. Lydia is such a compassionate person. She cries in stores if she hears another kid crying.
After that all mom and I went to Fred's for dinner and ordered a table of appetizers... potatoes in multiple forms is what you need after stress lol. We are still on dehydration watch since she last 45min of feeding time (she gets fed 24 hours a day, there is no time to make that up) and she lost ounces of bile but we are hoping her body does ok taking this hit... only time will tell.
So I am ready for bed tonight. Both kids are already actually asleep before 11pm so I am taking that as my chance to sleep (Lydia was up before Brent's alarm this morning and stayed up). Here is to tube life... we know no other way of parenting so this is all in a day in the life of us (although this part breaking has never happened to us before)! Goodnight all... its been an interesting one!
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| The one on the right is what it is suppose to look like... the one on the right it the one that had the end break off in the tube. Without an extension in a button tube you can not feed into the tube |
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