Back in the Tower.

2tower that is. the peds floor at lutheran general.

I am not even sure where to begin telling what happened or what could be causing this fun stay in Hotel LG, so i’ll just give important highlights via bullet point:

• After a tough week of just “going downhill” in those million little ways she has, she started having a lot of diarrhea on Monday, and then began actually vomiting (a lot), over the fundo. When she actually gets stuff up and past that wrap in her stomach, i know it’s pretty bad.
• She had a very hard time clearing the vomit, and was choking on it/possibly aspirating it. Which would be very bad. So we knew we had to do something, take her somewhere.
• After trying to re-arrange Ben’s work day, the girls’ plans to go have fun with Memaw and Poppa Tuesday nite, and figuring out what in the heck could be wrong so we knew where to take her, we decided to bring her up to LG for what we hoped would be a quick once-over, a bag of fluids to bounce her back, and possibly home that nite. ( I know – unlikely. But a girl can dream can’t she?) In fact, i was so convinced that this would be the scenario that I didnt even pack a bag. Someday I will learn my lesson. someday…
• At LG, we were of course escorted right back to a room because walking in to an ER with a kid on a pulse ox monitor that is beeping like crazy and pulling a huge O2 tank behind you and having your arms full of a 5 inch thick medical binder with nurses notes – they tend to take you a little seriously. our favorite NCT (care tech) was there, and he helped kendall immediately become relaxed and less wary of what all was happening. Our first resident came in and pulled the whole – oh she looks fine, i guess we’ll see what her labs show us before starting fluids. Luckily her attending took one look at her history and said “um no. she’s here for the nite at the VERY least. no kid should have heart rates like that and need that much O2 if they are otherwise healthy.” Thank God for good docs.
• They did a bunch of bloodwork and a Chest X-ray, and we got up to our room where we learned that Kendall was very dehydrated, but didn’t seem acidotic, which is her usual MO with sickness. So at that point I was confused, because Kendall has done nothing but eat about a half cup of mac and cheese and drink just about her weight in Gatorade over the last three days. Not being acidotic wasn’t so surprising, because she just wasn’t giving me her usual “I need help” clues. But being that dehydrated in spite of continuous feeds and lots of gatorade – that confused me. Just then she decided to open up the floodgates and let loose with a diaper the likes of which I hope I never have to deal with again. I am going to spare you the gory details. But let’s just say that I have dealt with a lot of nasty diapers in my life, and this by far made the Top 5 list of worst things I have seen, smelt, or had to attempt to clean up. Even the nurse was like – ummmmm, where do we begin? she managed to get it ALLLL over her IV. Luckily it was wrapped in about 18 layers of gauze and tegaderm, so hopefully it was protected from the worst.
• Anyways, the diaper was full of fat and mucus. I know. i said i would spare you, but it does possibly have some bearing on what we’re dealing with, so I gotta put it here. It was very strange, enough so that the nurse thought we should try to save it to show the doc/possibly run a stool sample on.
• Dr. A came in and we discussed the fact that she was not acidotic, but that her bicarb was tanking, so we were going to supplement in her IV to hopefully help stabilize her from going acidotic and doing more crazy stuff.
• Over nite, Kendall had a lot of pain in spite of tylenol suppositories – No idea what it was all about, but it was hard to hear and not know how to help her.
• At some point in the nite, I had the thought that the fat dump + pain + dehydration might all be related to pancreatitis (don’t ask me how i made the connection – its a long story of reading too much and seeing too many mito kids have similar issues). Anyways – i immediately woke up and began googling. Unfortunately, there isn’t a whole lot of stuff out there about pediatric cases of pancreatitis. But it was enough that i asked the resident if he had added it to her differential. He admitted that he had not, but proceeded to pace around our room going  “this is SOOO interesting! She is very complex! Why is her bile blue? Pancreatitis could explain a lot…..VERRRRYYYYY interesting!!!!” The nurse just about slapped him to get him to come back to reality/stop the pacing and said “sooooo, what should I order?” And he said – oh! I’ll let Dr. A make that call!
• Luckily for resident (and his shins, which I was about to kick), Dr. A rounded not too long after that. I told him about our conversation with the resident, and we came up with these fun facts and further plan:
• She has “extremely diminished bowel sounds”. So diminished in fact that they are basically non-existent. This is very unusual for kendall. Even when she’s constipated, you can still hear rumblies in her tumbly – and you rarely need a stethoscope to hear them. her nurse had noted a decrease in them a few days ago. So this isn’t news. It just indicates that her gut has stopped moving.
• This could be caused by one of two things: First, it could be a “true obstruction” – meaning that she is literally full of sh- crap. This would be blocking anything from going through or out, and is causing her gut to cramp up, stop absorbing things (like, say, fluids, leading to dehydration), and essentially wreak havoc. The second thing would be a “pseudo-obstruction”, meaning that some other process has her gut fooled into thinking there is a blockage, so it is ACTING like its shut down, even though there’s nothing that needs to be pushed through.
• At this point, a true obstruction would almost be better, simply because then we can remove the poop (you don’t wanna know how), and move on with life.
• If this is pseudo obstruction, we would assume (based on how her pancreas enzymes come back) that it is caused by the pancreatitis, have to give her gut rest (meaning nothing into her gut, and only IV fluids for a few days), and hope it decides to wake up on its own. This could happen in a few days, it could take a few weeks. I am hopeful for the former. This is similar to what happened in August when she ended up needing the PICC line up at Milwaukee. The trauma of all the anesthesia meds/spinal tap/vomiting caused her gut to shut down for a few days.
• At this point, we don’t even know if we ARE for sure dealing with pancreatitis, we just know that something is bugging her gut badly (she won’t let anyone near it to touch it or even really look at it), as well as the lack of bowel sounds, coupled with the history of the last few days. It’s highly suspicious however, which is why we are initiating this workup.
• In Dr. A’s words to the nurse who was in here to hear this conversation “Once we get all these results back, you report immediately to the boss (pointing at me). Boss, you come find me in clinic, and tell me how you want to get to Milwaukee or if you want to stay here. I am behind you whatever you decide.” He always knows how to make me laugh, even when faced with a crappy decision like this.

So – now we wait. They were going to try to run the pancreas tests with blood that was already in the lab from this morning. But we may need to try yet another peripheral poke in her already very bruised up arm. We need to wait for transport to come get us to take the KUB X-ray (it stands for kidney, ureter, bladder – which is very weird since its rarely about those things, and more about stomachs, but whatever). Then we wait for the results.

Milwaukee is already on standby for us. I probably need to call our complex care nurse and update her on what is going on so we can make a better plan for transfer as needed. I have already had the care/transfer manager come talk to me from here so we can start coordinating things. I hate having to make this decision. in my heart i know its probably going to be the right one (to transfer up there), but the thought of being even farther away from my family and leaving all of this care to Benj who is trying to work from home just rips me up.

Even now, as they all left a few minutes ago to get Kealey to dance, and they were all crying and Kendall was crying because they were leaving and because she’s in pain and because she just wants a bubba dangit (yes i swear i heard her say that) and Ben isn’t feeling well and I am not feeling the best and I just don’t wanna be dealing with this….it was hard.

All of your awesome comments here and on my facebook page over the past few days are so amazing. I can’t put into words what it means to have the support and love of so many. To hear that my crazy ramblings “inspire” some of you is the hugest kind of compliment, but one that I feel so undeserving of. Because you know what? any of you would react the same way to “all of this”. you would. You have no idea how strong or resilient you are until you are faced with something large, some seemingly impassable mountain. And then you just start crossing it cause there is no other way around it, and you get to the other side and you look back and you said – YES, i DID just do that. And you will know how strong you are.

i do not feel strong right now. i realize I may be jumping the gun to be thinking of transfer plans and what do we do with the kids and how do I get clothes and overnite things and i didn’t even bring other clothes for kendall and she doesn’t have her special blanket or her new baby doll and my other babies are going to miss us and what if her gut DOESN’T wake up by this weekend like we all want it to….I know I am ahead of myself. But its very hard to stop this train of what-if, because it barrels down on you with all the force and speed of a freighter crossing open prairie and you are stuck staring in the headlights of it.

so I will try to remain calm and not think past the next few hours. I will only make a few lists of ‘”crap that I can’t even fathom how we will work out if we have to go to milwaukee and are there for more than a few days”. I know so many of you are so willing and ready to help us out. i am not even sure how or if I should go about making a list of things we DO need now and things we MIGHT need if we go up there.

I can tell you – keep the prayers coming. They are ALWAYS what holds us up. My baby is definitely in a lot of pain, even though she does her darndest to be distracted from it. She’s a trooper. Pray that she is able to continue to get some sleep and rest in spite of it. Pray that the tests will reveal a clear source for all of this craziness. Pray that my head is clear as I speak with the nurses and docs and make the decision on what to do from here. Please pray that Ben starts feeling better from whatever he is fighting. and pray for the tender little hearts of my other babies. They get so disappointed when we have to be apart like this. I am so torn at how to be in two places at one time.

Thank you for praying. thank you for checking on us. thank you for your kind words which are the supports I need so badly to lean on right now.

terra.