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As mentioned in the post from August, Claire came down with a cold while we were camping at Fort Stevens. No big deal for most kids, but Claire falls into respiratory distress fairly easily and we were home less than 24 hours before departing on our Labor Day Weekend camping trip with Jake’s dad, who came up from Arizona to join us. I took Claire to the Pediatrician and got her some precautionary antibiotics and we embarked upon our next trip…Grandpa Ron included. We camped at Riverbend County Park on the Santiam River….one of our favorite spots! The weather couldn’t have been nicer and we were having a good time. Claire’s antibiotics seemed to be helping and her seizures weren’t too crazy and she did spend some time awake during the trip. We went to the fish hatchery one day at Foster Lake, made S’mores, and Jake and Ron enjoyed a round of “golf” with the toy golf clubs that were supposed to be for Tristan. Seriously…I so wish I would have taken video of the golf game. Tristan did enjoy picking up the golf balls and throwing them. As always, our visit with Ron, went entirely too quickly and we had to pack up and go home. We came home from the campground on Monday afternoon. Monday night was a rough night for Claire. Claire began having Grand Mal seizures…and indication that she was still sick. By around 9 AM on Tuesday, morning Claire’s body had been through enough…with her 7th Grand Mal seizure, Claire stopped breathing…briefly. Jake gave Claire rescue breaths while I called 911. Without going back and counting I do believe this was the 6th or 7th call we have had to make in the last year. Claire was whisked away to the Salem ER and by the time we got there Claire had stopped seizing and was actually breathing ok. The problem we were now having was Claire was not responding to stimulation. Claire was again “obtunded” which is medical speak for a state of consciousness to prior to being in a coma. With the lack of response from Claire we decided to have her sent to Doernbecher (Salem doesn’t do much pediatric work…especially with kids like Claire). Once admitted there was further testing done because Claire spiked a fever and we needed to get to the bottom of her illness. It turns out that with the antibiotic for her cold Claire’s gut bacteria was again wiped out and she had another case of Cdiff…a poop toxin. (Sorry…no nice way to put that) We started Claire on a different antibiotic to treat the Cdiff. During that admission, we also decided with the guidance (more like gentle shove) from Dr. Wray, to start Claire back on the Ketogenic diet. A brief reminder…the Ketogenic diet is high fat, protein, and almost zero carbs. The “blessing” this time around is Claire is tube fed and does not have to taste the awful formula. We stayed in the hospital just shy of 1 week. Upon discharge, we were feeling quite hopeful for the Keto diet this time around. Claire went 4 days without a seizure!!! While home, however, our next issue was beginning…we just didn’t know it yet. Monday afternoon I was giving Claire her afternoon medications and her feeding tube clogged. I tried everything I could think of trying to get the clog out. I worked at it for about 30 minutes when finally with some pretty warm water and brute strength the clog dislodged. The problem…when the clog disappeared there was a “pop”. I let it go for a few hours but I just had a nagging feeling that there was something wrong. By evening Jake and I decided it was best to take Claire to the ER and have her checked out. After some convincing they did a dye test and were able to confirm that there was dye in Claire’s stomach…a big no-no when she is fed into her intestines. Claire was admitted and the wait was on for getting a new tube. Tuesday rolls around and the Interventional Radiologist tells Jake they don’t have Claire’s feeding tube in stock at the hospital, but they did have a different one. We said fine…just get her a new tube so she can eat. The IR doctor lectures Jake about the amount of radiation Claire is being exposed to (this is our 4th tube change since the end of Feb.) and we let the Doctor know we understand the risk, but our priority right now is to get Claire a feeding tube that works so she can have her medication and food. We said we would discuss surgery and a separate J-tube at a later date. Wednesday rolls around and we are thinking Claire will get her feeding tube…but alas, she did not. Wednesday was a day that tested the patience of Jake and I to the max. A nurse from the surgery team comes in to examine Claire and tells me the tube will not be put in until the next day. According the NP, she believed the doctor from IR is “stalling” to basically force Jake and I to agree to surgery for Claire. People…I am a calm person but I just about went through the roof! I contacted Claire’s Neurologist and a patient advocate because in no small terms…I was PISSED. By Wednesday it had been nearly 3 days since Claire had any food and though we were lucking out and getting her medications through her feeding tube we knew things weren’t right with her digestion because here seizures were picking up significantly. On top of the increase in seizures, and the fact that we were being “bullied” into a decision we were not ready to make we had an insensitive comment by one of the neurology residents. The patient advocate, who in no small terms was not all that helpful, did crack the whip and ensure Claire would get her new feeding tube on Thursday. I spoke with the surgery team later on Wednesday and they tell me the IR doctor wants to repeat the dye test on Claire’s tube before he will agree to replace the feeding tube on Thursday, because he still did not believe there was anything wrong. I told the surgery team if that is what it would take just get the test done and get the new tube in place. Thursday…yay…Claire will get her new tube. I walk with the nurse and Claire over to the main OHSU building where the procedure will occur. We meet the anesthesiologist and he is again saying they will do the dye test and “IF” there is a problem they will place the new tube. At this time, Claire is having a grand mal seizure and I am furious that there is even an emphasis on the word “IF”. Needless to say as Claire’s seizure ended she vomited her meds…here’s an anatomy lesson. Claire’s feeding tube goes 40 cm into her Jejunum (small intestine); if the feeding tube is working properly there is no chance of reflux. I looked at the anesthesiologist and asked in a very irritated manner “If her tube is working properly, explain to me how she just vomited from 40 cm down in her intestine?” Basically he told me not to shoot the messenger. So after about 90 minutes I went down to the recovery unit and met with Claire. I asked the recovery nurse if Claire’s tube had indeed been replaced. He looked in the computer and said yes, the old tube was impacted. Ok….see….mom knows best! I could hardly believe it had taken 4 days and all of the fighting to prove there was indeed something wrong. Don’t get me wrong, I was more relieved that Claire could now have food. As a mother, if I had withheld food from Claire for any reason, even if I felt it was justified, I would have been charged with neglect or abuse. I still do not understand to this day how the hospital can take no action and withhold Claire’s food for 4 days with no consequences, especially when you consider her food as a therapeutic treatment for her seizures. Needless to say we were more than ready to go home. We were discharged from Doernbecher on Saturday and by Tuesday we had Claire back in the ER for uncontrolled seizures. Claire stayed an additional week and we didn’t really make any changes…just waited it out. In all honesty I think she was just seriously out of whack from the previous week where she had no food and we don’t know how much of her medication was actually being absorbed since her tube was impacted and her meds were going into her stomach.
For all of you who toughed it out and read this entire entry…I give you kudos! I tried to think of a better way to sum up the month of September but just couldn’t.
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