It is early morning on Tuesday, and I have thus far only had to prepare breakfast for one member of the family – Max the dog.
The girls are at my mom’s house having spent last nite so that Ben and I could go to Kendall’s big GI appt. today. It is strangely relaxing to be sitting here, contemplating all that I COULD do in the next couple hours, and knowing that most likely I will not do any of it. I should make some coffee; and then the thought strikes me “why not go GET some coffee???” I mean, the thought of only having to load up the baby to run through the DD drive thru is actually making me giddy with excitement. What a sad sad life! But in actuality, I am simply trying to distract myself from thoughts of what today’s appointment could mean.
I haven’t blogged all week because it’s actually been a pretty tough week. My thoughts have been all over a roller coaster, up and down and back and forth – and my mind and heart have been racing with thoughts of nothing else but trying to keep kendall from crashing. All of her doctors left the country on spring break last week, and I was left with a baby with pneumonia who desperately needs a GI to look at her, a few meds to administer via NG tube, and a whole lot of questions with no answers. I know part of the stress was my own fault. Dr. A wanted to either transfer her right to Children’s last Saturday when he discharged, or admit her on Tuesday from his office because she was still fighting the pneumonia so bad – but I felt comfortable caring for her at home vs. another never-ending inpatient stay with too many pokes and prods and not enough actual data coming back in to HELP her. Maybe I should have let him put her in. I actually reached a peak panic-mode on Thursday night/Friday morning where I was THIS CLOSE to just driving her up to Children’s of Milwaukee (known in the “reflux” baby arena to be one of the nation’s top centers) and praying that a doctor would listen to me. A good friend actually went so far as to call a doctor he knows who has connections at that hospital to see what could be done for Kendall. Just talking it out and praying with some good friends put my heart at a place of peace and I was able to form a more logical plan. I am not sure if it was overblown mommy instinct coupled with an insane lack of good sleep, a spiritual attack of some kind designed to wound my spirit, or a combo of all of the above – but it was not fun. I am not a huge fan of anti-depressant drugs – but I would have gladly swallowed a handful of them that morning if someone had given me the opportunity. i was just SO WORRIED for her.
Part of the issue was that we KNEW coming out of the hospital last Saturday that there was clearly something going on in her GI tract between the crazy X-rays, her horrific abdominal distention and cramping, and just the pained crying. So on Tuesday, after hearing how bad her lungs sounded still and knowing that he was leaving the country for two weeks and she wasn’t getting in with the GI for another week, Dr. A started her on omnicef to keep any further infections at bay, just as a stabilizing factor for Kendall. One of the bad side effects of Omnicef is that your poop turns this crazy shade of red that is eerily similar to the color of blood. One of the signs that something has gone wrong with your GI tract (specifically the 2 or 3 things that they were evaluating Kendall for last weekend) is bloody stool. Now, I have had a kid or two on Omnicef a few times before. And i have always known – oh! that’s an omnicef-diaper! But I didn’t know that with Kendall. It just wasn’t NORMAL. So on TOP of the moaning in pain all nite, and on TOP of her not sleeping cause she could hardly breathe, and on TOP of knowing that she had pneumonia that could collapse her lungs at any minute, now I got to add in the stress of worrying whether her intestines were dying or if she was just reacting to the antibiotic. I just wish it was an EASY kind of worry with this kid. Like, “hmmm, is this just a cold or does she possibly have an ear infection?” THOSE are the kind of questions I would have no problem asking myself over and over and over again. Cause I can live with the results for a few days either way. Intestinal bleeding? collapsing lungs? These are questions better left to extremely educated doctors. And yet there was no one around who knew all of Kendall’s history who could help us out. So we had to buckle down and weather the long week together, all of us, as a family.
And we made it till today, where she will go see her newest doctor, a GastroIntestinal specialist named Dr. N.
I have no idea what she will see in Kendall. I am torn between wanting her to SEE immediately what’s wrong, and send us for immediate help and fixing the problem and getting us home and back to being a normal family ASAP, and then not wanting to miss out on this week – Kealey’s spring break, a trip to the zoo, another EI intake meeting (since we had to reschedule her last one for a hospitalization!), and Easter Sunday. I want Dr. N to hear me that this isn’t just some superficial issue like a formula change or possibly a tweak in the amount of her medicine – no, there is SOMETHING in Kendall’s system that is either using up all her calories or not allowing them to be absorbed or processed correctly. And until we find and fix THAT – nothing else is going to amount to a hill of beans. No therapy is going to help, no formula thickeners or electrodes stuck to her throat or breathing treatments 6 times a day will make her HEALTHY and THRIVING like every child deserves to do. So I am torn.
I desperately do not want another inpatient hospital stay with lots of pokes and prods into my baby who is already dealing with pain I can only imagine living through…and yet I know we need ANSWERS for her, and the only through this battle is, well, THROUGH it. Right into the thick of pokes and prods and tests and procedures and possibly even some surgeries. And I don’t know WHY God put this path before Kendall, but I know it is hers to go down for right now, so I’ll gather up whatever strength I have left and I’ll carry her down it.
I hate this feeling of the unknown though. Like – will I be at home or in a hospital tonite? Should I pre-pack my bags as a kind of lucky charm against NOT going into the hospital tonite and instead waiting for some other better time frame? Kind of like Murphy’s Law in reverse “If I am prepared to go to the hospital, we will not get sent. If I DON’T prepare for it, she’ll send us”. These are the crazy stretches to which my mind has gone – packing suitcases as a means of medical therapy. I want so desperately for the doctor to HEAR me, that Kendall needs help and she needs it NOW, and yet- I don’t want her to hear me TOO much. Like, next Monday would be ok. Give me something to keep her happy/breathing/alive in the meantime and we’ll see you next Monday to get down to business.
but then I fear – what if she doesn’t hear me at all? From all accounts this is one of the few REALLY GOOD GI specialists in the Chicago area. If even SHE can’t figure out my kid, where else do we go? Do we pack up and go to Milwaukee? What about the other girls? And then, you can clearly see where my mind would just run off the cliffs of Insanity (name that movie!), trying to put into place Plans that may or may not need to be made. i am having a very hard time taking it one day at a time because there is no guarantee of anything these days.
So that’s our update for the week. Lots of questions, no answers, and even less sleep.
If you’re reading this before 1:00 pm central time, please pray for our appointment. Pray for Dr. N to HEAR our concerns, and to use her expertise and knowledge to make the best possible decision for Kendall’s care, testing and treatment. someone last week prayed with me that Jesus would be sitting in that room with us – and the visual I got of that just brought tears to my eyes. I know He is just as concerned for her as we are; she is HIS child too. And i pray that He would direct the conversation, having us give the right info and having the dr. ask the right questions. Pray that if we DO have to go the hospital, that all the other crazy details of life would be able to smoothly be worked out. He has always been faithful in this and I know He would be again, but that still doesn’t mean that my mommy mind is at EASE with all the upheaval. Please pray that this appointment today would LIFT our spirits, instead of crushing them with despair.
I’ll update later tonite – either from home or the hospital!
Have a beautiful Tuesday –