For the record I just had to find a nurse and ask her what day it was. She confirmed it was Friday. I lost a day here somewhere…
As a quick recap – we are back in Children’s Milwaukee. We came in on (I think) Wednesday, late at nite, after being on the phone with Kendall’s nurse up here all morning and afternoon due to some scary numbers on her lab results from the day before. They wanted us to have them re-drawn locally, and preferably from a peripheral site. (See a few posts back regarding the nightmare that is trying to find a peripheral vein on Kendall). So me, Kendall, her nurse Regena, and Kaylen spent the afternoon terrorizing the poor phlebotomists (people who work in the lab doing blood draws) at the local hospital (bolingbrook adventist), where they obviously much prefer people whose veins actually work right. And who don’t explode into their tiny lab and preclude all four of their techs from actually seeing any other other twenty people in the waiting room. It was good times. Anyways – a few hours after getting home and taking the big girls to dance, I got the call that we needed to come up as soon as possible for a transfusion since Kendall’s blood counts were all dropping to some not good at all levels. Poor Ben had worked so hard to get on an earlier flight so we had a few hours as a family – and instead he got thrown into the chaos of arranging schedules for the big girls, packing up Kaylen and the hospital room that travels with Kendall, dealing with me and my frustrations at having to go back up there, and then of course the teeny amount of fear that you let yourself feel that something is really crappily wrong with our baby and hoping that THIS is the time they will be able to fix it.
So we got to the ER (CHW cannot direct admit unless you have seen a provider in clinic that day or get seen in the ER first) – and we waited. And waited. And waited….It was a flurry of activity first with redrawing the labs, hooking her up to monitors and watching her real closely to make sure with numbers like hers that she wouldn’t just suddenly crash. But then like 18 other kids came in by ambulance and kendall wasn’t that interesting anymore and we got to just watch Hoarders and i tried to fall asleep in the little vinyl chair in the room. At about midnite they told us our room would be ready around 2:30 am – so I was able to run and move our car from the parking lot in the ER back over to the parking structure, and get all my stuff out of the car. This seems like a minor detail, but when I have no one else to stay with Kendall, it can be a major undertaking! So it was a blessing to be able to get this done during that time frame while she was CONKED out in the ER. I did wonder about the poor soul who had to get discharged at 2 am though…
The ER doc said he didn’t think Kendall’s numbers were bad enough to need a transfusion, but that he would run all the tests to get it started and let the docs up here on the floor hash it out. I should have known at this point that it was going to turn into a three-ring circus of craziness. So we finally got up to our room right at 2:30 like promised, and then went through all the monitor hookups, paperwork, history, and general questions that go along with getting admitted. So at 4 am, we finally both passed out. Up again at 7 for lab draws, shift change, doctors rounding.
The plan as of yesterday was to not jump to transfusing only because her numbers in the ER were a slight bit better than they were from the first two sets we had drawn on Tues/Wed, and the docs up here don’t want to just pump her full of blood only to have her eat through it again if there is a serious problem going on somewhere. i understand the logic of that thought – but as sleep deprived as i am from going on three weeks with very little sleep, I just wanted them to give us the band-aid of transfusion and kick us home again! I have babies at home who need me, and Ben left on the second leg of his crazy week of travel, and why NOW do they want to start doing all the testing they should have been doing two years ago when I first brought up some of these issues!?!?!?!? I did manage to not kick any residents yesterday. It was a tough urge to control though. Especially the eager beaver who walked in here at 4 pm yesterday wanting to know if i had phone numbers or fax numbers to all the labs that had drawn her tues/wed labs. I walked over to the whiteboard and wrote the number to the GI clinic that is attached to this building and told him to call and ask for Korrie. I was about to pass out from tiredness at that point and I just wanted to eat my hospital sushi in peace before it was room temp.
We did have a good very logical conversation with ID (Infectious Diseases), who want to make sure that Kendall is not destroying/attacking her own red blood cells by having created antibodies to them during her recent sepsis. their other thought is that the yeast she was fighting last week (well, the yeast that overtakes her gut every few weeks actually) may have taken up residence on some of her organs and is just sitting there not being affected by the antifungals she is on still. This would help explain the continued low grade fevers and the just not “getting better”, and the continued crappy blood counts. But I am not quite sure how we would “fix” it if that is the issue, other than doing more weeks of antifungals, and probably not getting a new port in as soon as they had thought we could.
GI is REALLY wanting her to poop so we can see if there is any blood being lost in her GI tract anywhere. If there is even so much as a speck of blood in her stool, he will have enough “need” to go in and scope her – I am not sure from which end, probably both! – and look to see if there are any obvious places where bleeding is occurring, as well as see if she has a “Meckels Diverticulum” – basically its kind of like an extra appendix/pouch of tissue that is notorious for sucking blood out of the GI tract and depleting the kid of needed blood and nutrients over enough time. It is probably yet another wild goose chase in the mysteries of kendall, but if a few specks of blood mean we can finally get the view internally that I think we have needed for over two years now, then by all means – pray for blood!
So right now, friday morning, we are trying to convince her that contrast-flavored apple juice is what all the cool 2-year-olds are drinking these days. I know it SEEMS like we should be able to just put it into her tubies, but for some unknown reason, radiology is saying they want to coat her entire GI tract, and they’d prefer she drink it. So she is coughing/gagging/choking it down. In about a half hour from now they are coming to take her down to CT suite, and she will be sedated and they will scan her little body for any signs of anything that might explain what’s going on with her crazy self.
I think things right now are kind of on hold until we have these results, some poop, and possibly more blood drawn for more tests. They are trying to schedule a care conference – where all of Kendall’s docs will get together with us in one room at the SAME TIME and hopefully come up with a cohesive plan of care and what do we do NOW and what do we do in the FUTURE about some of these issues. I admit I am a little intimidated at the thought – I just don’t think it will ever happen!
And that’s where we are right now. I will try to update after the CT as soon as we hear anything. I admit that I would be very happy if we could just get a decision on whether she needs the blood, get it into her, and head on home later tonite. My neck and back are aching from the hospital bench bed, and i miss my babies terribly. I am doubting that we are getting out of here tonite. But I am hoping for the weekend at least. I just don’t know that we will ever find the real reason Kendall’s body is doing what its doing, until everyone just accepts that she is tired. Her body just doesn’t have the energy it needs to boost her up over the hump all the way from what she endured last week. She is doing very good comparatively speaking. But its been a long few months of a slow decline, and it just isn’t going to be the kind of thing she pops right back from. I appreciate that our docs are being methodical about finding answers. And I do pray an answer can be found. But if not, we will just be glad to get her home where she can continue to rest and recuperate and gain strength.
Thank you for praying!
And a very special thank you to my friend tracy, for spending a long boring day at the hospital with us yesterday, and for bringing a stash of coke, m&m’s and oreos . We will have you almost a full blown RN soon enough with all the beeping pumps and alarms and machines! And to my mommy and daddy for being there for the big kids.