Little Warrior Princess is definitely making the turn back towards the good side today!
Actually, in a weird way, she started making the turn last nite with all of the INSANE IV craziness, because they finally got off their butts and ordered something stronger than tylenol for this kid! And once we were able to help her get on top of that pain – off she has gone. As i had no doubt she would!
Actually – let me start with a little “glossary of terms”. My darling father in law ever so gently reminded me this morning that I need to talk slow and not use so many medical terms when i am giving very important updates! (and in case you are wondering, yes i really do actually use these terms with our residents. Not so much the attendings, because they don’t usually need to be put in their place as much as residents. But it’s just ever so much fun to watch a residents face struggle to remember the vocab terminology of the words I am using!)
In order to understand today’s update better, you will need to familiarize yourself with these terms:
P-IV = peripheral IV line. Also sometimes just referred to as “a peripheral”. This is a line(iv) that sticks into your arm or your hand or your foot or wherever the nurses are lucky enough to find a small vein that won’t blow up the second you start putting fluids into it. Most people when they “get iv’s” are getting a PIV. Kendall has struggled her entire life with keeping PIV’s, which is part of why we went with the port last month, which is a CVL – central venous line. I am using PIV here to differentiate between the kind of IV we HAD, and the kind we need to GET.
CVL – the central line. This is a more permanent kind of IV that is tunneled under the skin on the chest, with an access end coming out of a small hole, or in our case, a “medi-port” under the skin that we access with a special needle. This CVL goes into a large vein that dumps directly above the heart, so you can put a LOT of good stuff in there as fast as you need it usually. This is an important differentiation because it will explain why Sunday and Monday were crazy around here in that we did NOT have a good large well in which to dump the many things we were trying to dump into Kendall.
IR – Interventional Radiology. This is where Kendall typically goes to get her G-J tube changed, as it is essentially a video camera x-ray. If a regular x-ray is like a still camera, taking a snapshot, an IR x-ray is like shooting video of that same thing – you can see things in live action. Now, how they do this is actually not so much fun. Specially if you are slightly claustrophobic and definitely sensory overloaded like Kendall is. IR here at CHW (childrens hospital of WI, the milwaukee hospital) is kind of like a special kind of torture because they REALLY dislike actually sedating kids, or heck, even making them comfortable, before sticking them under the big scary loud video camera x-ray. Anyways – the table is equipped with about 5 velcro straps. These hold the child down on the table. The big scary camera comes RIGHT over their head, seeming like a huge 5 ton weight that may or may not fall on them at any given moment. And then the procedures are done to them – in our case, usually a long wire is threaded through Kendall’s stoma and a tube is slid down over it. Or like today, a hole is punctured in her arm, and a long flexible IV tube is threaded through her vein till it sits near her heart. Slap your grandma and bob’s your uncle, and then they’re done. That is IR.
PICC – Peripherally Inserted Central Catheter. Kind of a good happy medium between the two above, a PIV and a CVL. It is a central line (that threads to your heart), through a peripheral location (your arm). Kendall has had a few PICC’s before, when we know we will need IV access at home for antibiotics. They are easily pulled out (literally just a yank and pull at the kitchen counter, WHEN the time is right I should say!), in case there were to be any re-infection from one of the bugs Kendall is hopefully fighting off right now.
Port – “Medi-port” - Kendall’s previous CVL that we had removed in surgery on Saturday in an attempt to get rid of any leftover yeast bad guys that were still hanging out in Kendall’s bloodstream. We will probably replace her port once her 6 weeks of antibiotics are up because again, the hope will be that we only need to intermittently use Kendall’s port for fluid maintenance, and will be DONE with the TPN.
TPN – Total Parenteral Nutrition – IV food. It is a mixture of proteins (amino acids), carbs (sugar/dextrose), and fats (lipids), as well as electrolytes and other essential nutrients that can keep someone nourished even if their gut is on vacation. Kendall had to start TPN about two weeks ago when all attempts to get her gut to absorb or accept food were failing MISERABLY. It was really just a crappy time so I didn’t want to talk about it much on here. I really didn’t want to talk about it much anywhere really. It was a sad realization to see how EXTREMELY happy she was with not a drop of food in her stomach. We finally had Kendall back who had been missing for almost two months (since we were discharged on New Years Eve) – yet her gut was completely M.I.A. (that is missing in action! – sorry, couldn’t resist!) So after watching her start to have some major issues with hypoglycemia, become very weak (since she was surviving on about 6 ounces of pedialyte a day), and in general look very very puny, we took her in to Dr. Natalie to have another set of eyes on her. Dr N took one look at her and started ordering nurses to get TPN orders sent to our pharmacy. It was very surreal. But the bottom line was that the plan was to give her complete gut rest for about 3-4 days, run TPN for a week, and hopefully have kickstarted her system and call it a day. TPN can become a long-term choice for many kids whose guts have deteriorated to zero function, but for what we are hoping for with Kendall, it should be a short term solution.
I think that is enough for today’s vocab lesson. and I’ll have you know I started this update at 1 pm today! It is now 6:30. So it’s gonna be another long one probably!
Anyways – when we had to remove Kendall’s port on Saturday nite, we knew we would need to place a PIV. I actually had asked them to place 2, because Kendall just does not like to keep PIV’s in place. Especially running D10. But what do I know – I’m just the mom. So she came out of surgery with a BEAUTIFULLY placed PIV in her foot, but that was it. Just one. By Sunday afternoon, it was starting to get a little puffy, but she wasn’t freaking out over it yet, so we just kept our eye on it. By Monday morning we were having to really mess with rates and times of how fast we were running certain things in because we were having to stop the D10 in order to run antibiotics, putting her in a precarious situation with her sugars to begin with. But in order to get the antibiotics to go in without burning, we were having to run them over 2 hours. That’s a long time to not be getting any nutrition when you’re already sick and WELL behind the nutritional 8-ball. Well then her electrolytes and mag-phos (I am not sure what these are – minerals?) decided to start going wacky so we were having to add in an essential nutrient in between the antibiotic doses and then giving her some D10 every once in a while to try to keep her sugars up. By Monday afternoon, we were starting to call around to have another PIV placed from one of the teams that is used to placing very hard sticks in kids – PICU, NICU, ER, and transport (ambulance). Nobody had any time for us right then, but since it was still kind of limping along, we didn’t push them too hard. Or I should say our nurse didn’t push too hard. I was panicked. And sure enough, RIGHT after the saline flush for one of the antibiotics finished it blew in a big way. If you’ve ever watched a Peep blow up in a microwave….you have some picture of how her foot looked. We had a floor nurse in there then doing her best to place another PIV, and she was finding the veins, but every time she would go to push the catheter tip all the way in, it would explode the vein. Like popping a ….facial blemish. Everyone in the room was in tears by this point.
In walks the senior resident for the nite, who is a demure sweet girl I am sure, but she walks into the first level of Armageddon at that point and our nurse is screaming at her, put orders in for pain control NOW. and she goes, ummmm…..ok, how about some ibuprofen?? And I yell over my shoulder (because I am pinning Kendall down to get poked for the FOURTH time in about ten minutes) – “are you sure that’s a really good choice for a thrombocytopenic kid?” and the color drained out of dr. sr. resident’s face – “she’s thrombocytopenic??? oh mygosh i didnt read her file yet!” Awesome. Always an advisable thing when coming into a room to make a decision where there is OBVIOUS amounts of chaos going on. (and a translation of what that means – the doctor wanted to give kendall some motrin for pain relief, which is a known blood thinner. Kendall being in DIC a few days ago meant that she already had very very low clotting factors in her blood, and giving her a blood thinning type of medication could have disastrous results, especially considering that we are poking her full of plenty of little holes for lots of blood to come exploding out of. Not a good situation.) So the nurse trying for a line has now blown four sites and we all say enough – let’s call the other teams again and see if they can come again, give her a break, and try again in an hour.
This meant we had to get SOMETHING into Kendall to counteract the major drop in sugar that we were waiting to happen after no longer getting the D10. So we started feeds of formula into her J-tube of 5cc/hr, knowing that we had to make it work for at least an hour probably (that was the time that anesthesia gave us for coming down to them to attempt to get an IV placed.). Kendall has not tolerated feeds of formula in over 2 weeks, and on the heels of a pretty nasty systemic infection, we were not sure how well it was going to go over. But – all of you our faithful prayer warriors picked up in grand fashion, and we were able to keep the formula drip going! When we got down to anesthesia, we had found a “loophole” that allowed us to give Kendall some midazolam (Versed) as both a calming agent AND pain control since she was just through the roof with major bruising now happening all over her body plus her still super puffy Microwaved Peep foot. And THIS was when we started to see a little glimpse of Kendall. We FINALLY got on top of that pain she was in major amounts of, and she felt good enough to start fighting everything on her own!
Anesthesia also blew out another vein in her ankle, one of a very few visible veins she had left, and he was TICKED. He watched the “vein explosion” happen right before his eyes, and for a man who is not used to not having things go precisely as he planned them, it was pretty eye-opening! He immediately said “you need to call IR and get a PICC now. NO ONE wil be able to place a PIV on this child!” So in tears we all came back up to the floor (nurse, Kendall and me). And we told the sr. resident who again looked like she would rather be ANYWHERE but there in our room being told she had to start making some really hard decisions. She left to go make some phone calls and came in ten minutes later to tell me that they would probably be transferring her down to PICU so we could place a femoral line (up through her groin), or possibly one into her neck (jugular vein). As a part of rapid response team transferring her to PICU, they sent up the helicopter team to get a guidewire placed in a vein.
And that was when our angels in blue walked in. These two men walked in all confidence and pomp, but very very calming. They didn’t even turn the lights on in the room, just started asking me some questions, talking calmly with Kendall about her stickers, her mickey mouse movie, and all the while they were running their little red-light hand held ultrasound machine all over her body, looking for a good vein that was not blown to smithereens. They discussed something between themselves in the same calm tone of voice, and then began this amazing little dance where they both understood exactly what was required of themselves and each other. They repositioned me one time to “distract” Kendall’s gaze, and in some weird sleight of hand magic trick, and i swear to you it was, they somehow had placed a line, taped it to an arm board, cut a medicine cup to fit over the top of it and protect it from bumps and movement, and were cleaning up their trash and telling me to have a good nite! I was like – but aren’t you going to put an IV in??? And sure enough – they had. I was AMAZED. If I had not sat there and witnessed it myself I would swear she had always had that PIV in. I did not get a picture of it before it blew this afternoon and had to be removed, but it was EXTREMELY precariously placed going up the side of her hand near her wrist joint. Not someplace I would have ever expected a vein to be, let alone the one vein in Kendall’s body that was going to not explode all over.
So again – sr. resident walks in after they had left and signed off on things and goes “oh my gosh i have spent the past two hours SO NEAR TEARS because this has just been brutal!” I was like – you wuss! you weren’t even in here pinning her down! If you think that is brutal you should try living with this kid in the hospital because that is what happens just about EVERY SINGLE TIME we try to place a PIV!!!” Now granted, we have not really ever been in THAT precarious of a position, where we could not start feeds to keep her sugars/fluids up, we were in desperate need of getting antibiotics in, and who knows what the next crazy electrolyte was going to be that we had to run on an emergency basis? We were probably within easily 15 minutes of needing serious emergency intervention. God is good, and we were SO thankful for all of you who were faithfully praying when I put the news out on Facebook that we needed a lot of help and a lot of prayer!
Now – why were we messing with PIV’s in the first place? Well, because we don’t want to just give any lingering bad guys a new plastic home to turn into their hideout and procreate and take over her body again. The best way to do this is to wait for “3 clears” – or three negative cultures in a row. Last nite we were tentatively at 1 1/2 days of clear cultures. We had hoped to make it to Wednesday with a PIV so that we could give her the clearest shot at remaining infection free, but last nite everyone realized that “the ideal world” is very far removed from “kendall’s world”, and that we would need to come up with Plan B.
Which led us to today where GI attending’s assessment was “put the #$^&( PICC in”, and ID’s assessment was “we need three #(*@%(#) days of clear cultures to replace her port” and I was like – we could have replaced the port tomorrow?!?!?! Because that was NOT how i first understood it…
anyways – it was a crazy conversation. Semi-frustrating. Because we are not going to put a PICC in her one day and then go get a port in the next day. I mean, you COULD do that. It’s just not a very logical seeming choice I guess. So – I said, “let’s compromise. How about if we get a double lumen PICC in place today, leave that for the 6 weeks of antibiotics at home, hopefully wean her off the TPN in that time, and then when we come up to reassess infection status after that, we get the port put back in for hopefully WAY less access than what we are doing right now?” Surprisingly, everybody was in love with that plan. (I’m so glad we are paying these doctors to agree with my plans!)
One last vocab word – double-lumen PICC – a PICC line with two little “hubs”. The point of this is that we will be able to run her TPN along with her antibiotics and hopefully be able to get a little more sleep at nite since we won’t have to be waking up to check if her sugars are staying up through a two hour antibiotic infusion every few hours. At least, that is the goal. Who knows how it’s actually going to turn out, because, after all, this is Kendall we’re talking about!
Throughout the rest of today (Tuesday), Kendall has just been very low-key. Resting/sleeping a lot. Still not wanting to/able to sit up on her own. Laying in her crib watching “hot-dog” (Mickey Mouse Clubhouse) on a little DVD player that an angel gave us last week for just this kind of thing! i tried to get through the bob marley hairdo she has created by laying flat on her back for the better part of a week, and she was having NONE of it. I am thinking we may have to shave the dredlocks off and start over….it’s REALLLLYYY bad. And you know, coming from me, mother of four little girls with curls, if I say its bad enough to shave it, it’s bad enough to shave it.
All in all, a pretty good day. a day of much improvement for Kendall (her blood counts are FINALLY out of the range where a blood transfusion was being threatened every few hours), she was awake for a little bit longer today, we got working access with the PICC, we came up with a long term access plan, and a few of her doctors and I have had some really good conversations regarding further care for this current gut situation as well as all=over health assessments. It’s hard to explain all the nuances especially since I feel like I’ve been typing for HOURS.
Thank you for the continued prayers. I don’t think it will hit me for a while just how very sucky this whole week has really been. horrifyingly sucky I am thinking… But I don’t have to think about that just now. I just have to focus on continuing to get Kendall better so we can get home to the other girls who are desperately missing us. I know that so many from our church want to know how to help or what you can do – and really – I am not even sure how to put it into words. The fallout from this week will not happen until early next week (assuming we are home for this weekend). When the crash hits me, THAT is when I will need the help and support. Meals are ALWAYS welcomed! Extra sleep, snacks/lunch stuff for the girls, magical house cleaning fairies, and deliveries of coke and starbucks are also high on my wishlist most days…
Tonite I am just really really praying that we are home in time for Kealey’s birthday. It’s this Sunday. Thankfully my dear aunt and cousins had the foresight to have an AWESOME little family party for Kealey on Sunday at their house, and I know that meant the world to her. I hope she gets a cake from me, and gets to blow out her candles with her whole family all together in her own home. I hope I get to go shopping for presents for her. Obviously a big party is not in the works this year, and she’s such an amazing little trooper, that she’ll just sort of shrug her shoulders and tell me “it’s ok momma, I’m just glad everybody is ok, and i love having my birthday with just my family”. She’s such a big girl…how did she get to be NINE?!?!?>!?
Ok now i’m going to start crying and I’ve kind of done more than enough of that in the past 24 hours.
Thank you for checking on us…I promise I’ll let you know how we need help as soon as I figure it out myself!
love and hugs to all of you from all of us!
Terra, Ben, Kendall and the whole K-crew