That first breath.

This morning, for the first time in her life, I got to witness my child take her first breath.

When she was born, she was whisked away from me because she was not breathing. She was intubated and extubated in the NICU without me there. I’ve never been present any other time she needed to be extubated for various reasons. But today I got my chance.

I woke up to her silently crying (the breathing tube has a “balloon” that blows up just below the vocal chords to keep it in place, so you don’t hear noises coming from your intubated child typically.) I went to her and held her hand and told her that soon it would be over. Our beautiful angel Rachel peeked in the door and said, i was waiting for you to wake up! It’s time to take out that yucky tube! I ran to put my contacts in and brush my teeth and by the time I came out of the bathroom a nice little party of people had gathered. Kendall needed some major suctioning in preparation for extubation, which she was NOT a fan of.  The tape was slowly unwrapped, the cheek guides peeled off and then just like that, it was out.

Inhale.

Exhale.

Whiney little cry.

it’s a girl!!!!

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And I sobbed and threw myself on her and her doctor, the only doctor I would ever want in the room with us at that point, put his hand on my shoulder and just held it there. I grabbed him in a huge hug and said you did it again! And then pretty much everyone in the room was sobbing because our respiratory tech knew that this was the first time I’d seen Kendall take her first breath and she said “you did it mom. you did it kendall”. So much joy and relief and praise and awesomeness in this room this morning I cannot capture it.

And then they were gone, and they had pulled the curtain and I just held my baby and sobbed. Cried it all out. Let the emotions of the past few weeks rack my body and let those tears flow and just held her and thanked God and told Kendall I was so so so proud of her and I loved her and i was so glad she was back.

I do not for one second take this lightly. i know far too many moms who have not gotten their babies back at the end of a long illness. i cried for them and their angel children who I am sure were watching over Kendall over these past couple weeks. I cried for Kendall and I cried for her sisters and I cried for her dad, grandparents, friends, family and thousands of you who have taken her into your hearts over the past couple of years, months, weeks.

And now we look onward and upward. We keep on keepin on.

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First up – new line placement tomorrow. I know a few of you were waiting for MRI results last night – and I honestly didn’t know if I would hear them. That report typically goes only to the surgeon who will do the surgery so he/she knows what she’s looking for. But this morning, after extubation, it was one of the first things that happened. The surgeon’s assistant came in and sat down with me and opened up the report on the computer and showed me the part where it said “upper extremity veins appear to be patent and normal functioning”. I don’t know if I can grasp for you the magnitude of those words. Patent (open/working). Not stenosed, not narrowed, not blocked by scar tissue. To say this is nothing short of a miracle would be to understate the case. This is beyond miraculous.  It does not guarantee that placement tomorrow will be “easy” because sometimes the battle is getting to those open veins. But do I believe that God has heard our prayers to open and restore some of those veins in her upper chest? Absolutely I do.  My God can move mountains and He can open up veins.
So tomorrow afternoon she will go down to surgery. Be reintubated. Hopefully be easily re-extubated. Hopefully not be in the amount of pain she usually is post-line placement (it requires a lot of pushing/pulling/tugging like you wouldn’t believe unless you’ve seen it happen.) We are trying to do a slow wean on her morphine that she has been on round the clock for over 2 weeks now (the drip started before she got super sick). 5 days of constant morphine has a high risk of withdrawal. 10 days has a nearly 100% guarantee of withdrawal. It is very likely that Kendall will need to go on methadone to ease her withdrawal symptoms.  But we will cross that bridge when we get there.

We are waiting on Infectious Disease team and Immunology Team to continue combing through her chart and coming up with a short term plan to go home on, as well as a long term maintenance plan for handling/preventing infections better.  We need to look deeper into her possible gall bladder issues and likely do a full abdominal CT still to make sure we aren’t missing anything in her gut that might explain the increased volatility of her translocation (when gut bacteria move into the bloodstream – the reason she has gotten so sick the last few months). We (Ben and I) have a lot of hard decisions to make about Kendall’s care from here. She will not be going home quite the same kid she was when she arrived here in July. But she WILL be going home, and for that there are not enough words to express my gratitude.

Today I am just soaking up her. Her little voice. Hearing the things come out that are so very much her, so very much the same little Kendall still in there, in her weak little body, her squeaky little voice. My heart is soaring today.

Thank you for being on this journey with us. It goes on from here~

 

t.

I know a lot of stuff.

Really, I do. I’m not trying to be braggy. I just know a lot of stuff. I also know that there’s PLENTY that I don’t know. But when it comes to my baby girl – TRUST ME that I know her better than any person on this planet. I don’t know why I continue to let myself doubt that fact. Why I continue to try to be calmed down by well-meaning medical professionals who tell me that “everything’s fine, that’s normal, it will be alright within a day or two”. I think because most of the time, I really really really want to believe that. I’ve wanted to believe it since that crazy-accented doctor told me almost four years ago in the NICU – “one of these days her body will just wake up and she will be totally fine.”

IMG_4112 Except that’s just not how Kendall works. She rolls to the beat of her own drum. And that drumbeat does not include “being totally fine”,thankyouverymuch. Don’t get me wrong – she has plenty of times where she “looks good”. Where things are “as good as they get”, and we all breathe a little easier.

But when something is up? you had better believe that i am the jeopardy CHAMPION of all questions and answers in the Kendall category.

For the past week or so of Kendall’s “recovery” from surgery, I’ve had this unable-to-shake-it feeling that things were just very off.  I couldn’t even really put my own finger on it – but I knew that her pain should not be as out of control as it was, that she should be a lot more “bouncy-backy” than she was being, that something was just not going right. Her nurse tried telling me she needed more activity (and while I agreed with that to a point, it just kept seeming like it was making her go backwards the more we were trying to play physical therapist). Friends tried telling me that recovery was just tough sometimes. The internet gave out its typical false sense of hope that things were just taking on the longer end of the scale of normal. But none of this made ME feel better, and it certainly wasn’t helping Kendall feel any better.

As per our discharge/post-op plan, we removed the Foley catheter (a large sized plastic tube that stayed anchored into Kendall’s bladder and led out through her urethra to drain into a large plastic bag) on Friday morning. It was everyone’s hope that getting that tube out would “cure” her pain and behavior issues, and life would start returning to normal within that very hour. And I will concede, that for maybe a couple of hours, things were “ok”. She definitely seemed to WANT to feel better, and tried playing more with her sisters, but still kept having these weird “episodes” (probably an autonomic response to the pain/infection that was trying to build in her body, but I say that now only having the info I have. Over the weekend, I had No idea what was going on with her.) Once that catheter was removed, we were supposed to uncap the more “permanent” tube that was surgically placed into the tunnel created by the uro-surgeon, and urine was supposed to begin free-flowing through that tube into a second diaper. which it did.

Ben and I played Macguyver that nite to try to find a way to hook that crazy tube end up to any of the drainage devices we were sent home with. Nothing matched. It was like having a flat-head screw, and the only screwdrivers we had were random sized Phillips-heads. Super frustrating. But never fear. My husband has this uncanny superpower whereby he can make ANYTHING fit into ANY other container. We went to bed, she drained into the bag, we went about our Saturday having some fun time with the older girls. (Incidentally, we took them to see Brave. Which made me cry. Because the bravest person i know is Kendall, and she wasn’t with us. Plus its a good movie which i think makes everyone who sees it cry. but that’s another post for another day.) Anywhooo…. we came home to a newly broken permanent pee tube. The tip had broken clean off. Which might not seem like its a big deal, but the crazy concoction of tubery that had been placed into our child was like nothing that anyone had ever seen before (we still don’t know what kind of tube it actually is – but we believe it is something they would use on a preemie in the NICU. The reasons behind WHY the surgeon used this tube make sense – but are frustrating in retrospect.) Anyways – Saturday overnite, the urine was still running pretty good but she did not sleep well and required a lot of pain meds, and by Sunday afternoon, it was obvious that her discomfort was building again. And quickly. And to such a degree that we were having a VERY hard time staying on top of it. Monday morning after a rough nite, I called the surgeon’s office again to explain that we were having a massive decrease in urination, and that it did not appear that she was peeing through her urethra at all (peeing only through this surgically implanted preemie tube. You cannot possibly imagine the intense pressure trying to build up behind this teeny tiny tube. Kind of like the pressure of I-55 traffic at 4 pm going down to one lane.)

The response from their office was that we needed to check her urine for a possible infection – but that we were very likely to “always” get a positive urine culture because of the plastic in her bladder. (i’m really not quite sure what this little side lecture had to do with anything, because I was calling to request pain control, not a microbiology lesson, but whatevs.) Our awesome lab nurse came out to get a quick sample (because in theory, with an open draining tube directly to the bladder, we should have been able to just hold a sterile cup under the tube and git R done.) Except this is Kendall we’re talking about. That hour that three of us spent cajoling, getting literally punched and kicked, holding down a child acting like she was possessed by a very angry demon – it was brutal. All three of us looked at each other after it was deemed that we had “mostly enough” for the lab to run the tests and were like – who’s buying drinks??? It was horrible. And we all knew that something was most definitely not right. Through Kendall’s diaper, you could see that the very small amount of concentrated urine she was peeing was mostly blood. It was heartbreaking. By Monday afternoon, after some very terse phone calls between our lab nurse, the urology nurse, myself, and our home nurse – it was decided that kendall needed to go to the ER.

Once at the ER we were told that the sample we had worked SO hard for – was lost in transit. The ER doctor performed a minor surgical miracle and was able to thread an angiocath (a smaller IV needle) into the broken tip of her bladder tube, and we were able to get it somewhat draining again (thereby relieving some of the pain and pressure that had been building up for a few days.) in order to perform this procedure, they had to give her some “Versed” – which is this super awesome concoction of happy juice that they give to little kids before they take them back to the operating room (it has other uses, but that’s mostly what it’s used for on a more common basis). If you’ve never had the privilege of seeing your child hopped up on happy juice, you’re missing out on some prime blackmail material! Kendall has unfortunately had more than her fair share of Versed in her life, so we knew that the one dose we were giving her would last for about ten minutes – but we thought it would be enough. It was SO AWESOME to see my happy baby girl again for those ten minutes. But it broke my heart a little too, realizing it had been so long since I’ve seen her. (For those who can’t read my mind since its been so long since i’ve updated, Kendall has been in a lot of pain/having issues for 2-3 weeks BEFORE the surgery date. So it’s been a very very very long month for her of dealing with all of this!)

Monday night was one of the worst nights we’ve had in a long time – and I was in her room literally every hour, dosing her with FAR more ibuprofen and tylenol than was healthy, but it was all I had. it was so heartbreaking to have her in so much pain, and have NO way to help that. I just laid on her bed next to her and prayed for Jesus to be with her, to give her pain to me, to bring her rest and peace. And sometimes I didn’t even have words to pray, and i just cried with her. She finally dozed off around 3 am, and slept for about two hours before it started up again. First thing Tuesday morning, her nurse and I hit the phones again to everyone. Except by that time they were calling us. The urine from Monday HAD been dropped off, and it was not looking good. We knew she had an infection, and the only question was which IV antibiotics were we going to order?

Sorry for all this info – this is going to be an EPICALLY long blog post. But we basically get all the TPN/fluids and any medications Kendall needs in IV form from our awesome awesome awesome home health pharmacy, ThriveRx. They are based in Ohio. We live in Illinois. if you’re wondering how this works, i’ll just say – the miracle of Fedex. Every Thursday morning, we get two huge boxes (and more icepacks than I know what to do with) delivered to our house. This works smoothly most weeks, until Kendall needs antibiotics. But even so – they do an AMAZING job of mixing them right up once they get doctors orders, and sending them out via courier. A person literally drives them – no matter what time of day or nite – from Ohio to our front door. So we were playing the waiting game on Tuesday to see what we were going to start, or if we were going to wait til Wednesday to order them and have us get a loading dose of a broad spectrum antibiotic at the local hospital. Or any of a number of other random plans that the 2802 people involved in making decisions were coming up with. Finally her urologist called me himself, and in his awesomely gentle, kind-hearted way, asked me what we should do. No pretenses, no acting like he’s seen it all and done it all and knows it all – just a doctor talking to a mom about her sick baby. I told him I couldn’t even make the call. I had no idea what to do, I just knew that we needed rest, and help, and relief from the massive amounts of pain racking her little body.

so he said he would call the local hospital, and give them detailed instructions, and come up with a plan of care, and a plan to transfer if things got crazy. And so we came in.

I have so much i could write about my hesitancy to come here – to a place that traditionally has been of ZERO help to kendall. To a place that didn’t know her, didn’t know me, and didn’t know all that stuff that i know about kendall. But that’s another post too. for a different day than the other post i already said was for another day. Because on THIS day, it was the right call. They gave her the relief she needed via some anti-anxiety and pain relief medication. They fixed the tube (again). They were by some miracle able to re-insert the foley tube and let her bladder start draining again in a much more relieving way.

We found out this morning that she is growing a pretty nasty bug. It apparently likes to pretend like it’s playing nice and dying off due to the antibiotics, and then overnite, it mutates into some crazy mutant super bug that won’t die for anything. This doesn’t ALWAYS happen, but it can happen with some regularity. This kind of scares me. But I’m going to choose courage instead of fear right now. Just when we thought we had a plan for THAT, we got the super fun news that her blood culture had also come back positive for growth. With a separate but equally nasty bug. More fear trying to creep in. She got THIS SICK – all without a single fever. That could mean any number of things – or it could mean we just got really really really lucky and caught it super early. I think it’s somewhere in the middle of the spectrum of scary – not scary. I think her autonomic system is just so overwhelmed by this crazy summer, and by the insane stress on her body the past few weeks – that it literally doesn’t know which end is up, and which end is supposed to burn a fever and which end is supposed to cool itself off.

The bottom line is that we aren’t getting out of here anytime soon. well, soon by my standards. which would have been about 12 hours ago. There are a lot of balls up in the air right now, but I do believe that the team here is capable of juggling them all. The most important thing is that she IS getting some antibiotics, and they ARE helping relieve her pain and anxiety. There are no cocky third year residents telling me how to care for my child, and no overworked nurses taking care of far more patients with multiple needs than they should be. Kendall is in what is essentially the ICU here at our local hospital, and is receiving a LOT of attention and care. She is finally finally finally getting SLEEP. Relief. Rest. Restoration. After almost five nights of next to no sleep due to the insane amounts of pain and discomfort from waging such a bad battle in her body – her body is resting so well that we are having to lower all the alarm limits. Her heartrate is low, her o2 sats are low(er) than normal, her blood pressure is almost half of what it was last nite. Normally this would be concerning – and it still may become concerning, but for now, we know her body is just chilling itself out.  And we’re going to let it.

Tomorrow we will hopefully have more information on what we’re fighting, and how we’re going toIMG_4113 fight it. Hopefully we will not be needing to dose her with narcotics every two to three hours. Hopefully her body continues to fight as well as it has up until this point. She’s very tired. I hope that the things that I know about Kendall don’t include what my fear is tonight. That resting this deeply means the “bad sickness” hits. i hope that’s just my own tiredness talking, or the fear taking hold in a place that I am firmly trying to dislodge it from. Hopefully i am wrong on this point. I do pray that this rest lasts all night long though, and is the start of the healing her body so desperately needs.

sorry this is uber long and does not include pretty pictures. The pictures I have on my phone right now are mostly of surgical sites to send to doctors. Not pretty. i’ll hopefully have some good ones tomorrow. Or maybe the day after that.

Thank you so much for your prayers, and comments, and words of encouragement. They all do mean so much.

And now i think i am going to crash myself. it’s been a long month.

 

love,

 

terra.

(ok i lied on the picture thing – i found a few from early July during a fun family trip to Costco!)

Movin’ on up.

See what I did there??? With the title? It’s kind of a play on words. Cause, you know, Sherman Helmsley passing away and the Jeffersons theme song, and also cause we are hoping to “move on up” to a regular floor (not the PICU) and Kendall’s recovery is moving up…. you get it? no? you don’t? just me? {nervous laughter}…..IMG_4114

ok nevermind.

Anyways –

We should be getting transferred up to the floor (as opposed to the “unit”, PICU) relatively soon. Kendall is “stable and controlled” with regard to her issues and pain – but the team is still treading lightly, knowing that she is still needing a lot of medicinal support to keep her that way. She still has the PCA (morphine pump) turned on – but we are trying to add in more oral pain meds (meds into her tube – because that’s how we give pain meds at home) and see if we can wean down the use of that pump.

As a quick catch up for those of you who did not see all the facebook posts last nite – the surgery itself went great, he was successful at creating a tunnel for her bladder and preserving blood supply to the entire site, and feels confident that this will help to greatly alleviate her pain from the retention she was having. It will be about a month of recovery with the drains and extra skin buttons in place and for the scars to all heal over – but after that time she should be up and running like usual! So praise God for that!

After we came up to the PICU, she was still very conked out, until we tried to adjust all of her tubes and wires. She was absolutely through the roof with pain, and seeing how horrid her surgical site looked, I had no doubt that it was extremely painful for her to be moved a millimeter. They were SO awesomely responsive here in the PICU IMG_4111 though – ordering extra meds, pushing them quickly, getting her comfortable again no matter what. And that’s not to say that we don’t get good care up on our regular floor, but i was AMAZED at the level of care and immediate response that came from the PICU team. Good thing too since about an hour after getting her settled from that first event, she started dropping her blood pressure, violently vomiting (which is quite a sight to see from a kid who has her stomach wrapped around her esophagus to prevent such a thing from happening), and in general having a really tough go at things. After one of these episodes we noticed that she was bleeding a lot from around one of the incisions, but the surgeon packed more gauze around it and proclaimed it still good. Still not a comforting site for a momma though. Finally at around 2 we were able to get back on top of the pain and vomiting and keep her blood pressure up at an acceptable level – and I crashed. I had planned on getting up every hour to check her and press her pain pump again – but the nurse set it to a bigger bolus and she took care of it til the morning team came on duty and i actually got 4 straight hours of SLEEP. which I NEVER get in the hospital because on the floor, the nurses are usually busy with 5-6 other patients all nite and I end up handling most of Kendall’s nite time care. It was such a nice thing to have it all under control all night long! All of the nurses here keep saying how shocked they are that the floor never sends her to them (on the unit) because her needs are pretty extensive for what they can handle – and I tell them that its because I end up doing most of it! (or ben when he has hospital duty! or my aunt who got roped into spending the nite one time!)

But i’ll tell you something – you ever need a hefty dose of perspective? come hang out in a Peds ICU sometime. It has given even ME some healthy perspective about Kendall’s care/situation. I am anxious to get out of this unit and onto a floor because I understand that the really sick kids are here on this unit. I want to get back to the regular sick kids place. where they make you wait for hours for a single dose of tylenol and no one ever has the right supplies your kid needs for her central line. where alarms aren’t flashing on 4 monitors for other kids who are coding in the room next to yours. where there aren’t machines covering every square inch of space in the little rooms. Where they are able to hide medical equipment in nice wood veneer cabinets and not have it looming large, handy and QUICKLY ACCESSIBLE by your child’s bedside in case the unthinkable goes down. It has been wonderful to have the support that Kendall needed when she needed it – but I am ready to get back to our little microcosm of “regular sick”.

Kendall is currently trying to take a nap – but its hard when there’s a TV screen that is movable to being literally 6 inches away from your face with Cinderella playing on it.  (if you look in the top pic, you’ll see the tv screen on a swivel arm in the top left corner of the pic – it moves. It is currently VERY close to her head.) I’m glad to see some of her personality peeking through the pain. We were able to get the bed a little elevated and give her some meds through her J-tube. These are all encouraging signs that she is moving in the right direction in her typical little soldier pressing forward way. There is some very hush-hush murmurs about her possibly being able to get out tomorrow nite IF we can keep her pain under control without the morphine pump. If not tomorrow then Saturday should be the day. It is going to be a crazy week at home. We are hopefully going to be very covered with nursing help as she will still have a lot of tubes and drains and lines coming out of both God-placed and man-made holes in her body.

FOR THOSE WHO HAVE ASKED: (you know I hate feeling like i’m asking for help ever…) But if you have asked – up here in milwaukee, I am craving a few specific things that I’m not even sure they have up here. I know some have asked on FB, some via text, some I don’t even remember! Do they have a buffalo wild wings up here? Chick Fil A yet? If you were one of the ones who volunteered to bring me food stuffs – text me please! 630.803.3189 (and if that doesn’t apply to you, then please don’t worry about it!) Our visitors are restricted while we are on the unit, but once we are up to the floor, I think we can open visitors back up (family that claims me as a relative –this means YOU!!!)

Once we come home – oh who knows? I do know that one thing we will be in need of is DIAPERS. IMG_4116 And I know that this seems odd – but once her drains come out, she will be leaking into diapers. Any size, any kind. With all of these medicaid changes, she no longer qualifies for medical diapers until she turns 4. And lemme tell you – this kid goes through a LOT of diapers. I’ll spare you details – but with a non functional bladder and a non functional GI tract – it makes for some crazy messes. I’m not asking you to go buy us diapers – I’m only saying if you happen to be able to potty train your kid and still have like half a pack leftover, or if you go up to the next size and have some leftovers – we will gladly take any and all donations for the next couple of weeks! Aside from that I can’t think of much right now. You’re all so great all the time – I just value your friendship and support and random crazy texts!

Ok i’m starting to get one of those “i don’t think i’ve eaten all day” headaches so i’m going to go raid the vending machines.

I’ll try to update the FB page for the blog and/or do a blog update later once we are hopefully moved on up to the floor! I dare you to not have that song get stuck in your head now…

love you all – thank you SO much for the prayers all nite – I am quite sure that is why things calmed down enough for me to get sleep!

 

peace out party people –

 

T-crest.

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