I am going to have to start finding new ways to name these encounters… some witty and rhetorical means of making them sound not so bad… but maybe then again I should just let them be what they are….

I am finally getting out of my COLD funk that I have been in the for the past few days and having the energy to write about our most recent Kentucky Children’s Hospital experience. As always walking the hallways of KCH is very much like going home after college. It feels foreign and comforting all at the same time. Familiar and unfamiliar in a way that is almost okay.

Thursday September 11, 2008 will be a day I will never forget. It will be a day that lives on in the manner of infamy that holds so many meanings for others also. We arrived at the hospital around 5:45 am. It was supposed to be a quick in and out procedure. It was supposed to be easy, simple. We were supposed to be home by the afternoon. Its funny how you continue to mourn things that never materialized. I feel so bad for my baby girl that I continue to ask her to endure these things. I know that they are good for her in the long run but in the moment they are so horrible that you want to forget.

But you cannot. You can never forget these things. You can never forget how cold her hands felt or how gray her body was. You can never forget the sounds of the o2 monitors as they peak and fall. The look on the face of Kara, Joe’s P.A. as she comes striding into the waiting room. For an instant I had hope that she was only there to retrieve her maternity pictures but alas I knew it was not so.

So lets start at the beginning:
We arrive and wait to be checked in. I notice that they do not check us in the same way as normal. They just kind of hand us some papers and an arm band and send us on. OK. We get to Pre-op and wait for someone to retrieve us. As soon as we get back to the holding cell (our term of endearment for that terrible tiny glass room) we start to notice that everyone is rushing around more than normal. Like bees… in and out, up and down. The consents were missing, there was no chart (which is a problem for my child), no H&P (whatever that is!). By 7:15 we ascertain that we will have to wait until 8 am to get a new set of paperwork signed and head off to the OR.

8 am is like a Red light turning to green in Times Square. Instantly a tall thin man in a white coat appears and shoves a pen my hand and I sign. I am sure it is just like the 20 others that I have signed before I give it not a second thought. By this time Aru (Dr. Reddy), Joe (Dr. Iocono), Dr. Brown and a few others have gathered in the hallway in front of our cell. As much as it is not fun… we make something less than torture. Dr. Brown jokes that they are all just there to see us, we should just have a party. Kyleigh has become quite the celebrity. Which, I mean, how could you not love her?? Little less than 3 feet of spunky blonde crazy hair, killer blue eyes, and funny as hell. Yup we are kind of partial to her.

In less than 5 minutes they bring the Little Red Car and strap her in. She has had some Versed by this point and is pretty loopy… I don’t think she will honestly remember the car but it was a nice thought. They take her and we retreat to the Cafeteria for breakfast. Are we cold-hearted for not staying in the waiting room like the other parents and pacing, giving ourselves a headache from being on the brink of tears for hours on end? No. We are sensible. We have been here before. Many times. We have a system.

Just as we are finishing up eating the pager is going off… less than 30 minutes into the surgery… this is never good. We run back to the 2nd floor where the tall thin man has reappeared in the waiting room. He tells us that they would like to use contrast for the placement and they are about to take her over to angio. But the contrast has its own variety of issues especially for a child with bad kidneys. We agree that we just need to do it and be done. He tells us that we should just wait here because they should be done rather quickly- 30 minutes max.

9 am comes and goes. I watch as the clock ticks 9:15, 9:30, 9:45, 10 am, 10:15, 10:30… By this point I know that something is wrong. I had debated several times getting up to ask them to call back and check on her but what is the use? If something is badly enough wrong they will send someone out. Before I can finish that thought process Kara appears in the doorway. She has become our “babysitter” of sorts. Anytime Joe needs to tell us something and cannot BE THERE.. he sends Kara. Some how it never sounds as bad coming from her. So she sits down… cute little pregnant belly and all and she looks at me with those “I am so sorry” eyes and says “They can’t get it in… they have tried like 5 times BUT Joe is headed over there NOW to see if he can get it”… for an instant I have hope. We begin to talk about WHAT IF the PICC is a total no go? She tells me that Joe has mentioned a Broviac and tells us about the possible side effects of it. By this time Troy has awakened from his nap that he was uncomfortably getting curled up in the awful waiting room chairs. (If you want to know about family centered care… get some freakin reclining chairs for the OR waiting room!!! UGH)

By this point I am listening to Kara but staring off toward the main doors and I see him come around the corner. Having known Joe as long as we have I know that there are two Joe “walks”. There is the “hey how are ya doin today” happy go lucky walk, then there is the “walks with a purpose” walk. This was definitely the latter. As he flung the door open I also noticed that Aru was following behind him… the doubly bad.

Joe explained that there was no guarantee that he could even get the Broviac in. Her veins are just shot. Too reactive… too weak. They have been stressed too much in too little time. He begins asking me questions to which I don’t know the answers but the handy dandy 3 inch notebook resolves those quickly. I save the operative reports so that they can be referenced in the future and they have been a huge resource to us. He also tells us that he doesn’t want to move her to the OR and he would be taking the OR to her in Angio. Aru hurries off to round up whatever a “14″ is and we don’t see her again. He also tells me that Ky has been “down” a long time. She was on a “short tube” because they only thought she would be out an hour max… now we need to get in and get done but she may have some troubles coming out simply because of the amount of time that she is going to end up being down.

By 11:00 am Joe has now disappeared and we are signing consents for this new procedure. I remember asking Kara how long this would take him and she said she honestly didn’t know. 11:30, 12, 12:30, 1, 1:30 comes and goes. FINALLY I get a text message that he is waiting on us in the surgical waiting room. I run (literally) to meet him and he is already gone. In a few short minutes Aru appears with her comforting voice and her tiny stature. There is just something about her that makes my heart ok. Every since that first surgery over two years ago it has been Aru that seems to calm the storm in my heart… I haven’t figured out why that is but I will eventually. She tells me that she had been worried and that she literally had MADE a place for Ky in her schedule because she knows as well as we do… Ky is NOT easy to sedate. Sedating Ky is NOT for the faint of heart because she goes down hard and comes back up fighting. Aru knows my child’s anesthesia needs as well as Joe knows her body. That is a dynamic team that I am relatively certain we could not find anywhere else. I am thankful every single day of my life for these two amazing people. She give us the run down and tells us that it was not an easy go. 4 tries and finally on the last one the line went in.

I don’t know if this was a battle for the line or just a battle of wills that Joe was determined to win but either way he got it done. By this point Joe has reappeared and looks rather weary. He tells me that Ky has taken more years off his life than anyone else he knows. He says that she is probably not going to feel good because these long hours were not a pretty procedure.

And then comes the thing that I love most about Joe. I ask him how will she be when she wakes up and his classic commentary is “That depends on Kyleigh.” He knows better than to even suppose. He has learned the hard way. Kyleigh is not be taken lightly or to be assumed about. She has proven to us over and over again that she will not be reckoned with.

In reality she was VERY sleepy waking up. She was having trouble maintaining her o2 sats and was very cold… in the 94′s in her temp. That would be alarming to some but for us, knowing all we know about her, its just her thing. Her autonomic system is not the same as a normal kid. This we know. So we chuck it up to “being Ky” and deal with it. We sat in PACU for more than two hours and during that time she was given Fentanyl for pain. Every PACU nurse who cares for Ky is surprised that she requires the dose of pain meds she does but I am just so glad to once again have Aru by our side who truly understands what it means to be Ky. She chews up pain meds and spits them out.

Eventually we are delivered to Room 447 on 4 East. This is the room where it all began with KCH. The very first room we ever had the “privilege” of residing in. It still had its single bed (that is a nightmare) and its spacious (HAH!) accommodations and the TV that buzzes. God I remember that TV.

It was a long long night waiting and begging for pain meds. 10 minutes before each dose Ky was screaming in pain and de-satting. Her heart rate even SLEEPING was in the 150′s. I was (THIS) close to calling Joe at 3 am and saying..DUDE… this has to stop! If it had been in the afternoon I would have but I could not bring myself to wake him up at 3 am after he had already dealt with us all day. I am sure we had given him a migraine as it is. We had planned to still try and make our trip to TN to visit the NEW Urologist prospect but I knew about 3 am that was not going to happen. I called Troy to come back to the hospital and he did. My amazing 6 ft 3 husband folded himself into a ball and crawled in the crib with Ky and there he stayed for the entire night and most of the next day. I was able to get about 3 hours of sleep only to wake up the next day and realize what a hit my body had taken. I could feel that “sickness” feeling coming.

The next day Joe said “you should have called me” … well yeah… but I didn’t. We changed her pain meds over to an oral dose to transition her to something that we could do at home. She was in the WORST cranky mood while trying to work that anesthesia out of her system… it was bad. She wanted everything and nothing all at once. She kept telling us “hurts you mommy”… but god knows how much of that you can take into consideration with a two year old.

After clinic Joe came around and declared that we needed to go home. All of us. So shall it be written so shall it be done. And we were headed home. Not without the normal flurry of discharge issues. Home health, last minute pain meds, blood draw, flushing the Broviac and changing the dressing and signing the discharge. Finally we were done and headed out to stop and get meds before the pharmacy closed and then to HOME.

(this is the part of the story where everyone breathes a huge sigh of relief and Ky turns into a different child the minute she hits the front door….)

Somehow we managed to LOOSE the pain meds and had to call Joe late that night and ask him what other meds we could give her. Luckily I keep everything and I had Oxycodone that was not expired so we gave her that and eventually ended up finding the other… it had fallen in the LAPTOP bag…

We all slept like logs that night. Thanking god we were home!

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