2Tower

This is mostly just an “as info” post for me to be able to refer back to as needed about kendall’s {first} hospital stay of ‘10. I had to laugh at myself because I was looking through my calendar yesterday and noticed that under “goals for the month”, I had written: Keep Kendall out of the hospital!

HA! I wrote that in January! I guess I was thinking that since she had gone in last year at this time, making it through February without a stay would be a good push forward. Not thinking that this is clearly smack in the middle of RSV season, spring is still weeks away, and I have really no reason to believe that she is completely out of the woods with all of her “issues”. But it did make me laugh. Guess that’s a nice checkmark in the “epic fail” category for this month’s goals!

Anyways – the decision to admit Kendall came because we do feel like there is no hard evidence that oral antibiotics are really being absorbed and/or utilized in her system. We see a SLIGHT improvement the first day she starts on them, but that is mostly with regard to her gut function. Antibiotics do tend to speed things up on a GI front – and she, with her typically very SLOW moving gut, actually benefits from this for a day or two. But as far as getting any kind of improvement on the respiratory symptoms that we typically need to put her on antibiotics for? Slim to none.

So given how long this current illness has drawn out, and the realization that it could easily be another few very long weeks of worsening respiratory function, it was not too hard to decide to go on up to the floor for some IV fluids, IV antibiotics, and IV steroids. The good stuff! It was actually a very quick process to get admitted up there (it typically takes a couple hours, and then at least an hour or so to wait for a bed). The new Tower rooms (new addition to the hospital that they were building last February when we were there!) – are very nice, much bigger, much more modern and workable for families. We were RIGHT outside the main entrance and by the nurses’ station – so it was a little bit loud for my liking – but its kind of just loud period in a hospital.

As is our usual custom – I tell the nurses where kendall’s best line sites are, and request that they take her to the procedure room while i go ten floors up and get a snack while they are putting her IV in. It is never a pretty process. This time, in spite of how hydrated i thought she was, they still bring her back to me with CLEAR signs that she has been screaming her head off for a good half hour, with bandages in four other spots besides where the IV is taped up and housed with “no-no’s”, and tell me “yeah, we had a little bit of a hard time getting a line started!”  Ya think? Like I couldn’t have guessed that from the other 4 blown sites! Anyways – bottom line is, they got one started. I didn’t hold out much hope for it – it was at the top of her foot right where it connects to her ankle, and she wanted nothing but to stand up in that crib, putting lots of pressure on the “needle” part of the IV.

But we got her started on some good Rocephin (ceftriaxone), Clindamycin, and Solumedrol (methylprednisone). She was on a pretty good loading dose of all of these, which did serve to make her a TEENSY bit wired the first nite (she got about 3 hours total of sleep from Thursday afternoon till Friday evening) – but they seemed to start making a drastic difference in her wheeziness and liquidy breathing. There was WAY too much drama that first nite over her feeds. The residents like to pretend like they are real doctors who can handle any emergency, but in reality, they are  underlings sent there to carry out the orders of the Attendings. The Attendings are who are running the show for most of the kids on the floor. Attendings are direct admitting their kids with specific orders most of the time, whereas residents get to supervise kids who get admitted from their pediatrician or from the ER. Dr. A is Kendall’s attending doctor. He knows us, he knows her, and he knows what needs to happen. So he writes orders for Kendall to get her J-feeds as necessary, at a slow rate. I hand the residents Kendall’s protocol letter for her MMA – which confuses the snot out of them. “But she’s not in metabolic crisis right now! We can’t follow this!!!!” Ok people, use your JUDGEMENT. She has an IV, start fluids. Don’t start the insulin if she isn’t hyperglycemic, don’t start the bicarb if her numbers look fine. It seriously took me till midnite to get them to understand that feeding her was OK with all of us. Then started the drama with the fact that they don’t have kendall’s formula, and why couldn’t we try a different kind, and what if they just sent a security guard to walgreen’s to get some more and are you SURE you don’t have any more that we could use tonite?

So frustrating. They NEVER have her right formula, I always have to call our HHC and beg them to make an after hours delivery so I can feed my child. Anyways – we had 8 ounces of formula, so we gave her that, and decided on pedialyte as a good alternative until the formula could be delivered. So much drama over something so stupid –because we had orders ready for IV dextrose as needed AND we were talking about 2-3 hours of no food at that point at max. Bottom line was – she would be fine if they would just make a decision and start her on SOMETHING. I hate how it’s never simple there. I swear they can act like she is the ONLY kid on the floor with a feeding pump and medical formula.

Anyways – Friday she was still pretty wired from now not sleeping and eating about half what she normally eats. I had to go down to Karissa’s party at school for Valentine’s day, and to shower and pack for the rest of our unknown length of stay. Continued improvement, some napping, but overall good stuff. Friday nite Ben and I switched shifts again, and of course he is no sooner out the door then i notice a huge crazy rash on kendall’s whole leg, and creeping rash on the other leg. No one can figure it out, and everyone just wants to go to bed, but no, we have to call the residents in again. They come up with the BRILLIANT plan to “watch it to see if it spreads, but its probably just contact dermatitis, and since she has had apneas, we can’t give her benadryl, so we just have to hope it goes away on its own”. Excellent. We’ll watch it, thanks. And by the way she is wearing her own clothes from home which have been washed in the same detergent for the past 15 months, so contact dermatitis isn’t really a viable option at this point, but fine we’ll go with that.

We finally get her settled down for the nite, or so i thought, when nurse comes in to prep her for another round of antibiotics, and discovers that the IV is blown. But instead of just making this call on her own, she calls another nurse in to confirm this. They continue to flush the line with saline, which isn’t really going into her veins as much as its just leaking everywhere – and about 4 ounces worth of flushes later, they realize they need to replace the IV. So at 1 am we get everything set back up for an IV change. By 2 she is set with a new IV, we finally have some cortisone cream for the “rash” on her legs, and we are all ready to just get some sleep. It was a long nite!

SAturday morning, Dr. A comes in and says we are going to be good to go within a few hours! We talked about why we needed to have IV abx/steroids at this point, and if that would ever improve, whether or not he felt that IVIG would help some of these recurrent pneumonias/infections, why was she having apneas, and what we could DO about it all. He basically said he doesn’t KNOW what the answers are, because we can’t say for certain which way her system will go with the underlying metabolic issues. He’d like to HOPE that she will grow out of it as her system matures, but then says that other things point to that not necessarily being a sure thing. He can say that he is almost positive her apneas (stop breathing spells) are obstructive in nature, most likely from reflux. He said that at this point her asthma is definitely being aggravated from all the reflux, but that going back on her meds won’t really help it. It was a confusing conversation – in that he knows there’s a problem, but doesn’t really know what or how to help it. I felt very…frustrated. Not so much at him, or even at the situation right then and there – but just by this constant presence of “yes there’s a problem, no, this isn’t normal, no we have no idea what to do about it other than treat symptoms as they crop up”. It frustrates me that we have been tossing around this IVIG thing for MONTHS now, and yet no one has taken the bull by the horns and ruled this in or out as a good option for kendall. No one can say for sure that she has not HAD seizures in the past or will definitely NOT have another seizure if we try to immunize her again.  And why is she still refluxing this bad that it causes her to not breathe well at nite? and why does her heart have to work so hard to keep her oxygenation up? and at what point do we worry about the crazy things her heart does do? And why can’t we ever just get an IV started easy peasy rice and cheezy in her? And WHAT IS GOING TO HAPPEN TO MY BABY!?!?!?!?!

But clearly no one has those answers. And probably never will. So we just adjust to it. Stop asking so many questions and just accept each day with whatever it brings – good or bad.

On our way out of the hospital, while waiting for discharge paperwork, kendall proceeded to throw up an entire bottle’s worth of formula, mixed with blood and mucus. I just about had a meltdown of frustration. She should NOT be able to vomit like that!!! And why was there blood in it? But the residents and the nurses were all too happy to get us out there – she challenges what they know of how babies are supposed to be and act when they are sick, so with a few simple explanations (oh – yeah, the blood is just from how hard she has to work to vomit, and the reason she vomited is because she swallowed a bunch of mucus, yeah that’s it have a great weekend!!!!), we were on our way.

I was glad to be out of there in such a short time, and yet – I feel like we almost have more questions than answers now. And I didn’t expect to get “answers” per se, but I certainly didn’t expect to have MORe questions now!

The bottom line is that while we weren’t advised to take her NPO (nil per oral, not eating by mouth) again, they did tell us to pretty severely restrict the amount of food she is taking by mouth, especially before bedtimes. Feed her in a carseat, or make her eat sitting up only, and make sure she doesn’t lay down for a half hour after meals. In essence – all the advice they give you when  you have a 3 month old baby who has reflux. Not quite sure why we’re still here with a 15 month old…but that’s where the questions come in.

so we are home, and she is sleeping well in her own bed, and the abx and steroids seem to be helping a TON. She is happy and bright eyed again. I don’t feel like I am on high alert level anymore. She gets about a fourth of what she was getting before by bottle/mouth. But she is sleeping without alarms. And breathing without coughing. For the first time since the first week of December! I am so happy that she seems to be GOOD, really and truly good for the first time in so long!

And now to just have her hold on to this goodness till we get through the rest of winter!

i am sorry the end of this post doesn’t make a whole ton of sense – i clearly should have stopped typing about an hour ago and just gone to bed!

I have a whole lot more to type and say though – but not for this post.

Sorry it was pretty rambly. hopefully it will still make sense to me someday when i need to refer back to it.

peace out, my homies.

 

t-crest

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