Inhale, Exhale

Better known as “breathing”. Taking a breath. Having oxygen exchanged for carbon dioxide in your lungs.

you take for granted that all of this AMAZING stuff happens when you inhale and then exhale – indeed, how often do you stop and even have to focus on inhaling or exhaling? (Assuming that you aren’t currently suffering from a cold/sinus/allergy/asthma type illness, that is). I mean really – do you KNOW how awesome it is that things work RIGHT most of the time??? I didn’t – and still really don’t get all of it. But I have learned enough to know that when one small part of this process is interrupted, it can definitely start causing a lot of big wreckage further down the line. This is kind of where we are at with Miss KQ.

My thoughts are a little scattered on this all tonite – probably because there is just SO much to sort through and try to process and turn into understandable info. Basically – she is doing “ok” – as in she isn’t in any kind of downward spiral at the moment. She is playing and laughing and learning new things every day. For all intents and purposes, she seems like a normal healthy baby from the outside. Unfortunately, you can’t always judge a book by its cover though – and you can’t always judge a Kendall by her few good daytime hours. Starting last week – almost exactly one week off of antibiotics, 10 days after being in the hospital for her last respiratory illness, she started up with MORE cold symptoms. And while I was about 97% sure it was (is) just your basic average common cold – it REALLY started taking a toll on her little body. What does that mean exactly? Well – it started with something so small that probably no one else would ever have noticed it – but it just seemed so ODD to me – her right eye was purple-y and swollen. It was really noticeable in pictures that day, and I could not think of any reason why she would have a black eye – she hadn’t banged it, there wasn’t really a bruise there – it was just the shadow of the puffiness. The next day it was the other eye that looked the same way, and that nite her pulse ox alarm kept going off because her HR was in the 190’s (while she was in supposedly deep sleep). She was satting well (keeping her oxygen saturation number up), so I just raised the parameter on the alarms and tried to get some sleep myself. The next day she started in with the respiratory symptoms and that’s how i knew everything else was just signs of her body trying to fight something.

when she is getting sick, she does pretty much what you would expect: her nose starts running and doesn’t seem to stop, she gets cranky, she sleeps a lot more, she coughs, she doesn’t want to eat. AND she does things that you wouldn’t expect: her runny nose looks eerily like it MIGHT be her formula regurgitating up and out her nose, she goes completely rain-man cranky over the craziest little things (changing her diaper, giving her too many pieces of cereal on her tray,  putting shoes on/taking shoes off, take your pick), she goes from sleeping 17-19 hours a day to 20-22 hours a day, her cough often makes her gag/retch/vomit, and not eating means that the little food she is taking in orally causes major choking episodes, the food that goes into her tube either comes back up or causes tummy pain, so it has to be diluted with pedialyte or changed over to straight pedialyte. All of this combines then to make more problems in that she then will either be peeing out too much fluid (and thereby looking more puny/bony), or she is retaining water and not peeing for the whole day (making her look nice and chubby, except it’s all just water puffiness!). We were supposed to follow up with nephrology last year after her Feb/March admissions – but got so sidetracked by all her GI issues that kidney issues took a back seat. We know that there is SOME dysfunction going on in there (as evidenced by every set of labs we draw on this kid), but aren’t sure how it all ties in with the metabolic stuff. I am hopeful that our marathon of appts next week can help us get some direction in this area.

So anyways – that is kind of what is going on for the last week – nothing that by itself is horrible, life-threatening, or ER worthy – but it is an overall picture of many processes not quite working the way they are intended to, and me feeling like I don’t know which hole in the dam to plug first, or really, how to even go about plugging dam holes in the first place!  By Thursday she was vomiting bile, having a lot of bile and pressure come spewing out her g and j tubes, having the high heart rates but without the good sats, and was just a sick baby. i spent Wednesday nite and Thursday nite on “ER watch”, where I am making plans B-G about how to get her to the ER, which ER, what to do with the girls, etc. – and so by Friday I knew that if i didn’t call and talk to SOMEONE, that I would be regretting it by 4 am Saturday morning when i was once again on ER watch! So I called Margie, Dr. A’s dear long-suffering nurse and left a message something to the effect of  ” Hi Margie! i am only calling cause it’s Friday and we all know how kendall likes to get sick on the weekends! So if i call, then she’ll be fine, and if i don’t call then she’ll be sick so I am calling! here’s what she’s been doing – I know Dr. A isn’t even in the office today, so there, I called, you know, we will see you on Monday for our regular appt!”   She called me back about 3 hours later and told me that oxygen would be delivered that afternoon.  She had paged Dr. A, told him what i told her, and he said enough is enough – she needs the support.

Sure enough – that evening, Ben and I were officially “oxygen therapy” trained on how to use an oxygen concentrator and portable oxygen  pumps for Kendall. I guess i was thinking that Dr. A meant “at nite, if she is having a hard time with sats and/or her heart rate, then turn it on super low, only going up if she isn’t responding”. I knew it would help keep us out of the ER for the weekend, but really thought we might get in to his office on Monday for our appointment (which was just our post-hospital follow up) and that he would say that she didn’t really NEED it, and we could send it back. I think Ben thought even less than that. Kendall HATES the nasal cannula (well she hates anything on her face or hands, all the time, any time) – we found it around her neck after an hour of trying to get her to sleep with it – so we took it off and just prayed that she would be ok without it. Tried to not give it another thought.

Until today’s appointment.

Basically I came out of the office today with four main takeaways:

1.) The oxygen is needed. She needs it to support her overall energy levels, to boost her breathing, to help the metabolic processes that are being disrupted by either the MMA or just her current illness. Bottom line from the big man: “I ordered it for a reason – and that is not to just sit around your house. Use it on her, use it liberally, and HELP her get better and stronger.” Ok! Point taken!

2.) Her lung issues/recurrent colds are more than likely caused by aspiration. either from above (when she is attempting to swallow) or from below (when she is vomiting/retching as a reaction to who knows what – metabolic stress? reflux? pluto not being a planet anymore? take your pick!). WHERE it’s coming from isn’t really the issue. We’ve done what we can to stop it from coming UP (the fundo surgery and now j-tube feeds), so we need to look at eliminating it being aspirated (swallowed into the lungs) from above. which means taking her “NPO” (no more bottles, possibly no more food by mouth). He is willing to wait a week to enact “PLAN A” – which is that her video swallow/follow-thru test next week in milwaukee shows that she IS aspirating, and her GI will direct the orders to go NPO.

3.) Plan B would be that the test “appears” normal (meaning that she doesn’t directly aspirate or reflux the food during the 20 minutes of the test) – but we decide to do a 2-3 month trial of making her NPO on our own (with the blessing of all of her doctors), to see if we don’t see improvement in her lung issues. Dr. A is pretty confident that either way – Plan A or Plan B – that we are dealing with an aspiration issue here, but that if we take her NPO for a year or two, it will protect her lung tissue from any further damage (and is hopeful that because she is so young that any damage she DOES have right now can be undone because lung tissue is still regenerating at such a fast pace the first 3 years of  life), it will eliminate these seemingly non-stop respiratory illnesses she is dealing with, and will allow her to build her strength and coordination up to be able to re-learn how to properly eat/swallow/chew without needing the Heimlich once a day (at least!). It sounds like an awesome theory. But I know it would be devastating to her (and us) to have to take her NPO. she LOVES eating. loves it. loves the taste, loves being with us at the table, loves the social interactiong of it – everything. It would be very hard to deal with. BUT – like Dr. A pointed out – at least we have SOMETHING we can try. Many kids do’nt even have a Plan A OR a Plan B. So I know I should be thankful that we can at least TRY this.

4.) the last part of our conversation was about the fact that, while he feels the chances are slim, there IS still a chance that this could just be her baseline – that the hypotonia (muscle weakness) in her trunk/accessory muscles (used for breathing), in the smooth muscle of her diaphragm and lungs – that its just TOO much for her body to ever be able to really breathe/cough/function right. Her heart might be more of a culprit here (again – hypotonia affects the muscles – heart being mostly muscle). There are a few other darker paths that we may need to go down if we get to Plan C – but for right now – we are very hopeful that one of the first two plans will help get Kendall on a good path. One without a lot of food on it – but a good path nonetheless!

So that’s what I am working through tonite. I am sorry if it doesn’t make much sense. It got a LOT later while I was trying to finish this up…

and I still have a good 30 minutes of tube attaching, cannula taping, food preparing and machine priming ahead of me…..

Hoping that tonite you are all inhaling and exhaling without much ado. Thank God for that awesome ability the next time you think about it.

Peace out.


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  1. Terra,
    I know first hand how difficult it is to accept breathing supplies in the house and seeing them on your kiddo for the first time. It’s heart-wrenching. It feels like you are losing a little…maybe even a lot in the whole guessing game of how to take care of them. You wonder when they can get off O2…and worst, IF they will get off O2. I know how hard it is.

    I say that to lead into how wonderful the addition of O2 has been for K4’s little “separated at birth” buddy. Nathan has thrived with oxygen. The differences came about a week after he started it 24 hours a day and was noticed by everyone with comments like “he doesn’t look so sick anymore” and “there is a spark in his eyes again”. It is clear that it helps him so much…it has literally been the best “medicine” in the long list of meds that he takes.

    As for getting used to it, it is like wearing glasses. At first, they are annoying and cumbersome. After a while, you never really notice it is there. It will take a little while for Kendall to get used to the cannula…we used tendergrips and bandaids for about 3 months until Nate got so used to the O2 that he didn’t need the tape anymore. Even at night now, it stays on without taping. You will get there.

    After a while, it becomes part of life. It’s still annoying from time to time, but you will see the remarkable help it gives…and it becomes part of life: trying not to trip over the tubing, listening to the gentle hum of the concentrator, making sure you have enough tanks for the upcoming trip. A new normal…just not one you would expect.

    Hugs girlie, I know this is tough.

  2. What a blessing to have Amber in your life!

    Praying for all of you and hoping, hoping, hoping these are some answers we’ve been praying for.

    K gave me the sweetest smiles on Sunday night. I treasure them.

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