Medical Incredible

Uh, sorry I kind of left everyone hanging...I really meant to come back and blog to update our progress...

Don't be mad at me...just think of it as my way of trying to add to the suspense and intrigue to the story, okay?

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That, and the fact that we had some computer problems. Well, in truth, the problems only lasted for about a week but, I am going to play the, "computer problems" card because technically, I can. Heh, heh, heh...that could be considered a play on words, get it, "technical" problems.

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Okay, fine...it wasn't funny...and now on with the story...

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As mentioned in the previous post, (you know, like over a month ago) John's apnea monitor alarming four times in under two hours is what took us to the hospital on August 2nd. The apnea monitor company came to the hospital to trade out the monitor that we had been using and gave us a new one. The monitors are kind of like little computers and are able to hold onto all of their data so that it can be analyzed. The company downloaded the information and found that only two times out of all of the eight or nine times the alarm had sounded in the previous month were, "true apnea spells".

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Well then, as long as it was only two true spells.

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Too bad that it only takes one true apnea spell to do you in.

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The attending physician told us that many things can cause apnea spells. He explained that he thought that acid reflux may have been causing John to stop breathing long enough to make the monitor alarm.

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The truth is, as amazing as modern medicine is, (and believe me, I am inexpressibly grateful for modern medicine) it is not and never will be an exact science. There is no way of really knowing what exactly caused those two, "true apnea." spells.

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My feelings have changed about our little apnea monitor. When I was first went through the training on how to use it I remember being told that many people have a hard time parting with the monitor once their baby is old enough and strong enough not to need it anymore, because of the peace of mind that it affords them. I sat in the training session thinking to myself that I will never be one of those people. I am not sure why the monitor made me so fearful, perhaps I was intimidated by the wires that I would have to contend with or the incredibly loud alarm...whatever it was, I remember scoffing at the idea that I would miss it when the time came to turn it back in. The gentleman from the company that supplied the oxygen tanks and the apnea monitor told us that he has worked with parents that beg to buy an apnea monitor rather than live without it. We began to laugh in that meeting when he shared that one mother refused to let the monitor go even though her baby was too big for the belt that holds the electrodes in place to fit around his chest anymore. He told us that the mother had to adhere the electrodes to her baby's skin with band-aids. He chuckled as he explained that when he visited the home to deliver supplies the baby was practically big enough to answer the door himself.

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Wanting desperately to laugh at that moment I chimed in and quipped about how when that baby was old enough to ride a bike he would have his apnea monitor trailing behind him down the street.
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We all had a good laugh. I thought it was very funny.

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That is, until I realized that I have become, "one of those people."

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John is not old enough or strong enough at this point to be without the apnea monitor but I dread the day that we will be without it. I, just like that mother that I mocked (and feel badly for mocking, now), want to hold on to it forever.

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I want John's Kindergarten teacher to have to call me and ask me how to turn off the monitor if it alarms.
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Heck, I want John's future wife to have to call me from their honeymoon locale to ask me how to turn off the apnea monitor if it alarms.

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I do admit that my heart stops each time that alarm sounds, though. The screaming sound that monitor makes has aged me. I was telling a friend the other day, how John has an, "actual age" (starting from when he was actually born) and a, "gestational age" (starting from his original due date) and how we are supposed to take into consideration both when we determine if he is hitting developmental milestones when he should.

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I would say, because of that monitor ,that my gestational age is about...oh...79.

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It alarmed recently while I was driving and I am so grateful that, somehow I managed not to crash. I called Mike and told him something along the lines of, "Not to brag honey ,but I consider today a raging success...I have not gotten anything major accomplished, but the fact that I didn't crash when that thing screamed at me is, in my mind, a job well done."

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The big blessing that came from John going back into the hospital that day was that his blood work revealed that the potassium level in his system was at a, "critical" level. Too much potassium in the body can cause potentially fatal heart problems or other organs in the body, like the liver or the kidneys to fail. Thankfully, his medication was able to be adjusted to bring his potassium down to a safe level.

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The hospital that I delivered at and that John was in the NICU at is a different hospital than the one that John has been admitted to the two times he has had to be re-hospitalized because his pediatrician is affiliated with a different hospital than my OBGYN. The new hospital is considered a, "teaching hospital" and in truth, it has taken a bit of getting used to for me. When the doctors make rounds in the new hospital there is a whole crew of residents and doctors that are in various learning stages of medical school that accompany them. There was several times that I was tempted to say, "While I appreciate that this is a teaching hospital, do all 12 of you (I am not kidding about that number) have to be in here at the same time?" At one point the attending physician heard what he called a, "crinkle" in John's lungs and he wanted all of the medical posse that was with him to take turns listening to the sounds that John's lungs were making. All 12 medical personnel lined up and one by one took turns listening to his lungs. Some were huffing on their stethoscopes in hopes to warm them up but I was concerned that they were putting all manner of germs onto my baby's chest by doing so.

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It actually was kind of funny to see them all lined up, if it weren't so disconcerting to me and kind of sad.

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This last hospitalization was hard for me also in that, it seemed like some of John's doctors' opinions contradicted each other.

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I am so grateful for a gentleman in our ward that...well...he is too humble and what not to fess up to this, but the word on the street is that he was Resident of the Year this year, and is going to be the Head Honcho resident (I think it may be called Chief Resident), next year...came into John's hospital room and took over an hour to explain things to us in detail even though John was not his patient.

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I called his wife Aleasha and told her, "Hey, there is this good looking guy in John's hospital room, right now."

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To which Mike called out, "And Josh is here, too..."

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Seriously, thank you, "Dr. Resident of the Year, Head Honcho Next Year (that I think is called Chief Resident), but is too humble and what not to say so, but the Marshmans found out anyway, Josh Smith." You helped us so much.

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We have nicknamed John, "Our Sweet Little Old Man" for a host of reasons...all of them dealing with the fact that he is experiencing things now that generally would be part of daily life for someone much older.

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He has so many doctors that we had to create a notebook just to keep his appointments straight.

He has a list of medications longer than his arm, literally...

He has to take daily breathing treatments. I do love the penguin nebulizer, though. I squealed with delight when I saw that it was cute, rather than, yet another scary looking piece of medical paraphernalia . The man from the medical company that supplies the nebulizers said the cuteness was a marketing ploy. I am a slave to good marketing.

Lookie at the little igloo carrying case.

Another adorable piece of good marketing is the turtle mask for his breathing treatments. The turtle is for the smallest patients. I heard that the next mask larger in size is a fishy.

Of course, his nasal cannula is something that most patients with lung problems don't wear until much later in life. It took me a while to get used to taping his nasal cannula to his face. I have to use thick pieces of the pink surgical tape because he can accidentally rip it off otherwise.

You usually see signs about the use of oxygen on the doors of the homes of someone much older.

This is the only picture I have thus far without John's nasal cannula on. Our camera is dying and I have tried to snap several pictures when I am changing out the cannula but the camera often won't work when I try to get the picture. I licked the camera batteries to get this shot. He has to wear his cannula all day but the doctor said he can have it off for a 5 minute span to wash his cheeks.

He smiled at me so sweetly the other day...I tried to capture it but the camera quit on me before I could. I think he is going to have brown eyes.

The truth is, I cannot adequately express how greatly we have been blessed throughout this whole ordeal. The prayers, and fasting in his behalf and having his name placed on the temple rolls are truly, truly helping John.

We have been so blessed to be right where we are in Georgia, too. I go to appointments at the hospital all of the time and sit in the waiting room with people that have had to travel upwards of 4 hours one way to come to the Children's Medical Center at this hospital that we have the good fortune to live only 10...or 15 minutes, depending on who is driving, from.

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So...hopefully I will update more rapidly next time. Don't hold your breath, though. Well...feel free to hold your breath...I would be happy to supply you with some oxygen if you collapse...I'll even give it to you half price. I'm gracious like that.

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