Friday, January 23, 2009

Eye measurement and ear tubes

I'm sorry it has been a while and that I have not done a good job at keeping everyone up to date.  Let's just say that things have been, hmm...crazy is a good way to put it...and I've been, as always, tired.  

So, by reading previous posts, you were aware that Landon was scheduled to be at the hospital bright and early this past Monday morning.  6:00 a.m. to be precise.  The Friday before was Landon's pre-op check-up with the pediatrician.

So, wouldn't you know, poor little Landon started throwing everything up Friday morning.  We mentioned it to the pediatrician, but he didn't seem concerned at that point, since the upchucking came on the heels of a coughing spell.  Landon has remained congested, with periods of improvement, since he was 3 weeks old.  Every now and then, he'll actually cough and get the mess up.  But Friday, he would cough, gag, choke and puke.

This continued on Saturday.  We knew the pediatrician's office closed at noon, and had no clue what would impact it would have on surgery if it didn't improve over the weekend.  We put a call into the pediatrician's office and they recommended that we take him to the ER so he could have blood work done, electrolytes checked and possibly get some IV fluids if need be.  

After being in the ER for a while, an xray technician came in to take Landon for an xray.  She was met with two confused faces, tilted to the side, with the question, "what the...?" written on our faces.  She had the doctor come speak with us, and he explained that it is for pre-surgery purposes?   Well, we wanted to make sure he was okay for surgery, so, sure, why not?  The xray showed that Landon had pneumonia and they wanted to admit him to "monitor" him for low oxygen saturation.  So our hearts begin to pound - is he going to be okay?  Will they still be able to do surgery?  Why has the pneumonia come back?  

Let me interject here that ear tubes and eye measurement are not procedures to correct a life threatening illness. However, Landon cannot see out of his eye.  His eye has begun to wander off and tracts with the other eye only part of the time.  I'm terrified of him loosing use, even though the opthamologist has tried to reassure me that we are not there yet, but the surgery needs to happen sooner rather than later.  The surgery cannot happen without the eye measurement, and the eye measurement has been postponed twice because of Landon being sick.  All of this information is to help explain the intensity of my frustration with the doctor at the hospital that I'm about fill you in on.

Saturday evening, Landon was admitted and we got settled in to the hospital room.  On Sunday, the doctor came in and explained that he was mostly concerned about Landon being on oxygen and pretty much figured since we were there, why not wean him off.  I promptly explained that a pulmonologist was looking into the issue and planned to address it once we got past the surgeries, knowing that was the pressing matter.  The doctor seemed annoyed that we had Landon put on the oxygen Saturday night as soon as he fell asleep.  He didn't know how long Landon stayed down or how low he went.  The doctor called the pulmonologist and told us that the pulmonologist was on board with his decision.   The doctor instructed the nurse Sunday evening not to put Landon on oxygen unless his sats dropped and stayed below 92.  He also said he couldn't give his blessing for the surgery until he had figured out the pneumonia and oxygen saturation issue.  Another xray would be done Monday (yes, the day of surgery) to see the status of the pneumonia.

Now, something that has made my blood boil since Landon's hospitalization with RSV is the number of medical professionals who explain that Landon's baseline oxygen saturation may be lower than most and that may be okay for him and that kids with Down syndrome may have lower baselines...blah, blah, blah.  Knowing what low oxygen saturation does to a person does not make it OKAY to me, especially since he has Down syndrome.

After Landon fell asleep, his sats hovered between 88 and 92.  The nurse tried and tried to do everything she could to get his sats to go up and stay up - to no avail.  She had to put him on oxygen.  I really wanted to scream, "I TOLD YOU SO!"  But, I bit my tongue.  She was just following orders.

Monday morning I awoke to a knock on the door.  In walks the doctor (a different one from Sunday) as well as Landon's opthamologist.  I explained everything that had been going on.   The doctor had a misunderstanding of the situation and our opthamologist explained Landon's history.  I could have kissed her.  If she hadn't come in and interjected, the surgery would have never taken place.  

They said Landon did just fine under anesthesia and when they wheeled him back to the room, he was sitting up and looking around.  The ENT said that he was able to get tubes in both ears, though the left one gave him a bit of trouble.  He had to use the smallest tube manufactured and it was a bit tricky as Landon has teeny tiny ear drums.  The ENT said that the fluid behind his eardrums was thick and gooey.  

After the surgery Landon had the xray.  The hospitalist on duty at that time said that she didn't think it was pneumonia, but most likely atelectasis, or partial lung collapse.  She knew we would be following up with the pulmonologist and that he had home oxygen and a pulse oximeter, so she recommended chest PT and sent us on our way.

I feel like it was a weekend wasted, but at least we got the result we were looking for on Monday - Landon's surgery happened.  And, too, Landon is okay.  The diarrhea continued for a couple of days, but now is gone and he is back to his playful, talkative little self.  

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