Trach scare x3

For the past two days, Hannah has been more junky than usual trach-wise.  We felt like an infection was brewing because her secretions were no longer clearly and liquidy but were becoming greenish and thick.  We were also starting to suction more often than usual.

Last night, Hannah woke up at 1 am.  She had been completely restless through the night, and I wasn’t surprised when she finally woke up at that time.  What I was surprised with was that she did not go back to sleep until 5 am!  She was restless, uncomfortable, and nothing I could do would comfort her.

Around 4:45 am, she started whimpering and crying out (in her silent cry), so I knew that there had to be pain involved as well.   I woke Daddy up at that time to have him get the Motrin while I rocked Hannah in my arms, singing, caressing, whatever I could to help her feel better.  It was obvious she was feeling horrible by then.

The motrin finally kicked in around 5 am, and she fell right asleep.  Thank goodness.

Because we could not get Hannah in to see anyone at her pulmonologist’s office, even though I had been calling for two days (Grrr….. vent for another day), we ended up setting up an appointment with her pediatrician for 3:15 pm today.

Hannah was definitely not herself all day today.  Her nurse told me that she only want to be cuddled and snuggled and did not want to play.  She was also pulling at her trach a lot, so we were leaning towards either trachiitis, strep, RSV, or a sore throat.

Hannah crashed about 30 minutes before we had to leave for her appointment.  I was putting her diaper bag in my car when her nurse ran out to the garage with a gasping Hannah in her hands.   Hannah had started to turn blue and there was a bit of blood around her trach-less stoma.

Hannah decannulated herself.  While her nurse was getting her socks on, Hannah grabbed her trach tie and yanked out the trach.  Normally, the nurse could get it back in, but not this time.  It had been swollen from whatever illness she had plus Hannah started panicing and having a breath-holding spell.  The stoma (hole) was closed so tightly, she couldn’t get the trach back in.  She ran to me for help.

I had the nurse get a 3.0 size trach (one size smaller), and it took a lot of work to get that one in.  But we finally did it.  It was a huge relief when a huge splash of blood-tinged secretions came shooting through the trach.  Then, to make matters worse, as we were trying to get the trach ties hooked on to her trach, the trach came out again!    Again, we rushed to get it back in even though she was so panicked again and held her breath that it was tough getting it back in.  Finally we had her trach in and her ties tied.  We waited about 10 minutes so Hannah could catch her breath and her color returned.

It was scary because Hannah was having so much difficulty getting air in that she was starting to turn grey around her lips.   Even if we called 911, they would not have gotten there in time, which is even more scary!  We need our damn oxygen already!  This is why!!

We went to the pediatrician’s office and shared what happened.  Hannah started having breathing issues again, and her pulse ox was hovering in the 91s to 89s.  It took a good five minutes before it started going up again.   At this point, we were bracing ourselves for a possible overnight hospitalization in order to get her oxygenation up and find out what was going on.

They did a strep test (negative), RSV test (negative), and took a culture to test for trachiitis.  They started her on Cipro as a preventative just in case it was trachiitis again  (cipro was the only thing that worked the last two times).

Our nurse practitioner said that she was going to take over getting us the oxygen at home (and a pulse ox).  She believes that every trach’d kid should have oxygen nearby.   She took the information from me and said she will take over getting us the oxygen and to call her tomorrow for an update.

This is more of a relief than you realize, because I have been trying for TWO MONTHS to get a letter of medical necessity from Hannah’s pulmonologist office…and I STILL have not gotten one!  (again, vent for another day).   And even before our insurance change, I had been trying to get it since we moved here but Aetna refused unless Hannah’s O2 went below 88 documented.   Well, how the hell can we tell if you won’t give us a pulse oximeter!  (okay, some vent now, and the rest for later).

After we returned home from the pediatrician, we decided that since Hannah was calmed down that we try switching out the 3.0 backup for her regular size 3.5 trach.  Not a good idea.   Once we pulled the 3.5 out, she started screaming, crying, and breath-holding again.  Daddy then couldn’t get the 3.0 back in either.  Finally, I tried and was able to get it in.  Again, blood-tinged secretions blowing out of a trach is a very welcome thing after an event like that.

What we think is happening is that Hannah has a sore throat brought on by whatever illness she has (cold or trachiitis).  So each time the trach rubs against the sore throat, it is making it 50 times worse.   It also probably scraped the sides of her sore throat each time she was decannulated or we tried to change it out, which is why it was blood-tinged.

We are going to wait until some time tomorrow to put back the 3.5 size.  We have to be careful because if we wait too long, we won’t be able to put it back in because her stoma will get used to the 3.0.  She needs the 3.5 size hole to make it easier to get her secretions out.

Hopefully she has a better night.  I hate when she isn’t feeling well because she can’t tell us what is wrong.  But seeing her actually whimper in pain or discomfort is a new thing, and it broke my heart.