Thursday, February 20, 2014

ER & Admitted.Pneumonia to Pulmonary to Cardiology - ROHHAD

Friday February 7th, Miss Haven went to bed at her normal time after getting her shot - around 8pm.  Around 10am on Saturday she was still sleeping and having very labored breathing.  I was home alone with her.  I contacted the other ROHHAD parents on Facebook and then I sent a text to a ROHHAD mom close by.  She reminded me to check Haven's SPO2.  I put her pulse ox machine on and I almost passed out………

Her resting heart rate was around 150 and her SPO2 was dropping into the 70's.  I moved her and moved her….I tried to wake her for the next couple of hours.  Daddy came home around noon and for the next 5 hours he continued doing the same.  By 5pm on Saturday we still couldn't wake her.  It was at that point that I decided to take her to the emergency room.  Once we arrived they immediately took her in.


Here we are waiting in the ER for her port to be accessed. She received two different antibiotics while in the ER room.


We went down to X-ray to check for Pneumonia


Wouldn't you know it…….she has Pneumonia……antibiotics and admitted to hospital.


Within minutes of being admitted Haven falls asleep.  She just could not stay awake for more than 5 minutes at a time.


And within seconds of falling asleep she would desat.


They ultimately put her on oxygen for the remainder of her 5 days in the hospital.  She only had to use it when sleeping so that was nice.


During the day she was able to have Child Life come by and hang out with her.


Haven has a pee issue…she loves to pee….as do most ROHHAD children.  So the nurses weren't moving to Haven's required speed.  They weren't noting how much pee she was producing quick enough so she thought she would do it for them.


Finally after two days she was up and walking around.


Cardiology came in on the Monday and did an EKG to check on her heart.


Then we were wheeled down to follow up with an Echo


Everything looked great and now it's just a matter to figure out why the heart rate is so high when resting.


While in the hospital we were able to go ahead and get her IVIG taken care of


This was great so we didn't have to go back in two days later to do it all over again


While waiting for her respiratory therapist Haven could not hold on.  It honestly did take 2 hours for the therapist to show up and no one else could put the c-pap on her.  For some reason the nurses didn't think to put the oxygen on her.  I had to bug them do to do it.  That was a bit annoying and probably the only issue we had.  I stayed up until 5:30am that night I was so worried they were going to forget her again.


Finally after a 2 hour wait for Resp Therapy she had a c-pap and was sleeping much better.  At one point around 3am she did stand up in the bed and try to jump off.  Luckily I was there to catch her and put her back in the bed.  This has always been my worry about this machine.


Before leaving the hospital Haven was interviewed for the hospital Radiothon.  She has done this previously for Hopkins so she's pretty much a pro.


Again giving her interview.  She also did a round of Bingo and won 4 times.  She's amazing.

We have a follow up appointment with Pulmonary on the 19th - looking forward to that.  She went home with a heart halter on for Cardiology.  She has her follow up with Endocrine on May 1st.  Cardiology follow up in 3 weeks.  Surgery will be scheduled to remove Adenoids and Tonsils.  She will also have a Brochoscopy done and suction out her ears.  



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