Hospital stay updates

These are the updates that I have been putting on facebook.  I decided to get them together in one spot in case anyone missed any of them.

5/30/13:
For those of you that don't know Riley ha her tonsils out yesterday. She is in pain and not her normally smiley self as to be expected. We will be in the hospital until at least tomorrow. Please continue to keep her in your thoughts and prayers

6/1/13:
On Wednesday Riley went in to have her tonsils taken out, the surgery went fine. Thursday night she developed a fever and vomiting, she was running a fever all day on Friday. Friday late afternoon, she took a turn for the worst. Her oxygen levels dropped very low and the doctors and RTs tried everything they could to bring them back up. It was decided that Riley needed to be sedated and put on a ventilator. We are currently in the Pediatric ICU at John Hopkins, and will most likely be here for at least a week.

Riley is doing better today but she is a very sick little girl. Right now the only thing that we really need to good thoughts and prayers sent Riley's way. She is a strong little girl and we and the doctors are confident that she will recover from this without any lasting effects.

6/2/13:
Not much change with Riley today. She is still sedated and on the ventilator. Katie and I are giving her lots of love, sent from so many people. Thanks for all the prayers and kind words. We are staying positive and are thankful that the doctors think that when she recovers there will be no lasting effects. Thank goodness for that

6/3/13:
We are still in the PICU and still on the vent. They have been able to lower some of her setting, but it has been slow process. Riley has developed a fever and her heart rate has been high, but the doctors are trying different things to get the fever under control and when her fever is down so is her heart rate. They may be switching her to a different vent either today or tomorrow. Small steps is all we can ask for.

I wanted to thank everything for your thoughts and prayers. They are greatly appreciated and needed. At this point there is not really anything that we need, other then for you to keep us in your thoughts

6/5/13 (8:38 am):

Riley had a pretty good night overnight. Her heart rate, blood pressure, & oxygen levels are good. They did decide to give her another unit of blood as some of her levels were down. She seems to have liked it as her stats seems to be stable.

She is still on the vent and requiring about 60% oxygen to keep her happy. The doctors still have her heavily sedated, but she is moving in response to being touched. When she gets over stimulated she will pull away from you. So it is a constant debate whether to be standing at her bedside holding her hand or just sitting quietly next to her.

Riley's chest x-ray from yesterday did look a little better, but we still have a ways to go. I have not seen the x-ray from today yet as the doctors have not yet rounded.

We have been talking with the RTs and doctors and will probable be in the hospital for about a month. They are also saying that she may have asthma after this is all done, as any time you blow air into the lungs it does some damage and your lungs are never prefect again.

The RT also told us that he thought would probable come home on a biPAP machine. Which is like a cPAP, but helps you when to breath in AND out.

6/5/13 (12:40):
Her latest chest x-ray was worst, the bottom of her lungs has collapsed.  They started her percussion chest PT every 4 hours when she gets her albuterol.

6/6/13:
We had a good news / bad news day today. She is still on the vent and requiring about 50% oxygen to keep her happy. The doctors still have her heavily sedated, but she is moving in response to being touched. 

Good News: Her chest x-ray was better this morning. Good News: The doctors have been able to identify the virus (Human metapneumovirus) that they believe Riley had before surgery, but was not showing symptoms of until after surgery. So now we know why crashed so hard, so quickly on Friday. Bad news: The virus just has to run it's course. Good news: We are already about half way through the virus' course.

Bad news Riley has picked up a bacteria while in the hospital (an unfortunate consequence of being in the hospital alot of the time). Good news: The antibiotic she is on seems to be help to fight it.

Bad news:The medication that Riley has been on for sedation and pain is a narcotic so she has to slowly have it replaced with another medication then we will have to ween off the new medication too. It will be a bit of a long process.

Riley is still in for a long recovery. We will be in the PICU for a while still and the hospital even longer. Please continue to keep us in your thoughts and prayers.

6/8/13:
Riley had a pretty calm day today.  

We are still on the vent, but they have been able to lower a several of the settings.  They are planning on lowering even more tonight.  

The doctors have started to ween her off some of her sedation so she is moving around more.  In typical Riley (aka Houdini Bodenhorn) fashion she was actually able to get out of one of her restrains today during rounds with the doctors.  Luckily we caught her before she could do any damage.

Riley's coloring in looking better, her heart rate, blood pressure, and oxygen levels have all been good so far today.


Please continue to keep us in your thoughts and prayers.

6/13/13:
Riley Update:
The last 60 hours for Riley have been very good. Her fever has broken, her heart rate and blood pressures have been good. How oxygen levels have been pretty good. In the last 24 hours the doctors have been making good changes to her vent settings. 

Yesterday's chest x-ray look better, there had not been much change to it for the days prior. I have not seen today's x-ray or heard the plan for today yet as the doctors have not been on their rounds yet. 

But we are moving in a good direction. Please continue to keep us in your thoughts and prayers.

6/17/13:
It has been a really good 72 hours.  

The doctors had planned on taking Riley off the vent on Saturday morning...  Well Riley decided the she was done with it on Friday night.  When she woke up from the heavy meds she had been on and started fighting the vent.  The doctor made the decision to pull the tube early instead of medicating her even heavier.  So at 10:30 pm on Friday night just over two weeks (by about 4 hours) since the tube had gone in it came out.

Friday night was a rough night with almost no sleep for either Riley or I as she was very uncomfortable (I think I would be uncomfortable too if I had a tube in my throat for 2 weeks) and would not let me out of her sight.

Saturday was the first time I was able to hold Riley since this all started and she I am both took an hour and half nap.  When my mom got here we switched places and I napped on the couch for 5 hours while Riley slept on my mom.


Sunday was more sleeping, but today PT came in and worked her for a good hour.  And by the end she was much more alert, but also very tired.  Riley has been able start taking food by mouth.  

We are ready to get off the PICU floor but are waiting for a bed. Thank you everyone for your thoughts and prayers.

6/20/13:
Riley is doing really well. We were moved to a regular floor. The doctors are slowly weaning Riley off the medications that she is on, at the rate we are going she should be off all her medications in 12 days.

Riley is still on some oxygen, but they are going to try turning in off tomorrow.

Our biggest hurtle right now is Riley's feeding. She is having a hard time with liquids, so tomorrow we are doing a swallow test to see what is going on when she is drinking.

I got my first Riley hug last night it was wonderful. She is starting to act more like herself everyday. 
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6/24/13:
We are very happy to have Riley home. We were released from the hospital today after being there for 27 days. Riley is still requiring oxygen during the day and we came home on a feeding tube that is placed in her nose, but WE ARE HOME! Thank you to everyone that has been praying and sending us wonderful thoughts.