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.

Days 131-143 of 365 Days of Thankfulness

5/20: I am grateful that my mom is flexible with her schedule so that I could go into work today and have off on Friday.

5/21: I am thankful that I am continuing to make progress on my weight loss.

5/22: I am grateful that I was able to get alot done at work today as I will be out for the next two days.

5/23: I am thankful that our appointment with the neurosurgeon went well.

5/24: I am thankful that I was able to take today off so that I could help Amye to get ready for her big day tomorrow.

5/25: I am thankful that we had a beautiful day for Amye and Gavin's wedding.  And that everything went very smoothly.

5/26: I am grateful to my parent for watching Riley last night so that Kyle and I could have a night out.

5/27: I am thankful for all the military members who are away from their families protecting this country so I can living safely.

5/28: I am thankful that I was able to get everything packed that I need for Riley hospital stay tonight so i don't have to worry about it tomorrow.

5/29: I am thankful that Riley's surgery went well.

5/30: I am thankful that we had a quiet day in the hospital today.

5/31: I am thankful for the amazing doctors, nurses, and RTs in PICU at Johns Hopkins.  I am especially thankful to the one RT that kept a calm attitude and thus kept me calm when all hell was breaking loose with Riley's oxygen levels.

6/1:  I am grateful that Riley had a good day today!

Still in Limboland

We had an appointment with the ENT on the 9th.  The appointment went well.  As I expected the ENT wants to do surgery to remove Riley's tonsils.  She is also going to look to see whether Riley's adenoids have grown back and if they have she is going to take them again too.  We have scheduled this for the 29th of the month, however the plans may change.

We still do not know about whether the neurosurgeon is going to want to do anything and we won't until we go an see him this Thursday.  I will do a more in depth updated after that appointment because then we should have a full plan, but I wanted to do a quick update today.

Days 119-130 of 365 Days of Thankfulness

5/8: I am grateful for quiet evenings spent with Kyle and Riley.

5/9: I am grateful that we have such a good relationship with our ENT.  She is leaving for another state and was completely honest with us about which of her partners we should start seeing.

5/10:  I am grateful that I am able to work from home on days that Riley has doctor's appointments.

5/11:  I am grateful to whoever came up with the idea of massages.  I went for a 1 hour one today and it was awesome.  I need to do that more often.

5/12: I am grateful my mother on this Mother's Day.  She is the most awesome woman I have had the pleasure of knowing.  And I am lucking that she is my mommy.

5/13:  I am grateful for my father.  Today is my Dad's birthday.  He is an amazing man.  He is always willing to help anyway he can and has taught me what it mean to be generous.  I love you Daddy!!

5/14: I am grateful for my father-in-law.  Today is his birthday.  Thank you for creating Kyle.

5/15: I a grateful to the beautiful weathI er that we have been having.

5/16: I am grateful to Kyle for taking Riley to her doctor's appointment today and handling the aftermath of it.

5/17: I am grateful that I am able to work a flex schedule.  I had to go home early yesterday and I was able to make up several hours today by going into work early and staying late.

5/18: I am thankful for the two strangers that helped me without be asked today at the grocery store.  One held my cart will I tried to get Riley in and the other return my cart to the cart return after I loaded my bags.  It helps to restore my faith in the human race.

5/19: I am grateful that Riley decided to sleep in this morning because it meant that I got to sleep in too.

Limboland

I have been putting off writing this post for a few weeks.  First I was trying to do more research about it and then I decided that I did not want to worry everyone who follows this for an extended period of time.  But we are hopeful that we will have a few answers by the end of the week so I decided to post this now.

Riley has decided that we needed a visit to Limboland. I hate Limboland. Limboland is a place where you know something is wrong whether it is a serious something or a not so serious something. It is a place where you do not have the answer to the most important questions: "How do we fix this?" "Where do we go from here?" "What can we do RIGHT NOW?" "Has is caused damage already?" "Are we going in for another surgery?" "How long will we be in the hospital this time?" "When can I get in to see the doctors I need? No it can't wait a month; she needs to be seen now." "Does she need a trach again?"

These are not fun questions but they are the questions that have been running through my head since I talked to Riley’s pulmonologist. Riley had a follow up sleep study on the April 12th from her shunt revision back in September. And to say it did not go well would be the BIGGEST understatement I have ever made. Riley’s apnea is worst then it has EVER been.

Before I go into the results I want to define a few of the terms that I am going to use throughout the rest of this post.

Apnea: is a period of time during which breathing stops or is markedly reduced.

· Obstructive apnea (OA): is when air cannot flow into or out of the person's nose or mouth although efforts to breathe continue due, the airway collapses completely allowing no air to pass through during sleep causing the individual to snort and gasp for breath

· Hypopnea (H): is breathing that is shallower or slower than normal. This is a partial obstruction, the airway collapses partial it allows some air to pass through, however much smaller and it is accompanied by a arousal from sleep (either a complete arousal where the person is awake or an arousal where they simply come out of REM sleep) or a desaturation of oxygen for 20 seconds of more.

· Mixed apnea (MA): is a combination of central and obstructive apnea and is seen particularly in infants or young children who have abnormal control of breathing. Mixed apnea may occur when a child is awake or asleep

· Central apnea (CA): occurs when the brain fails to send the appropriate signals to the breathing muscles to initiate respirations

· Hypoxemia (Oxygen Desaturation): occur when oxygen in blood drops, meaning an abnormally low partial pressure of oxygen, content of oxygen or percent saturation of hemoglobin with oxygen, in combination with each other or individually (I refer to this as destat throughout my blog)

Polysomnography: (sleep study) is a comprehensive recording of the biophysiological changes that occur during sleep by monitoring many body functions including brain (EEG), eye movements (EOG), muscle activity or skeletal muscle activation (EMG), heart rhythm (ECG), the breathing functions respiratory airflow and respiratory effort indicators and peripheral pulse oximetry during sleep.

Respiratory Disturbance Index (RDI): is one very important measure of the severity of the sleep disorder. The RDI represents how many times per hour breathing stops or becomes very shallow. This index is important because it is often associated with disruption of sleep and dangerous drops in blood oxygen levels.

Arousal: abrupt transition from a deeper stage of sleep to a shallower stage

Continuous positive airway pressure (CPAP): is a treatment that uses mild air pressure to keep the airways open.

Hypoventalation: Abnormally slow and shallow respiration, resulting in an increased level of carbon dioxide in the blood.

Arnold Chiari malformation: is a structural defect in the cerebellum, the part of the brain that controls balance. The lower rear of the skull is smaller than normal, and thus the cerebellum and brainstem can be pushed downward. The resulting pressure on the cerebellum can block the flow of cerebrospinal fluid (the liquid that surrounds and protects the brain and spinal cord) and can cause a range of symptoms including dizziness, muscle weakness, numbness, vision problems, headache, and problems with balance and coordination

Tracheostomy: is a surgically created opening in the neck leading directly to the trachea or the breathing tube. It is kept open with a hollow tube called a tracheostomy tube (or trach as I refer to it throughout this blog).

Now that the vocabulary lesson is over let get back to what is going with Riley.

I think this may be the first time that I might have reached Red Alert status since coming home from the NICU.  I have wondered what it would take to get me to Red Alert status and the numbers from the sleep study seem to be doing it. When I first heard the new numbers I was freaked out but then calm came over me.

I told myself that we would figure it out. We would circle the wagons, gather the medical team (pulmonary, ENT, and neurology), make a plan, and fix this. So got on the phone and called the ENT to set up an appointment with her. I emailed the Neurosurgeon who we already had an appointment with for 5/23 to see if he wanted us to come in earlier or wanted any more tests before we came in. ENT can see on 5/9, and Neurology did not think that we needed to come in sooner. He also did not want an additional testing. I am on Red Alert and her doctors don’t seem as concerned.  Now I love Riley’s ENT, Neurologist and the Pulmonologist, but I wanted to get in and be seen as soon as I got the results.  But that would not be the case.  So instead I started searching online for my own answers. I did not find any, so I resigned myself to waiting.

When Riley was in the NICU she had 4 different sleep studies all with around the same results. I will these numbers with the most recent results.

12/28/09: RDI- 68.7/hr. (obstructive apnea (OA) -38.6/hr, hypopnea (H) -15.6/hr, mixed apnea (MA) -3.0/hr, & central apnea (CA) - 8.4/hr)

2/12/10: RDI- 40.5/hr. (H-35/hr, MA-4.9/hr & CA-.3/hr)

3/13/10: RDI- 59.6/hr (OA -33.4/hr, H-22.7/hr, MA-3.5/hr & CA-1.7/hr

3/16/10: RDI- 52.5/hr (OA-30.9/hr, H-17.5/hr, MA-3.1/hr & CA-.9/hr

The sleep study after the trach was placed was the best one:

5/6/11: RDI- 5.7 hour (OA-.2hr, H-2.2hr, & MA-.7hr)

Then we had a repeat test in January of last year that showed the apnea was coming back. Our ENT decided that it was time to take out Riley’s tonsils and adenoids; though when she went in Riley’s tonsils were not big so she left them in.

1/20/12: RDI- 16.6hr (OA-2.0hr, H-10.3hr, MA-.8hr, & CA-3.5hr

Then we had another follow up last summer that showed that it was still not getting better so we tried Riley on the CPAP machine. Which was not a success. Shortly afterward Riley’s shunt stopped working. It was then thought that the apnea had come back because the shunt was not function properly.

7/2/12: RDI-26.6/hr (OA-14.0/hr, H-10.0/hr, MA-1.6/hr, & CA-1.0/hr

Then we got the most recent results….

4/12/13: RDI-105.7/hr (OA-6.0/hr, H-98.2/hr, MA-1.3/hr, & CA-.2/hr.)

Yeah they are as bad as they look. When you look at these the RDI is the total number of times Riley’s breathing either stops or is shallow to the point where she rouses or has a destat. The other numbers are a breakdown of the 105.7/hr. So basically 6 times an hour Riley is not getting any air going through her airway, 98.2 times an hour her breathing is shallow enough that she is rousing from a deep sleep (33.7 times out of the 98.2) or her oxygen level is too low.

The hypopneas are more concerning then the full obstructions at this point. Every time that you are roused from a deep sleep to a shallower level of sleep your blood pressure goes up. And every time your blood pressure goes up you increase your chances of developing heart and lung problems.  So Riley’s blood pressure is INCREASING 33.7 TIMES AN HOUR. Come on…Really.  33.7 times an hour!  THIS IS A PROBLEM.

The other thing that is not expressed in these numbers is Riley’s CO² levels.  It is normal to have CO² in your blood; a normal level is between 35-45mm of Hg. Anything above 50% is considered hypoventilation. Riley is peaking at 65% and 68% of sleep study above 50%.  So this is bad.

The only good news in this study is the number of central apneas has gone down, meaning that it is not a problem with Riley’s brain telling her to breath.

So at this point we do not have a plan of action other than trying to get Riley use the CPAP machine again.  We have ordered a new CPAP mask because the one we have is not working for Riley.  I will do a separate post about the CPAP machine. And Riley masks once we get the new one in.

Wordless Wednesday

One of the other blogs that I read does this wordless Wednesday.  I thought I might try to start doing this. So this one is not completely wordless.

"Typical' Toddler

I spend alot of time thinking about how different Riley is from other children her age.  But this weekend and tonight she reminds me how the similar she is to children her age too.

On Sunday we went over to the playground that is across the street from our house because two of the other kids who are around Riley age and understand Riley's differences were out playing. After swinging on the swings and sitting and watching the other kids run around (Riley loves doing this) it was time to go in and have dinner.  So we said goodbye and the other kids were going in too.  Well Riley was not ready to go in.  She is threw a fit.  She pulled my hair and tried to bite me.  It made me realize that this was behavior that other "typical" 3 years would do.

Then tonight at bath time Riley decided that Mommy needed bath too.  She would splash around then turn and smile at me, then splash me again.

She amazes me everyday!