ENT

We had an appointment at the ENT yesterday. Eva was given another hearing test that she failed again.  I was told that she had mild to moderate hearing loss and that there is fluid in both ears.  Let me explain how this test works. First, she placed these hollow tubes in the ear - one at a time - and I would assume the machine blew small amounts of air in them to see if there were any vibrations.  There was little movement. from what the computer read. Then, we were directed to go into a 6 * 6 box that was soundproof.  In the middle sat a chair facing a corner.  In the upper corner facing was a mechanical stuffed sheep.  On our right was a 1*1 black box about 3/4 way up from the floor with a mechanical dog in it and on our left was another black box with a mechanical raccoon in it. There were three visible speakers under each animal. When the test began, the hearing operator would be on the outside of our soundproof room with headphones on looking through a window at us.  She would operate the animals and would wait for Eva's response to look towards them.  The speakers would be at different tones and volumes.  Because Eva was on my lap the whole time she seemed fussier than normal but I can jut assume - new place, strange person looking at me, mom is behind me, weird object moving around me, where did Abigail go? We finished the screening test due to "uncooperation" and was led into an examination room.

After waiting for the Dr, he took a quick look into both ears and stated that she has fluid in them.  He also stated that she would be a prime candidate for ear tubes.  I needed to be sold on the idea so I asked one question - Give me reasons to get them - he stated 1- it will reduce or possible do away with ear infections (plus!) 2 - It is only a 5-10 minute procedure with laughing gas administered (plus) 3 - her speech progress will improve (plus!).  I asked if there were any complications.  He stated that she could have a slim chance of infection but if we continued to give her the ear drops three days following the procedure we can prevent that from happening.

So, I made the appointment for February 13th. 

Information : http://www.entnet.org/HealthInformation/Ear-Tubes.cfm
For a picture go here: http://www.maucorp.org/web/ent-and-surgery/myringotomy.html

So Far So Good four Now...

We have been home now for four days and so far no fevers.  She did have a slight runny nose and we continued the abuterol for two days.  It is nice not having to fight with the treatments anymore.  On a different note, I did talk to another parent that has 17q.  She lives in MA and her son will be 14 this year.  He has had cardiac surgeries which I feel very fortunate that we do not have to go through that.  She also said that he never had any seizures.  Also, he walked at age three and talked at five.  He started school at age seven but did not do well academically.  He struggled strongly in reading and basic math concepts.  In sixth grade he started going to a special needs school and he is making progress.  He is now in 8th grade and he can add and subtract and has a first grade reading level.  I ask her the million dollar question and that was where did she see him in ten years.  She responded by saying "still at home but we have looked into group and assisted living for his future".  She did invite me to meet them when I make it out east sometime and she would like to meet Eva. 

When I talk to other parents it is a reality check.  I  feel sorry for other parents that have to go through with this disorder. I know that I am one of them but because I live day to day I don't think that I want to face the reality that will eventually come my way.  I will just continue to work through every problem as it comes and find other sources that will be beneficial for her.  For now - I will continue to watch Nemo :)

Update from Home - YEA

So we arrived home by 1:30pm today.  I received a script for diastat with very explicit details on how to administer it.  We were also told to continue the abuterol every four hours. I made an appointment to meet with our PCP tomorrow.  Also we had missed our appointment with our orthopedic yesterday,  I called them Monday to let them know I was at the hospital - where their office is located.  His nurse spoke with our resident doctor and they agreed to have an xray of her pelvis area.  I was relieved to hear that the ortho doctor would look over the xray and come speak to us about it on Wednesday.  So today when he came into the hospital room, I informed him that her femurs were different lengths. He examined her and stated that we would be getting a call from his scheduler nurse and Eva would again have to go under and have the die shot in the hip because her femur ball which is next to the pelvis has not yet developed all of it's cartilage. Usually they can see it on an xray but because of her delays, she doesn't yet have that support. 
In the car ride home she was more or less in a daze.  She was doing her left side lean - starring into space.  When we were in the house, I placed her in her room and she immediately went for the toy baskets.  I went and grabbed the rest of the things out of the car and went back to her room.  She had gone to her pants drawer and had all but three pairs of pants thrown onto the floor.  I guess she did not forget her mischeif.  She slept for about 2 1/2 hours.  I want to say that it was probably the best nap she has had in over a week - uninterrupted - no oxygen masks - no annoying iv's - no cold stethoscopes to the chest/back - a soft non plastic pillow - her fuzzy blanket  - and the singing elephant (thanks Ginny) that she talks to before it stops singing - (Yawn) I think I will take my own hint.  Until another adventure - :)

We are finally home!

Day Six at St. V

So it is now Monday and today went by pretty slow.  The last four days we had so many medical staff members in and out of the room but today it really slowed down - which is a good thing.  Eva is starting to feel better.  They let her eat what ever she wanted.  She had a good breakfast and dinner.  It was wonderful.  The also said that her diagnosis was atypical febrile bronchiolitis.  The last good news is that we will most likely be home by Wednesday. I think that even the nurses are sick of Nemo :)

Cloud Nine

I am so happy.  Eva woke up tonight just before the football game ended - it really wasn't a game - but anyway, she stayed awake for quite some time.  So the nurse and I were chatting for a while and Eva stuck her tongue out at me saying that she was thirsty.  So, the nurse got her some applewater and she finished the whole thing!  Then after another hour she was allowed to have apple sauce.  She ate the whole thing!  She was staying awake and sitting up at that.  I don't want to sound premature but I want to believe that things are starting to make a turn for the better.  :)

Update from St. V #3

The donated flowers are not only beautiful to look at but now the room does not smell so much like a hospital.  Both our sympathies and gratitude to the family.

This morning they decided to stop giving the abuterol to her because even after a long treatment she would not respond any better than she did before the treatment.  So it is now Saturday night and Eva has had a new respiratory treatment called vapor respirator.  This is similar to the oxygen flow with the hose to the nose but it is sending vapor pressure air directly to her lungs.  This has helped by opening the bronchi tubes which is prevents more inflammation in the lungs to aggressively prevent pneumonia.  If she continues to respond positively to the vapor then the thought is that she will eventually, slowly, get better on her own.  If this does not work then we will most likely go to the ICU.  In the ICU, I was told that she will be on a respiratory system continuously while there and possibly to a breathing tube directly down to the lungs.  She is still restricted of any food or drink and any medical personal must put on gloves and an apron for any physical touch to her.  This is called  isolation.  Sounds so lonely.  I wonder if she will ever remember this.  I will probably remember the great win over the Saints.

Update from St. V #2

On the right is a picture of our lungs.  The right side lung is someone that has been taken over by pnenomia.  The left lung is bronchilititus.  On the right side of the drawing is a better look of our bronchial tubes.  The top with the larger circle is normal.  The bottom is how inflamed they can get when you have bronchilititus.  In normal terms - bronchititus are the tree limbs swollen shut.  Pnenomia would be if a family of apes were living on the limbs. 

Taking breathing treatment the easiest way - Sleeping through it.  Four hours should go by quicker :)

Newsflash - So I came back from my hospital break and Scott had talked with the early shift RT & drs.  They said that they were going to see us again on Monday.  Guess we are looking to leave closer to Monday or Tuesday now.  I never really thought we would be here that long but at least we have a better understanding how serious the situation is.  I need to be more attentive of her breathing patterns.  Currently she is taking another treatment that is lasting four hours.  Her breathing is very deep.  It is taking her much work to exhale than to inhale.  They are "nose sucking" all the mucus out.  With this treatment, luckily she is sleeping.  I want to say she is snoring but I am not sure.  Definitely a question I will ask.

Update from St. V

So last night was rough.  I woke up around 2am and saw blindly four other people in the room.  The nurse said that her oxygen level was decreasing and the respiratory therapist (rt) was looking at her - along with the two doctors.  They chatted to get the best solution and after a while, they decided to give her abuterol for an hour.  So from 3:30 - 4:30 we were watching Nemo again and getting a breathing treatment.  At five, they decided to put that little nose hose so she could get direct oxygen.  I went to sleep before six and woke back up around nine.  This morning she was placed back on iv fluids and is now not aloud to eat or drink.  They are afraid that she may gag so iv fluids are the safest.  At 10, the doctor stated that a continuous abuterol treatment would be most beneficial - so I agreed not knowing that it lasted 2 hours.  So from 10:30 - 12:27 she got another treatment.  Boy - that was fun. Now it being  about two, both doctors and the RT came in to check.  They said that her breathing is getting better but they are not going to take out the possibly of taking her to the second floor intensive care unit for ongoing treatments.  Lets keep our fingers crossed we stay on the fourth floor.  In the meantime I must remember through all of this that a pastrami on rye is much better from Shapiro's than from hospitals. 

Still looking at #18

We are continuing our stay in the hospital.  We have been here since late Tuesday night.  So far, Eva has had five total seizures since Monday night.  She has been diagnosed with brocholititus (sp).  Her symptoms are random fevers ranging from 104.7 - 95.5, deep coughing, fatigue, loss of appetite, and irritated (mainly with the iv stuck in the top of her right hand covered with a Velcro cast).  Also after our third day at the hospital, whenever someone she does not recognize as family comes in the room, she immediately starts to cry.  I think she is tired of the medicine, rectal thermometers, cold stethoscopes, and breathing treatments.  I must say that I am ok being here.  I mean where else can you have 24 hour medical attention, room service, and talk to random people that have to temporarily and unconditionally love your child for a maximum of ten minutes at a time?  I am thinking we will be out of here tomorrow night - maybe - at least those are my hopes.  My bed at home is missing me. 

New Experience - Cage Bed

So it continues... We left IU West - earlier in the day. I continued to give medications as directed, but Eva has her own.  She had her 7th siezure tonight at 8:25.  It did not last as long - maybe 2 minutes.  We decided to go back to IU West which I must say was a much better experience than in the past.  The attending pyhsician, Dr. Ng, was much more sympathetic (since we have dealt with him before) and Pam the nurse had worked at Riley genetics and knew about 17.  He had suggested that Eva be transported by ambulance to St. Vincent's which was a good thing.  So now we are at St. V's and it is so quiet and comfortable.  They even had Nemo on when I arrived.  She was very content.  The schedule for tomorrow is to see Dr. Pappas - neuro and get an EEG to try to figure out what is causing all of this heartache.  I feel like I can sleep tonight since we will have a nurse come in and check on her temperature and continue to give meds throughout the night.  On that note - I will do what Eva is doing now - make Dory and Marlin watch me go to sleep.
p sherman 42 wallaby way sydney



Her "hellboy" hand



ER visit follow up

So last night we had two seizures.  This morning I checked her temperature and it was again at over 103.  I gave her the double dose at 7:15.  She was in this staring daze - almost like hypmotized (sp) for a while but kept tensing her fists and kicking a leg up every now and then.  Called the family dr and they weren't quite sure what I wanted - and really neither did I.  I just wanted her back to her normal.  Anyway, after another call, I was directed to just go to the ER.  We did just that at 8:05.  She was still tense.  I want to say now that it was a "stiff seizure" and it lasted for quite some time - at least until I got to the ER.  The nurses seemed a bit concerned with the blue lips and constant bubbling at the mouth.  Her fever - 95.7.  They placed warming blankets over her and was in and out of sleep - even through the five nurses getting blood samples, putting iv in her, taking rectal temperatures, blood pressure checks, you name it - she slept.  She was just exhausted. She finally did wake up around 12p.  Normal lunch time for us.  She was hungry and thirsty.  We gave her some apple juice and I had some cheerios and chex cereal.  After about 45 minutes - she decided to vomit all over me.  Fun.   They also bagged her to get a uhrine sample - they never work.  I know this first hand because she peed on me too.  I just stink. So all in all, they ended up diagnosing her with viral bronchiolitis.  There is no medication for this -just viral.  That horrible word - viral.  Where you can't do a damb thing but just weigh it out. They said I can give her tylenol and motrim alternating if she continues to have a fever.  Frusterating.  So I have to follow up with my neurologist tomorrow and with my family dr on friday.  I continue to ask myself the question over and over to myself - will this ever end?  I guess the four letter word will let us know - time.

Seizures #4 & #5

So tonight we decided to be lazy and get something to eat.  Eva was not herself tonight.  She was a little disoriented and was not very hungry.  She almost seemed slightly halucenagentic (sp).  Before we left she felt like she had a slight fever.  We rushed home and I took her temp. Sure enough, she was 102.3.  I gave her a dose of tylenol and ibuprofen at 7:15.  At 7:18, she had a 3 minute seizure.  We called the doctor because she was sleeping and shivering and the doctor told us to swaddle her to get her warm again and shivering was normal for such a drop in temperature.  From 7:30 - until 8:15, I kept her on my chest keeping her warm.  Her heart rate seemed more normal and the shivering was gone.  I put the others to bed.  At 9:02, she again had another seizure.  This one lasted less than two minutes.  We again put a cold washcloth over her head but this time no shivering.  Called the doctor again and she said to give her the ibuprofen now and alternate every two hours.  I guess the over the counter stuff is not near as strong as the hospital medication - which is really a no-brainer.  I don't want to take her to the hospital because I am much more calmer now than when the first three happened.  It also helps when Scott's home too.  Some of you  - please  -  we are in good spirits.  Your panic just excells the older sisters.  Everything will be fine.  We just have to keep thinking that :) Hopefully (knock on wood) we will have no more tonight.

GARD update

I received a good phone call from Christy at GARD.  She stated that we could contact CDO (Chromosone Disorder Outreach) in Boca Raton, Florida.  I must sa that this is much closer than the UK!  Also, there is a clinic at John Hopkins in Maryland.  I will try to get a hold of someone from both places tomorrow during naptime and see what we get out of it.  Good thing is, they are only a day away! 

CDO - http://www.chromodisorder.org/CDO/

Continuing with our hip dysplasia issues...

On August first, 2011, Eva was placed in a hip spica cast.  This cast was treatorous for her at first but after a few weeks, she learned to move in 360' circles.  After about seven weeks (normally it is six but she was sick) she was put down again and they had put another tighter cast on her.  With this cast, she was really gaining upper body strength and pulling herself around - like 'army-crawling'.  She was amazing - she went from all leg strength, doing laps around the house in the walker to full abdominal/arm muscles.  After the cast came off her leg muscles were jello yet they were stiff.  She could not move them together.  After time she was able to eventually crawl - about two months later and now she is starting to pull up onto things.  Here is why I am reminising on the past - she had PT today and our therapist decided that she needed to measure her legs because Eva continued to go onto her tip-toes while standing.  Sure enough - her left leg is a whole inch shroter than her right, in specifics it is her femur, ironically the same bone that had the most issues with the hip dysplasia. 

Next week, we see the orthopedic doctor - sure enough I will request an x-ray.  Maybe m baby will be getting some Dr. Sholls for free :)