Monday, June 29, 2009

quick update + barbie guitar

unfortunately, my mom spent most of the weekend sick to her stomach. she is not sure if it is the new blood thinner medicine that she had to switch to because of the condition of her liver (she has to give herself shots in her stomach) or if it is the medicine for the pneumonia, but both have nausea listed as a side effect and she has been unable to eat and keep much down. she came to indianapolis today to see the liver specialist that my sister, nicole, contacted on her behalf, but unfortunately he was jam packed with appts today - so he had some labs run and took a look and found that there was some good news --- her liver numbers are getting a little better. he said that if they looked the same as last week, that he was planning to admit her to the hospital. GOOD NEWS --- no hospital today/tonight... but they will be back down in Indy tomorrow to see the liver specialist for an appt at 11 a.m. we will hopefully have more news about the condition of her liver after this appt. thank you for your continued prayers!!!

a fun side note --- some friends of ours who have a little girl about 3 years older than anne gave us her Barbie guitar that she does not play with much anymore. anne LOVES it!!!!!!! she loves it so much that she plays it quite often. mike's exact words in reference to our friend who dropped the guitar off for anne were: "That Erin is a menace!" He was joking --- but it is pretty funny ---we are pretty sure erin and bryan don't miss the barbie guitar too much :)

here is a little video of anne "playing" the guitar:
video

Friday, June 26, 2009

Latest news about Mary Alice

My mom was released from the hospital last night so that she could go to her appt. in Indy this morning with her heart surgeon. In addition, my sister who is a nurse in the medical ICU at the IU med center contacted a GI doctor who specializes in livers regarding the issues my mom is having with regard to her liver swelling and elevated liver #s. The doctor reviewed the information about my mom's liver #s last night and ordered an ultrasound today of her liver, following her appt. with the heart surgeon. He is going to see her on Monday regarding her liver complications, but he indicated based on what he saw when he looked over her #s that it might be Amiodarone induced hepatitis. Amiodarone is the drug my mom was on to help keep her out of A-fib. You can read more about Amiodarone here: http://heartdisease.about.com/cs/arrhythmias/a/amiodarone.htm Unfortunately, even after stopping this drug, it takes a very long time to get the drug out of your system, and it can continue to cause problems and damage. In addition to complications with the liver, it can also cause complications in the lungs, thyroid, cornea, etc... Please continue to keep my mom in your prayers! My mom will be able to be home this weekend, as it appears her heart is still healing well, despite these recent complications and it does not appear that they are able to do anything to reverse or help what is going on with her liver, at this time. Hopefully we will know more after her appt on Monday with the liver specialist.

Thank you very much for your continued prayers!!!!!!!!!!!!!!

Thursday, June 25, 2009

prayers please

My mom was not feeling very well on Monday and Tuesday of this week (she had steadily been feeling better as she was healing from her open-heart surgery 6-2-09) and when she had her first cardiac rehab therapy appt. on Tuesday she found out she was in a-fib. Later Tuesday night she was feeling worse and my aunt beth had come down to help out again this week so she and my dad decided it would be a good idea to take her to an Urgent Care Clinic. They admitted her to the hospital Tuesday night and said they were going to keep her for 23 hours. They discovered that she has pneumonia in both lungs and additionally, yesterday, they found that her bloodwork showed elevated numbers for her liver. Her liver numbers have gotten worse, so they kept her in the hospital again last night. She is still there today, and I have not heard any updates. She has an appt. with her heart surgeon in Indianapolis tomorrow (Friday) morning. Hopefully she will be able to go to this appointment and the surgeon might have more insight into what is going on and how to best help my mom. Please say a little prayer, if you have a minute, for my mom's health and recovery from open-heart surgery to improve. Thank you so much!!!

Tuesday, June 23, 2009

Jumperoo




Last weekend (the one before Father's Day) my parents were talking about how much Whitney loves to bob up and down and bounce around and wondered if we should look into getting Whitney one of the "jumping things" for babies. We never had one for Anne (although, we did borrow one of the doorway ones from a friend, and Anne loved it!) but we had been thinking the same thing, that Whitney would probably love one, and maybe it would encourage her to "bear weight" on her legs. I know there are some physical therapists who do not think "jumping things" and "activity centers" are very good ideas for kids with Down syndrome, but I checked with our therapist, and she said they are just fine, as long as you do not put your child in one for any long period of time. So... while we were in Lafayette on our way home from Chicago 2 weekends ago, my mom said she and my dad would like to get one for Whitney. I ran to Babies R Us and found a cute Fisher Price Jumperoo and Whitney absolutely LOVES it! We do not put her in it for any length of time, just a little bit here and there throughout the day. Her legs still are not quite long enough to touch the ground completely when she is in it, but if she bounces around enough, her feet do touch and she can "jump" around a little bit. Above are a couple of pictures in the jumperoo and below is a video clip of Whitney enjoying her new toy!


video

Friday, June 12, 2009

Mary Alice Update

Hi :) Just wanted to post a quick update about my mom... she has been doing well at home! Aunt Beth has been helping out a TON and hopefully my mom and dad are finally starting to feel a little more rested after a few nights in their own bed. There is no place like home!
My mom went into A-fib (click on "A-fib" to read more about it) on Wednesday night but through an increase in her medicine to help combat this, she came out of it and is feeling better today! She had an appt with her new family physician today and said she liked him. He will be helping her monitor her Coumadin (blood thinner) medication, but at this point will be going with whatever the cardiologist and heart surgeon have prescribed.
I think as the week has gone on, my mom's voice is sounding stronger and she seems to have more "life" in her when I talk with her.
Mike and I are headed to Chicago for our friend Brad Hewlett's med. school graduation tomorrow and will stop in Lafayette on the way up to see my parents! I am sure there will be a big change, since we have not seen my mom since Sunday.
Thank you for your continued prayers!!! :)

Tuesday, June 9, 2009

What are the odds???

What are the odds of this?!?! I found out from Jennifer at Three's A Charm that her friend Lisa blogged on the SAME DAY about cutting her son's "frohawk"! How is it possible that we both decided to cut our babies hair and write a post, complete with pictures, about it on the exact same day. Check it out if you have a minute, his "frohawk" was 'kickin' (Whitney's mohawk paled in comparison!!!) :)
I love the part she wrote saying that her husband would say about their son, "The boy's kitchen is a mess!" That sounds like something Mike would say!

http://geneticenhancement.blogspot.com/2009/06/ode-to-frohawk.html


by the way - I talked to my mom this morning and again this afternoon and she sounds tired, but good! she said aunt beth has been very busy helping with laundry, fixing food, taking her on walks around the house and yard, getting her from a chair, to the front porch, to a chair inside again, making her do her breathing exercises, etc... way to go nurse/personal trainer/housekeeper/beth!!! thank you for doing all you are doing to help my mom and dad (and us!)

Monday, June 8, 2009

Bye Bye Mohawk

Whitney was born with a mohawk:

and for a while the only part of her hair that seemed to grow was the "mohawk" part:(these two pictures almost made me cry as I looked back at them - Whitney was so sick when these pictures were taken... we do not have very many pictures of her from the first few months of her life because she was just so sick, it was hard to take pictures because these were not the memories I wanted to save! We are so lucky that she is even here with us now... wait until you see the pictures of her now, without her mohawk, she looks SO HEALTHY!!! :)

Anne even would say, "Mama, I kissed her on her mohawk":

This is where her mohawk was 'kickin' (as Mike would say):

Then her mohawk grew so much that it flopped over and began to curl a little:

On Sunday, I cut her mohawk and now all that remains is bright blonde fuzzy hair:

Home sweet home

My mom and dad are home! I talked with my dad earlier this morning and then again around 1:30pm and they were getting close to home when I talked to him early this afternoon. I know both my mom and dad are very happy to be home and will be happy to sleep in their own beds, shower in their own shower, etc...

My mom's youngest sister Beth is a teacher in the Upper Peninsula of Michigan and drove down this weekend to stay (I think for a week) to help my mom and dad with caring for my mom now that she is out of the hospital. THANK YOU Aunt Beth!!! I haven't talked to them since they arrived home, but I am guessing they might both need a good nap :)

In other news... I took Whitney to a new pediatric otolaryngologist today after learning in April that Whitney had fluid behind both ear drums and mild hearing loss in both ears (we already knew she was not hearing correctly, but an ABR exam confirmed the hearing loss in both ears.) I was very disappointed (to put it mildly) in the doctor that Anne had seen since she was a baby and who performed surgery on Anne 2X to place tubes in her ears. Today was the soonest appt we could get after going to the Indiana School for the Deaf in April, but it was worth the wait! Whitney's new doctor (and her nurse) were WONDERFUL and cared enough to address the issues relating to Whitney's heart, breathing, hearing, etc... Whitney does still have fluid in her ears and needs tubes (as I tried to talk with the previous doctor about when we saw her in March). The doctor told us that tubes like the ones Anne had are too big for Whitney's tiny ear canals, she will need special tubes that she called tiny tabs. In addition, while they are performing this surgery, the doctor plans to do a scope and look closely at Whitney's adenoids and tonsils. She will contact our pulmonologist prior to surgery to find out if there is anything specific he would like to have checked while she is under. She also said she would be in contact with our cardiologist to make sure we have a pedicatric anesthesiologist who would know any precautions to take given Whitney's heart condition. She normally performs this surgery at a surgery center, but she wants to make sure all precautions are taken, and plans to schedule this surgery at the St. Vincent Children's Hospital, so in case there would be any complications, we would be in a hospital rather than a surgery center. She performs surgery on Tuesdays and Thursdays, so now I am just waiting for someone to call to schedule (hopefully soon!) I am thankful now that the other doctor did not do a thorough exam to find out that Whitney did indeed have fluid (that was not visible simply by looking in her ears) that would require tubes, because it seems that by the way she examined Whitney in the office visit, she would not have taken all of the precautions and steps that are going to be taken now to place tubes in Whitney's ears to hopefully help her hear properly.

One other thing - I cut Whitney's mohawk yesterday. I know it needed to be done, but it broke my heart to cut the only hair she was born with... but it just kept growing and now that all of the hair on her head has come in, she is a bleach blonde and the "mohawk" was a darker strawberry blonde color... it looked a little strange having these long dark pieces mixed in with this short, fuzzy white-blonde hair. I will try to post pictures soon.

Thank you to everyone for your care and concern for my mom, she has made it through the toughest part and now just needs to get stronger every day. Hopefully my dad can survive all of the stress of being home and trying to catch up with all of the clients who have waited for him and work that has piled up while he was busy going back and forth to Chicago and Indianapolis for doctor appts and the surgery this past week.

Sunday, June 7, 2009

Hopefully going home on Monday!

I called my Dad early this morning (Sunday) to see if we could come in the morning to see my mom and visit... he sounded tired and said that it would probably be better to wait until later in the day. Apparently my mom went into atrial fibrillation late in the afternoon yesterday (Saturday) and it was not until sometime very early this morning that they were able to get her out of "A-Fib". They are giving her medication now to help prevent this from happening again, and she will continue to take this at home while she recovers from surgery.

We went down to the hospital in the afternoon and visited for a while. This is the best my mom has looked yet! Nicole had helped her wash her hair, she was up and moving about and had even completed the walking distance necessary to be able to go home. My dad said he talked with the surgeon's nurse practitioner and it sounds like if all continues to go well, and there are no complications like last night with the "A-Fib", my mom will be going home tomorrow!

I will try to post any updates and let everyone know if she does get to go home tomorrow! I hope she does, for her sake, but also because my Dad spent the night in a chair in her room last night, because he didn't want to leave her once he knew she was having complications, and he needs a GOOD night of sleep!!!

THANK YOU so much for the prayers, thoughts, comments, etc...

Hope everyone had a good first weekend of June (how is it June already?!?!)

Saturday, June 6, 2009

Looking better every day

The girls and I went to see my mom yesterday afternoon. While we were there Tim drove up from Bloomington and as we were getting ready to leave Nicole arrived as well (and of course my Dad was there!) My mom's central line in her neck was taken out yesterday and the only "tube" remaining is a new iv line they put into her left wrist. She had already been up and walking 2X by the time we arrived and still needed to go on one more walk before the day ended.

We are getting ready to go to Anne's last soccer class/practice for the spring session and then we are heading down to Methodist to see my mom and dad. I asked yesterday if they had any ideas as to when she might be heading home - it sounds like Monday might be the day if all continues to go well! :)

Enjoy your Saturday!!!

Thursday, June 4, 2009

Thursday update

No real news to report (which is good news) about my mom, other than she is officially out of the ICU and in a regular room (it is still cardiac care, but no longer ICU). She only has one tube going into her remaining, the one going into her neck and that is it! She asked me to bring her a chocolate chip cookie to eat (so that is good that she actually wants to start eating a little bit). The girls and I left for the hospital around 2p.m. (we would have left right after lunch but Whitney let me know that she would NOT wait to have her bottle until we got down there, so I thought maybe I better feed my child first :) We visited with my mom and dad for a while and showed my mom the watercolor Anne made for her. After a while, Anne was starting to bounce off the walls and my mom was looking tired, so my dad and I took the girls to ride the "people mover" so that my mom could take a nap.


We went from Methodist to Riley Hospital for Children (where Whitney had her open-heart surgery) and at Riley we rode the elevators, looked at a train model, doll house, and Anne threw coins into the fountain. My Dad asked her if she would like to make a wish. She wished to put the penny into the fountain. She put the penny in the fountain and then asked if she could make another wish. This time my Dad asked her what her wish was and she said she wanted to throw the penny into the fountain. Wouldn't it be nice if she was always this easy to please :) We then rode back & Anne remembered when Whitney had been in the hospital that my Dad or Mike would take her to ride the people mover and Mike told her he saw the troll that lives under the bridge (from the Three Billy Goats Gruff book). Anne told us today that she saw the troll and he was eating chicken burritos. Funny :) We stayed until about 7p.m. then had dinner downtown and got home around 8:30 tonight. We will head back down tomorrow and hopefully my mom will be feeling even better!


I also read some of the comments from the blog to her, she enjoyed hearing the messages from everyone and laughed at some of them (particularly, the Tanqueray comment from Jenny Jones)

My Dad is doing great through all of this, I know it is VERY stressful for him, so if you think about it, could you say a prayer for him (and for my 91 year old grandmother, Kay - even if you are 91 and your baby is 59, it is still hard to know your baby is going through this!)



Moving out of the ICU :)

I talked with my Dad this morning a little after 9 a.m. and he said that Mary Alice is doing well enough to move out of ICU today! Yeah! He thinks they will be able to move her hopefully by early afternoon. Kids are not allowed in ICU but I can bring the girls to see her today once she is in her new room! Anne is working on a watercolor picture/get well card as I write this - hopefully this will be something fun for my mom to look at in her room. I will try to read the blog comments to my mom if my dad has his laptop up and running in the room. If not, I know she will enjoy reading them (or having someone read them to her) sometime later!

Have a great day everyone :)

p.s. I thought I would post fun picture today... this is a picture from my grandma's 90th birthday last year.

Wednesday, June 3, 2009

Read the blog to Mary Alice

By the way - I forgot to mention, that after my mom got back into her hospital bed after sitting this morning for an hour and a half in a chair, I asked her if she would like to hear the blog updates and comments from yesterday. She was very interested in hearing all of this, especially the comments - so thank you everyone for your kind words, it felt like we were reading a bunch of get well cards that had arrived just for her! THANK YOU :)

Post Surgery Day 2

I left home at 7:30 a.m. this morning to make sure I would arrive by the 8:30 end of shift change so I could be with my mom while my dad left to go sleep at my sister nicole's house. My dad ended up spending the night in the chair by my mom's bed last night (it does not recline, it is just a chair, so he has to be exhausted right now!) When I first got there my mom was trying to open her eyes and talk with me a little, but she seemed to be feeling a little sick. I asked how she was feeling and the nurse filled me in... my poor mom had gotten sick to her stomach and was feeling nauseous from the pain medicine. She was starting to come around though, but still had a few bouts of feeling sick to her stomach while I was there.
My mom was doing well enough that the nurse said she was ready for more tubes to come out, yeah! She took out her left atrial pressure line from her left wrist, next was her oxygen nasal canula and finally the bigger of the two lines going into her neck. My mom did well through all of this and soon after was ready to attempt sitting in a chair. It was a bit of a process to get all of her lines and tubes in a position that she could get up and move over to the chair, but she did it, with the help of her nurse and not too long after she had been sitting, my sister Melissa arrived. My mom started to perk up a little as she sat - she wasted no time letting us know that she would like to have her neck and shoulders rubbed :) She ended up sitting for about an hour and a half before she told us she was ready to lay back down.
I stayed until about 12:30 p.m. but had to leave to get home for Whitney's 9 month check up with the pediatrician this afternoon. That appointment went very well, Whitney is doing very well with her growth and weight gain. We discussed concerns about her hearing (luckily, we have an appointment coming up this Monday, the 8th, with the ENT), her breathing (we go to the cardiologist again in July, but her breathing still just isn't quite right and her chest is still retracting as she breathes, but we aren't sure what more at this point to do about this. hopefully it has something to do with the tracheomalacia and laryngomalacia that should resolve itself as she gets bigger and stronger).
I called my brother on my way home from the pediatrician's office to see how things were going (around 4:30 p.m.) and he said that he and my dad were outside of the room because they were removing her chest drainage tube, yeah!!! This is a big deal... I think she had as many things removed within 24 hours post-op. as Whitney had removed in 4 days in the ICU! We are so thankful that my mom was in good health going into this surgery, with the exception of the very bad condition of her aortic valve and surrounding aortic tissue. I am hopeful that they will be able to move her from ICU to a regular room sometime tomorrow. I will have to call my Dad tonight to see if there are any updates since late this afternoon - but this is pretty much the summary for the day. Overall - a good Day 2 :)

Thank you for your continued prayers!!!

Tuesday, June 2, 2009

Freedom

My mom was extubated sometime this evening after shift change. My sister called a little after 9:30 to give me the good news! I later talked to my Dad - he said she was feeling pretty weak but was able to talk a little bit. She is not in too much pain, they are doing a good job with the pain medicine. I feel much better going to bed tonight knowing that she is free of the breathing tube & the tube that drains her stomach - I can't even imagine how awful it would be to be aware of the tube and unable to do something about it... SO HAPPY she is doing well enough to breathe on her own, yeah! :)

Thank you again to everyone for all of your prayers and support!!!!!!!!

Mary Alice is awake

The nurses just escorted us out of Mary Alice's (my mom's) room for the shift change. We are not allowed to be in the ICU room with her from 7-8:30 a.m. or p.m. Since this afternoon she has started to wake up and can nod her head yes and no, but cannot talk due to the breathing tube. She is VERY ready to have the tube taken out (extubated). She is awake and able to communicate by nodding yes and no + now that she has her eyes opened, she is also communicating through her eyes. She is still in a lot of pain, but doing very well all things considered. We are hopeful that she will be extubated tonight.

By the way - to all of the Conley and O'Grady families praying for my mom and following how she is doing, she wants you all to know that the surgeon confirmed this is definitely a congenital condition, so PLEASE have a cardiologist (with a trained ear) listen to your heart/get yourself checked out!!! Aside from her aortic valve the surgeon said that her heart is very healthy.

Post-Surgery ICU Upate

She came through the surgery well! She is currently in the Intensive Care unit. I just visited with her briefly and she looks good. She is currently sedated. It will be about 3-4 hours before she comes out of sedation. We briefly met with the surgeon. When I get a chance to sit down with my dad, we'll put our heads together and let you know what the surgeon said. The surgeon did say that it will be 6 months to one year before she feels the full benefit of the surgery. Basically, her heart was working very hard in its impaired condition. Now her heart won't have to work so hard. I will be back down to the hospital this evening, and will be giving more updates as they come in. Thank you so much for all your prayers. They worked.

12:40 pm update

We just heard from the volunteer that they are closing up my mom. We presume this means it went well since the surgery took less time than they originally expected (this is what we hope, anyway!) Will post more when we hear she is out of surgery and in recovery (I might have a lag in posting since I need to head home soon for Whitney's physical therapy from 2:30-3:30 p.m. but I will try to post as soon as I can, when I can)

sort of an update

We are having a different experience as the patient's family in the waiting room for my mom's surgery than we had for Whitney's surgery. Unfortunately, the updates are coming from a volunteer rather than a nurse. This is in no way the volunteer's fault, it is very nice that she is volunteering, but she does not have any details or information when she comes to give an update. We just received an "update" that they are "warming" my mom, because they have to lower the body temperature during the surgery. If they watch and everything looks ok, they will be closing her up. This is all we know, we do not know what all they had to do, how everything went, etc... I guess we just have to be patient and wait until we meet with the surgeon after the surgery to see how everything went and what the extent of the repairs/etc... were. This is all I know at this point - I will write more later when we find out anything else.

Noon = next update

We are waiting in the cardiac surgical waiting room and they told us they do not expect to have an update for us until around noon... I will post what we find out whenever someone comes to give us an update.

In The Waiting Room

I drove down at 5:30 a.m. to Methodist Hospital to meet my parents and see my mom before she goes into surgery.  It was pretty unbelievable timing - I was at the stoplight waiting to turn onto the street where the hospital parking garage is and my parents were across the street in their car at the same light turning onto the same road.  My parents had an hour drive from Lafayette, so I do not know how we timed it to be at the light by the hospital at the same time.  I parked by my Dad (after he dropped my mom off) and we met my mom in admitting.

Here is where we had an interesting experience, that Mike would have LOVED.  There were a few other people waiting to be called to the patient registration desks and my mom had been waiting while we parked the cars, so she had been there for a while.  Soon after my Dad and I sat down with my mom a couple walked into admitting and the lady stood at patient registration desk #1 (there was not a worker there yet).  Soon after the employee for desk #1 sat down and asked for the next patient.  The lady said "my husband is here for surgery" and was clearly trying to cut in line (hello, this is not King's Island and we are all waiting to go on a roller coaster and just can't wait so we cut in line).  So my dad stepped up and said "my wife is here for surgery" and then my mom pointed to a man sitting down and said "he was here first".  The man said to my mom, "my wife is already checking in, go ahead".  It was already very clear to this lady that my mom was next in line, but now it was for sure, especially after the other man sitting down told my mom to go ahead, because he knew she had been waiting and was next.  So my parents went up to the desk and the lady who wanted to cut in line continued to stand behind the patient chair at desk #1 even after my parents were checking in.  The worker asked for drivers license and insurance cards and was beginning the process, so my Dad asked if my mom would like to sit down. (this was obviously my dad's hint for this lady to back off because we were getting ready to give personal information)  My mom was not feeling up to any sort of confrontation, so she continued to stand.  At this point my dad asked the lady (politely) if she would mind if they could have some privacy.  The lady then said to my dad in a VERY RUDE and aggressive way, "Oh - you're a real smart man, you're a real smart ass". 

What???!!! Clearly this lady was stressed and is someone who is just looking for a fight.  This was the most odd experience and you couldn't help but laugh because it was so ridiculous.  The lady then backed away and went to go sit down next to her boyfriend/husband and was ready to fight the world.  They were then called to patient registration desk #3 within the next 2 to 3 minutes so it was absolutely no big deal (there was not a long line to check in, this is why this whole interaction is still so odd).  While they were checking in (the chairs to wait in were directly behind the registration desks, so there really wasn't much privacy anyway) the lady said very rudely to the worker checking them in, "I certainly hope they fix him this time! This is his second surgery for the same thing" she then continued the registration process, but said in a huff while looking over at my parents "Oh, I'm going to be pissed off all day!" A little while later, into their registration, the worker asked about some payments on their account and the lady said, "They're pending, I know they are!"  CLEARLY this lady has some issues and I know she is stressed out, but it was not nice of her to stress my mom and dad out more as we were checking in this morning, when clearly this is all very stressful anyway.  The good thing is - the only thing we could do was laugh, so we got a laugh and a story out of it - but now we are stuck in the same waiting room as her all day.  What a day (and it is only 7:30 a.m - this all happened about 6:10a.m.)

Thank you to everyone for all of your prayers - I will continue to update as I have the chance :)