Tuesday, August 7, 2007
No hives this morning so that's a good sign.Update later in the week.
Friday, August 3, 2007
Well in doctor terms anyway...so we go Monday to see Dr.Muniz.Atleast the lips are better now we will work on the hives and see what the weekend brings.Love to all..
Tuesday, July 31, 2007
Will keep you posted as to how the appointments turn out.
Saturday, July 28, 2007
Friday, July 27, 2007
Dr. Brenner has the pleasure of Seeing Both Ella And Tatum next Thursday....Ella is breaking him in early and Tatum is the end to his day Won't he be excited for his two favorite Mom's LOL...
Sadly this is my last post Nik is getting her Blogger Class first thing Sat Morning :) She has tons of pictures to post so Look forward to Sat's post...
there are Hospital pics as well as yesterdays fun finger painting pics with her aunt Ra-Ra....I hope you all have a wonderful weekend
Lots of Love :)
Monday, July 23, 2007
I think I now have Nichole addicted to blogging so I'll be over her place giving her a crash coarse.....It is pretty easy :) She is planning to keep her blog up just to make it easier for you all to watch the girls grow.
Thanks for all the prayers and support while they were there and always :)
Ella was unable to go home yesterday - but we are hoping for today. Still quite a feat as her open heart surgery was a week ago today!!!
She was totally excited by a visit from her best friend Alison. They held hands and walked the ward , of course the nurses were just laughing at our little princess. They shared Scooby Doo push ups and had quality "girl talk"!!
They gave Ella some pain meds for the first time since she got to the peds floor. What a difference! The small dose gave her the ability to walk, play and move more comfortably. Ella told Mom and Dad that she is ready to go home!!
Sunday, July 22, 2007
Ella is only on a "whiff" of O2....that is nothing but it seems to be the hardest to get kids off of.
Just wanted to remind everyone that the FNP has a article about Ella today "The heartest hurdle" I have been trying to get a copy of the article from 05 for you all but I am still working on it, much easier said then done :)
Saturday, July 21, 2007
Well the "on-call" cardiologist says if Ella maintains her o2 (oxygen) level in the upper ninetys we will come home Sunday or early Monday.Our only concern is that this is not her regular cardiologist so we will see how much she walks and how clear her lungs are today.She is still dramatic....When they told Ella she could go home possibly tommorow she told Dr.Everett "no,I dont want too".So she is getting better and wow is she gonna have a rude awakening when she comes home and Jason and I have to take care of Baby Kate and Nico also.Ella will have to come out of Ella's world and back to reality!
Update soon..Jason and Nikki
They removed all of her lines and the chest tube with the exception of one IV line in her hand in case they need it. She sat up, ate and was able to walk (a few steps with MUCH drama). Mom and Gran got her situated, with IV pole and oxygen tank in tow. The nurses encouraging her and bribing her to walk to the waiting room. Ella, being our little PICU Princess, walked 4 steps and sat down in the middle of the floor and told her Mom to "put me back in my bed and let me watch my movie"!!!
Not happening, we made her get up, to try again ,she walked 10 steps before she was carried back to bed to watch her movie!! Daddy's favorite Scooby Doo video.
To quote a PICU nurse " You have a future Oscar winning actress on your hands"!!
Ella was moved tonight to the pediatric floor and has a pink room with a pull out bed. Mom and/or dad can spend the night comfortably rather than Jason trying to stay awake in a straight back chair!!! Her coloring is good, her oxygen levels are good and she is hungry!
Today's funny stories - Ella has been receiving much appreciated mail from her friends and when it was brought to her to open tonight (after she provides a few good strong coughs, on bribery basis) she was asked to open the envelopes. In a small pathetic little voice, she said, "I can't", and looked away. When asked why? and she said " b/c my arms hurt". When asked why her arms hurt she looked down and responded - without skipping a beat - "because I had surgery". It took a lot to keep from laughing!! Her personality is definitely back!!
Her Pop-Pop could not make it down today so when she called him tonight to say goodnight he told her he was coming to see her in the morning.
He asked her if there was anything she wanted him to bring her and again, without skipping a beat and in a dramatic, sad little voice she responded "flowers, Pop-Pop", "pink and blue ones". Again It took everything not laugh.
The doctors are pleased with her progress, as everyone is. Yesterday was filled with love and kisses from Nannie and Poppie and Gran and T-Pop. Auntie, Mom and Dad were also there to hold her hand and watch movies with her.Her progress is getting stronger by the hour!! Thank you to everyone who has kept her in their prayers, It is truly appreciate by everyone! I'll have another update in the morning!
Friday, July 20, 2007
Good early morning!
It was a good day. Ella was able to sit up in a chair a few times and got to sit in mommy's lap for awhile. She got her first "fat" and was able to drink some chocolate milk for the first time!!!!
They took out her second jugular line and her "paddle" from her arm. She still has one chest tube and a jug line in her neck and iv line in her hand. Each day they have been able to remove a line, which is promising. She was able to come off of the CPAP for most of the day and was on a nose cannula which she tolerated well. We had a few drops in her oxygen level late tonight and they put a face oxygen mask on to aid her - but only at 35 percent oxygen.
Mom got to paint her toenails in blue, pink and yellow ( she wanted all 3 colors) and she now has a sassy polka dot pedicure!!! Both sets of grandparents came and her T-top finally got to see her awake and got a high five!! Previously every time he went back she was asleep!!
Gran and Nannie got plenty of bedside time, which made our little PICU Princess VERY happy!! She has watched her favorite movie "Annie" several times much to the nurses enjoyment. Our little princess has gotten her love of music from her Gran!!
We are hoping to have her other chest tube removed tomorrow - she had some issues with coughing and loosening up the fluid in her lungs. She still has a partially collapsed lung but the fluid is moving from the right side to the left - she is moving more, which helps!! The doctors seem pleased with her progress and keep reminding us that the recovery is the hardest part of the surgery. We'll give another update in the late morning tomorrow!
As soon as I get another update I'll pass it along...Happy Friday
Thursday, July 19, 2007
I just got a picture from Denise's Cell.....Ella's Coloring is AWESOME
The Follow-up article about Ella is going to be in Sunday's Frederick News Post
and in case anyone is interested the following link is a segment from Today's Good Morning America, It is about Williams Syndrome...That is what Tatum was DX'ed with at 6weeks
Last night they were able to get alot of the fluid off of her lungs but she is remaining on the C-Pap. They took her off briefly but her stats plummeted so back on the machine she went. In case anyone is wondering the C-Pap is a machine that holds her lungs open because her diaphragm is not working properly.
Unfortunately she can not step down from the PICU until she is off the C-Pap.
There was nerve damage to the diaphragm cause by the ice that her hart was wrapped in during the surgery...although it is not permit it does heal sporadically in a time frame of 2 days to 6 weeks. This nerve damage is what cause the lung to collapse, which by the way is getting much better. Our little Ella is quite a trooper. The only bad news is the hospital stay is going to be longer then we all expected.
Today the nurses are going to try and get Ella into a chair the more movement for her the better for recovery...They are also planing to have the opposite pacer wires from her heart, remember one side was removed yesterday, and the line in her jugular is coming out. Once the cheast tube is done draining it too can come out, Jason said it drained alot last night so it is still doing its job and most likely not ready to be removed today. Maybe today I can get Mommy or Auntie to send a picture of our PICU Princess for the you all to see...
I'll be sure to let you all know of any changes and remember no news is good news :)
Have a great day... Nik and Jay send there love to all of you
Wednesday, July 18, 2007
Without the C-Pap her levels are in the low 80's.
There is not a need for surgery at this time. Her diaphragm is not
paralyzed - which is great news. They think it may have been the nerve
that operates the diaphragm which was nicked or stretched during
surgery. This will hopefully heal itself. Her right lung is partially
collapsed. They will keep her on the C-Pap to help her lung get
There is good news. They are removing one of her chest tubes and the
pacer wires from her heart. They are also removing the femoral arc
They are keeping her quiet and sedated today, Jason and Nikki have had a pretty rough morning but are doing better now...If it is not bad enough to have to go through this but to do it on zero sleep makes it even worse...
Thanks Denise for the update... I think we can all breath a bit easier now...
Anyway sometime after midnight the Dr.'s made the decision to suction our her lungs, she was unable to really cough stuff up. When they did this her saturated O2 level dropped into the low 80's. A person's O2 level should range between 98 and 100 for a healthy person...
Tatum sometimes drops as low as 96 and is OK, but usually they do not like anything under 94 and defiantly not the low 80's. Ella's O2 level since surgery and prior to there suction had been 98-100.
The immediately put a C-Pap on her to raise the saturation levels. They are reviewing the X-rays taken last night along with her echo cardiogram to determine it the sudden drop in O2 levels should be accredited to a collapsed right lung or a paralyzed diaphragm.
In the event that it is the diaphragm she well have to undergo another surgery to correct this. If it is the right lung it can be corrected by a procedure that is not as evasive. In any case this is not the best nor the worst situation for Ella. Please keep El and her family in your prayers...I know you all are, today is going to be a tough one.
I'll post more later this afternoon or early evening when Nik and Jay know exactly what is going on.
If anyone has any other questions please feel free to drop me a email and I can try to answer what I can...Having been through heart surgery with my own baby I may be able to explain something better if need be.
Tuesday, July 17, 2007
Right now she is not tolerating any liquids or food not even ice chips and water the goal for the day is to have her sit up.
Although she is draining well there is still lots of flem in there, but she is still requiring O2. Once weened from the O2 the draining process should continue quicker and make liquids something she can handle.
Hopefully she'll be out of the PICU by the end of the week.
Jay stayed awake and watched her last night, Nik says he is a little punchy after no sleep for 24 hours... look out hospital tonight is Nik's turn on the night shift....
She is loving everyone's comment as I read them to her and says Hello to all of you.
Dr. Cameron is making rounds around 8:30am so She'll update me again later on...
I hope you all have a good morning.
Monday, July 16, 2007
Ella is going to remain on the breathing tube tonight in the PICU and hopefully they can remove it tomorrow. She did wake up but they gave her meds to go back to sleep and different med to maintain her BP. They do not want her awake because she would try to pull out the breathing tube and also cause her BP to rise. They added another line to her jugular in order to monitor the BP closely she has a total of 4 lines right now, Dr. Brenner said tonight would be the hardest night but was also positive, keep those prayers a coming...The fact that she already has color back so quickly is huge.
I'll Keep everyone updated as I hear more... And leave Ella some comments per Nikki its for her journal...
As soon as her echo is complete they are going to see her...
Ella M ( you all know the last name)
1915 McElderry St
Baltimore MD 21205
This is the Children's House Address and much easier or you can send then to there home :)
Thursday, July 12, 2007
here is a quick synopsis on Ella...
Ella was born with tricuspid atresia. Tricuspid atresia means that she does not have a tricuspid valve inside her heart. Since the valve is not present the right side of the heart has problems developing due to lack of blood. Your heart is made up of 4 sections that comprise of 2 pumps and 2 holding chambers. One of the pumps provides blood to the lungs and the other provides blood to the body. Ella was born without the pump that provides blood to the lungs. She has undergone multiple open heart surgeries to help create a palliative correction so she can live a relatively normal life. On the 16th of July at John’s Hopkins University she will undergo what is called the Fontan procedure. This will hopefully be the last staged open-heart surgery required for many years to come. Of the many surgeries that Ella has had performed this one will probably be the hardest recovery to date. Please keep Ella in your prayers and thoughts over the next couple weeks while she undergoes the surgery and fights back during the recovery. We well continue to update this blog with Ella's progress...
Kate is doing Great and getting so big, it has been crazy having a regular baby on a normal growth and development schedule and it keeps Nikki very busy :)
We are all just trying to get through this tough time, we are so glad we have our family and friends around to help ...your support and prayers alone do more then you'll ever be able to imagine and for that we say thank you. We are spending the night on Sunday at the Children's house. This its basically free, non-profit, for the family's of children having surgeries.They are asking for phone cards in the smallest donations or small Safeway cards like 10 dollars or so..If you can swing any donation that's great, just let me know and I can get you the info I have not already email it to you.
Ella is in terrific hands and we're confident with all her doctors. We are truly lucky to have such a great hospital so close.