Wisdom Heart

Patty, Sophia and I took a day-trip to the local botanical gardens on Sunday.
The park is called Powell Gardens.
We all had a wonderful time and it was really nice to get out of the city and have some family time.
Sophia really loves to be out in nature and she beamed her satisfaction all day long.
The gardens were so beautiful and the weather was perfect. What a great day.
There are many photos on flickr.

Patty, her mother, and Sophia attended The Erika Bender 2nd Annual Plant Hope For Hearts in Parkville, MO. The weather was nice and they had a really good time. I was unable to attend because of work. Seems like a great event.

A few months ago, Sophia was chosen to be this years recipient for the 12th Annual Steven Hagedorn Police Officer's Charity Golf Tournament. My mother has worked for the Lee's Summit Police Dept since I was in grade school and this event always benefits one of their officers or an officers immediate family member. The news of Sophia being selected by a nominating board was very overwhelming for her father and I. So overwhelming that we have had a hard time even talking about it publicly. It is kind of like winning the lottery, only better. Yesterday was the tournament. I knew when we pulled up in the car I was going to get really emotional. There was what seemed to be a couple hundred people at this golf course. They may have been there for their own reasons, but in my mind they were there for Sophia. Michael and I are strong believers in Karma. My baby has suffered so much in the short 22 months of her life. To her, pain, discomfort and hospitals are a normal part of living. She has undergone 5 surgeries in her life and still manages to have the most amazing positive spirit. I do recognize as her mother that she is unique. For example, she did not cry or even whine once yesterday from the time she woke up until she went to bed, even though she is teething and still has an ear infection, ate meals at strange places and did not get a normal nap. It is normal for her to always be so happy. As a matter of fact, happy is one of about only 6 words that she can say. I thought to myself yesterday, my baby deserves this and this is my opportunity to show all these guys how special of a child she is.

Sophia shined like a star yesterday. She smiled and laughed with all the players and they totally "ate her up". (I just started crying while writing this thinking back on how amazing of a day it was) She ate pancakes in the morning with the golfers and rode around on golf carts with me in the afternoon the whole time clapping and waving to people as we drove past them. The weather was beautiful here in Kansas City yesterday, sunny and a little cool. I only wish she could be old enough for her to remember the day. Michael was able to get off work an hour early and attend the award ceremony were Sophia, Michael and I were introduced again. I gave a short speech and thankfully managed to not get all choked up. Most of the people already knew who our daughter was because of this blog and or knowing my mom. But I want to take this opportunity and thank all the participants and volunteers who made the tournament possible. We will use the funds in a positive way that will effect our little girls life. I kept finding myself saying "This just does not happen to people like us!" But it did and Michael and I are beyond grateful.

What a sad story this is. They verify all the narcotics at Children's Mercy in KC. But, heparin seemed to be used pretty freely to keep IVs patent (hep-locked?). More evidence of the necessity of parental vigilance. Although, I am not sure it would make much difference in a freak accident like this. My thoughts are with the families of these newborns.

As many of you who read the blog on a regular basis know, I posted a few rants about some of the doctors we encountered during Sophia's last hospital stay.
In retrospect, it seems posts like these are counter-productive in regards to the purpose of this blog and as a consequence I have removed my questionable commentary from the previous posts.
I started this blog in an attempt to help other parents of children with CHDs who may find benefit in reading about our experiences.
If someone goes in to a situation with a prejudices caused by my flaming, they will be no more prepared than if they go in completely uninformed.
It is most important that a parent remain aware and open-minded when dealing with doctors and nurses. We are the most important advocate our child has. If we are not both aware AND open-minded, we cannot make the best decisions in regards to their health.
I will just say this. Pay attention to all the choices the professionals make. Ask lots of questions. Even if you are not medically trained (as we are not). Reasonable adults, with a little bit of effort, can understand any treatment a doctor proposes. If the treatment still seems inappropriate after it has been explained to you in a way you understand, explain why you think it is inappropriate. Just because they are professionals doesn't mean they have always thought of everything.
In the end, with enough discussion, all of the issues we had during this last hospitalization were resolved. If however we had not spoke up, Sophia's health may have suffered before the problem was recognized.
I hope I didn't paint too negative a picture of the hospital or it's staff in my previous posts, which have now been edited. We are thankful for both the hospital and its staff and I meant no harm.
I must however acknowledge, we really missed Dr. O'Laughlin. It is so helpful to have someone you know and trust advocating for your child's benefit. We really learned the degree to which we depend on him during this experience.
Thanks for ALL your advice Dr. O'Laughlin.

We are home and resting. It sure feels good to be home.

The doctors' consensus on Sophia's hospitalization was respiratory distress caused by pneumonia. She also had two horrible ear infections, likely from the same infection that caused the pneumonia.

But she is much better now and we sure are glad to be home. Sophia clapped the whole way home in the car.

I will post some type of summary of our hospital stay in the next day or so.

Thanks for all the support we received from all of you.

In the meantime, I posted a few pics of our stay on flickr.

Sorry I didn't post yesterday. It has been difficult to make any time. I went back to work. So I have been sleeping and showering at the hospital and leaving for work from the hospital.
Sophia is doing much better. We got her antibiotics switched to per tube. So no more IVs.
She got a bath today which she loved. She has been happy and playing and sleeping and eating well.
Her respiratory status is better but still not normal. She required an extra dose of lasix yesterday to help dry out her lungs a little. They will be monitoring her in/out of water closely. If it is good and her chest x-ray is good, we are hoping for discharge tomorrow. Keep your fingers crossed.
Sophia has been participating in lots of hospital sponsored activities and we have some stories and photos from her stay I will share just as soon as we are home and settled in.

Hi everyone. Sophia is still doing good.
She still needs IV antibiotics, so no talk of discharge yet.

Thanks for all the comments. Your support is so important to Patty and I.

Sophia is doing much better. She is off of oxygen and her sats are holding in the 80s (we've even seen some 90s).
She is eating well and tolerating all of her home regimen.
She has been awake more, happy and playing. We are pleased to have our little girl back. But, we have not yet heard any murmurs of discharge just yet...maybe, tomorrow.

We have been sent to the step-down floor. Sophia is pretty uncomfortable with her ear infections. She is still on a little bit of O², but it is just minimal. Her sats are hanging in the 80s with the oxygen. Her x-ray may be showing some pneumonia, but it has been my experience at this stage of the game to not lend too much credence to chest x-rays, as there interpretation is so subjective. From what I have observed, Sophia is improving. She ate about a cup of oatmeal this morning. I am hoping we can switch from IV fluids to PO (g-tube) fluids. She has tolerated her meds and what food we have been able to give her. She has not had any wet diapers other than the normal "wow, that's full" diapers she has right after her lasix. But according to her nurse she isn't behind on her output as of yet. She has some diarrhea but hasn't had much output there either.

We talked to immunology which is one of the areas that has been overlooked with Sophia's Digeorge treatment. Because there is apossibilityy of immune dysfunctionassociatedd with her syndrome, she should have had her immune response checked as a routine precaution. This has never been done. The scary part of that is that Sophia has received some live vaccines as part of her normal vaccinations. If she has immunity issues, this could have been a serious problem. Anyway the test requires a sizeable blood draw (about 20ccs or 4 tsps). It is sent to National Jewish Medical in Colorado (..I think). Anyway it takes a while to get back. I will let you know the results when we get them (probably about a month).

The other issue we are going to get checked while we are here is an unusual one. Sophia has what is called a "sacral dimple". Based on what I have read, at least 2% of the population have them. It is a small divot just above her butt at the base of her spine. Most of these are shallow and completely harmless. But in some cases, they can be quite deep and may be an indicator of neurological or spinal issues. We do not yet know what the situation with Sophia's is, as she has never had it checked out properly. But we are concerned about it because it has developed a callus-like growth in and around it and may have some drainage. Anyway, we are going to have them do an ultrasound of the area and try to determine if it is anything we need to be concerned with.

These are just a couple of the issues that have either been overlooked or qualified as lowpriorityy while Sophia was being actively treated for her heart defect. Hopefully we will get some answers. I encourage anyone who has a child with a heart defect to get genetic testing done to rule out any underlying syndrome and make sure that someone is following your child regarding other possibleanomaliess associated with possible genetic problems. I know we have had spotty care at best in this area.

It should be noted that Sophia is also being followed by an endochrinologist, as there are issues with calcium levels in kids with Digeorge syndrome.

I will try to write more about this aspect of Sophia's health in the future. I too had prioritized it behind the immediate cardiac concerns. But it is an important subject as many CHD kids have other genetic issues that require attention.

Edit: The additional issues listed above (immunology, sacral dimple...) are issues we were going to address in upcoming clinic visits. However, since we are already in the hospital...we insisted they be checked now. In other words, these are things we decided should be checked out. They are things her doctors had overlooked.

We went to the pediatrician today because Sophia had been coughing and vomiting overnight. Her breathing was labored and her color was a little blue. She had been sniffly the last couple of days but for the most part wasn't letting it get her down. The pediatrician was concerned enough to send us to the ER. The ER was concerned enough to admit us. So we are in the ICU getting IV fluids and antibiotics. She has horrible infection in both ears and there is concern of a larger infection but we won't know until the cultures have a chance to grow.
I guess this is just one of those things with heart kids. Every cold, flu, or cough has the potential to become a critical situation.
Hopefully, she will not have to be hospitalized for very long.

Sophia has had a great week. She is getting all around the house (and outside too) in her new walker. She loves it so much that she even asks us to put her in it. It makes me so happy to see her standing up like a toddler should.

We went to story time at the library again this morning. They read stories about the abc's, sang songs and decorated bookmarks. Sophia can't get enough of the other kids. She gets so excited that she growls. It is so funny. When the kids work on their little craft projects together, she likes to give the other children her crayons and art materials. She thinks sharing is way cool. We have been checking out books and DVD's from the library too. You really can not get started to early doing that in our opinion.

Our little girl has started singing! It is so cute. She tries to imitate songs that we sing to her and she now is doing the hand motions to itsy bitsy spider.

We have a busy weekend planned. Dinner at a Friends house, a birthday party at the zoo (hope the weather is nice), a dance festival in our local park and a spaghetti dinner with her grandparents on Sunday. I hope to get lots of good pictures of the zoo and will post them soon.

The photo in this post is from our trip to the pumpkin patch on Labor Day.

-Patty

Here is a picture of Sophia in her new gait trainer.
Eventhough, she threw the biggest fit I have ever witnessed from her while they were fitting it to her, she really likes it now. Hopefully, she will be standing and walking on her own before too long.

It turns out her ears were fine. The ENT said, no blockage and the tubes looked good.

Patty or I will post more soon.