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As a mom, you dread to hear bad news about your kids, but when the news can make them a target for teasing it makes it even harder. Olivia's scars make her different already does she really need more? My sweet potato pie, I'll love you no matter what.
So....we saw Dr. Natarajan and much to our dislike, she is recommending Olivia be placed on oxygen to maintain her sats and buy us time. She mentioned on multiple occasions that we could do her fontan at any point but she would really like to get her out of flu/cold season. That when we start doing oxygen it ia kinda the time to move forward with surgery. This is not the news we wanted to hear, but for now, we are heading home to enjoy christmas and wait.
Dr. Glatz and Dr. Natarajan came in to talk to us about the cath findings. Dr. Glatz said he was pleased with her maintaining 80-81 while at rest but the true test will be when she starts moving around. Dr. Natarajan said she is hoping to get Olivia to this summer for her fontan or as long as possible, but we must take it one week at a time. If her sats drop to the low 70's, then she will have to come up earlier. Naturally, brett and i are dreading that day.
So after 6 hours laying flat, we were finally able to pick her up and love on her. She has been a complete beast and needed to be medicated twice. We will see what happens tonight and will follow-up with dr. Natarajan on thursday before we leave.
Today, we head back to CHOP for a post cath follow-up appointment. This drive is filled with nerves and worry. After her cath, Olivia's saturations dd not improve as hoped. They slightly bumped up some, but far from where we were hoping. The interventional radiologist says 3 months max before her last surgery. We are hoping that her cardiologist can give us a better idea and maybe extend that time period. When her sats drop to the low 70's, it is time. Placing her on oxygen has been mentioned but i truely hope we aren't there yet.
We will also see the eye doctor today to see how she is doing since fixing her tear ducts.
Poor baby has been such a trooper and still is sweet as pie even though I feel like we are torturing her sometimes.
Dr. Glatz came to talk to us. He said they had to plug a collateral that had formed off of the side of her last one. He said while measuring oxygen levels and such he did find an area of concern. The vein that comes out of her ventricle which should have the highest oxygen was in the 70's. He thinks it is from an avm formation that occurs with glenn anatomy. The only way to fix it is to ddo the fontan. To hear those words made my stomach sink. She will stay overnight and they will see what her sats settle out at. They went from 79 to 83. They talked to her doctor, Dr Natarajan, and they will see where to go from here.
The eye doctor, Dr Katowich, is done. He came to talk to us about how it all went and was impressed with her tolerance. He did have to probe both sides and put in a stent. They may just fall out or may have to be removed in 12 weeks. We will follow-up on thursday before we head home.
We arrived early to the recovery room for olivias cath today. When we got there, she was not a happy camper. Lucky for us, versed was in her future and she became sleepy and kinda goofy. Anesthesia came to talk to us and to take her to the cath lab. The eye probing will take place first and then the heart cath. Any interventions and we spend the night. Now, we wait.
We are finally out of there. After an echo and lab work, olivia is getting in a much needed nap and then a good hearty dinner. We saw Dr. Natarajan during her echo and she was amazed at how much she has grown. Now off to rest...
So the update....
We have finished our neuro/cardio exam with a final rating of 35% for overall development. Not bad, but room to improve.
Now, we are meeting the cardiac intake center for pre-op consents. Brett has taken olivia for an xray and I am signing paperwork.
We met the eye doctor who will be doing her eyes and the right eye is definately clogged still, while the right one is questionable.
The procedures will start early tomorrow with our arrival time at the hospital at 6am.
It is hard to believe olivia is already 11 month old. Our big girl is growing by leaps and bounds. She is now 22lbs and 29 inches. She is crawling, pulling up to stand, and even taking a few steps along furniture. We are working on getting her caught up on immunizations and starting synagist season 2. The big first birthday party is slowly coming along and invites will be out soon. Overall...looking at her major accomplishments....my breath is taken away. My sweet baby girl won't be a baby much longer.
Brett and I decided to participate in a genetic mayo clinic study quite a while ago. We all had blood drawn and sent it for processing. I recieved a phone call about the results today. It seems after looking at Olivia's genetic makeup, or chromosomes, she has part of chromosome 12 duplicated. The genetist stated "i don't think it is related to her hlhs, and it has not been a recurrent finding in our study, so far. But, in order to rule out everythibg, we need to make sure it wasnt passed down from you or your husband." I politely thanked her and offered as much blood as she needed.
You would think I would be used to hearing....lab results or anatomy is NOT normal, yet it never gets easier. I foolishly started googling after I hung up, only to find a vast amount of information. In reality, it doesnt really matter what she could have. There is no way to change it and we love her no matter what.
Love you Livi
Recently, we have noticed that olivia at night has been a little more swollen. We had an appointment in two weeks to see the cardiologist, but the worrier in me was thinking worse case scenarios. Congestive heart failure, pulmonary hypertension....only the worst! So, Brett called and they were able to get her in early. Yesterday, as I was getting the lowdown, brett got rear ended. So my dad had to bring her by himself. After an echo, ekg, exam, lab work and chest xray...all was cleared. The cardiologist thinks it is because she is gaining weight, not from compromised heart function. He increased her lasix to see if it helps. We are keeping the fingers crossed.
Last night, we were surprised by Brett who walked in the house. He had stayed behind to be on the Isaac watch, but came to bring us some much needed things. After only about 4 hours with no power, we were some of the lucky ones to get it back. This morning we called our neighbor back home and found out we had power at home too. Just in time for the Saints game. We came back the looong way due to closed highways and have settled back in. We did have minor damage with water but nothing major. Most importantly, we are all safe. Goodbye Isaac!
Olivia is safe and sound at this time in Baton Rouge with her siblings and grandparents. We left daddy at home and we are enjoying the ac for now. Minor damage to our fence at home but all else seems ok. We will continue to "hunker down" and wait for this slow mover to get the heck out of dodge.
Yesterday, we went to the ent and general peds. Olivia is 19# 13 ounces, 28 inches long. Her sats were 85 and her heart rate in the 120's. She is developmentally right where she needs to be. She is crawling, babbling, trying to pull up on furniture, she can use her pincer grasp to move food that is small to her mouth and she is getting more teeth. She does have fluid in one ear that needs follow-up to see if it goes away on it own. The cyst on her ear is soft and the least of our worries according to the pediatrician. She received two immunizations and will get two more in October. She will then finally be up to date. We are trying to pull all the final details together for her birthday party. More info to come shortly.
Last night was more of the same. Olivia is still having diarrhea and living the life on pedialyte. Today when the doctor comes...we are hoping for answers. She did get more sleep than the first night which is a plus.
Labs came back....dehydrated and acidoic. For those not medical, she is so dependent on her fluids balancing out her acid in her body. When she gets behind....it builds up, she breathes faster making it worse, her sats drop leaving more acid. Very vicious cycle. She is getting iv fluids to flush out her system and build up her fluid volume in her blood stream. We dont know why she is vomiting and has the runs since no one else has it or has gotten it since wednesday. The doctor is trying to get a urine sample too, but she hasnt gone in 24 hours so it may take a while. We are hoping she will wake up in the am a whole new kid.
Olivia has been battleing vomiting and diarrhea since wednesday am. Today, no urine and still diarrhea. So we are now in the er at olol. Fun!!
Friday, Olivia had an eye doctor appointment. We were going because her eye goo is multiplying even with the eye ointment three times a day. The eye doctor here stated that the tear duct probing could be done in office with no sedation or anes as long as we did it before she turned one. Sounds great right? Well I thought so too until she said that if she moved...she may have damage done to her eyesight. How does anyone stay still let alone a baby while someone is probing their eye? So now we have to decide what we want to do. Do it here and chance it or wait and go to CHOP. Decisions decisions....