September 20, 2013
Well I definitely didn’t think I would be blogging from the hospital today. This week didn’t turn out exactly the way we thought it would, but I guess with a heart kid it never does. All we were supposed to do this week was a heart cath to open up her arteries a little more so that her right ventricle wouldn’t have to work so hard. She’s had a chronic cough for the last few months, so while she was already sedated we elected to do a bronchoscopy. We were not expecting bad news. We were actually expecting to leave here Wednesday being able to put the hospital and doctors behind us for a little while. We are quickly learning that we should never go into these procedures with high expectations because then it is an even bigger disappointment when you realize things are not getting better.
They started the procedure Tuesday with the bronchoscopy. They found that her left bronchus is 80% obstructed. They can’t be sure what is causing this, but their best guess is that her pulmonary artery is enlarged and laying on top of the bronchus. During the heart cath they didn’t actually do any work. They didn’t find any narrowing of her arteries… this is good news. However, the pressure in her lung arteries is very high so that is concerning.
We were supposed to go home yesterday but Olivia’s oxygen levels are going up and down. She is still on about 1 liter of oxygen. Overnight her levels dipped quite a bit. This could be because of the bronchoscopy and anesthesia, but better safe than sorry. John is on the road until Sunday and I just feel better being at the hospital until things are A-OK.
Olivia’s team of doctors met this morning to start putting together a plan. First on the agenda is a CT Scan in the morning. She’ll have to be sedated so we will probably be staying in the hospital until Saturday. The options for us right now are to start medications to lower her pressures over the next month. They have talked about putting in a valve, but that means she will have to have an additional surgery in the future to replace it as she grows. The other option is to do a surgery in which they would lift her pulmonary artery up off of the bronchus to relieve the pressure. After the CT Scan tomorrow they will have a better idea of what they are dealing with and will be able to make a more educated decision. There is a very slight chance they will decide to put off surgery and see if as she grows her airway opens up on its own. There are risks involved in all of the options. I am very thankful they are covering all of their bases and being so thorough. We are so lucky to live 10 minutes away from such a great hospital.
It is hard to process everything that’s going on right now. I feel kind of numb in a way. It makes me sad that my baby has to go through so much. I want nothing more than for Olivia to have a normal childhood, but she may just have her own kind of “normal.” She is such a sweet baby girl and I hate seeing her hooked up to all of the wires, especially now that she is used to being so mobile. She is being a trooper though. She hardly ever complains or cries. I am a lucky mommy to have such a strong little girl. My heart breaks when I think that she may have to go through another surgery. It fills my whole body with fear. I can’t even put into words the way I feel right now. All I know to do is pray for the strength to be the best mommy I can be. When you have a sick child you just have to live in the moment… day by day. It is the only way. If I let my mind go where it wants to go it will just cause nothing but worry. Worry won’t change anything.
September 22, 2013
Well we are home! Yay. What a week!!! Olivia’s CT Scan actually was better than expected. When she had her first surgery when she was a day old she got an infection of the mediastinum (chest wall). That’s why we spent 6 weeks in the hospital. If you remember, she had a wound vac to help heal the infection. Well, because of that infection she has some scar tissue that has caused a blockage of her airway. This is good news because this means it is NOT her artery so for now no surgery is required. We know she will need a valve replacement at some point but hopefully by the time she needs it they will be able to do it through a heart cath. As far as the blockage, the only treatment they can do right now is oxygen treatment and medication. She will need supplemental oxygen 24/7 to help get her pressures down. There’s no way to know how long she will need it but hopefully just a little while. She is also taking Viagra (I know… funny). Viagra was originally used as a pulmonary drug. It helps relieve the high pressures in her lungs. She is doing really good on it. No side effects which is great. Her condition is something her Pulmonologist is hoping she will outgrow as her lungs get bigger. Every child is different so they can’t give us any answers on that right now.
I was really nervous about her needing to be on oxygen 24/7 at home because she is so active. Luckily, they gave us some extra tubing that stretches from one end of our house to the other so I never have to unhook her or move the compressor. She can just travel about the house as she normally would. Let me just tell you it is not slowing her down one bit. Last night was our first night home from the hospital and she was back to her crazy little self. She danced and played. She hasn’t fussed a bit about this tubing hanging off of her. She is such a trooper. I would probably be whining about it myself. We also have some tiny little tanks that I can carry in a shoulder bag. This will be great for our walks at the greenway and trips to Target. These two girls love our little outings. We can’t let the oxygen keep us down right?!?
Daddy comes home today and we are planning to go on a little family vacation. We had originally planned to fly to Fort Lauderdale but Olivia can’t fly right now because of her lung pressures. Now we are trying to figure out another option. I REALLY want to go to the beach so we are checking into the Destin area so we can drive. We haven’t been on a real vacation in over 3 years. It’s time!!!
As always, thank you for your prayers. My grandmother said yesterday “God is with you. It is the only way you could ever be strong enough to get through all of this.” She is right. As a human being there is no way you can handle something so stressful on your own. I like to think of myself as a pretty strong person but I am not THAT strong. I am thankful for my sweet friends who took time out of their busy lives this week to come and spend time with us in the hospital. I don’t know what I would do without them.
My phone constantly chimes with text messages from the friends who can’t make it by and that means just as much. It is so comforting to know that we have so many people that love and support us. It is very hard to live away from your family and go through something like this so THANK YOU to everyone who follows along on Facebook and sends prayers up for our sweet little warrior angel. We love you and will continue to keep you updated.