Archive for September, 2009

Still Holding On

September 25th, 2009 Nell Turgeon No comments

Today Faith continued to cooperate. The doctors were pleased with the progress that she was making. It is slow progress, but steps in the right direction nonetheless. The staff is still not planning on things going very quickly. Yesterday they painted her door. It is much more colorful. The social worker wants us to bring in pictures to decorate her room. It’s hard to want to decorate because it’s like you are giving in to her being there for a while longer. By not putting anything up, we are able to hold on to the thought that she will come home sooner. We’ll see how it goes over the weekend. Maybe if things continue the way they have over the last day, it won’t be much longer.

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day 19

September 22nd, 2009 Nell Turgeon 1 comment

It has been six days since Faith’s last surgery. Her heart appears to be doing well, but her lungs are still very sick. She has developed the same bacteria’s in her trachea that were there before the last surgery. The doctors have been working aggressively to treat it, but that has required a substantial amount of fluids.

This has made it difficult to heal the other damages to her lungs. In order to help with some lung recovery, her chest has been left open, and she has a patch holding it together. The idea is to allow her heart and lungs more room to work under less stress.

Some good news is that the secretions in her lungs that were once bloody have been clearing up. Unfortunately at this point, there are so many other things going on. It is like a vicious circle. She needs the oxygen, but at the same time it can cause more damage. The doctors are working really hard to balance everything, but it is going to be a long process. It could easily be another month that she is here, but there is no way to tell at this point.

Faith’s heart has been doing better. Her blood pressures have been more consistent, and the rhythm has been perfect. She hasn’t needed the pacemaker at all. The only time that her heart has been wacky is when she has a fever. Once her temperature gets to 99.5 degrees, her heart rate goes up and blood pressure drops. Since they have been treating the infection, that hasn’t been an issue. As of now, she is on four different medications to treat all different types of infections. Once they close her chest, they’ll be able to discontinue some of the antibiotics.

The plan right now is to go slow. They are working to get as much fluid off as possible. This will hopefully help her lungs enough that they can decrease the amount of air pressure needed to oxygenate her lungs. Once the pressure is low enough, they will close her chest. From there, they can look at a number of different options that aren’t available to someone with an open chest.

As this continues, we ask that everyone continue to pray. The fact that she made it out of the surgery so well is only by God, and Nell and I are asking Him for more miracles. We are both anxious for her to get better, but right now there doesn’t seem to be any end in sight. The both of us believe that God is going to do something awesome. All through the pregnancy and up to this point, we have told Faith that God has something awesome in store for her. Now is just the start.

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Round 2

September 16th, 2009 Nell Turgeon No comments

Today Faith is goin­g in for another surgery. Her mitral valve has some severe leakage, which the doctors believe to be the biggest cause Faith’s current condition. The surgeon is going to go back in, and either try further repairs or replace the valve all together. The replacement valve will be made of pyrolitic carbon, and it will be 15mm or 17mm in size. The 15mm valve is a custom valve that is made specifically for this operation.

This surgery, however, does not come without significant risk. At this point Faith’s lungs are very sick. They have not been able to significantly recover from her previous surgery because of leakage in the mitral valve. With her lungs so sick, there is a high probability that she will be unable to come off bypass because her lungs will not be able to take the trauma of another surgery. Thankfully there is a portable bypass machine called EKMO. It is not perfect, but it at least gives Faith a chance to recover. Statistically, babies that have “normal” heart anatomy after surgery (Faith fits in this category) have about a 50% chance of ever getting off of it. Another risk in valve replacement is that it can cause abnormal heart rhythm. This would require Faith to have a pacemaker for the rest of her life.

The good news for us is that we have a number of things working in our favor. First, we have a lot of people constantly praying for her. God holds the entire universe in his hands, and he is hearing every ones prayers. Secondly, her heart has been working great other than the leaky valve. This makes everything a little easier. Lastly, her kidneys are working very well. That is important in her getting off of EKMO if it is necessary to put her on it in the first place. Her kidneys need to be able to get a lot of fluid off her in order for to get better.

The surgery is today at 7:30. Nell and I will work diligently to keep everyone up to date. We both appreciate all the prayers and support. Please continue. It will only be by God that she eventually comes home with us.

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day 6

September 10th, 2009 Nell Turgeon 2 comments

We have been in the hospital for 1 week now, and nothing has really changed. The last two days have been the hardest. It looked like Monday was the start of turning the corner, but Tuesday was a couple steps back. Thankfully,Nell and I are not going this path alone. It is rough at times, but God continues to give us the strength to keep moving forward every day.

One thing God has taught me so far is that often times; we feel that we trust God. We convince ourselves that the faith we have in our own abilities and the abilities of others is true faith in God, but honestly, it isn’t. It isn’t until we find ourselves in a position where there is nothing that we can do, that we truly put our faith in God. Over the last few days, the doctors have had no answers to Faith’s condition. Each day, they look at x-rays of her lungs, look at the results of her tests, and schedule more antibiotics, but nothing has changed. There is no explanation. The only option left is to put it in Gods hands.

Nell and I ask is that you all continue with the prayers. We have a long road ahead. We made a quick trip home to get a new set of clothes today. We got sick of cycling through the same 3 sets of clothes. The both of us know that things will get better here. Faith just has a very distinct way of taking her sweet time with everything. She did the same thing when she was in the NICU. We will keep you all posted as God keeps revealing His plan.

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day 3

September 6th, 2009 Nell Turgeon 4 comments

Well, it looks like we might have finally started to turn a corner. Up until this morning the doctors were just trying to keep Faith stabilized. Now they can switch modes and start trying to be more proactive. They started today by putting her on lasix. This drug is a diuretic that will help get rid of the extra fluid build up. In order to keep her blood pressure up, she has been taking in more fluid than she has been able to put out. She has responded well to this, so the doctors have been able to reduce the amount of FIO2 (fraction of inspired oxygen) and respirations. Her O2 saturations are still good and they are just trying to be patient before they take another step. If Faith is able to maintain her blood pressure and the amount of O2 in her blood gases increases, they will start to wean her off the vecuronium. This is what we are shooting for tomorrow. Most likely when they get her off the paralytic, she will digress temporarily. She will need to learn that she doesn’t need to fight the respirator. Also, once she is off the vecuronium, she will need to be stable for a while before they try to reduce another form of support. We are hoping that we can at least get rid of one piece of paraphernalia each day. We’ll see how tomorrow goes. Nell and I both appreciate all the prayers, and we’ll do our best to keep you all up to date.

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post-op day 2

September 5th, 2009 Nell Turgeon 2 comments

The surgery went well considering all that was done. They did fix the coarctation as well as the AV canal defect. The operation lasted about 7 hours, and it was about 12 hours until we were able to see Faith again. It basically all went according to the plan that was laid out in the previous post. There were a couple of things that the found once they started the operation that needed to be fixed. The first was that the right ventricle walls were not relaxing open the way that it should. Some of the bundles of muscle tissue had connected both the posterior (back) and anterior (front) walls. The surgeon cut the bundles allowing the right ventricle to open fully. This wasn’t a big deal for the surgeon when he saw it.

The second unexpected event during the course of the surgery was when the amount of tissue available to reconstruct her mitral valve. As the surgeon went fix it, he had to get creative in order to do so because there was a lack of the muscle tissue. Typically there are three different classifications for mitral valve leaflets. Unfortunately, Faith’s didn’t fit into any of the classifications. Because of the original condition of the valve, we knew there was going to be some amount of leakage (murmur). Mild leakage is not necessarily an issue, moderate leakage can be controlled with medication, and severe leakage may require another surgery. At this time, the leakage is moderate, and they are monitoring it. The doctors are anticipating Faith needing blood pressure medicine to help. Other than those unexpected events, everything went well.

Last night, things started to get a little crazy. Faith is a very strong little girl, but sometimes it works against her. All day yesterday she fought everything that was trying to help her. That caused her blood pressure to be all over the place. They finally had to give her vecuronium, which is a paralyzing agent. She is also on versed, morphine, epi, dopamine, and a few other meds that I can’t remember. Basically she is as “happy” as she can be considering all that she has been through.

Between the hours of 9 and 11:30 pm, it was all hands on deck. The surgeon and cardiologist both had to come in. There were three doctors and four nurses working on our baby. The goal was to find what was causing her blood pressure to go all over the place. The Cardiologist did an echocardiogram and both he and the surgeon intently watched the monitors looking for something that would explain what was going on. What they found is that even though her heart was keeping the same amount of beats per minute, the rhythm changed ever so slightly. In order to keep the same rhythm, they have her hooked to a pacemaker. This is not permanent. Once she is able to handle it on her own, they will disconnect the pacemaker.

The other concern last night and today is her lungs. She does have pulmonary hypertension, and her lungs are very sick. The left upper lobe was somewhat collapsed yesterday, but has been getting better. There is still a lot of fluid surrounding the lungs and they are very wet from the two major heart surgeries that she went through. They will not be able to start getting rid of the fluid until her blood pressure is stable. She will receive more lasix to assist with the removal of the fluid once she is consistently stable.

Her blood pressure has been cooperating a little. It still needs to be about 10 points higher. In order to keep her blood vessels dilated and her lungs relaxed, they have put her on Viagra. Originally they were going to use straight nitric oxide. They also lowered her core body temperature from 37.4 degrees Celsius to 36.2 degrees Celsius. Both these adjustments seem to be working. Hopefully she will continue to allow these things to help her and she wont fight them; which she should considering the fact that they have her pretty well conked out.

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Surgery Day

September 3rd, 2009 Nell Turgeon 2 comments

Today is the day that Faith finally gets her heart repaired. Nell and I are actually a lot more relaxed now then we were last night and this morning. It was kind of fun getting her ready in Pre-Op. They have little hospital gowns for babies. She went back in the OR for anesthesia around 8:30. Now we will spend the rest of the day in the waiting room. It probably won’t be until 5 or 6 tonight that we will finally be able to see her. After that they will keep her sedated for another 48 hours to make sure that everything is working properly.

Yesterday we spent 5 hours around the hospital getting her registered and her testing done. Basically Nell and I got an honorary medical degree from all the information we received. The process for today’s surgery is amazing. The first step in the process after anesthesia is to perform another echocardiogram. This one will be done internally. They will run a tube into her stomach and look to see if they need to correct the coarctation in her aorta. They don’t want to fix the aorta if they don’t have to; it adds more complexity to the surgery. The tube will remain in her stomach for the entire procedure. That is what they use to monitor how well the patches are in place.

Even though they are going to double check the aorta, they are going in with the expectation of fixing it. Once the decision is made to fix the aorta or not, they will begin opening her up. The aorta will be the first part fixed. For that, they will actually take her completely off bypass and ice her body down to cool her body temperature about in half. For about 20 minutes there will be no blood flow to her entire body. They can do this for up to 40 minutes before causing any neurological damage. When they fix a coarctation, they actually cut out the narrowed section and pull it back together and stitch it up. At her age things are very elastic so they don’t have to put anything in to fill the gap. Once the repair is completed they will put her back on bypass and warm her back up.

Next they will start working on the inside of her heart. They will start by placing a Gore-Tex patch between right and left ventricle. Because the ventricles are high-pressure chambers they need a patch that is stronger than any of her other tissue. The patch between the right and left atriums will be made of her own muscle tissue. The lower patch is the most critical. For that patch they have to stitch around the AV Node. If the AV Node is damaged, Faith will always be on a pacemaker. Chances of that happening are less than 1%.

The last part of the procedure is to reconstruct one of her valves. Right now it is as if the valve is made up of three leaflets instead of two. They will stitch two of them together. After that they will wait an hour or so to make sure there is no internal bleeding before closing her up completely. They will bring her up to the Pediatric Intensive Care Unite (PICU) for recovery. It usually takes 1.5 – 2 hours to get her all set up there before we can see her. When we do get to see here, there will be a lot of tubes and wires. We’ll see what they all look like around 6 pm.

Nell and I really appreciate all of your prayers. We will continue to keep you all posted as we receive updates throughout the day.

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