Friday, June 29, 2012

Logan Update: game plan

First of all, we are totally & completely overwhelmed by the response we received this week after the news about Griffin. I wish we were able to respond to every message, text and post of encouragement you all have sent, but our time is better spent loving on our sweet boys so please know that we have read each one and are so very touched. If you have asked a question, I promise we will do our best to respond.

We had a 'care conference' with Logan's doctors yesterday to evaluate where we stand now that we are on day 30 of this hospital stay, and to develop a game plan to get where we want to be. It feels good to know everyone is on the same page and is working toward a common goal. We are so thankful for our team of doctors taking time to sit down with us and talk through every detail.

The surgeon feels like his g-tube site is looking much better, so they began feeding him through it yesterday evening. They started with a very small amount, and he has tolerated it well so they increased the rate this morning.

Neurologically, they feel he is stable enough on his seizure medications to attempt to wean him off of sedation. They are planning to do this slowly over several days and are giving him Methodone and Adivan to curb any withdrawal he may have. He does still have persistent twitching in his face as well as his left neck and shoulder at times, but complete seizure control is not the goal at this point. We want them controlled enough so they don't spiral out of control, but don't want to have to continue to rely on operating room drugs to do it.

From a respiratory standpoint, the goal is to get him off of the ventilator. Once he is on lower doses of sedatives, we should be able to see what his true respiratory status is. They are lowering the vent settings slowly as they lower the sedation, and the idea is that he will need less support as his body wakes up more. If all goes well, he could be ready for extubation as soon as early next week. They have a plan in place to go immediately to a bi-pap machine as soon as they extubate to give him the support he needs.

Specifically, our prayers are these:
- He will tolerate weaning off the sedation meds with little to no side effects and no increase in seizure activity.
- His digestive system will kick in and move his formula through just like it should.
- His lungs will be strong, his airway will be open and he will be able to take deep, consistent breaths without the help of the ventilator.
- Most of all, we pray that our baby will be peaceful, comfortable and pain free.

Bless you all for praying with us!

Tuesday, June 26, 2012

hard to find the words

We began the week with optimism that it would be one full of progress and improvement. While Logan is slowly showing signs he's getting stronger, this is turning out to be the most difficult week of our journey thus far.

First of all, I truly feel that your prayers for Logan are working. He is getting some nutrition (Pediasure) through a feeding tube that was placed down his nose, all the way into his intestine. This way, his stomach is bypassed to allow more time for the g-tube site to heal. So that's praise #1. Second, we have begun to slowly lower his Versed sedation medication. This will hopefully allow him to begin breathing better on his own and allow his digestive system to get moving again. The fear with lowering the sedation is that these meds are aiding in seizure control, and reducing them could cause breakthroughs in seizures. So we're praying that does not happen. We still have a way to go before he is off the ventilator and we even begin to think about going home. But we are thankful for the baby steps at this point.

The difficult part is that we received results from Griffin's genetic test yesterday. Once again, we received news no parent should ever have to. Griffin is affected as well. He has the same genetic mutation as Logan, so he has Alper's too. Other than being slow to walk on his own, he has shown no signs of developmental delay nor any other symptoms, so we were certain his test was going to come back negative. We are planning to consult with Logan's doctors to see if there is anything preventative we can do right now, other than wait for his symptoms to appear. Going through this with Logan has been just about all we could handle, and the thought of doing this all again and seeing another child suffer is unbearable. Griffin has been our joy and our hope, making us smile at all the right times. To say we are heartbroken and devastated would be a severe understatement. While we know in our hearts there is a greater purpose at work, we are really struggling to process at this point.

As always, thank you for your prayers. We need them now more than ever.

Monday, June 25, 2012

Logan update: pray for others

We're working on an update on Logan. Not a lot has changed since our last post, but we promise to update you soon.

Today our hearts are going out to the patients around us and their families. So while you're praying, please also say a couple for these people. We don't know what is going on with them specifically, but my heart is always heavy as I see a new patient admitted to the PICU or tearful family members gathered around a bed. I don't know exactly what they're feeling, but I do know it's a scary and unsure place to be. Since you are the best prayer warriors ever, please remember them today too.

Wednesday, June 20, 2012

Logan update: Groundhog Day

Here we sit, beginning our fourth week of this stay, and feeling kind of stagnant. Logan is still on the ventilator, though they were able to put him on the lowest setting, and he did a pretty good job breathing over the vent. In the last couple days, he has developed some congestion in the lower left portion of his lungs, so we started some new breathing treatment meds to break it up. As of this morning, that area is looking better on the x-ray.
He has also been running a fever off and on since Sunday, but the cultures are all coming back negative for infection.
The g-tube site has gone backwards from a healing perspective. After his bout with toxic shock last weekend and the extreme swelling, he has had a large amount of fluid draining off the site. It appears we are seeing a decrease in the amount of fluid in the last couple days, so there is talk of trying a different kind of tube for a while so we can start feeding him again. He's been on IV nutrition since last Saturday, and we're told nutrition is the biggest factor in promoting healing.
Since we haven't been able to use his g-tube for food or medication, he has not been able to have a couple of his seizure medications that aren't available in IV form. We have seen some increase in his seizure activity, but have been able to keep decent control of it with the sedation medications.
One of our nurses calls it Groundhog Day, and that's exactly what we feel like. We make a little progress and then have a setback, over and over and over again.
We are thankful though that he has made progress. It was a little over a week ago that we were preparing ourselves for the worst, and it's a miracle that he pulled through then. Now we pray, among many other things, that his lungs continue to improve, stay clear and he can be weaned off the ventilator in the next few days. We are also praying for the fever to go away, that he can fight off whatever is causing it and for the doctors to figure out a way to start feeding him again so his g-tube can heal.
Thank you to everyone who has been checking on us and sending warm thoughts. Sorry for the lack of updates and as always, we are so thankful for your relentless prayers.

Tuesday, June 12, 2012

Logan update... Better Each Day

We are praising God big time over here. Logan has made so much progress over the last couple days, and we are very encouraged!

He is down to one blood pressure medicine, and a very small dose of it. He seems to be responding well to the antibiotics, as the fever has stayed away for a couple days, the swelling has gone way down and his red, rashy skin is looking SO much better. He also had some moments today when he tried to wake up a little, which is a good sign. He is still on some pretty decent sedation meds while he is on the ventilator, but on several occasions today he moved his arms and legs, pointed his finger (his signature move these days), opened his eyes a little and even waved goodbye to his Grandmother and Aunt Lacie tonight!

I'm trying not to get ahead of myself by getting too excited, but it definitely seems like he is on the right track! As the week goes on, our next hurdle is coming off sedation and lowering the ventilator.

Thank you for your relentless prayers and support. They are making this experience a little more bearable and we are so grateful.

Monday, June 11, 2012

Logan update: Improving

We are looking for any small signs of improvement, and God is answering our prayers. According to blood work from last night and this morning, his kidneys seem to be functioning better, his blood pressure has improved and the acidosis is a little better. We are so thankful for these little signs that he is headed in the right direction and pray that he will continue this way.

He is still very sick and far from being out of the woods, but we are hanging on to the little miracles. He is still very swollen and has a pretty uncomfortable looking rash from the infection. So we continue to pray like we've never prayed before that he can be comfortable and pain free, that God will continue to guide us and that our whole family will have the peace and comfort that can only come from him.

I am beginning to sound redundant about how thankful we are for every prayer you have said. But it bears repeating because the response and support we've received has overwhelmed us in the most wonderful way. You all have been the hands and feet of Jesus for us and thank you will never be enough. But, that's all I have right now. So, thank you.

I wanted to leave you with a few verses that have been shared with us. I know many of you are hurting our hurts too. These verses have helped get us through the hardest moments. I pray they help you too...

"So be strong and courageous! Do not be afraid and do not panic before them. For the LORD your God will personally go ahead of you. He will neither fail you nor abandon you."
(Deut 31:6)

"The Lord is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and His understanding no one can fathom. He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not faint” (Isaiah 40:28-31)

And lastly, the verse I've clung to since this all started...
"Now all glory to God, who is able, through his mighty power at work within us, to accomplish infinitely more than we might ask or think."
(Ephesians 3:20)

Saturday, June 9, 2012

Logan Update: Turn for the Worse

We had a very promising few days this week... The g-tube seemed to be making life much easier for our little guy. His energy level was up and we got to see his adorable personality come through as he played with the nurses and entertained us all. We got some quality cuddle time in...

We even Thundered Up at the hospital for our favorite NBA team's win in the Western Conference Finals!

On Wednesday evening, we noticed that he had begun to run a bit of a fever. By Thursday, his temp was still rising so they did another chest X-ray to see if his chest congestion and respiratory problems had turned into an infection. That didn't show much, so we continued to monitor him and prayed the fever would break. Friday brought more fever and tummy problems, so they decided to take a blood culture and start an IV to give antibiotics. Unfortunately our little guy is very difficult to stick. His veins are tiny and hard to find, so after four nurses and six attempts, they had a doctor place a central line in his neck last night and got antibiotics going.

Overnight on Friday, he took a turn for the worse as he went into toxic shock from the infection. Again, our amazing doctors and nurses were quick to act. After dozens of medications and putting him back on the SiPAP machine to help him breathe, he wasn't making enough of an improvement. He was having to work really hard to breathe and wasn't going to be able to fight this off without more help. We decided to intubate him and put him on the ventilator on Saturday afternoon. One of the tests came back, and his stomach troubles were caused by C-Diff, a gastrointestinal bacteria. The blood culture they drew is also showing some form of staph infection. They gave him a blood transfusion and plasma to improve his clotting, on top of the dozens of meds he's on to improve blood pressure, help with kidney function and correct the acidosis. As of this morning, we are seeing some encouraging signs of improvement, but have a long road ahead.

We are in life support mode at the moment. He is extremely swollen and red from the infections. The doctors are very concerned and have told us we need to worry. For now, we're just trying to stay ahead of the problems and correct issues as they arise. We are hoping and praying we are making the right decisions for him. We are asking for God's mercy on our poor baby, that he will not suffer and have comfort and peace. We pray for His continued guidance as we face even more difficult decisions, and we say prayers of thankfulness for the wonderful moments we had with him this week. From the bottom of our hearts, thank you for praying with us.

Saturday, June 2, 2012

Ups & Downs

I have tried my best to keep things positive on the blog - and in life, I guess. I don't mean surfacey and fake. I just don't see a reason to be doom and gloom all the time. I genuinely do feel the hope and peace I have described before, but sometimes the reality of the situation sets in. This journey has been very difficult and trying. We have had so many wonderful moments, with a new found ability to focus on the blessings in our lives, but just as often have had dark, sad moments. So, here's your little fair warning for the not-so-positive nature of this post. I'm striving to chronicle this experience - good, bad and ugly.

This stay in the hospital has been very emotional. We were so hopeful for an uneventful procedure to place the gastronomy tube and fundo wrap on his stomach (to prevent vomiting and reflux). And while the procedure itself went very well, our sweet boy has struggled in the breathing department. We knew he was having difficulty swallowing before the procedure, and that was actually a major factor in the decision to go ahead with the port. This difficulty swallowing and clearing his airway has resulted in some fluid and congestion on his lungs. Since Thursday, we have tried chest PT, breathing treatments, diuretics and suction to help him clear the gunk from his lungs. Nothing was helping enough, so today they started BiPAP and a vibrating vest to try to help force air into his lungs and break up the congestion. On top of the respiratory troubles, the little stinker has decided he'd rather not sleep. Really, I think he'd love to sleep, just can't seem to get comfortable enough to stay asleep very long.

Given everything we've been through and dealt with so far, I know this setback doesn't seem like much. It may be extra emotional because now we have a diagnosis. Now we know that many of the problems he has won't get better, they'll only get worse. We have had very difficult conversations with our doctors this time around - talking about things like how his illness will progress, what it will look like at the end and decisions we may have to make when we get to that point. We are so thankful to have had amazing care throughout this process. Our doctors and nurses have truly been a Godsend. They have been candid and honest with us, while being very compassionate and empathetic, and we will be forever grateful for the care they have provided. Nevertheless, the subject matter is something that I prayed I would never have to discuss.

The last couple days have been especially tearful for me. I'm not ready to see him suffer. I'm not ready for one complication after another. We need more time to enjoy our boy and his precious spirit. I have full faith that he will continue to get stronger, his lungs will clear up and his breathing will improve; and it will happen in the perfect time, not my time.