Weeks…3-4?…Updates

I have so much to write about and so little time to do it. I have at least 10 blog posts planned out in my head, but I haven’t had a spare moment to get them out, so I apologize if this post is a bit jam-packed and rambling.

Daniel is growing, growing, growing. It is incredible to see his progress day by day. After 8 weeks of setbacks, he is now taking leaps and bounds forward. He has gained a pound and a half since discharge, he no longer cries when you pick him up under the arms, and stands up on his feet when you hold him up, he has total head control, and he tries to roll over when you put him flat on the floor.

He absolutely adores his big brother David. When David comes around, Daniel immediately gives him a big smile. Hannah has really come around to Daniel. She treats him like a bigger, interactive version of her baby dolls. It is so funny to see the differences in their relationships with him– David pretends Daniel is his Palawan learner and gives him a “lightsaber” to battle with him, and Hannah is a little mommy.

(Pic on the left– Daniel with his “lightsaber.” Pic on the right– Hannah petting Daniel’s head and hovering around him like a mother hen.)

So far, Daniel has received good reports at his cardiology appointments. A week and a half ago, he had an X-ray and blood work. His X-ray came back clear, and his blood work looked good. This is great news because Daniel’s lungs were having trouble clearing out for 8 weeks in the hospital, which is why we were stuck there so long. Since his diaphragm plication, his lungs have been great. The blood work is also really good news. Daniel is on so many medications and a lot of diuretics, so it is essential that his electrolytes stay in balance. So far, so good.

On Friday, January 11th, Daniel had another swallow study. Remember– Daniel’s left vocal chord was re-paralyzed during the Glenn. This is a problem because it can mean he aspirates when eating by mouth, which is why he has a g-tube. During the swallow study, he took a bottle that contained barium, and he drank the bottle in front of a huge machine. The speech therapist was able to see his tongue and mouth moving, and she could see the fluid going down his throat. For the most part, Daniel did really well. For a baby who has never eaten by mouth in his 6 months of life, he has a great suck, and he loves to drink.

Unfortunately, after a few minutes of drinking, he silently aspirates. This means that fluid goes down his windpipe to his lungs, and he doesn’t cough to indicate it. The speech therapist says he is “right there,” and we will repeat the study in a month. It is really good news that he doesn’t have any oral aversions, and we don’t need to teach him how to suck. Basically this just means another month of g-tube feeds, which is inconvenient because he is tethered to his IV pole so often, and he has started to try to chew on his tube when he can get his hands on it.

Mainly, his failure of his swallow study is a huge problem because of the withdrawals he is experiencing. Daniel was intubated off and on for 3 weeks after the Glenn. He had to remain sedated all that time, and Daniel has a huge tolerance to drugs. He needed a massive dose of Precedex and Fentanyl to keep him sedated all that time. When they extubated him finally, they had to substitute other drugs for the Precedex and Fentanyl. He started taking Clonidine to help with the Precedex withdrawal, and Ativan and Methadone for the Fentanyl. He is finally off methadone, but we are having a really hard time weaning his Ativan. Before his doses of Ativan, he has diarrhea and he vomits.

I am terrified of his vomiting because I’m afraid he is aspirating the vomit when it comes up his throat, and aspiration of his stomach contents could develop into pneumonia. I am petrified of more complications, and I desperately want to avoid Houston at all costs. We spent 110 days in the hospital, and I REALLY don’t want to go back.

Daniel didn’t have trouble weaning off the methadone, but I think it was because he was at the lowest possible dose for a week before we started spacing it out more. So, we are backing off on the Clonidine and Ativan wean. I was hoping he could be off of them by tomorrow, but he is showing me he isn’t ready, so we are going to give him the lowest dose every 6 hours for a few days to give his body a chance to adjust. Hopefully in a few days, it won’t be so hard to go to every 8 hours, every 12 hours, and eventually once a day.

It has been interesting getting back into the swing of things in the three weeks since coming home. We are trying to re-establish routines, but it is really tough with Daniel. His meds, oxygen needs, withdrawals, and feeds keep me really busy. He needs constant TLC, so we are pretty much just surviving still. I think we are all just so happy to be together again, even if that means we don’t have a good bedtime routine. Some things have to go by the wayside, and that is one of them. Once Daniel is off the Ativan and oxygen, things will be easier. For now, we are just trying to get moment to moment.

David spends most of his time building with Legos. Pictured above his his AT-M6 (featured in the battle scenes from The Last Jedi), a duck, and a siege cannon (also featured in The Last Jedi). He has recently designed and built a model of General Grievous (from Revenge of the Sith). His creations are getting more and more elaborate and complex. Hannah is such a girly-girl. She loves jewelry, sparkles, and dresses. Her favorite toys are her stuffed animals and dolls.

It is amazing to me how much the kids have grown up in the 6 months of insanity of 2018. For pretty much 6 months, Brian and I were in and out of the kids’ lives. Now we are home, and the kids are so grown up. David starts pre-K next year at Providence, and I will start teaching again there. Hannah will also go to daycare at First Baptist Belton, which is the school campus for Providence. Life is going forward. We are no longer stalled in an upside down world.

After being home for 3 weeks and getting used to seeing all my kids every day, I will do anything to stay here. That means David and Hannah can’t really be around any other kids until flu season is over. If David and Hannah get sick, they would bring it home to Daniel. Daniel is so weak still and just beginning to recover. Even something like the common cold would be devastating for Daniel. Often times, people don’t even know they are sick, and they spread their infections before they even start to show symptoms themselves. This is why David and Hannah need to remain tucked away at home.

I am trying not to live in fear. I was reading about the “United Monarchy” in my chronological bible this morning. I came across Psalm 59, which David wrote after Saul sent soldiers to watch David’s house in order to kill him. Think about all the terrifying situations David had been in by this time– he battled Goliath without armor and with just three small stones. Then Saul, his king and his mentor, was inflamed with jealousy and tried to hunt him down to kill him multiple times. Each time, instead of giving in to fear, David praises God. It would be easy to forget that his power didn’t come from himself but from God, but David continues to sing of God’s power in times of trouble.

In Psalm 59, verses 16-17 he writes, “But as for me, I will sing about your power. Each morning I will sing with joy about your unfailing love. For you have been my refuge, a place of safety when I am in distress. O my Strength, to you I sing praises, for you, O God, are my refuge, the God who shows me unfailing love.”

Another time, David has to pretend to be insane to escape the wrath of King Achish, whose officers were unhappy David was trying to use the king’s court as a refuge from Saul’s persecution. Once again, David was on the run from Saul. In Psalm 34, David writes, “I will praise the Lord at all times. I will constantly speak his praises. I will boast only in the Lord; let all who are helpless take heart. Come, let us tell of the Lord’s greatness; let us exalt his name together. I prayed to the Lord, and he answered me…The Lord hears his people when they call to him for help. He rescues them from all their troubles. The Lord is close to the brokenhearted; he rescues those whose spirits are crushed” (Psalm 34:1-4, 17-18).

After hiding in a cave from Saul, David wrote, “I will hide beneath the shadow of your wings until the danger passes by. I cry out to God Most High, to God who will fulfill his purpose for me…My God will send forth his unfailing love and faithfulness…My heart is confident in you, O God; my heart is confident…For your unfailing love is as high as the heavens. Your faithfulness reaches to the clouds” (Psalm 57: 1-3, 7, 10).

As David is being constantly betrayed by men, he puts his faith in God, and he sees reminders of God’s steadfast mercy and unfailing love in each dangerous situation. What an incredible reminder for me, as I face my own fears about Daniel’s future!

I continue to pray for God to fulfill His purpose for me and for my children to His glory. Amen.

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