An unexpected twist

So...as you all know, Jackson has been having a hard time getting rid of his breathing tube. We have had several days in a row of no significant progress in any area. Waiting, waiting on that tube. These days without progress are some of the hardest days for our morale. It feels, on such days, that we will be in the midst of this trial for the rest of our lives. By last night our hearts were very heavy with feeling the weight of needing our lives to return to normal. We cried out to the Lord together that He might be pleased to bring this particular season to an end by allowing us all to go home. It remains to be seen exactly how God will be pleased to unfold our remaining days here in St. Louis, but it sure seemed He had begun to answer when I walked into Jackson's room this morning. The plan for today was to reassess Jackson's ability to breathe without his breathing tube (same plan, second verse). If all factors were positive, it would be removed sometime mid-morning. Well, God took matters into His own hands--or, rather, put them in Jackson's. Around 6 am this morning Jackson pulled out his breathing tube. Ha! I still can't believe it! He is now receiving oxygen through his nose, and tolerating it beautifully! In fact, they plan to wean his oxygen throughout the night from 8 liters to 4 liters. They do not anticipate he will have trouble with this. Because of the tube being gone, my little buddy was almost immediately placed back into my arms. Indescribable! Our hearts are humbled with thanksgiving. Would you pray with us that Jackson would continue to make speedy progress toward health and home?

Patient #2

Patient #2 is no longer a patient! He had his cardiac MRI but won't know the results till his follow up visit in 1 or 2 weeks. We are so, so, so grateful to be together again. Woohoo! Now if we could just get patient #1 to cooperate...

Patient #1

Our sweet little buddy is having a very, extra, super calm day today. He's been having pretty significant withdrawal symptoms for a couple days now. They were giving him Morphine boluses to help with this but with very little result. This morning the nurse gave him Ativan instead. Wow it definitely worked...a little too well! We are, however, grateful for a day of good rest for him. As of this morning he is at the lowest CPAP setting. If he tolerates this okay then they hope to take his breathing tube out tomorrow or Saturday. I am aching to hold him again....I've only been able to a handful of times over the last month. Lord-willing when the tube is out!

Last night I happened to be in the hall when a new patient arrived to CICU. It was a little baby boy, and everything about him reminded me of when Jackson was first born. He even went to the room Jackson was originally in! I saw his parents waiting in the waiting room--my heart absolutely ached for them. How hard the beginning of the journey is! I pray if they don't know God they may meet Him along the way. He is the only Hope. Along with the aching, I felt a flood  of gratitude that Jackson is still with us. We came so close to losing him in those first few days. What a priceless gift...thank You, God.

Patient #2

Mason has been waiting all day to be taken for his MRI. They finally took him around 2--I'm now in his room waiting for him to get back. They hope to discharge him "after" the MRI, but we're not sure exactly when that might be. :) His poor roommate has been waiting several hours for discharge papers. Praying for some good rest for Mason over the next few days! He's in good spirits, but ready to get out of here!

Patient #3

My (Mason's) mom had surgery today for breast cancer. This surgery has been weighing on all our hearts for a few months. I am very happy to report the surgery was successful and she is doing very well. Praise the Lord! All three hospitalized Vanns have had an encouraging day!

(Mom, Dad, and Lacie holding up a "V" for "Vanns")

Unfortunately Jackson was unavailable for a pose for the camera. Addtionally, Mom and I would like to express our gratitude to Jackson for sharing his blog. The new pacifiers should be in the mail... :-)

Patient #1

Jackson is just chilling today. His chest tube was removed this morning because he had had a couple days of no output. Praying for no more fluid buildup! He is still on CPAP respiratory support. If he can tolerate switching to high flow oxygen them they will remove his breathing tube--hopefully by tomorrow. The cardiologist mentioned they will be watching Jackson very closely due to Mason having the myocarditis. We sure appreciate your prayers for his protection and healing.

Patient #2

Mason is now in the cardiac step down unit in Barnes. He moved yesterday evening. Cardiology came by last night and gave a more thorough report. He has pneumonia and myocarditis (inflammation of the middle layer of the heart wall). Myocarditis does have the potential to cause very significant heart damage. So far it seems his heart has been mildly affected. They plan to do a MRI of his heart this afternoon to better assess any damage. He is resting and receiving a boatload of antibiotics.

Thank you for prayers. I keep thinking of the book of Job where Satan has already destroyed Job's possessions and family. Job was still submitting to and trusting in God, but Satan says to God, "But stretch out Your hand and touch his bone and his flesh, and he will surely curse You to Your face." Job 2:5 Satan has taken our sufferings to a new and even more personal level. Pray that God might uphold our hearts--to give Him the thanks and glory He continues to deserve.

Patient #1

Jackson is doing very well today. He still has his breathing tube, but is only using it for CPAP support (he takes all his own breaths-the machine supports the breaths). He is calm and a bit more alert (though still partially sedated). He has been back on breast milk for several days and is tolerating it well. Dad and Mom drove down to see us and took our two older kids back with them. Very sad to see them go, but this will be very helpful for focusing on getting Jackson (and Mason!) home.

Patient #2

Well, Mason is hanging out in the CICU, but not at Children's. He was admitted to Barnes Jewish last night for what turned out to be a bad case of pneumonia. When they first started running tests, some of his heart stats were coming back out of whack. After ruling out several things, they feel it is the pneumonia itself that adversely affected his heart function last night. His blood pressure is just a little on the low side now but improving. He is on antibiotics and got a good bit of fluids for dehydration. They plan to move him to a step down floor this evening. Thank you to all who are praying...these things are beyond our comprehension and control. God will keep us.

November 2nd

Tuesday, September 2nd, was the day of my doctor's visit in Kirksville that spiraled into the last nine weeks. But the word "spiraled" gives the impression that those nine weeks have been chaotic and out of control. By God's grace that is not true--He was in control September 1st and He remains in control today.

"Jesus, Jesus how I trust Him;
How I've proved Him o'er and o'er!
Jesus, Jesus, blessed Jesus,
Oh for grace to trust Him more."

Jackson gave us quite a scare Friday night. Around 8:30 pm one of the doctors from Children's called. Other than for post-procedure reports, that has only happened two other times since Jackson was born. He said that even with the ventilator support (it was at partial support--my last update was incorrect about that) Jackson wasn't breathing well, and they noticed an increasing amount of bloody sputum from his ventilator tube when suctioned. They planned to increase the vent back up to full support and begin to aggressively attempt to get rid of any extra fluids by diuresis. He asked, "Are you coming back to the hospital?" The only other time we have ever been asked that by a doctor was at Jackson's birth when he was so close to dying. You can imagine the effect it had. Since Mason had been at the hospital most of the day, we decided I would go for an hour or so and then come back so Mason could take over for the rest of the night. When I got there I noticed immediately that it was dark in Jackson's room and I could only see one other person--a good sign. Whenever a patient isn't doing well, all the lights are on and the room is a flurry of activity. I walked into his room and the nurse was quietly and busily working at Jackson's bedside. He didn't say anything. I walked over beside the bed and said, "Hi there, buddy" down by Jackson's ear. He immediately turned his little head and gazed into my eyes. What a gift from God! My heart melted and broke at the same time. The nurse said, "Give me just a minute and I'll give you an update." Whenever he returned he had two doctors with him. One was the doctor who had called, the other a more senior doctor. The senior doctor is one we have dealt with several times--very kind and caring. He told me he suspected the extra fluid they had told us about earlier in the day was actually more pronounced than they realized. He felt Jackson had had very quickly escalating pulmonary edema and this had led to the bloody sputum and difficulty breathing. He said, "At the beginning I was very concerned." I asked him at what point (ie what physical indicators) he might feel more comfortable with how Jackson was doing. He said, "I already do. He is doing much better. Now we will try to get rid of fluids quickly and see how he responds." Praise the Lord. They gave him sedatives, a paralytic medicine, diuretics, and full ventilator support. Throughout the night Jackson did wonderfully. He peed and peed and peed some more! The ventilator took over for him and his body was able to rest. When I called in the night his nurse said he looked and sounded better, his labs were coming back improved, etc.

Yesterday was day two of the same story. They were able to lift the paralytic medicine, but Jackson's day was comprised of resting and peeing. He had one of our favorite nurses--yay! When I saw him yesterday evening he looked the least swollen that he has since surgery. Double yay!! He looks very sickly and frail. The doctors feel he is just absolutely worn out from all he has been through even just in the past week. Based solely on how he looks, we would definitely agree.

I called the nurse in the night last night. She said he was having a wonderful night, had a bath, and was all cozied into his bed. It was a wonderful way to go back to my bed. I can't wait to see him today!