"Sometimes the smallest things take up the most room in your heart." - Winnie the Pooh
Sunday, November 30, 2014
Testing 1, 2, 3
Jackson is testing out his car seat right now. They like to make sure vital signs stay good for the trip home. So far he's doing great! They are still using the word "discharge" in almost every sentence, so it's looking like this may really happen...! He will be coming home on IV antibiotics, oxygen, tube feedings, oral medications, and possibly one twice daily shot. I have to admit my heart is trembling at the thought of it all. But God has brought a boy who never should've lived to the point of being able to go home. We know we can look to Him for this next step. The main verse of the devotional I read this morning was, "The Lord is the one who goes ahead of you, He will be with you; He will not fail you or forsake you. Do not fear or be dismayed." Deuteronomy 31:8 Would you pray for us? For faith to see the unseen and grace to match the needs of each day. We can't begin to express our gratitude to each of you who have cared enough to follow our journey and pray us through each step. I plan to continue to post updates on Jackson's progress and any specific prayer requests. Wouldn't it be wonderful to one day post a video of his first steps or first words? God is able. We are anxious to see what His best for Jackson turns out to be. We know it has to be good...
Wednesday, November 26, 2014
Thankful
I hardly know what to write when I pause for a moment to think of what I'm thankful for this Thanksgiving Day eve. I can't help but fly backwards mentally to the morning hours of September 5th when I stood by Jackson's bed for the first time. The wonder I felt in my heart when I was able to really look at him for the first time was overwhelming. There was my son. There was the baby who had kicked and prodded inside of me so much...and then, all of a sudden, not so much. His life seemed like a fragile thread of a spider's web. The slightest puff of air and it would vanish before our eyes. I couldn't shake the feeling of fragility--or the feeling of perfection. He was just so perfect. It's unbelievable, really, what happens to you as a parent in a situation like his. When I first saw Jackson he was literally covered in equipment. Breathing tube, monitoring leads, umbilical line, central line, arterial line, peripheral line...not to mention the 20+ EEG leads covering his head. But when I looked at him I saw none of that. He was alive. He was my son. He was perfect. Before I was able to leave the hospital in Columbia, when Jackson was already in St. Louis, the nurse brought me their packet of paperwork I needed to fill out. Inside was a paper that said, "Application for birth certificate/death certificate". I hesitated for a split second thinking, "Which one?" Then determined in my heart that I would fill out his birth certificate. No matter what happened, no one could deny that Jackson Samuel Vann had lived. Now, in just a few more minutes, Jackson will be 12 weeks old. Today I held him, and rocked him, and sang to him when I changed his diaper. Yes, I am very, very, very thankful for Jackson.
But what does it mean when we say we are "thankful"? To whom? I'm certainly not thankful to Jackson for living. He had nothing to do with it. I'm thankful to the doctors for their care, but they knew as well as we did that they couldn't ultimately preserve his life...they didn't even expect him to live. The fact of the matter is that Jackson isn't the end-all. We are never given gifts only to turn around and tell that gift, "thank you". That's crazy. Jackson is our gift. But he is only a gift. Jesus is the Giver. So tonight I am marveling at the tremendous gift of Jackson's life--and falling down in worship at the feet of the Giver. Thank You. You are...good.
"Every good gift and every perfect gift is from above, coming down from the Father..." James 1:17
But what does it mean when we say we are "thankful"? To whom? I'm certainly not thankful to Jackson for living. He had nothing to do with it. I'm thankful to the doctors for their care, but they knew as well as we did that they couldn't ultimately preserve his life...they didn't even expect him to live. The fact of the matter is that Jackson isn't the end-all. We are never given gifts only to turn around and tell that gift, "thank you". That's crazy. Jackson is our gift. But he is only a gift. Jesus is the Giver. So tonight I am marveling at the tremendous gift of Jackson's life--and falling down in worship at the feet of the Giver. Thank You. You are...good.
"Every good gift and every perfect gift is from above, coming down from the Father..." James 1:17
"Give thanks to the Lord, for He is good; for His steadfast love endures forever!" Psalm 118:1
P.S.The doctors have said we may possibly be discharged Tuesday.
Tuesday, November 25, 2014
Monday, November 24, 2014
Buddys and bottles
Well, there isn't a lot to report from around here. The doctors have left all of Jackson's meds "as is" for several days in order to give him time to be truly comfortable and settled before trying any more weans. The nurses have tried to turn his oxygen down just a bit more a few times, but so far it hasn't worked. He is on 1/16 of a liter of oxygen and doing well with that. He does seem much more comfortable. Yay! He has a bit of trouble with his tummy at times, but we're wondering if it might just be the result of a TON of antibiotics. I talked with one of the doctors today about probiotics--we'll wait to see if they think that could possibly be helpful for him. He has taken his bottle several times now, and it's just so, so stinking sweet that I had to post this video from this afternoon. He has been wonderfully wide awake for the longest times! The nurses have taken to holding him whenever we're not around...I love that. I walked in yesterday morning to an empty bed and heard someone holler from the nurses desk, "I have your baby!" :) I'm so thankful for him to be loved on and cuddled even when we aren't there with him. The other two kids were with us over the last week and got to love on him some as well. Now they have gone back to play with cousins, allowing us to focus on getting Jackson home. We're praying for continued progress, and so very thankful for our little joy.
Friday, November 21, 2014
Friday
Little buddy took his second bottle today, and got in a good hold from Daddy. He was wide awake for the longest time tonight...such a joy.
Thursday, November 20, 2014
Eleven weeks
We are so grateful for eleven weeks of life for/with Jackson.
The doctor told me yesterday that she feels she has figured Jackson out...he likes to do things on his own schedule. She felt he had been pushed too hard and quickly to progress and it had actually caused him to lose ground rather than gain. The plan now is to follow Jackson's time table--ie slow down. This will necessarily delay discharge, but it was very obvious to us and to all involved that he just is not ready. So for now...no weaning. Just chilling. His diuretics were increased, and his sedation was even increased just a bit in an attempt to decrease withdrawal symptoms. We are thankful to have Mason's parents here to visit for a while over the next week!
Thank you, dear friends, for caring and praying. One day at a time!
The doctor told me yesterday that she feels she has figured Jackson out...he likes to do things on his own schedule. She felt he had been pushed too hard and quickly to progress and it had actually caused him to lose ground rather than gain. The plan now is to follow Jackson's time table--ie slow down. This will necessarily delay discharge, but it was very obvious to us and to all involved that he just is not ready. So for now...no weaning. Just chilling. His diuretics were increased, and his sedation was even increased just a bit in an attempt to decrease withdrawal symptoms. We are thankful to have Mason's parents here to visit for a while over the next week!
Thank you, dear friends, for caring and praying. One day at a time!
Wednesday, November 19, 2014
He did it!
Jackson took his first bottle! He drank 10 mls before he was tuckered out, and after he was done he was sucking his pabby like there was no tomorrow...looking for one more drop! We'll try again tomorrow. Yay!!!!!!!
Debtors
We have been overwhelmed with the kindnesses and generosity of others throughout this time. (That is putting it very mildly.) Family, friends, acquaintances...even total strangers! We are truly, hopelessly indebted for kindnesses big and small. One of those "big" kindnesses took place yesterday at noon at A.T. Still University, when a group of Mason's coworkers hosted a benefit luncheon in Jackson's honor. So, as inadequate as this is, we wanted to tell you "thank you" from the bottom of our hearts. We can't begin to tell you how touched we have been by your kindness. The donations received will be truly helpful--and the love they represent has helped us to carry on.
Thank you.
Mason, Rachel, Charlie, Bethan and Jackson
Thank you.
Mason, Rachel, Charlie, Bethan and Jackson
Tuesday
I apologize for the lack of information these days. It's because of the endless flow (of information) that we have been receiving. Jackson has had two very difficult days in a row. He is swollen again, but this time all over his body. He's uncomfortable and nobody seems to agree on why. If I were to diagnose him from a mother's perspective I would say he's a bit constipated, he's having withdrawals, and the extra fluid is making it hard for him too breathe. It has been challenging to deal with this in step down. The doctors are not familiar with him. Plus the mentality of step down seems more geared toward progression of what's already established than toward actual treatment of problems. It is excruciating, as a parent, to watch your child suffer while doctors search (or don't) for a cause. We're thankful for a great patient advocacy team here at Children's, and thankful for a Father who not only cares about Jackson but actually created him.
I spent the entire day, it seemed, talking with various types of health professionals. Neurology came by and said Jackson will not be able to have further MRI's because of his pacemaker. This was very disappointing as this is basically our only diagnostic tool for Jackson's neurological status other than just observing his behavior. I guess we'll continue to pray the pacemaker could be removed...and continue to take it one day at a time. There is no doubt that Jackson responds to us socially and mentally. He is enamored with his mommy and daddy. I also was introduced yesterday to the world of home care planning. Wow. IV therapy for several weeks (because of his antibiotics for the pacemaker infection), feeding pump (though they are currently working to get him off the NG tube and to regular feeds), oral medications, twice weekly nursing visits, follow up appointments, physical therapy, occupational therapy, speech therapy...never in my life have I been more grateful for my medical training than now. I remember how obvious it was that God was calling me to nursing school. I thought all these years that the purpose was twofold--helping the sick in our community and helping with our finances. As surely must always be the case, God's purposes have proven to be much deeper than mine. I am so, so grateful to be a nurse.
Aside from all that's going on with Jackson, Mason had his heart follow up today. The doctor told him his heart MRI was consistent with his diagnosis of myocarditis, but that it appears no permanent damage was done whatsoever. Praise the Lord. What a gift health is! They will repeat an MRI in six months, but don't anticipate problems.
We know how so many (all?) of you have labored in prayer for us these last eleven weeks. Please could we ask you to continue to pray? Our knees go weak and our hearts tremble as we deal with present problems and future plans. We are in constant need of divine upholding. Pray for health, but also for faith! Peter started to sink when he looked away from Christ to the wind and waves. But, as Dad reminded me tonight, "even the wind and waves obey Him." Mark 4:41
Monday, November 17, 2014
New address
Jackson Vann
7 West Room 5-B
St Louis Children's Hospital
1 Children's Place
St Louis, MO 63110
Monday
Well, we had a full weekend! We decided late last week to go back home for a couple days over the weekend. It was wonderful to see so many friends and family.
As of yesterday morning, Jackson is now officially step down status. Praise the Lord! He didn't actually move to the floor until this morning. His blood levels were low this morning so he received a small blood transfusion just a bit ago. He has done well with that. Unfortunately he has gotten progressively more swollen over the weekend. They are looking into possible causes for this. The increased swelling seems to be directly related to somewhat labored breathing and decreased oxygen saturation levels. It is our prayer that any underlying causes of these little complications might be thoroughly identified and thoroughly dealt with before we go home. God knows every detail about our little man...we are looking to Him for His help! Speech therapy is planning to get involved today to begin assessing his ability to take a bottle or nurse. We'll keep updating! Thank you for every prayer.
Friday, November 14, 2014
Friday
Jackson must have worn himself out with all that soul-gazing yesterday, because he has been sweetly snoozing almost all morning. Even this is a real answer to prayer. He is on a medication called dexmedetomidine, and has been for most of his life. This drug has the potential to cause withdrawal when it is weaned, and he has shown signs of this in the past when they have turned it down. Yesterday they cut his dose in half (the largest amount they've ever tried to wean at one time)...he has shown no signs of withdrawal or discomfort! We are so thankful. His attending physician right now is one of the two heads of the CICU. He reiterated during rounds this morning how absolutely shocked they all are that the pacemaker infection responded to antibiotics. Praise God! He also said Jackson will be on an oral antibiotic for a little over a month then will be on a suppressive antibiotic for as long as he has his pacemaker (potentially his whole life). The doctors have said it is still possible he could regain proper conduction of his heart, making the pacemaker no longer necessary. We are praying this might be the case, but in the meantime we're all very thankful for that lifesaving device. We moved again today but just to the other, more spacious, side of the room. It's been another good day.
Thursday, November 13, 2014
A new sort of surprise
I came in this morning to a lot of good news! Jackson's fever had not returned, his white count was good, and they planned to move him back to the annex room...the last stop before step down. Praise God!! Jackson's surgeon (the one who performed the pacemaker clean out and rigged the antibiotic device just for Jackson) came in and looked noticeably shocked when he heard the report. He then proceeded to do a half-dance across the room and said, "THANK GOD!" He looked like he was about to tear up, and I know I sure was. His kindness and skillful care have meant the world to us...to see him care so deeply about Jackson's welfare was very moving.
So now Jackson is in 14-A, and he has had a good day. I've never seen him so alert and attentive! Staring and staring at me while I was holding him! The nurse asked him what he was doing. I told her I was pretty sure he was gazing into the depths of my soul. :)
So now Jackson is in 14-A, and he has had a good day. I've never seen him so alert and attentive! Staring and staring at me while I was holding him! The nurse asked him what he was doing. I told her I was pretty sure he was gazing into the depths of my soul. :)
Wednesday, November 12, 2014
Nurses
This picture is a couple weeks old, but these are two of our favorites--Aunt Nikki and Aunt Sarah. World-class! Thank you two for all you've done for us...we are so blessed to have met you.
Jackson's room
Our current address is as follows:
Jackson Vann
St. Louis Children's Hospital
CICU Room 3
1 Children's Place
St. Louis, MO 63110
And if you've ever wondered what CICU Room 3 looks like...here it is! The second picture is cards where we write things we're thankful for (even some of the nurses and staff have written notes) about Jackson. The last picture is the view from his room.
Jackson Vann
St. Louis Children's Hospital
CICU Room 3
1 Children's Place
St. Louis, MO 63110
And if you've ever wondered what CICU Room 3 looks like...here it is! The second picture is cards where we write things we're thankful for (even some of the nurses and staff have written notes) about Jackson. The last picture is the view from his room.
Wednesday
Jackson is as cute as ever today. The final results of his pacemaker infection came back this morning--it is not MRSA. It is a staphylococcus aureus ("staph"), but it is not resistant to antibiotics. We were delighted to hear this...much more treatable than MRSA. The infection is in the pacemaker pocket in his abdomen, as well as in his blood stream. He spiked another high fever last night (almost 103). He did not have a fever today, and we're waiting to see how he does tonight. In the morning they will recheck his white blood cell count. Jackson's surgeon said if he continues to spike fevers and his white blood cell count is up then they will consider the pacemaker infected and go ahead with the plan to replace it. We are praying this might not be necessary. He was obviously uncomfortable this morning--squirmy and having trouble relaxing, even though he loved being held. They gave him some extra medicines for this and they worked wonderfully. We are praying this discomfort would resolve. It is most likely due to the new location of his pacemaker--hopefully his little body can quickly adjust to the change. One very encouraging detail is Jackson is only on one liter of oxygen now and his oxygen saturations are perfect! It is so wonderful to see him breathing comfortably and without extra effort.
Tuesday, November 11, 2014
Ten weeks
Jackson is actually looking really good today. He did so well weaning off the vent through the night that they were able to take out his breathing tube around 8 this morning. He is tolerating that very well. He wakes up and is calm and then easily goes back to sleep. They had warned us that he might be pretty uncomfortable today due to the pacemaker being directly under a muscle. He really doesn't seem uncomfortable at all!
The bad news of the morning was his preliminary results of the fluid around his infected pacemaker site showed MRSA. It was caught quickly and is being treated aggressively so we are hopeful this won't turn into a big complication. We appreciate prayer this would be the case. We are thankful for ten weeks of Jackson's life and God's care. Last night I felt I couldn't go on another day. The motel walls seemed to be closing in. I sobbed to Mason that I wanted a home, wanted to make dinner, wanted to care for my children, wanted to go to church, wanted to have a purpose in life, wanted this whole huge nightmare to end. I felt like we, as a family, would surely be ruined if this lasted one more day. I went to bed with a heavy heart. I was thankful to be able to cry, but still dreading absolute ruin. I got up in the early morning and read this verse in my devotional, "He led them on safely." Psalm 78:53 So simple, yet so perfect. We are going to be okay.
The bad news of the morning was his preliminary results of the fluid around his infected pacemaker site showed MRSA. It was caught quickly and is being treated aggressively so we are hopeful this won't turn into a big complication. We appreciate prayer this would be the case. We are thankful for ten weeks of Jackson's life and God's care. Last night I felt I couldn't go on another day. The motel walls seemed to be closing in. I sobbed to Mason that I wanted a home, wanted to make dinner, wanted to care for my children, wanted to go to church, wanted to have a purpose in life, wanted this whole huge nightmare to end. I felt like we, as a family, would surely be ruined if this lasted one more day. I went to bed with a heavy heart. I was thankful to be able to cry, but still dreading absolute ruin. I got up in the early morning and read this verse in my devotional, "He led them on safely." Psalm 78:53 So simple, yet so perfect. We are going to be okay.
Monday, November 10, 2014
Pacemaker update #2
Surgeon just called-said he did well and is coming back up. They cleaned out the site (definitely infected) and put a line to deliver concentrated antibiotics to that site. We'll see how he does over the next few days!
Pacemaker update #1
In keeping with true OR time, Jackson just went down for his procedure (around 5:20 pm). Their hope is to "clean out" his pacemaker site but to see if they can salvage the current site and pacemaker. They are going to place a device right in the same area to deliver highly concentrated antibiotics straight to the infection site. They are doubtful this will work. Most likely they will remove the old pacemaker in a few days and implant a new device. This would be more invasive, so they want to at least try the less invasive first. We are so grateful for a fantastic surgeon--highly skilled and warmly compassionate. Thank you for your prayers.
Pacemaker
Jackson's pacemaker is infected. Unfortunately this cannot be treated with antibiotics alone. They plan to take him to the OR around 1 or 2 today to remove and replace the pacemaker. They checked his underlying rhythm to see if it might be good enough to leave a pacemaker out for a few days. It is not. On its own, his heart is only beating at 35 beats per minute. Wow are we thankful there is such a thing as a pacemaker. Please pray for Jackson. Please pray for us and for our kids. Please pray for every hurting heart involved. "The Lord will fulfill His purpose for me; Your steadfast love, O Lord, endures forever. Do not forsake the work of Your hands." Psalm 138:8
P.S.He will have to be intubated again for this procedure...Lord-willing they can wean quickly.
Sunday, November 9, 2014
Brief update and an encouragement...
We have come to realize the truth of what some of our best ICU nurses have told us from the beginning--life in the ICU is a roller coaster. The up's and down's are almost constant. The doctors hope for the best, but often deal with the worst...calmly and in an un-surprised sort of way. Jackson is far from "worst", but progress is slow as usual. They weaned his oxygen through the night as planned, but after getting down to 4 liters ended up having to increase back up to 6. Not a huge concern--just means he isn't quite ready. His chest X-ray showed a bit of right upper lobe collapse (nothing new for him...it's come and gone several times throughout all this respiratory process), so they restarted some respiratory treatments to help break up any mucous that might be making his lungs "sticky" and unable to expand as well. His white blood count was up this morning (could be from his recent steroid medication or from an infection), so an antibiotic was started. His temperature and heart rate were elevated throughout the day which could also signal infection. Tonight his temperature and heart rate are back to normal. His hemoglobin (I believe) was a bit on the low end, so he got a blood transfusion. The nurse said the area at the base of his chest incision as well as the area of skin above his pacemaker were a bit reddened. They are exploring this as a possible source of the infection (if there is one). These days are hard. Thank you for standing with us. We can't wait for each of you to meet him and see for yourself all God has done! Speaking of which, one of the nurses from the Transport Team (those who cared for Jackson at birth and on his helicopter flight) came by Jackson's room yesterday. She spoke with me, gawked over Jackson, and finished by telling him, "There must be a very big purpose for your life." Her words hit me very forcefully--they had so much authority. I felt it was from the Lord.
Saturday, November 8, 2014
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?
Friday, November 7, 2014
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...
Thursday, November 6, 2014
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!
Wednesday, November 5, 2014
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")
(Mom, Dad, and Lacie holding up a "V" for "Vanns")
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.
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.
Tuesday, November 4, 2014
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.
Sunday, November 2, 2014
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!
"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!
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