Tuesday 3-7 10:15am
Mikey managed another wave for y'all. He had an uneventful night. His respirator was turned down to 8 this morning. They changed his tubes and he's getting a little nourishment through the tube now. He's progressing, slowly, but he IS progressing.
Tuesday 3-7 6:35pm
I think Mikey looks good this evening. He's lost another .5 kgs which puts him at 16.8kg (only .8 kg more than pre-op) and the ventilator has been turned down to 4. His doctor said he looked good and the doctors will confer tomorrow about taking off the ventilator again!
Wednesday 3-8 6:30am
Mikey looks great this morning. He had a good nights sleep and woke up looking wonderful. He's getting just a minimal amount of support from the machines now and he's still doing well.
Wednesday 3-8 4:10pm
Bert & Ernie from Sesame Street came to visit Mikey in the Pediatric ICU this afternoon. He thought that was pretty cool. I think he was a little shocked at how BIG they were up close! Mikey looks great, and thank God, he's still improving.
Wednesday 3-8 8:50pm
Mikey is having some problems again this evening. Fluid build-up.. oxygen saturation dropping, and now the pressure has had to be turned back up on the ventilator. Mikey is still very much in need of our prayers. These set-backs are extremely painful and frustrating for all of us, but we cannot give up on him now. We still believe God will completely deliver Mikey from these obstacles and send him home with us soon, happy and healthy.
Thursday 3-9 Noon
Mikey is still on the ventilator and it has had to be tuned up, yet again. His lungs keep getting congested and his oxygen saturation drops. He's lost weight and gotten some fluid off, but the lungs have a lot of fluid on them and the doctors are running tests to find out why. This is day 19 for us, and Mikey is still being supported by the machines in the pediatric intensive care unit. There is no way we could have been prepared for this. Everytime we've thought he was improving, we've been let down. Mikey has been very brave. When he's awake and alert, he nods his head and does everything they ask of him and never complains. Mikey has always been a happy child who just loves life and loves people. He loves to laugh and he's quick to tell ANYONE, "I love you!". Mikey just keeps fighting, and we have to keep praying and believing that the doctors will find the cause of this lung congestion, so Mikey can survive off the ventilator and begin to recover.
Thursday 3-9 7:40pm
Mikey had a new feeding tube inserted through his nose, past his stomache and into his lower intestine this evening and he's still sedated. He spent a lot of the day under sedation, so he'll probably be awake for us during the night. A "pediatric intensivist" is now directing Mikey's ventilation maintenance. I understand that he specializes in cases where they are having problems weaning children from ventilator support. Mikey's ventilator is still turned up, and no effort was made to wean him today... maybe tomorrow. Again, we wait and we pray.
Friday 3-10 9:15am
Mikey had a good restful night. He looks really good this morning and he's lost some more weight. He was up watching cartoons with dad a little after 5am. Hope to hear good news from the doctors today.
Friday 3-10 8:40pm
Mikey is doing alright this evening. He still has a problem with fluid in his lungs, but they're starting to wean from the vent again. Ideally, he could possibly try coming off the vent Sunday. We hope and pray, that he's able to do it this time!
Saturday 3-11 10:30am
Mikey managed a little wave again. His morning blood gases weren't good enough to turn down the pressure on his ventilator this moring, but they'll be doing another ABG around noon and maybe this one will look better. I think he's still doing pretty well and he sure looks good. He's quite alert and getting very anxious.
Saturday 3-11 4:10pm
Mikey is still doing fine and the doctors are saying now they hope to remove him from the ventilator, probably tomorrow afternoon.
Sunday 3-12 9:00am
Mikey slept pretty well last night and was up early this morning. He's very alert and still doing pretty well, except when he gets "anxious" and stresses out a bit.
Sunday 3-12 3:20pm
Another little set-back.. but maybe only for a day. Mikey's oxygen saturation has apparently dropped several times due to spasms in his blood vessels and he'll have to stay on the vent today. The doctors confer and are going to try to take him off the ventilator again tomorrow. Disappointing, but.. we have confidence in the people who are taking care of Mikey here.. from the doctors to the nursing staff, we feel he's getting the best of care and we know that God's hand is still on Mikey.
Sunday 3-12 11:00pm
No change. Praying for good news tomorrow.. maybe mid-morning... noon.
Monday 3-13 9:20am
Mikey slept real well last night and all of his blood gasses were good. His oxygen saturation dropped for a bit this morning, but it came right back after suctioning. He's resting and watching cartoons right now, while waiting to see his doctor.
Monday 3-13 3:10pm
Mikey was taken off the ventilator at noon today. He is now wearing a full-face mask which not only delivers him enriched oxygen, but also gives him a continuous breathing treatment.. medicine converted to a mist that is breathed directly into his lungs. He hates the mask, because it covers his whole face.. mouth, nose and clear up where it blocks his vision, but.... It's gotta be better than the big tube down his throat and hopefully he won't have to wear it more than a few days. As of 3 this afternoon, he was doing well off the ventilator and his first blood gasses looked good. After so many unsuccessful attempts to remove Mikey from the ventilator, let's pray that this will be the time that he can fly. "Fly".. that's a new medical term we picked up today from the fine nursing staff that's caring for Mikey.
Monday 3-13 7:50pm
Since our last update, we've received a number of "Fly Mikey, Fly!" e-mails. Well, he's trying.. he even flapped his arms like a bird for the nurses when they mentioned "flying". You can hardly see his face behind this big smokey mask, but he's there.. spreading his wings. One person wrote, "That's his aviator's mask." His second blood gas this afternoon looked good also, so he's still doing alright so far, off the ventilator. We thank God and we keep praying and believing...
Mikey is still "flying". I got to hold him on my lap last night, without the mask. He surprised me earlier, by whispering "Hey Dad, I love you!" It was just a whisper, but it was unexpected and it was the first time we'd heard him talk in a long time. Later, he surprised his nurse by whispering "I love you" to her. He's gonna make it.. Thank you, Lord! Some of Mikey's friends and relatives had to leave, but his big brother came back last night and his sister is coming today. He's looking great this morning. He had a couple of popsicles and some sips of pop. He was up most of the night, enjoying his new-found freedom from those ventilator tubes, I guess. You'd think he'd be tuckered out this morning, but he's still up.. testing his voice... which is just a raspy whisper, but he's sure trying!
Tuesday 3-14 8:30pm
Mikey is holding some money he received in the mail from some new friends at another hospital in Sioux Falls, S.D. Although Mikey has no voice yet (from the ventilator tube being in so long) he tried to say, "Thanks for prayin' for me!" If you click here and listen closely, you can hear his raspy little message to you all. Mikey is still "flying". Thank you Lord.
Wednesday 3-15 10:30am
Mikey is still slowly progressing, but he's also still very ill. He's had a build-up of fluid on the left side, and now he's trying to develop pneumonia on the right side of his lungs. They are treating with antibiotics. He also has vomitted a little blood, which they are keeping an eye on... It may be ulcers from all the medications. He's getting 3 liters of oxygen per minute via nasal cannula, in addition to regular breathing treatments and CPT. His spirits are up and he's been able to stay off the ventilator for 2 days now, but he still has a ways to go before he's "out of the woods"... Praying that he gets rid of the congestion and pneumonia and begins rapid and complete healing.
Note: Besides the loss of several precious little lives since we've been here, the nursing staff has now lost a co-worker suddenly and unexpectedly last night, so let's remember these families and friends. There's no better way to get YOUR prayers answered, than praying for someone ELSE.
For those who have asked, Mikey can receive mail at:
Wednesday 3-15 5:25pm
An afternoon xray shows that Mikey is building up even more fluid in his lungs and they have increased his diuretics again. This can be a very serious situation with dire consequences if not controlled. We all continue to pray for Mikey's healing and recouperation.
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