Back In Boston

They checked out Micah at the drs. Nothing significant going on other than the fever. They did however need him to go back to Boston to have the feeding tube put back in. Susanne and Rachel went down with Micah. There isn't anyone there to do it tonight, so they are admitting Micah for the night and doing the NJ tube tomorrow. They're starting him on an IV to give him the fluids he needs in the meantime. Once Micah is admitted, Susanne and Rachel will head home.

Please pray this will be a quick stay.

Going to the pediatricians

We're getting the three older kiddos ready to go to Oma's house. Micah's pediatrician's office has an opening this morning so we are taking him in, he still has a fever and he managed to yank his NJ tube. Hopefully they will be able to place it again, NJs are harder to place than NGs. They have no problem placing NG tubes. And last night was beyond horrible. Micah was crying and fussing all night long, which is bad in itself, but last night I managed to develop an ear infection. It's one of those where any sound over a whisper is like jamming a hot poker in your ear. This is going to be a long day.

Still home....but not very happy

The last few nights Micah has been awake and mad, which of course leaves us awake. This morning he spiked a fever. It started at 100 degrees and now it's up to 101 degrees. He has no other symptoms other than fever and misery. I'm thinking it's because he's teething (my big kids did the same when they teethed) but to be on the safe side I called Dr. Brown and Dr. Gates' office and spoke with a Pharmacist. They all agrees, separately, to just alternate the Tylenol and Motrin for the day. Dr. Brown and Dr. Gates' office are going to call tomorrow to check on him. As long as he doesn't develop any other symptoms he doesn't need to go to the ER. I am really praying this is nothing serious, he hasn't even been home for a week. PLEASE PRAY!!!!

HE'S COMING HOME!!! HE'S COMING HOME!!! HE'S COMING HOME!!!!!!

I JUST GOT OFF THE PHONE WITH MICAH'S NURSE!!!!!!!!!!!! THEY ARE GOING TO SEND HIM HOME TODAY!!!!!!!!!!!!!!! I CAN'T BELIEVE IT!!!!!!!!!!!!!!! HE'S ONLY BEEN IN THE HOSPITAL FOR 1 WEEK AND HE'S COMING HOME!!!!!!!!!!!!!!!!!!!!!!! I AM SO EXCITED!!!!!!!!!!!!!!!!! I CANNOT WAIT FOR HIM TO COME HOME!!!!!!!!!!!!!!!!!!!!!!!! I HAVE MISSED HIM SOOOOOOOOOOO MUCH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Making progress....

Okay, here's the scoop, Micah went in for his throat procedure today. He had a 60% narrowing in his throat. They took him too the operating room and they found that having the tube in his throat had already stretched his throat enough to where there was only a 30% narrowing which is reasonable (according to the doctors). Now we just have to put in an NJ tube and get him back on his feeds.

Micah had a great night last night. He slept well and is comfortable now. GI is supposed to see him today, which will be nice. He's also going to be moving to 8 East again today. I am so happy about that. If he keeps up the good work, then he may come home soon!

Just one more thing....

I just got a call from the ENT doc. They got done with the Bronch Scope and for that, just below his vocal cords, he has a 60% narrowing of his airway called Sub-glottal Stenosis. They are leaving him intubated tonight and bringing him back to the OR tomorrow. They are going to try to remove the scaring and dilate his throat.


Micah is out of the Cath Lab!!!!!! He did great and they were successful in dilating his pulmonary artery!!!!!! He came out of the anesthesia well too and is on his way up to the CICU!!!!! Now he will stay intubated for tomorrow. Hopefully this will bring him one step closer to being done with this and coming home.

Back in the hospital....again

All of the following began Saturday night....the last paragraph is from today

UNBELIEVABLE!!!!!!! HERE WE GO AGAIN!!!!!!! Micah began struggling to breath tonight and so we rushed him back to the local ER. Once again they were not comfortable treating him so now he's on his way back to Boston. (By Ambulance This Time) Jason and I are driving down tonight to see what will happen next. I think he's fine now that he's gotten a breathing treatment and coughed.

I just got off the phone with Micah's nurse...he had a good night last night...he's on a tiny bit of oxygen, just to keep his O2 stats up....He is up to his full feeds again (and I know he appreciates that)...The plan for today is to move him back out to the main cardiac floor....which is always good....unfortunately no firm plans will be made about Micah until tomorrow

Jacob, Emily and I went to Boston today to visit Micah. He's on the main cardiac floor now and completely off the oxygen. He goes to the Cath Lab tomorrow. He'll have his pulmonary branch dilated and have a Bronch Scope. Hopefully we'll get some answers. Jacob and Emily were so excited to see Micah again. When we got there, there was a volunteer talking to Micah. When he saw me he smiled and arched his back, like he wanted up. Then Jacob said "Hi baby Micah" and Micah just lit up! it was really sweet.



Sorry it took so long to update....life has been really crazy here

A normal appointment.....

We're back from Micah's pediatrician appointment. He is 11lbs 3oz (the last weight was wrong) He's still REALLY small for his age but Dr. Gates is really happy to see how well Micah is doing. He did get a couple of his shots today, so he's in a bad mood now. He's been home 1 week today. As long as we can get through this day it'll be the longest he's been home since November. I REALLY hope we make it!!!!!

A normal appointment coming...

Micah is still doing great...He's had a few rough spit up moments, but nothing horrible...Wednesday he has an appointment with Dr. Gates for a 4 month well-baby...it's so nice taking him to a normal baby appointment!!!!!

THE AWESOMEST NEWS EVER!!!!!

This those who may not know............................HE'S HOME!!!! HE'S HOME!!!! HE'S HOME!!!!! HE'S HOME!!!!! MICAH IS HOME!!!!!!!!!!!! HE WAS DISCHARGED FROM THE HOSPITAL YESTERDAY AND IS DOING GREAT!!!!!!!!!!!!!!!! HE'S HOME!!!!!!!!!!!!!!! He's on continuous feeds, but that is fine. The visiting nurse was here today and he weighs in at a nice 11lbs!!!!!! I am so proud of him!!!!!

Discharge update....

The central line is out!!!!!! Micah is finally snoozing!!!!! There is a meeting with all of Micah's teams and I at 4pm and hopefully form up a plan.

Okay, so here's the plan...because Micah needs an echo tomorrow and GI and Surgery didn't show up for the meeting,and the limited trains we won't be officially discharged until Thursday morning...All the paperwork will be done and ready to go tomorrow and we'll leave Thursday morning bright and early...good meeting though...got a lot of cardiac questions answered.

NO MORE SURGERIES FOR MICAH!!!!! (at least for now) The surgeons were just in to see me and they told me that they have NO intention of putting the J tube back or to the stomach wrap surgeries. This means that Micah won't see the inside of an Operating Room until he is 9-10 months old, when he gets his oral surgery and has tubes put in his ears. And the ENT docs will wait until then to do the bronch scope.

Going home!!!!!

Micah was just seen by Physical Therapy. He did really well. He's showing that he wants to roll over and do all the things a normal 5 month baby does. The Therapist wants to work with him some more and have someone else work with him when we go home. He will also be getting his central line out today. Yay! Making progress for home!!!

WE ARE GOING HOME!!!!!!! EITHER TODAY OR TOMORROW WE ARE GOING HOME!!!!!!!!!!! MICAH IS WELL ENOUGH AND HAS GAINED ENOUGH WEIGHT TO GO HOME!!!!!!!!!!!!!!!!! MICAH IS GOING HOME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Tummy Test...And 5 Months Old

Since Micah is teething, he had a rough night...But now he's hungry and he has to wait a few more hours to feed again...Today is his gastric emptying test....finger crossed that it goes well.

Happy 5 Month Birthday to my sweet baby Micah!!! It stinks that you are spending another birthday in the hospital, but I know you are getting better and will go home soon. I love you baby!!!!

Dr. Brown was just in and he told me that Micah passed his gastric emptying test!!!!! He also said that he wants the central line out tomorrow. This means we are close to going home. Hopefully on Wednesday GI, Cardiology, Surgery, and I will be able to meet and FINALLY be able to make a plan for Micah to eat. He'll get either continuous feed or bolus feeds. I hope to be home by Sunday, Jacob turns 6 on Sunday.

Teething and other fun stuff...

The surgeons came to see him this morning to see how his stomach is healing. I heard one surgeon say "He is really healing well." Then she asked me how his feedings have been, and I told her that he has been doing great and not even spitting up. She said that was great and "we may not need to do anything else to him." This may be a cruel tease from the surgeons, but I have my fingers crossed.

It's official...Micah is teething! Such awesome timing. Thankfully this is something they can easily ease for him. And this is one of those milestones that he can make while laying on his back in a hospital bed. Now we just need to figure out what to do with "tummy time" and sitting up and stuff. But I am kind of happy that he's teething.

Micah is 10lbs 6 oz!!!!! He is packing it on since they put him on the IV calories last week!!!!! The continuous feeds are helping too. Tomorrow he will have the gastric emptying test done and that will hopefully help form a more concrete plan....such fun

One Month To The Day!!!

Micah is in a good mood today! He has been smiling at everyone who has come to see him! He is such a little flirt! They are increasing his feeds to 15 ml an hour, and if he tolerates it well, then tomorrow he'll go to 20 ml. They are leaving the IV calories and fats going too. The doctors said they want him getting as much as possible. He even looks like he's filling back out again. His cheeks are chubbier!

About 8:30-Exactly one month ago today,Micah threw up and aspirated. He went grey,limp,and could not get air.After spending 6 hours in the ER in NH he was air-evac'd back to Boston Children's Hospital after only being home 1 week. After a month of fighting against breathing tubes,pneumonia,having multiple feeding tube failures and emergency surgery,and starvation Micah sleeps without the help of Atavan. It's amazing