A day for thanks. Thanksgiving 2012

November 22, 2012

4 months and 6 Days old

Thanksgiving


What am I thankful for??? Where should I begin.....Today I am thankful I have a healthy daughter and a warrior for a son. A son that was only given a 10% chance to live from day 1 but is already 4 months old and showing everyone around him how resilient he really is. He has given me more to be thankful for in his short life than my previous 31 years of life. I am thankful for every beat of his heart and breath he takes. I am thankful I was chosen to be his mom. I am thankful for the other families with Trisomy children for leading the way for us because this is a difficult journey and without them Ameir may not be here today. I am thankful that Ameir's doctors see him as a child that deserves a chance because a lot of Trisomy children are discriminated against by the medical community. I am thankful for my online friends-most of whom I have never met in person, without your conversation and support I would go crazy. I am also thankful for my mom and sisters for helping me right now because I need it the most. I am thankful for all the people praying for Ameir, it is really helping him to thrive. I am thankful for my family. I am sure I have left something important out but the more I type the more I cry so I am just going to stop here ♥



I wanted Ameir to be home for Halloween it didn't happen, I wanted him home for Thanksgiving and that didn't happen either....I am not even asking from Christmas because I don't want to be set up for another disappointment. So we will be home when we get there and not a day sooner than HE is ready



Yesterday November 21, 2012 Ameir had a felxible bronchoscopy to evaluate his trachea and lungs completely.  Ameir has small airway openings, bronchomalacia, and tracheomalacia.

In English this means:
1. The opening to his lung lobes that should look like capital D's look like small o's with some being distorted o's.
2. The openings do not have the correct shape and cartilage component so they are a little floppy. The right upper lobe is by far the smallest opening,

and since the opening to his right upper lung is so small it almost closes completely on itself when he exhales. 

 3. The tracheomalacia is usually a "collapse" of the trachea, but for Ameir it is not a full collapse of the actual trachea but a weakness of the trachea cartilage that causes a muscular contraction that closes into the trachea and this only occurs on exhale and blocks his airway making it hard to inhale (finally a reason for the clamping down).

Also his right lower lobe is a little less pink than it should be and they took a biopsy and a fluid sample to see if he has a little pneumonia or something else going on. The results came back this morning and showed no pneumonia or bacteria.  The only other test pending at this time is to see if he is possibly aspirating or he has a virus. 

They have made a couple changes on the vent to see if that helps him and prevents him from "clamping down" which may actually be out of his control and not an anger issue as his mother thought :)

The good news is all this gets better with age and growth. His airways should get bigger and the cartilage stronger so he will not be on the vent forever.  

 

Oh yeah, speech therapy has been coming by daily to feed Ameir.  He loves food!!

Look at me getting so big :)

I also got fitted for my new hearing aids.

What the heck just happened.....

November 10, 2012

Today my sister came down for our 24 hour pass at the Med Inn.  Things did not go nearly as planned.  We left Ameir's room at about 2:45pm to head over to the hotel.  We got there to drop off our last few supplies then ran down to the cafeteria to grab some lunch.  We got back to the room and I fed Ameir and it was time to give him his medicine....we had checked it in the room but missed one so I had to run to the pharmacy to get it.  I left Ameir and Melissa in the room to run to pharmacy and get the one they missed.  When I got down there I had a mini-panic attack, there were tons of people waiting and I didn't want to leave Ameir a second longer than need be.  I finally returned to the room and he was asleep in the crib.  Breathe a sign of relief.  I finished my lunch then got him out of the crib to play on the bed.  He napped on and off while I shopped online and talked to my daughter on Skype. 



At 8:00pm Melissa went down to the lobby to look at the takeout menu's so we could order some dinner.  She wasn't gone 5 minutes and Ameir's vent started alarming low pressure/disconnect.  A few seconds later it alarmed again but did not stop.  I turned on the travel vent and disconnected his feeding tube from his feed assessed him and unhooked him from the vent to set him in the carseat on his travel vent.  He stopped breathing and clamped down and turned purple and stiffened in a matter of seconds.  I grabbed the ambu-bag and hooked him up to bag and ran with him in my arms to the bed.  I squeezed counted to 2 and squeezed again...then again.....and again....he has completely shut down his airway and was not letting me bag him.  I called 911 while still trying to bag him which rang to hospital security and I asked for an ambulance told them my baby wasn't breathing and he was resisting being bagged.  I was still bagging then he went limp and extreme panic set in.  I began to scream, then screamed louder, finally I was screaming HELP ME and AMEIR BREATHE.  I tried to blow in his face.  He was still not breathing or gasping or anything.  I have 2 vents alarming, a pulse ox alarming, and someone pounding on the door.  I grab Ameir while bagging him and drop the phone to run to the door.  It was a nurse that heard me screaming.  I let her bag Ameir while I grabbed the suction machine.  I tried to suction, nothing.....she continued to bag.  Within a minute or two paramedics arrived along with 40+ people from the hospital code team and Melissa comes running down the hall with them.  Respiratory and a PICU doctor take over bagging.  I grab his go bag and they change his trach there was no plug.  Another doctor is trying to get an IV in his scalp, while a third is drilling in his femur to get an IO access to at least give fluids.  We were in that hallway of the hotel for what seemed like forever.  I was just sure he would take a couple breaths then we could hook him back to the vent and continue on our little mission.  Boy was I wrong.  The IO they thought was in his femur was not so that was removed.  The IV was not able to be established in his head.  They decide to move him to the PICU so they can better assess him.  As soon as we got off the elevators in the hotel back to the hospital the doctor, RT, several nurses at bedside take off running with the stretcher.  No way my fat butt was going to keep up so the social worker said she knew which bed they were going to so we could just walk.  They might have been 4-5 minutes in front of me.  I walked into the room and he was laying on the stretcher still being bagged while another RT was setting up the vent.



In comes more equipment...ultrasound machine to help get a central line.  They tried several times and were not able to get a central line in his groin on either side, so then they move to his arms....also no success.  Finally after almost 2 hours they were going to give him a break and stop.  They were able to get an IV in his groin so he did have some access for fluids.



After they stopped poking him he had completely turned around.  He had good color and was breathing and initiating all his own breaths with the vent (all yellow lines to those of you that know).  His nurse gave him a warm soapy bath because there was blood everywhere and gave him a warm blanket.  They came in for a chest x-ray and it was perfect, no collapse or anything.  By 1:00am all the sedation was wearing off and he was stirring a little so I patted his back and rubbed his head told him it was time to go to bed, I love him and sweet dreams.  After he fell asleep I sat in the chair and attempted to sleep, I was beyond exhausted.  I didn't get nearly as much sleep as Ameir did, but did get some.



Now this morning he is completely back to his normal self.  Even all the red splotches that looked like broken blood vessels have went away from his face.  They ran all kinds of tests and put him on 48 hours of IV antibiotics just to be sure something else is not going on.  As soon as all the cultures come back his IV will be pulled.  The plan is to keep him in the PICU until tomorrow then move him back to his bed in stable vent unit.




Today I sit here choking back tears.  What if last night was "the night"?  I am not ready for this to be over.  I am not ready to not have my little buddy in my arms.  This is not fair.  Why me?  Why do I have to sit on edge every second of every day wondering if it will be my last?  I want to see his smile for 10,000 and more days.   I want Ameir to chase Adrianna around at the park.  I even want them to argue over what I make for dinner.  I want to have both of my kids around the Christmas tree on Christmas morning opening presents for the next 30+ years.  I want to see Ameir get on the school bus in 5 years waving to me as he goes to his first day of kindergarten.  

Please continue to pray for Ameir.  Please also pray for my strength. 

Day 51 in the hospital

November 9, 2012

I have tried several times to add pictures but am having a hard time with the crappy connection here at the hospital.  I will add a lot of pictures as soon as I can, even if I have to load them one at a time. 

3 Months 3 Weeks and 3 Days old…..looks like Ameir will have his 4 month birthday here in the hospital also.

We were supposed to be going home next week on Tuesday, but the nursing agency had someone quit so we have to wait another week.  New release date set for November 19, 2012.  Ameir is really doing well.  He has gained a lot of weight now that he is not struggling to breathe.  Today he weighed in at 10 pounds 8 ounces.  He weighed 7 pounds 4 ounces the day he was admitted (9/19/12). 
Yesterday we had our 12 hour pass.  My mom and sister came down here to spend the day with us.  We had no nursing intervention and were all on our own.  I was nervous, but Ameir had a perfect outing to the main campus and I even held him while I ate my lunch.  We gave all his meds, breathing treatments, and gave him his bath.  We also got a bed in the Stable Vent Unit on the 8th.....Yay for graduating from the PICU. 
Tomorrow my sister is coming down here and we have a 24 hour pass at the attached hotel.  Kind of like a real world experience.  We have to do everything as we would at home and even call 911 if we have a problem. 


November 3, 2012

Adrianna comes to visit.  We took a walk with Ameir to the cafeteria and spent the day visiting. 




Notes from days in between

Post surgery recovery has been quite uneventful other than the fact that Ameir has not been able to be weaned off the vent.  Day 1 after surgery he was put on the trach mask but after an hour he was not moving any air so he had to be put back on the vent.  We tried several more times to sprint him which is taking away all the set breaths and he had to start all the breaths on his own and he did really good.  Once the vent was taken off he would start to have chest retractions and get a little uncomfortable.  I was sat down and had to make the decision to continue trialing the trach mask or let him grow with the vent and eventually outgrow it.  I chose to stay on the vent because I want Ameir to be comfortable and not struggling to breathe.  We are anticipating Ameir being on the vent anywhere from 6 months to 2 years.  Based on how good he is growing we are hoping it is the lesser number of the goal.  


October 16, 2012 

Today Ameir turned 3 months old.  I am kind of sad that it was spent in the hospital. 


October 4, 2012 

Surgery day.....Today Ameir had heel cord lengthening to finish his club foot correction.  His last (hopefully) plaster cast was removed early this morning.  He had his G-tube (feeding) put in yay for no more tape on his face.  And he got his trach to help him breathe.  It was planned for Ameir to have the heel cord surgery first but anesthesia was not able to intubate Ameir from above (his mouth) so he had to have the trach first. After speaking to the ENT doctors it was discovered that Ameir had a little extra tissue on his epiglottis and an anterior voice box.  Intubation was impossible in the OR via ET (mouth) tube, even by the most experienced pediatric anesthesiologist.  This confirmed the need to have an airway for home was the best decision for Ameir.  Had we had another emergency at home it could have been our last.  The trach also meant another whole week of being unable to hold my baby.  Babies with fresh trach's are pretty sedated for a week to allow healing.

Day 11 in the hospital

September 30, 2012

After being extubated Ameir seemed to be somewhat stable.  He was starting to be weaned off high flow oxygen back to the nasal cannula and oxygen he was on at home.  While we were here I asked for another ENT consult due to the difficulty with intubating Ameir.  It was decided he likely needed a tracheostomy to secure an airway because we live 2 hours away from U of M and our local hospital is not equipped to intubate an infant with a critical airway.  ENT was planning on doing a bronchoscope to completely evaluate Ameir's airway and if it was a simple issue he would have that fixed rather than jumping straight to the trach.  While he was already under anesthesia we planned to get his feeding tube put in and his heel cord lengthened.

Tonight Ameir had a really bad night.  He was trying to breathe but was struggling like he was the day he was admitted.  Everyone (at least 15 people) including Anesthesia and ENT came rushing into the room to reintubate Ameir and the respiratory therapist we had that night knew Ameir well from the NICU suggested trying CPAP before another bedside intubation that was going to be extremely difficult.  IT WORKED he was able to breathe and his CO2 levels were coming back closer to normal.  Surgery for tomorrow October 1st was cancelled until he could be stabilized.

Day 6 in the hospital

September 25, 2012 

Extubation day :)  Today Ameir was successfully taken off the vent and his breathing tube was pulled.

All these people came just to pull the tube.










Here he is a couple days before.