Making Miles of Smiles Cruise For Baby Ambrose

Ambrose’s story told by Victoria (his Mom)

Ambrose was born on Sept 4 2019 at 29 weeks and2lbs 4oz 15 inches long he stayed in the NICU from birth till oct 21 with his biological parents on October 21 i got a phone call to ask me to take a baby in that he could no longer be in the care of his biological parents I said yes with out thinking twice I grabbed my stuff and went straight to the hospital to him oct 28 I brought him home from the hospital on nov 25 ambrose took a spell of not being responsive and turning blue I took him to clark co hospital where after being there around a hour he kept turning blue they intubated with a tube that was to large for ambrose and damaged his trachea and vocal folds we was transported from clark to uk picu where we stayed from nov 25 to jan 8th while in uk we was intubated extubate approximately 8 to 10 times and was have multiple seizures bavk to back they sent us home twice with in this time frame only 2 nights home and and had to be flew back to uk both nights we tried to come home jan 8th they sent us home and he started de-stating ( his o2 level kept dropping really low on the monitors) so I decided I was gonna drive him to Cincinnati at 2am we was put in the picu on high flow o2 and attempted to not intubated until we could figure out the reasoning he would stop breathing after back and forth of ambrose not being stable enough to go to the or me and the drs took a look hard look at our pros and cons and decided that to save him we had to take a chance taking him to the or after that trip we found out that Ambrose had subglactic stenosis grade 3 ( subglottic stenosis is a narrowing of the airway below the vocal cords and above the trachea. Subglottic stenosis will involve narrowing of the cricoid, the only complete cartilage ring in the airway) and we was gonna do a reconstructive procedure then ambroses took another turn on us had to be placed back on life support his lungs got sick from not being able to be moved around and started clasping at this time ent come in and said reconstructive surgery is no longer a option for Ambrose we are going to have to trach him I was so lost for words and they told me they would give me some time to process it to think about it to think of any questions I may have and to Wright them down I decided it was what he needed to live his normal life so we started preparing for the surgery date for Jan 29 to have the trach placed while getting the trach placed they also placed a gtube for feeding him and meds he returned that evening still on life support he was vent dependent for months had even told us to prepare to take the ventilator home ambrose started his up hill climb with set back after set back but never gave up he come back swinging even harder he started getting windows off the ventilation and windows become him getting to stay off all day and only need it while sleeping then it started that he started fighting the ventilator so I called a team meeting and told them I didnt feel as ambrose needed the vent that I felt o2 would work for him they agreed to try it Ambrose become ventilation free with only o2 at night and a very low percentage of it we are now home we got to come home on june the 28 2020 with only a couple hospital stays since then ambrose is rocking the trach and tubie life
We will continue to have surgery (MLB) every 3 months until we can have our reconstructive airway surgery at this time we are not sure when that will be we will continue to have follow ups with our team in Cincinnati

Aside from air way Ambrose’s other medical history is:

Gentics
♡ PLD
♡ MARSHALL SYNDROME

nero
♡ subclinical seizures

Gi
♡ g-tube dependent

Ambrose has a Facebook page if you would like to follow his journey
@ ambrose seize’s the day

And his hashtags are
#Ambrosespotters
#keepcrawlingambrose
#slothbusiness