Wednesday, June 20, 2012

A Long Journey

The past 11 months has been a crazy, stressful journey for us.
Liam had a total of 9 hospital stays,
4 major surgeries,
Too many to count minor procedures,
And is far behind in just about every category.
We've spent more time in the hospital than home,
Our family has spent more time apart than together.
Thankfully we've had 3 1/2 weeks at home now.
 On July 14th Liam will be turning 1!!

Liam at 7 hours old, our first meeting @Kaweah Delta

Our second metting at 48 hours old @UCSF
Liam on ECMO

7/19/11 Taken off ECMO after 4 days

At 1 week old he under went life saving repair surgery 7/21/11
And it was the best birthday gift I had ever recieved

At 1 month old Liam was excubated for the first time
And we got to hold him for the first time

And we got our first family portrait

At 1 month he also got his first bottle

At 1 month and 4 days old Liam got off CPAP and on a Nasal Canula

At 6 weeks (1 1/2 months) Liam got to come home

6 weeks old I took his first portraits at home

September
At 2 months old Liam's 2nd hospital addmitance was @UCSF for an NGtube. He was officially labeled failure to grow. We stayed 10 days.
October
His 3rd hospotal admittance was 2 days after we were discharged from UCSF. We took him to Childrens because he couldn't hold his food down. He under went surgery for  a Nessen Fundoplication and Gtube placement. He also learned he was Biotinadase Defficient and started him on Biotin. We stayed 4 weeks, spending his first Halloween and the begining of November in the hospital.

We were fortunate to spend Thanksgiving and Christmas at home.

We also got to bring in the new year at home

But in January Liam cought a cold that landed us in the hospital for 3 days (admittance #3)
In Febuary he got "sick" again and we went back to Childrens. He couldn't hold down his 30 calorie feeds. (admittance #4)
In March we were back at Childrens for the same issues resulting in admittance #5. Liam under went surgery to take out the Gtube and replace it with a GJtube. This worked...for a short period of time.
48 hours after being discharged we took Liam right back in for yet again the same issues. Admittance #6. They played around with his formula and said they figured it was just a severe food allergy and was put on Elecare.
Nothing seemed to help Liams underlying respitory issues that we were sure was responsible for all the vommiting. In April we were back at Childrens for yet again the same issues. Admittance #7. From there Liam was air lifted to UCSF where they tried to figure out if he'd need his high right side diaphragm repaired. They decided not to risk it and after 2 weeks discharged Liam on oxygen.
Admittance #8 was just for a chest CT and bronchioscope. They figured out that his right lung doesnt fully expand because of his high right diaphragm and his left lung is way underdeveloped. His upper airway is slightly floopy. The CT also shows pnumonia and the Bronch showed an infection in his airway. Regular xrays dont show pnumonia in Liam when its in his lower right lung.
Admittance #9 was due to a severe allergic reaction causing asthma attacks and poor air movement in his lungs.

Its been a crazy journey so far. We've been blessed every step of the way, even if its frustrated us more than anything weve ever been through before. We've had 3 1/2 weeks Through it all our little man has kept a smile on his face.



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