Matthew McQuinn
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Matthew was born in November 2002 just 9 days after I went to the doctor because I didn't feel well. Turns out I had severe toxemia and Matthew had to be delivered by emergency C-section at almost 26 weeks gestation. Born a whopping 1 lb, 9 oz, his lungs were severely underdeveloped and he needed
a lot of ventilation. When he was 2 weeks old, he got a staph infection that damaged his lungs even further. In the almost 8 months that Matthew has been in the
NICU, he has had pneumonia 3 times, a staph infection twice, and RSV.
When he was 4 months old, Matthew was taken off the ventilator for the first time. It lasted 3 weeks and then he needed so much O2 (between 70-80%) and had such a hard time breathing that he was
re-intubated at a children's hospital where he was sent for a second opinion. A week after he came back from the children's hospital, he extubated himself and they decided to try leaving him off the vent again.
I think it would have worked that time, but that's when he got RSV and had to re-intubated as well as put on nitric oxide and be paralysed for 17 days.
This was a huge setback. He was sent again to the children's hospital for a trach, as the doctors said he would need long-term ventilation. We were devastated.
It turns out that the trach is a lot easier than we thought. Matthew has far more mobility and now bottle feeds. He even tried rice cereal yesterday and now we're on our way to a whole new world of food! He still has his NG tube, because he can't take enough calories by bottle to grow.
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As of now, June 2003, he's still requiring a huge amount of oxygen (from 60-100%) but his doctor does feel that there have been improvements. He's been able to handle lower ventilator settings. He gets steroids every so often to bring down his O2 needs to buy time until he grows. We're hoping that time and growth will enable Matthew to eventually get off the ventilator and oxygen.
Matthew is the happiest baby that I have ever met. He smiles and laughs all of the time. He loves his toys, being read to, and getting his nightly bath. He also loves cuddles and lots of attention from the nurses! He's our little fighter and a true inspiration. He reminds us that we can't wait for that elusive day that things are "better" in order to be happy. Happiness is found right here, right now.
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Update - October 2003: I'm happy to report that the past few months have brought us many improvements. After discovering that Matthew's body was not producing enough steroids on it's own, he was put on a maintenance dose of Decadron, which is very slowly being weaned to allow his body to take over steroid production. Since this discovery, his O2 requirements went from 60 - 100% down to around 40% and now down to around 30%.
His ventilator settings came down quite quickly and now he's spending a few hours a day on the CPAP machine with peep only. What freedom!! We're able to walk around the room and even out into the hall to visit nurses and the clerk. We're gearing up to get him into the stroller and try for a walk around the ward. Weather permitting, we'll go outside... something Matthew has yet to see.
The "H" word is finally in use. HOME. After many months of not being sure we'd ever get to the point where Matthew would come home, it's an understatement to say that we're excited. We're aiming for a Christmas homecoming. What a beautiful gift that would be!
For parents out there just learning that their child has to have a trach, please rest assured that it's far less scary than at first it seems. Life with a trach is not what we dreamed of when Matthew was still in the womb, but it's not the worst thing either. Since getting the trach, Matthew has come leaps and bounds developmentally. He's enjoying life to the max, and so are we.
Update - November 2003: It seems so quick to report another update, but so much has happened so fast! After alot of fidgeting with the C-PAP machine, we discovered that Matthew didn't like the peep, so his vent settings were turned down considerably and he started sprinting off the vent. He started with a few hours per day and worked up to being on the vent at night only. As of October 29th, Matthew has been off the vent completely. He is now in oxygen only. His O2 needs have come down again - he's now in .3 litres.
On November 16th we were able to bring Matthew home for a couple of hours!! It was heavenly, but oh so hard to bring him back to the hospital! From now until discharge, we will be bringing him home for a few hours each Saturday and Sunday. We will also bring him home for a visit on Christmas day.
Discharge from the hospital is tentatively scheduled for early January. If all goes well, decannulation is hoped to be done next spring. We're on our way!
Update - March 2004: Matthew came home from the hospital on Boxing Day 2003. It was amazing! After 13 months in the NICU, we had our baby home! Unfortunately, he came home with what we thought was a cold. We had no nursing care at home and we took turns staying up nights with Matthew to suction, give neb treatments, etc. We made daily treks to the hospital insisting that Matthew was having a harder than usual time breathing, but were sent home. After a few weeks and a couple of hospital stays, X-rays, IV antibiotics and a CT Scan, it was determined that he had a collapsed lung. He was sent to a sick children's hospital for a scope and much to everyone's surprise and
disappointment, it was discovered that he has bronchomalacia and subglottic stenosis (60% closed). He's been put back on C-PAP and is still in the hospital. The ENT team will not attempt reconstructive surgery until he's at least 2 years corrected age.
The good news is that now that he's going to have this trach long-term, the government thinks we deserve some help, so they are going to help us out with the cost of medical supplies and pay for a nurse for 4 hours per day so that we can sleep! We're in the process once again of planning for his home coming.
It's been a long, hard 16 months, but Matthew is still a very happy baby...er make that toddler! He amazes me every day with his spirit and strength.
