Monday, January 29, 2007

No worries

One of the things I've learned about infants, being around so many over the past few months, is how resilient they are. They are too young to learn any fear or anxiety. They live in the moment every second of the day, and the tough times pass for them without a second thought. And as far as Quinn and all these needles go, I am very thankful for that. Besides, it's always nice to be able to brag about your kid. My son, you are a fearless little man. You make your dad proud.
Quinn had the line in his chest removed on recommendation from the cardiologist. Antibiotics injected so close to the heart could cause damage. So his meds come through the various IV's he's had. And this little man's luck remains terrible with the IV's. It takes days of poking and tweaking to successfully get one in, and they sometimes last for only a day or two. His last IV in the hand worked it's way out after just one day.

Without a line for the meds, he gets the shot in the thigh which gives him a burning muscle soreness. Then it's back to getting repeatedly stuck to get another IV in. And being the fearless little man that he is, he's always pleasant and cooperative with the IV teams right up to the point where it hurts.
Steph has been doing some belly massages to help Quinn with the stomach pains, and it works wonders. I knew she'd be a great mother.

Quinn's smile is the most infectious thing I've ever seen. Nothing like seeing it after a long day.
Getting him to gain weight is still a big focus for Steph and I. Some days he gains, some days he loses. At over two months old, he still weighs about 7 and a half pounds. At the hospital he is faced with a lot of distractions, but once we get him home he can eat and sleep all he wants. The old adage "No pain no gain" doesn't apply right now. Pain is the last thing this kid needs.
So far, the indications are that he never had an infection. The bacteria that showed up in his spinal tap were bacteria associated with the digestive system. Speculation is that the sample became contaminated during the spinal tap. But like I mentioned earlier, this is a lengthy and thorough precaution. In a few days he will be completed with the treatment, and on his way home again. Looking forward to that. Posting has become harder to do these past few weeks, but I thank every one of you who has followed my family and had us in your thoughts and prayers. I take effort to not single you all out and thank you individually on this blog. Just know I appreciate it and think about you in return.

Wednesday, January 24, 2007

Unsolved mystery

No definitive answer as to what is causing the high white blood cell count or the fever which has mostly subsided. Only numerous possibilities that range all over. The immediate introduction of antibiotics after his first set of tests leave many question marks about follow on test results. Quinn has been put on a two week antibiotic treatment. This could be curing a dangerous internal infection, or it could be for nothing but a cold. Either way, it's a lengthy precaution. One of the misfortunes of this treatment is that the antibiotics cause gas and stomach cramping. He gets hungry but often takes hours to calm, so feeding him has become tricky. He falls asleep very shortly after all the crying, whether he's got milk in his mouth or not.

He takes his meds right into the chest. A line was surgically placed into a vein just outside his heart.

Earlier today, x-rays showed that the line penetrated too deeply and needs to be retracted a bit. So for tonight, he will get the antibiotics through a syringe into the thigh muscle.

I have to agree with Maria's comment about watching your children suffer. I'd prefer just about any hardship over watching him have to endure more. Seeing him repeatedly brought to the point beyond crying, where you just see exhausted whimpers, it wears a mom and dad down pretty good. Steph and I are holding onto the belief that he will still come out of this all free of any negative long term effects. With no certainty of what his affliction is, we hold him and pray a lot. And we continue to be grateful for the countless other thoughts and prayers from so many. I think they can only help. He is already looking much better than he did a few days ago. He's not so pale anymore.

Sunday, January 21, 2007

New challenges

So I didn't get my wish for Quinn to spend the next few months relaxing at home. What he got over the weekend was indeed the opposite.

His temperature reached over 103 on the morning after his first night back in the hospital. The first spinal cord culture came back with traces of bacteria, indicating numerous possible infections including meningitis. Antibiotics were given immediately and more tests were performed. It is suspected that his first spinal cord culture may have been contaminated with blood or stool from Quinn's forceful pooping during the needle insertions ( -10 on a scale of fun things to watch). Over the course of the weekend, six spinal tap attempts to yield two usable samples. I've never had a spinal tap myself, but when they don't get the needle into the spine, and instead hit a nerve, it looks and sounds unbearably painful to me.

I lost count of how many IV attempts occurred each day to yield only one usable line in his ankle.

Two swabs up the nose into his sinuses, and a catheter for a urine sample.

By Sunday night we are unable to lay him on his back or burp him without cries from the needle punctures in his spine. The doctors have had conflicting and inconclusive results from these tests, and have been unable to diagnose what the infection is, or if he even has one. Nor have they been able to rule out meningitis. He is generating a lot of discussion among the different specialists at the hospital. Currently, with no diagnosis, the discussions are for Quinn to undergo a hospitalized two week antibiotic treatment to err on the side of caution.

His temperature has gone down, but is fluctuating between 98 and 101 every few hours. He is looking a little paler than normal and sleeps more often with longer durations, probably from exhaustion. He has been crying more and is tougher to calm. His desire to breast feed has gone down significantly, so we bottle feed him.
When awake he is still interactive and alert. Steph and I are very glad for that. He still has a high white bloodcell count, and it's troubling that no one knows what is wrong. If he undergoes a treatment that eliminates the symptoms, we may never know. With so many scary possibilities, we are back in the waiting game and hoping for a positive outcome.
I am postponing Quinn's welcome home celebration until I am certain he has no illness. I would like those of you who have been pulling and praying for him to have a chance to meet him, but there will be no undue risk involved. None of this has happened due to lack of prayer for the little guy, but as it turns out I was a little ahead of myself wanting to celebrate.

I saw tonight's game. I'm not horribly upset that the patriots won't be going to another Superbowl. It doesn't seem so important at the moment. They'll live to fight another day just like the mighty Quinn.

Saturday, January 20, 2007

No stranger to pain

Quinn gained over a half a pound and grew an inch and a half during his week home.

All seemed well until today, Friday. While I was at work, Steph found he was running a fever of about 101.5. She took him to his local pediatrician who, after three needle attempts, took some blood. It was discovered that Quinn had a high white blood cell count, indicative of a possible infection somewhere in his body. The doctor told us to take him up to the Providence hospital emergency room to get looked over. As soon as I finished my drive home from work, the family hopped in the car and headed for Providence.
Five attempts with the needle to successfully get an line into Quinn's small veins. I'm glad that he is so young that he doesn't know when he's about to be stuck and tweaked around. He only cries when it hurts. Next up was a spinal tap to test for meningitis. I knew he wasn't going to like this. Steph left the room having no desire to watch. Quinn was stripped naked and held tightly on a table hunched over into a ball. The first needle into his back produced only blood and no spinal fluid was able to be extracted. The next attempt made it into his spinal cord, and I got my first view of what spinal fluid looks like. I stood off to the side and whipped away at Quinn's naked little bum as he cried and soiled the table. Not at all how I imagined spending the evening.
I won't jump to any conclusions, and neither will the doctors. A fever and a high white blood cell count could mean any number of things, and the doctors won't have the full blood test results for another 48 hrs. He has been admitted to stay over the weekend under observation, and placed on antibiotics. It is a little sad to see him back here after having him home. A lot of precautionary measures have been taken today, and I know you can never be too careful with an infant who has had surgeries. But I sure would like to see him avoid any more spinal taps, at least until he is old enough for local anesthetic.
Other than these symptoms, Quinn looks very good, active, and doesn't cry very much. If it happens that he does have an illness, I will postpone the celebration in Mystic. I will let you know what the doctors find out.

Tuesday, January 16, 2007

My wish for you

I wish for you to spend the next few months chillin, relaxin, and putting on weight. Quinn is visited twice a week by an in home nurse who weighs him to ensure he can eat right and gain weight.

As my father mentioned earlier in his comment:
The celebration will be at the First United Methodist Church at 23 Willow Street in Mystic, CT on Saturday the 27th at 1 P.M. This will be "pot luck" so please bring something to share.
If you can make it, my family and I are looking forward to seeing you. Quinn enjoys meeting new faces. We have been advised by the nurse that he has a somewhat compromised immune system that is still strengthening, and I would be beside myself if he got sick because mom and dad threw him a celebration. So I have to make the rule, no coughing on the baby.
Being at home with him is fantastic by the way. I've never spent so much time smiling.

Sunday, January 14, 2007

My Wish for You

I wrote this letter to Quinn 2 weeks before I had him with the intention of posting it the day he was born. I didn't feel that it was appropriate to post this before. But now I'd like to share this with my son.

You're not born yet, but sitting here imagining about all the things you will face in your life leaves me thinking about everything that I wish for you. Of course the biggest wish that I have for you is a happy and healthy life. But there is so much that goes into achieving that life. I wish you a gentle heart and spirit like your father. He is so good at seeing the best in people. I also hope that you are able to learn from him how to let people be who they are without judging them or trying to change them. Even if you think you know what's best for people they tend to find their own way in life. Everyone has value, even if we can't quite understand what it is. I wish you enough self confidence and determination to achieve what you want to in life, but enough humility to keep you grounded. I wish you just enough heartache and tough times to teach you to value life and how to live it well, but no more than that. I wish you a sense of responsibility, but not so much that you hurt yourself trying to do everything for everyone. I wish you a good head on your shoulders so that people are unable to take advantage of you and you can keep yourself safe. I hope that you are good with money, however, remember it is just money and don't let it get in the way of friendships. Be true to yourself. The biggest regrets that I have in life are not the things I didn't do, but the one's that I did against my character. I wish you strength to overcome all obstacles and endure hard times. Remember life is constantly changing. I wish you a love of traveling so you are able to truly understand the things happening in world. Finally, I wish you faith, in yourself and God, he will get you through things when nothing else will (how true that statement turned out to be). I hope you always know that your father and I love you very much and that you have always been wanted. We understand that you will make mistakes in life and we won't always see eye to eye on everything, but please understand you can always come and talk to us and we will listen. I love you so much and I can't wait to be a part of your life. I hope I can be a good mother for you.

Saturday, January 13, 2007

Mighty Quinn has left the building

Quinn has been discharged from the hospital as of yesterday and is at home with mom and dad. He is in great health and is doing everything a 1 month old baby should be doing.

Steph or I will add more pictures as soon as we unpack our things from the long hospital stay. At the end of January will be a homecoming celebration/social at my fathers church in Mystic CT. Quinn will be the host. To those of you who stuck with us through it all, I will never be able to fully explain what your support has meant to me personally. I can never repay you.
To answer the question. Yes, I have changed Quinn's diaper many a time. And pretty good at it I might add.

Thursday, January 11, 2007

No news is good news

Old and tired dad checking back in to let you all know that Quinn is doing just fine. This is a quick update for the folks who have been routinely checking.

Quinn's last task for the doctors is to show that he can eat and continue to gain weight. Now that he's got himself a working digestive system, this one seems a cake walk for him. Steph is by his bedside 24 hrs a day with doctors orders to feed him whenever he is hungry. The breastfeeding has gone great. If mom were a gas station, Quinn would be the high powered sports car. Doing donuts in his diaper.
He has one IV remaining in his arm. If all goes well tomorrow, it will come out as he is discharged and sent home.

He'll find out the world extends beyond the inside of a hospital. And mom and dad will find out there's no more nurse call button. Trained and paid professionals to help with the diaper changing among all others. I wonder who's gonna be changing the kid now.
To be continued...

Saturday, January 06, 2007

Quinns fad diet

Quinn was given extra amounts of IV fluids and hydration to help try and flush the barium chemical from his body tissues. I came to see him after work Friday and found he was swollen up again like a little marshmallow man.

These are some before and after pictures over the course of a single day.

By Saturday night he had shrunk back down to his old self.

By Sunday, Quinn seems to be relatively pain free. Breastfeeding has gone as good as we could have hoped for. He drinks moms milk, burps, farts, and poops his diaper like a young stud. His stomach and intestine are working for the first time in his life. As of today, he has come off of IV nutrients altogether. Mom will feed him whenever he is hungry, and if he can handle all the milk, he is good to go. As in go home with no more tubes, wires, or surgeries.
Barring any setbacks, Quinn is looking to make it through all of this pretty unscathed. I know he progressed with varying levels of success through it all, but I always felt bad for him when I was told he would have certain medical conditions for the rest of his life. All parents want their children to have a better life than they did. And I know I never had to deal with any of the complications the doctors thought he would be faced with long term. It has ultimately worked out just as I had hoped and prayed for. He is normal in just about any sense of the word.
Hopefully to Quinn, it will be like none of this ever happened. His scars are healing nicely, and there have been no complications with any of his surgical repairs. I'm so thankful. It is the first time since he was born that Steph and I are feeling excited to bring him home.
Video of the first time I fed him. He was not sure what to make of this oral feeding business.

Doctor visit. Quinn the cool costumer.

Hopefully, every post from here forward is pleasant news.

Thursday, January 04, 2007

Closer to home

We have moved back to Providence Hospital where the studies have begun to repair Quinn's stomach problems.

His first day in Providence was eventful and pretty much forgettable. Quinn performed a second self extraction of his nasal feeding tube (the one shown in the previous post) the first night there. And the tube penetrating into the side of his abdomen was found to have worked it's way out of his stomach at some point as well. Doctors discovered this by running the barium liquid through that particular tube to follow his digestive flow with x-ray. The barium chemical didn't go into his stomach however. It was instead pushed into his abdomen tissues, which causes a painful reaction. Quinn quickly became livid. Steph and I were told to watch him closely, as the barium chemical could cause infection being outside of his digestive system, and flowing freely throughout his abdomen. If he is in considerable pain for more than a day, it would likely mean infection. Quinn cried hard and flailed for hours, but thankfully he appears to have avoided an infection. The tube in his side, discovered useless, was removed leaving him with only IV fluids to maintain him until he could somehow be fed again.
After some additional X-rays and discussions among the doctors, it was decided to try feeding Quinn by mouth in very small amounts to see how he handles it.

He drinks less than a tablespoon of milk every three hours. If he shows he can handle the milk, his doses will increase until he is eating enough to fuel a healthy growing baby. That is the best case scenario. For now, it is a little milk, and IV supplements. He is taking his time getting use to a bottle. He sucks on it, but seems surprised that milk appears in his mouth. He contemplates before each swallow.

The staff here also has no luck getting new lines into Quinn, but like in Boston, it doesn't keep the staff from trying.

If only he had bigger veins. I still grit my teeth a little watching him get stuck for the ten billionth time, hoping they'll get it in successfully. I have yet to see a successful attempt. I must be bad luck Quinn.

I am back to working a full five days a week, and I'm certain I won't have as much time to update this as I have in the past. Now begins the job of having a newborn and needing my own sleep so I can work. No more waiting until everyone is asleep so I can grab a computer and type away. This is a subtle hint Steph, ye' who seldom updates anymore. I will never get over the way so many people have come to follow my sons progress and try to ease the emotional burden for my family. I should mention the help with financial burden as well. It's a bit of an odd feeling for me trying to accept money from people, especially one's we don't really know. But whatever doesn't go to the hospital bills, Quinn has a college fund started. I can't thank you all enough. It has surprised me at how much I truly appreciate such enormous and selfless support.

That's quite an impressive fan base you got there young man.