Friday, December 31, 2010

Good Bye 2010!

It's been the hardest year of my life, but there have been points of brightness too. We knew James was going to need corrective surgery this year, but we weren't expecting all the side-effects (breathing issues mostly) caused by his irregular anatomy. But God has carried us through it all and we continue to be hopeful that the worst is behind us. Andrew joined our little family in October. He has brought new challenges and renewed joy to our lives. We are sending up unending prayers that 2011 will be healthy and hospital free for all of us. Happy New Year!

Cute outfits from Grandma Iverson
Playing on Christmas morning
Andrew is very strong and growing fast
James still loves to read (watching TV is his other favorite past time)

Wednesday, December 22, 2010

Worrying from Home

James was released yesterday. They more or less kicked us out. I know that James isn't all better yet, but all of his tests have been normal and his vitals have been good. For these reasons, the doctors didn't see any reason to keep him. We got home at about 5 last night and James has been grumpy and irritable ever since. I think he got a little spoiled over the last couple of weeks in the hospital having his every whim given to him. Plus, he's still a bit under the weather.

James is on several medicines now. He's still on the Prevacid to help control his reflux. He's now also on another medicine that speeds up his digestive system that should help reduce reflux as well. James is taking oral steriods for another week to help reduce the inflammation in his airways. He also has 3 different nebulizer meds that he can take to help with his breathing.

It's nice to be home, but with it comes a whole new set of worries. As I mentioned before, he's grumpy and I have to worry about why. We tried tylenol, so I think he's just irritable. I worry every second that his breathing will worsen and we'll have to take him back to the hospital again. I'm scared something will happen to him on my watch and that petrifies me. Being down a similar road before, I know that these worries will lessen with each passing day, but that doesn't make me less worried now. I'm trying hard to let God shoulder these worries for me, but it's not easy.

Monday, December 20, 2010

Please Keep Praying

Although James' surgery went well, he's still in the hospital and not all better. His issues at this point appear to be mainly respiratory. His airways are probably still swollen and he's retracting (his ribs cave in when he breathes). His breathing is also a little fast, all indicating that he's working harder to breathe than he should be. The doctors can't give me any definite answers which tells me they don't know what's causing his problems and so aren't sure how to treat them effectively.

I feel like I'm screaming my prayers at God these days. I have been praying for a miraculous healing for James' health issues since before he was born, but for some reason (unknown to me) our family, especially James, is being put through trials that we can not shoulder on our own. I will continue to pray for a miracle, but would be happy just to have answers on how to make him feel better. I mostly just pray for James' suffering to be over. Please pray that God will bring strength and healing to our family.

On a happy note, Andrew is growing well and full of smiles for us. If not for him, I'm not sure how I would get out of bed some days. I guess I know why God surprised us with our second little bundle of joy so close to our first :)

Tuesday, December 14, 2010

James' Surgery (#9)

James has surgery yesterday and is doing good. He was scheduled for 9:40 am, but as we all know these things never run on time. They took him back to the OR at 11.

The pulmonologist went first. They did a scope of his upper and lower airways. They found that the majority of James' airways are swollen and some are even flattened as opposed to being round. His vocal chords are swollen too. There was also some really thick mucus blocking a few smaller airways that they were able to get cleaned out (he hasn't sounded so clear in weeks). At this point it's hard to tell the cause and it's possible that there are multiple things going on. They took a culture from the inside of his lungs and this should confirm that his reflux has been causing him to aspirate food into his lungs, but we won't know for a few days. Finally the pulmonologist did a pulmonary function test to test his lung strength. We should have the results of this test today. This all took about an hour or so.

Next the surgeon was up. They have a lot of technical terms for what they did and why. I will take a stab at an explanation. At the base of everyone's stomach is the pyloric valve that opens and closes to allow food to pass from your stomach to your intestines. Because of James' gastric pull-up to connect his esophagus to his stomach, his pyloric valve is higher than normal and in an unusual orientation. This abnormal anatomy sometimes requires the pyloric valve to be disabled (about 20% of kids that have gastric pull-ups). They put a small scope though his belly button and another one down his esophagus to see what they were doing. They were then able to then do the procedure with only 4 small incisions (as opposed to cutting open his belly) which reduces recovery time and the chance of infection post-op. This will hopefully allow his stomach to empty more efficiently and prevent him from refluxing food into his airway, but only time will tell. The surgeons feel that this will help, but don't necessarily expect it to totally fix the problem because he will always have an unusual anatomy. This procedure took a little over 2 hours.

James made it back to recovery around 3 and we were able to see him at 4. He is on pain meds for now to keep him comfortable. They are going to put a PIC line in today so they can get him some calories via IV. The poor kid has gotten so skinny in the last couple weeks. He won't be allowed to eat until later in the week and it will be slow process getting him back to full feeds. We are hoping that we will get to go home by Monday. The doctors are confident that we will be home by Christmas.

My mother-in-law is town this week helping out with the baby. My dad and brother are planning to help out next week. Dave is hoping that once James comes home from the hospital, he will be able to work from home until the New Year. God, our family and your prayers have kept us going and continue to give us strength. Please keep praying for James' healing and our sanity!

Wednesday, December 8, 2010


I don't really know where to start. Life with James has always been an emotional ride, but it's been an absolute roller coaster lately. Let's recap...

When I was about 28 weeks pregnant with James when he was diagnosed with some type of Esophageal Atresia (missing part of his esophagus). We knew that his situation would be able to be corrected surgically. Before we could even meet the surgeons and have a consultation with them, James was born at 33 weeks and had his first surgery when he was 3 days old, weighing right about 4 pounds. The surgeons were fairly confident that he would be fixed and ready to go home as a "normal" baby within a matter of weeks. 10 weeks (and 4 more operations) later he did get to go home, but not fixed. James didn't have corrective surgery until April of this year (postponed from January). I suppose I thought, probably naively, that he would be all better in a few weeks and his crazy start to life would be all behind us... not so much. In the 2 months that followed James' corrective surgery, we made 5 trips to the ER for various things and dealt with constant reflux and spit-up. By the end of July, we were all home again and thought we fixed our problems with high dose reflux medicines. We had a fairly quiet August and James had tubes put in his ears in September. Then came October...

James came down with a couple of colds that turned nasty...pneumonia. He spent 9 days at Peyton Manning Children Hospital in Indy and then 2 more days once we got back to Pittsburgh in the hospital for dehydration. He finally got all better around the second week in November. Then the day before Thanksgiving (maybe 2 weeks later) James got sick again. We took him to the hospital that night, he got discharged the next day. Still sick and back to the hospital the Monday following Thanksgiving, discharged 2 days later. Still sick and back to the hospital on Friday. By this point he's pretty sick and admitted to the ICU, where they diagnose him with a bacterial pneumonia (the bacteria that normally causes ear infections moved into his lungs). At this point, we consult pulmonology and the surgical team that has been following him since birth because the doctors are finally convinced that something else is probably going on. Their first instinct was Cystic Fibrosis (because he's so sick from "minor" virus/bacteria and his mucus is really thick), but James had full genetic testing when he was a newborn and we know he doesn't have this. There are a lot of theories floating around, but they finally feel they know what's going on and have a plan.

Due to James' gastric pull-up to connect his esophagus to his stomach he has an unusual anatomy, his stomach is in the right side of his chest cavity and he doesn't have a valve in between his esophagus and his stomach. The doctors have noticed by looking back at all the tests James has had done over the past 6 weeks that his stomach is not emptying as fast as it should be. Apparently this is due to his unusual anatomy...the pyloric valve can't work properly and so his stomach is not emptying into his intestines fast enough. This has been causing his severe reflux. They can "fix" the problem by disabling the pyloric valve (it's called a pyloric-plasty). The hope is that this will eliminate his reflux. ...The surgery is scheduled for Monday.

The doctors think that for the past 6 months James has been refluxing so badly that sometimes he gets stomach acid and food into his lungs. They believe that this has been aggravating his airway and making his colds more severe. The pulmonologist will run a couple of tests and check the integrity of James' airways when he has surgery to make sure permanent damage hasn't been done and to eliminate other potential problems.

Once he has the surgery (his 9th), the main risk is called "dumping." This is when the stomach empties too fast into the intestines and nutrients aren't absorbed properly. The doctors feel that the risks of not doing the surgery (aspiration and permanent lung damage from stomach acid) are greater than the possibility of "dumping," which can be addressed with medication.

So again, I hope (possibly naively) that this surgery will fix all of James' problems and turn him into a "normal" kid. Time will tell...

Sunday, December 5, 2010

Andrew is 2 Months Old

Andrew is doing great these days. He has his 2 month check-up tomorrow. Andrew has rolled over from his tummy to his back several times now, although he only does it when he's angry. He is quite strong for such a little guy. We still haven't got him on a regular schedule, but he is keeping food down now that he is all fixed. He is very interested in the world around him and he loves to talk and smile. A few pictures...

holding his head up high :)
Relaxing after surgery...happy to be keeping his food down
Playing happily on the quilt Oma made him

James is still sick and in the PICU at Children's Hospital of Pittsburgh. He is off oxygen now. He had a bacterial infection in his lungs this time on top of his cold. He is getting a combination of antibiotics and steroids to hopefully get him feeling better soon. Please pray that God heals him fast (as mommy really can't take much more of this). Here is a picture of him happliy playing a few weeks ago.

Friday, December 3, 2010

Is Cold Season Over Yet?

It's barely December and James has already made 5 ER trips this cold season and been admitted each time. First thing this morning was our most recent trip to the ER. After a couple of different ambulance rides and one helicopter (his 3rd helicopter trip of the year), James is now in the PICU at Children's Hospital of Pittsburgh once again. James has been fighting a cold now for over a week.

Last Wednesday (the day before Thanksgiving), we took James to the ER because he was retracting and working hard to breathe. They kept him overnight for observation, but was able to come home on Thanksgiving. He seemed to be doing better and was coughing up a lot of mucus but keeping food down. Then early Monday morning his breathing became really labored again, he was unable to work up any mucus, and James turned dusky, so we took him back to the local ER. He was transferred to Children's where they monitored him for a couple days, but there wasn't much they could do for him since it was a virus and sent us home on Wednesday. We slept well that night but woke up rough Thursday and clung to me all day. He slept well again last night though so I was hopeful that he was healing in his sleep. However, this morning he awoke struggling to breathe again and ended up getting mucus caught in his airway so the ambulance was called and they brought him in.

The whole situation is very frustrating. Dave, Andrew, and I don't even have the sniffles so we are nervous that there is something else going on besides a common cold. The doctors have run all kinds of tests and seem to think it's just a virus (but not RSV). Today there are more tests and still no new ideas. However, we probably will be taking James to see a few more specialists in the next month to make sure there's not more going on (allergies?, asthma?, ???)

Please pray for James' health, for God to give Dave and I the strength to keep going, and for Andrew to stay healthy!