Thursday, April 30, 2009

Awesome Lawson

Lawson had a great day today. He spent the day resting peacefully, but was awake for about an hour while my mom and I visited. He was calm and quiet, yet wide eyed when he was awake. Dr. Rice came in this afternoon and was pleased with his progress. He had one 'episode' overnight, where his oxygen saturation level dropped, but he recovered quickly and hasn't had any more episodes since then. The x-ray showed that his right lung was a little 'wet' so they have started him on a diuretic to dry out his body by making him urinate more often. While we were there it was definitely working; he had a diaper that weighed 3 oz! :) He was stable today, with very low ventilator settings and lots of pain meds. They are planning to wean his pain medication tomorrow and possibly begin feeding again. Over the weekend, the plan is to move him to the conventional ventilator and then extubate (remove the tube) by the beginning of next week. Dr. Rice seemed optimistic that the extubation will be more successful this time. For now, Lawson is just awesome!

Wednesday, April 29, 2009

High Five

Danielle and I arrived at the hospital early today so I could have some time with Lawson before his surgery. Brian stayed home to get Lacey off to daycare and mom felt like she could handle the stress of the day best at home. Brian got there early enough to spend some time with Lawson before his surgery. I got to hold him again and was actually happy that they were late in starting so I could spend more time with him.

They came to get him at about 11am. We were lucky enough to get a special room while we waited. The NICU has a room called 'Care by Parent Room', which is designed for families that are bringing their baby home. It is set up with comfy chairs, a television, and a bathroom so that parents can 'practice' with their baby for a day before they actually take him home. We were allowed to wait there during his surgery. We got regular updates from his nurse, Kelly, and were thrilled when she came to let us know that things went well and they were finished after only a few hours!

Dr. Rice, his surgeon, came and talked to us soon after and was practially beaming. Considering the previous conversations we had with him, it felt amazing to see him so positive. As you know, I had asked for prayers after learning of the surgery from Dr. Rice last week. He was kind, but serious and blunt, telling me that Lawson had about a 50% chance of surviving the surgery. So seeing him so truly giddy made my heart melt. I realize that it is probably not giving such a wonderfully talented surgeon his due respect by using the word, giddy, but I really can't come up with a better word. His words exactly were "it couldn't have gone better!" He only had to remove one lobe of the lung and was able to remove the sequestration, leaving the lower lobe. The lower lobe is not completely healthy, but seemed well enough to leave for now. There is a possibility that it may need to come out later, but at this point Lawson has one healthy lung and a portion of the other.

After Lawson was safely back to his room we were able to come and see him. He was a little swollen, but looked awesome considering what he had been through. Everyone seemed upbeat and I got a chance to chat with the Respiratory Therapist who had been with Lawson during his surgery. He made me feel so good when he said, "Dr. Rice gave me a high five." His face told me that that was a pretty big deal. :)

The next 24 hours are critical, so please keep praying for us all. We are so grateful to everyone for their support, prayers, and words of encouragement! It has meant everything to us to know what a huge cheering section Lawson has. I am amazed daily by the outpouring of love from our family, friends, aquaintences, work associates, and complete strangers.

Here's a video of Lawson after surgery sucking on his breathing tube. Let's hope that means he'll be good at feeding! :) Just click the arrow button to play.

Tuesday, April 28, 2009

Family Day

We had an amazing time visiting with Lawson today. I think the pictures say it best . . .

It's time

The meeting went as expected today. Lawson will undergo surgery on Wednesday at 10am. The entire procedure is expected to take about 5 hours, with the actual surgery taking 3 - 4 hours. The CT scan he had this morning showed that the lung is much more damaged than the x-rays make it appear to be. It is unclear exactly what will need to be removed until the surgeons have a chance to see if there is any viable tissue left. Since it is a very risky procedure and the outcome is unknown, they have agreed to 'bend' the rules and let Lacey come back to meet her baby brother tomorrow. (There has been a flu restriction since he was born and only parents and grandparents are allowed to visit.) When I told Lacey this evening that tomorrow was the 'big day' for her to finally meet her brother she squealed and almost jumped out of her car seat! She's been waiting for this day for a very long time! (She doesn't know about the surgery, just that it's finally 'time' to meet Lawson.) My best friend, Danielle, is on the way and will be here with me and my family during the surgery. Please keep us in your thoughts and prayers.

Sunday, April 26, 2009

In the blink of an eye

Yesterday was my original due date. Instead Lawson came six weeks, one day early and has been fighting for his life ever since. We've had ups and downs, happy tears and sad ones. The news seems to go from bad to good and back again. This time he made it 22 hours off the ventilator. (for the quick update, scroll to the bottom)

The original 'problem' that caused the team of doctors at Duke to induce labor six weeks early was the fluid found in his lungs at my 33 week check-up. Since then he:

had chest tubes in both lungs to remove the fluid that was there inutero

spent 44 days on a ventilator (minus the 16 hours and then 22 hours he was extubated)

developed an abundance of blebs (air filled blisters) throughout his left lung

developed Pulmonary Interstitial Emphysema, PIE (caused by the ventilator).

has gone through 13 days of a ‘controversial’ steroid, Decadron, which actually seemed to help

has been exposed to the radiation of x-rays every 12 hours, sometimes more often since his birth

had a bronchoscopy (a tiny camera on a tube down his trachea)

was born with tracheomalacia (a weak trachea which closes when he tries to exhale unless stinted open by the breathing tube), which wasn’t found until the bronchoscopy

still has a large pulmonary sequestration, the mass of unhealthy tissue at the bottom of the left lung

had a pneumopericardium (air in the space between the heart and the pericardium, the membrane surrounding the heart) and a tube to remove the air

had a pneumothorax (air in the pleural space around the lungs) and a tube to remove that

has gone through two EEG scans (electroencephalogram- a test that measures and records the electrical activity of the brain)

has been through one CT scan so far and another scheduled for Monday

had a patch of his hair shaved and an IV placed in his head for a CT scan that never happened because radiology didn’t like the IV in his head

suffered a very serious IV infiltration (when the vein that the IV was going though ruptures and the fluid infiltrates the surrounding tissues) over a month ago on his left foot which almost cost him the feeling in his foot; it is slowly getting better

I’m sure there are more things, but those are the ones that come to mind right now. Most of them I have blogged about before, some I have not. It just seemed like time to recap our unbelievable journey. The hardest part is that the wonderfully trained, amazingly intelligent, and extensively experienced Duke doctors admit to having never seen a case like Lawson’s.

The extreme high that we were on Friday came crashing down Saturday morning when they called to tell us he would need to be reintubated and that his x-ray was concerning. His x-ray was considerably worse showing that he has developed a huge bleb and what seems to be atelectasis (several of the alveoli, little sacs that exchange oxygen/carbon dioxide, are collapsed). He is scheduled for a CT scan in the morning, we’re meeting with his team of doctors tomorrow afternoon, and he is on the surgery calendar for Wednesday. The fact that things looked so great on Friday makes it so much harder to accept the huge turnaround on Saturday. It’s becoming harder and harder to stay positive right now, so please say an extra prayer for me!

Friday, April 24, 2009

Nothing less than a miracle

The x-ray we saw today of Lawson's chest didn't even look like the same child! There was an entire section at the top of his left lung that was almost perfectly healthy! He still has the sequestration at the bottom of the left lung that has been there since the beginning. This has never really been the problem and he could go years without having to deal with it. But there was beautiful, healthy lung tissue where the nasty diseased lung was before. We just couldn't believe it! The only way to explain it is that God heard our prayers and healed his lung! There was talk yesterday about removing his breathing tube today, just to see what would happen. So after rounds this morning, his breathing tube was removed! When we arrived at the hospital, he was under the oxygen tent and breathing on his own- no tubes! His doctors were very pleased with how he was doing at the time, but are ready to reinstall the tube if Lawson needs it. Because of the tracheomalacia (floppy trachea) he needed a little help after a while. They decided to use a face mask with a heliox mix of 80% helium/20% oxygen because it is lighter and easier to breathe. It seemed to work and he was doing fine when we left. No one is sure what will happen next, but for now, he is off the ventilator and breathing on his own. The plan is to let him try this for as long as he can do it. Please keep praying for his conintued progress.

Thursday, April 23, 2009

Glimmer of hope

It's been a very long week since my last post. For whatever reason, I could not bring myself to type the reason I was praying for a miracle when I wrote that post. And it's still hard to do now, but the reason I needed a miracle was because Dr. Rice didn't think Lawson was strong enough to survive the surgery and without his lung getting better with the current treatment, there was no other choice. I know God has heard our prayers! Lawson's lung has made amazing gains over the past few days! It's not perfectly healthy and we're not out of the woods yet, but it looks like he won't need the surgery right now. Our meeting with the doctors is tomorrow afternoon at 2:30. Please keep the prayers coming!

Monday, April 20, 2009

Looking for a miracle

I'm not really in the mood to blog tonight, but I do want to ask for your prayers! I met with the pediatric surgeon, Dr. Rice, this afternoon and he said unless there is a dramatic improvement in Lawson's left lung by the end of this week, the only option will be surgery. We'll have a CT scan to check progress and proceed from there. Depending on how the lung looks, Lawson will either need a left pneumonectomy (complete removal of the lung) or best case scenario, removal of the damaged tissue. Unfortunately Dr. Rice doesn't seem to think there is any viable tissue left. He said that in his entire career he has never seen a baby with a lung this damaged. He has set aside time on Monday if need be. Please pray for a miracle!

Saturday, April 18, 2009

Early bird gets the wide awake Lawson!

We got an early start today, since we had a playdate for Lacey/parents' cook out planned this evening with a few of our friends. We tried to get in the 'whole family visit' early in the day so Lacey could have enough time for a nap, which is a necessity for playdates! As it turns out, that's when Lawson is the most awake. He was awake, alert, and happy the WHOLE time we were there! That never happens! My mom swears he was smiling at her! :) It was absolutely wonderful! When it was time to leave, he was still awake, so it was REALLY hard for me to say goodbye. I will definitely try to get to the hospital earlier from now on! There's really no other news to report. We're continuing the waiting game with the right mainstem intubation and steroid treatment. There was no change in the x-ray, but at least that means it's not getting worse.

Tomorrow is my mom's birthday. I would like to take this opportunity to say how grateful we are to her for everything she has done to help us keep our sanity through this unbelievably trying time. Truly if it weren't for having my mom here, I would have 'lost it' a long time ago! She has kept my house clean, dishes clean, pump parts clean and sanitized, cleaned things I would have never thought of cleaning. She has done every load of laundry that's been dirty since we came home from the hospital and caused me to forget the last time I wore something because it's always clean! She's kept Lacey while we've gone to the hospital, put Lacey to bed, gotten Lacey ready for daycare, taken Lacey to the park in our neighborhood, and any other 'Lacey job' you could imagine. She has been my shoulder to cry on, ear to talk to, and rock to lean on. She has been the voice of reason when Brian and I are stressed and a mediator when we get snippy with each other. We honestly would not be where we are right now without her! She's not much for being the center of attention, so she'll probably be mad at me for sharing but everyone should be showered with love on their birthday! So . . .

Mitzi, Brian, Lacey & Lawson

Friday, April 17, 2009

'Quick' Fix

The doctors called this morning to tell us the breathing tube had slipped out of the right side and was now giving air to both lungs. They planned another bronchoscopy to put it back where it should be. The assured us it was a quick fix and no big deal. This was supposed to happen at 11am.

Brian's dad came up for a visit and to meet his new grandson for the first time today. We got to the hospital at around 1:30pm, expecting his bronchoscopy to be finished. It hadn't happened yet. The receptionist said they were just about to start and asked us to wait in the waiting room. We waited for about an hour. When the doctor came out, we found out that the procedure that the receptionist was talking about was for another baby in Lawson's room; his hadn't started yet!! Apparently the other baby's procedure involved a sterile environment, so no one else could be in the room.

Luckily, we were able to see Lawson BEFORE they began. Brian and his dad went in first. When they came out, Grandpop was really happy because he felt like Lawson knew he was there. He was wide awake and seemed really alert. When it was my turn, I got a few pictures, but they kicked me out before I could get a video clip because they were ready to begin. About 15 minutes later the doctor came out to let us know that everything went fine. They were just waiting for the x-ray to come back so they could make sure they got it exactly where they wanted it. The team couldn't leave until that was certain, which meant we couldn't visit either. We left the hospital at around 5:30 and asked the doctor to call when everything was complete. If you're doing the math, we spent about 4 hours at the hospital. In all we probably spent about 10 minutes with Lawson today. They called when we got home and everything was fine.

I was able to upload the video I took yesterday though. :) The clip is during the nurse's work up. She was checking his tubes and wires and changing his diaper. The voices you hear in the background are Brian's and Lawson's Primary Nurse, Cheri.

Thursday, April 16, 2009

Pretty nice day

Soooooo . . . we got a chance to chat with Dr. Goldberg and look at Lawson's most recent chest x-ray today. There's not a whole lot of change in the x-ray, but enough that Dr. Goldberg was pleased, which makes me pleased too! They have also been able to come down a little on the ventilator settings and increase his feedings. Being able to have the breastmilk has helped him gain a few ounces, since he lost down to about 4 lbs 5 ounces. The overall news today was fairly positive. He's slowly making progress . . . baby steps. Plus he was awake for quite a while, long enough for his 'photo shoot'. :) And Cheri, his Primary Nurse, who always makes us smile, was there today. This was just the day we've been needing!

It was also a nice evening for me. At my last Junior League meeting (the day before my OB appointment when all this began), I WON two tickets to a special event called Toast to the Tour. It's the kick-off event for the Showcase of Kitchens happening this weekend in Raleigh and Cary. I figured I'd be giving the tickets away, because I thought I would either be very, very pregnant or at home with a newborn. Since Lawson has been pretty stable and I was ready for some 'normal', I decided to go. My very good friend, Kelly and I went for a little while and enjoyed some girl time, free food and drinks, and great music. Of course we had to leave early because I was exhausted and had to pump! lol Baby steps for me too. :)

Tuesday, April 14, 2009


For the past two Tuesdays, my good friend, Lauri, has taken off work to help me out and drive me to the hospital. It's nice to have a friend for the drive. I don't think she knew what she was getting into today . . . We had a long to-do list before I had to be at the hospital for a meeting with Lawson's team of doctors. We had to return things to both Target and Walmart, then pick up a few groceries and return them to my house, and wait for me to pump again before we could go to the hospital. We grabbed a quick bite to eat at Chili's before heading to Duke. I ran into an old friend and caught him up on everything that's happened. It's the first time in a while I've had to start the story from the beginning. It was easiest to just give him the blog info. Not only is writing this blog theraputic for me, it makes telling the story a lot easier.

Lauri and I got to the hospital just in time for me to get to the meeting we were supposed to have at 2:30pm. She dropped me off and went to find a parking spot while I ran upstairs so I wouldn't be late. I wasn't late, since the doctors got busy and the meeting ended up beginning at 4pm. Poor Lauri waited in the waiting room the whole time! Then she drove back to Raleigh to pick up Lacey from daycare. It's gotten to the point that it's a surprise to Lacey who will be there to get her each evening- Danielle, my sister Michelle, Kelly, Nathan, Jeff, Lauri. I know this has to be taking a toll on her, but she's been such a trooper!

We met with two of the Pediatric Pulmonologists, Dr. Goldberg, and two of the Nurse Practitioners. We were presented with some research and we all weighed the pros and cons of using the steroid. After about an hour of debating, we decided to go ahead since there are truly no other options at this point. Plus the 'risk factors' are for very premature infants; Lawson is considered 37 gestational weeks old now and so has reached 'full term'. This means that the risks of using the steroid are much lower. The plan is to start the steroid tonight in conjunction with the right mainstem intubation. We will watch for progress over the next two weeks and stop treatment if there are any negative side effects.

Monday, April 13, 2009

Full gamut of emotions

My mom and I had a really nice morning with a little retail therapy. :) It was time to invest in a few shirts that actually fit 'up top' and are not maternity! I tried on about 25 shirts and ended up with 5!! We were at Kohl's forever! Since we were out and about for quite a while, I experienced a 'first' today, even after breastfeeding Lacey for 14 months- pumping in the car while eating lunch- a girl's gotta do what a girl's gotta do! The best part was the spot we chose. We carefully drove around Brier Creek looking for a nice secluded location. We chose a spot facing a big grassy hill behind one of the restaurants. It was perfect . . . until the grounds keeper began his laps on the lawn mower in front of the car! LOL!!

Brian called to let us know that the hospital had called him with an update. This morning Lawson's team met to discuss what to do next. Dr. Tanaka's turn with us is over and Lawson now has a new doctor, Dr. Goldberg, who is actually the Chief of Neonatology. They decided to do right mainstem intubation, which means they moved the breathing tube into only the good lung hoping to give the diseased lung time to degas (deflate). The idea is to keep the trachea open allowing air to go both in and out, but to not add any more air to the already distended left lung. The pulmonologist performed the procedure around noon and we got an update not too long after that. He made it through beautifully and was resting afterward.

By the time we got to the parking deck, it was exactly 4:46pm. I know this because my mom and I were rushing to get to the parking office by 5pm. Apparently after your baby has been in the NICU for 30 days, you get a free parking pass. I guess they figure after you've given them almost $200 in parking fees, they'll cut you a break. Luckily we encountered a VERY NICE man working in the parking office who helped us, with a smile, although it was 5:05 according to his clock. :)

Lawson was sleeping, as usual, but we were able to have a lengthy conversation with Dr. Goldberg at his bedside. He reviewed all of the things he knew about the case and updated us on the events of the day. I expressed my frustration that nothing has worked so far and he agreed. Then he went on to discuss the most recent plan. He mentioned starting the steroids again, which up to this point, had not been part of the plan. We had been told earlier that extended use of that particular steroid had a risk of causing permanent brain damage. Brian and I were leary of it's use previously and are not any more eager to use it now. I know Dr. Goldberg could read that on my face, because he began to explain why they want to use it. I explained to him our concern and we decided to wait until we can all meet to debate the pros and cons before we proceed.

I'm not even sure exactly what Dr. Goldberg said that set me off, but I began crying and couldn't stop as we were talking. I could tell he felt bad for making me cry, but I think he didn't really cause it- it was just time for me to cry. Just about that time another mom came into the room to visit with her baby. The nurse picked the baby up and handed him and a bottle of formula to his mother so she could feed him. The dad was taking pictures and everyone was happy. I was overcome with jealousy. How dare they 'show off' like that in front of me! Her baby has been there 1 day, she's not even pumping, and she gets to hold her baby! I know I shouldn't feel that way, but I just couldn't help it! A month of this has definitely taken a toll on me! I'm so glad my mom was there to hug me while I cried on her shoulder. I'm hopeful for a better day tomorrow.

Sunday, April 12, 2009

Happy Easter!

There's not really a lot of news to share about Lawson. Since the last blog post, we have continued the waiting game. Dr. Tanaka told us that we'll be able to tell if the plan is working if the x-rays show improvement. Unfortunately, the x-rays have not shown improvement, but they have not gotten worse. Since the original plan was to look at things again on Monday, that's where we are right now.

We had an awesome week with my nephew, Christian. He was on Spring Break from school, so he spent the week with us after they came down to visit last weekend. It really was great to have an energetic and helpful eleven-year-old around to run up and down our very steep staircase for errands and entertain Lacey! My sister and her husband came back down from Alexandria this weekend to pick him up. We knew they would have to leave early Sunday, so we called the Easter Bunny and asked him to bring their Easter baskets on Saturday. Luckily he agreed. ;) The kids had a great time hunting for eggs and playing with the things in their baskets on Saturday and Brian and I went to the hospital late, so we could enjoy the day with them.

We all got up early this morning and went to Bob Evans for breakfast before my sister and her family left. Then Brian, my mom, Lacey, and I went to the hospital. The nurses had made Lawson the cutest diaper for his memory book. It had a little cottonball glued on to the back so it looked like a bunny tail! :) Sooooo cute! And Lacey was such a good girl today! On the days that we all go to the hospital the poor thing doesn't get a nap. Plus she still can't go back to visit with Lawson, so we all take turns sitting with her in the waiting room. She loves to draw pictures for Lawson while we wait. The nurses have created an 'Art by Lacey' wall next to Lawson's bed. It's just precious!

So we'll wait until tomorrow for more news . . .

Thursday, April 9, 2009


Seriously!? As in Grey's Anatomy, "Seriously, you've got to be kidding me!" I think I mentioned before that the doctors said they've seen all the problems that Lawson has displayed, just not in the same child. Today we can add another unusual problem to the list.

Dr. Tanaka ordered a bronchoscopy, since his idea for the nitrogen washout (the combination of 100% oxygen and steroids) didn't work. A bronchoscopy involves running a tiny camera on a long tube down the breathing tube to look at the lungs and trachea. The procedure was done this afternoon just before I left for lunch. Apparently, they had to rent the machine, since they don't keep one around. I was in the room when they were getting everything set up. The machine was HUGE, like the size of a refridgerator! There were two screens and a bunch of knobs and dials. I met the Pulmonologist and his nurse and got a few questions answered while they were getting ready. I left before they began.

This afternoon, we met with the Pulmonologist, the Nurse Practioner, and Dr. Tanaka to discuss the results. So, to add to the laundry list of problems Lawson has either had since birth or has developed since then, we now have tracheomalacia. This is a congenital disorder of the trachea; instead of being rigid and round, it is soft and pliable and collapses during respiration. It is a completely seperate problem from all of the others so far, but helps to explain some of them. When he breathes in, the trachea opens fully to allow plenty of air in, but when he exhales it collapses and does not allow all of the air that he breathed in to escape. Although this is not the cause of the blebs, it explains why the ventilator settings have not been helping to treat them. Dr. Tanaka pointed out that they were treating the blebs under the assumption that the trachea was healthy, since there was no reason to believe otherwise. Thanks to the bronchoscopy, we now know otherwise and are moving forward with that knowledge in mind. The first part of the plan is to raise the PEEP pressure (positive end-expiratory pressure) on the jet ventilator. I'm not exactly sure what that means, but it was explained to us that it will 'hold the trachea open' by applying more pressure. They are planning to continue this over the weekend and re-evaluate again on Monday.

Here's my sweet boy one day away from one month old . . .

Wednesday, April 8, 2009

Another video

Here's the latest video of Lawson awake. He's on the jet ventilator, so that's the loud rhythmic noise in the background. You can barely hear it, but he's making a soft grunting sound too. :)

Tuesday, April 7, 2009

Hurry up and wait

When I got to the hospital today, he was wide awake and alert! I LOVE those days! It feels like he's looking right at me! :) His nurse said he'd been a little fussy earlier and so she'd given him some morphine, which means our little party didn't last long before he was fast asleep. Even when he's sleeping, I just enjoy sitting by his bed and watching him sleep. I did get a chance to take a quick video before he fell asleep. I'll try to post it tomorrow.

Monday came and went, the surgeons came and went, the plan came and went. The surgeons seem to think that Lawson is slowly making just enough progress that surgery is too aggressive at this point. So the new plan is to wait. :(

According to the NP, Lawson continues to defy all logic! She admitted that they've seen all the 'problems' that he has exhibited, just not all in the same child! Other doctors have said they've pulled out every trick they have in dealing with sick babies! They are currently trying to wean him off the jet ventilator and onto the conventional ventilator, which is a step in the right direction. His chest tube has been removed and there does not seem to be any more air accumulating in the pleural area. He does still have the extensive blebs filling the left lung, but we're just waiting to see what will happen with them. When I was leaving this evening, his CO2 levels were up a bit. They have had to stop his feeds (breastmilk), since his digestive system does not seem to be tolerating it because of the morphine. They did a stomach x-ray and found a large section of the intestine that was filled with air. They've called for another one to make sure the air is actually IN the intestine and not in any other abdominal area, which could be dangerous. Hopefully it's just a little gas in the intestines that can be dealt with quickly.

Saturday, April 4, 2009

Shift Change

Every 12 hours Lawson gets a new nurse/team of nurses. Sometimes they're nurses we've seen before, sometimes they're not, sometimes there's just one, and sometimes two (one training and the other learning). We've liked most of them and really like a few of them. And since Duke is a teaching hospital, he gets new doctors every two weeks or so. His 'turn' with Dr. Goldstein has finished and now his doctor is Dr. Tanaka. We have really liked both of them. One of the things I really like about Dr. Tanaka is that he always seems to have a plan. I like a plan! He wasn't at the hospital today, but he told the nurses to tell us that the latest plan is for the surgeons to get on the case on Monday.

Lawson pretty much stayed the same today. His vitals were steady and they came down a little on the ventilator settings. The chest tube went in without any trouble yesterday and has been effective at removing the air while the hole in the lung heals. The latest chest x-rays haven't shown a lot of changes in the blebs, so they've stopped the 100% oxygen. As I mentioned before, they're planning to have the surgeons take a look at Lawson's left lung on Monday. Dr. Tanaka feels that since the previous plan didn't help, we need to get more aggressive. One exciting thing to note is that they have begun feeding him my breastmilk through the gavage tube in his nose down to his stomach. It is only a very tiny amount of milk right now, but they're increasing it little by little. We're hoping that this will help him put on a little weight, since he's down to 5 pounds now.

Friday, April 3, 2009

Here we go again

Lawson's doctor called us today to say that one of the blebs had burst and caused a pneumothorax, air in the space outside the lung in the pleural space. They just happened to see it on a routine chest x-ray. Normally this would be a very serious condition that causes the lung to collapse. Since Lawson's left lung is so filled with blebs, (apparently there are hundreds) the lung was inflated by them and did not collapse. So although they're not supposed to be there, they helped him make it through the pneumothorax without having a collapsed lung. His team of doctors was able to go in with a needle and release the trapped air. Unfortunately, it reaccumulated in about 5 minutes. So they have decided to reinstall the left chest tube. This time it will be removing the trapped air instead of fluid. They are not sure if the air that is reaccumulating is air that is being pushed in through the breathing tube or if the other blebs are also bursting. Either way, the chest tube is necessary to deal with the excess air. Dr. Tanaka also pointed out that he was worried that there might be very little 'healthy' lung tissue in the left lung, due to all the blebs. We will have to wait until the blebs have been dealt with before we'll know the answer to that question. They are expecting to have more answers by early next week.

Thursday, April 2, 2009

Finally a plan

I got up this morning and planned to drop Lacey off at daycare and then run a few errands that I've been meaning to handle. As I was halfway across town, I realized I'd left my cell phone at home. By the time I got home, it was 12:15. My mom asked if Brian had gotten in touch with me yet. Lawson's doctors wanted us to meet them at the hospital at 12:30 to discuss the 'plan'. Of course, Brian attended the meeting without me since I hadn't had my phone to get the message about the meeting. The CT scan showed that the 'mass' in Lawson's lung is NOT a CCAM tumor. It seems to be an area of blebs (similar to blisters but filled with air instead of fluid). The left lung is so expaned by these blebs that it is compressing the right lung and the heart. Lawson's team of doctors have decided to try using a combination of steroids and 100% oxygen to help push out the bad air for 24 - 48 hours. We will know by tomorrow evening whether or not the plan is working.

Wednesday, April 1, 2009

Roller Coaster

When I arrived at the hospital, they informed me that Lawson was about to go down for his CT scan. I was surprised, since I didn't know he was even going to have a CT scan. Once they got me calmed down and convinced me that it was a good thing (He was stable enough for the test.) I noticed there was a razor laying near his bed. When I inquired as to it's presence, they told me they had to shave a patch of hair for his IV!! I lifted the blanket they had over his head to block the light and realized there was an IV in his head!!! Of course, it took several more minutes to explain and calm me down from that shock. In order to go through a CT scan, the patient must have an IV and they couldn’t find a good vein in his hand or foot so they put it in his head. OK, fair enough. So they asked if I wanted to escort them downstairs to radiology. Lawson's doctor and I chatted as we walked down and I warmed up to the idea of the CT scan, just so we could start to get answers.

The doctor and I waited out in the waiting room while Lawson and his team were in the radiology room. After a while, the doctor decided to pop into the control room to see if he could see anything. He was gone for a while and when he returned I quickly asked if he knew anything. “The short answer is no,” was his reply. What had actually happened, was that radiology said the IV had to be in the hand; the head IV was unacceptable. The radiologist tried to put it into his hand, as did his doctor, to no avail. So basically, Lawson had his head shaved, an IV put into his head, was unhooked from his machines, moved through the hospital, and generally disturbed for no reason! Within minutes of returning to his room they found a doctor who could put the IV into his hand. Grrrr. . . The plan is to have the CT tomorrow.