One Month

Forgive me if I post a lot of video and pictures of Carter smiling. First, it's a HUGE accomplishment for him. Second, we only have one month before that wide smile will be gone forever.

The kids had a blast this weekend. Michael took them to see Ice Age 3 on Saturday and they watched fireworks that night. Today we took the whole family to Kohl's to get Mikey and Jovie new backpacks for school and when we got home they played on their waterslide and then Grandma, Grandpa, and TJ's family came over for a BBQ. It was a busy weekend, but a lot of fun!

One Fine Day

It's days like these that make all of those bad days worth it. Carter has decided to show some of his personality and is finally smiling. We weren't completely sure that it was really a smile until his Occupational Therapist asked me today when Carter had started to smile. He thought that it was very obvious and couldn't believe that I had doubted it. I've been trying to catch the elusive "shrek" smile on camera, but whenever I pull the camera out Carter gets very serious. Mike (the occupational therapist) was impressed with how well Carter is moving around and feeding from the bottle. Basically he told us to keep on keepin' on with what we're doing. I did get a couple of cute pics of Carter today, and the top one is by far my new favorite. I snuck off his Oxygen for another quick pic. Hopefully I can get a smiling one before the cleft is gone.

The Official Update

I know that I haven't been giving many details about what's been going on with Carter, so I wanted to give one now that he's home and napping comfortably in his play place. As I wrote before, Carter had the cath done on his heart, but had a hard time coming off of the ventilator. What had happened is that during the procedure, the anesthesiologist was reading Carter's CO2 reading off of the vent and it was at 57. A normal person's CO2 is typically high at 45, but Carter's has always run high so they felt that was a pretty good baseline. The problem was that the monitor was wrong because when they took the actual blood gas it came back as 113 (which is REALLY bad). They adjusted the vent accordingly and got it back down to the 50's. We think that is what contributed to Carter's breathing struggles after he got off the vent. Either way, a Pulmonologist was called in to see Carter. He pulled up his history and informed us that Carter has something called Hypoventilation which means that he's not breathing deep enough which is causing him to retain CO2. This is the opposite of Hyperventilation when you have to breathe into a bag to raise your CO2. The doc told us that we had three choices.... CPAP, BiPap, or a Trach (where they put a tube in his throat and hook it up to a vent to help him breathe correctly...this would mean that Carter wouldn't be able to cry or talk let alone function in many ways). Then he continued on to tell us that the CPAP and BiPap were probably not options because of the cleft, so he started pushing for the trach. After thinking about it for like two seconds, we decided that this was NOT a route we were willing to take. Even when Carter was on a ventilator, his CO2 was still high so we don't think that it would help him all that much. The Hypoventilation may be the ultimate demise of Carter, but he's not going to live his entire life hooked up to a machine. We informed the docs that we weren't willing to do this, and even though they pushed us a couple of more times, they finally got the clue that it just wasn't happening. Once the doc took into account the fact that the ventilator didn't seem to help it, he also backed off a little more. We told them that we wanted to bring our little boy home and let him heal from this whole traumatic week, and although they didn't like our plan last night, they seemed to embrace it this morning. The plan is to keep Carter at home under a watchful eye to be sure that he isn't under any respiratory distress. He will have a follow-up appt with his ENT very soon to see if they think that removing his Adenoids, or stitching his tongue down will help with his airway issues. Carter will have his lip/prosthetic palate surgery on August 26th (along with anything the ENT thinks he can do), and afterward he will have another sleep study to see how he is doing with his breathing. If he's still struggling, they will fit him for a CPAP/BiPap mask.

On another note, there was strange development over this week. Remember that Carter has facial paralysis on one side of his face. Well, soon after he started steroids for his lungs, he started to have a lot of movement on that side. We aren't sure what will come of it, but it was still exciting!

One More Night

Carter is going to spend one more night in the hospital. As long as everything goes OK, we should be able to bring him home in the morning. After this is all over, I'll update with all of the medical stuff that's been going on with him. I'm too emotionally drained and just plain tired to put it all into words today.

Sleep Study Tonight

Please pray :) Tonight's sleep study will determine how quickly Carter will be able to come back home. Breathe deep little buddy!

Sleep Study

Well, he's out of the PICU YEAH!! He's going to have to spend a couple of more days in the infant unit because he needs to do a sleep study tomorrow. Hopefully it will go well!

Keepin' On

Currently Carter is kicking butt in the PICU. He managed to get weaned off of the high-flow today and is on .75 liters of Oxygen on a regular canula. Just to give you perspective, he is typically on .25-.50 when he is at home. His foot is much better and seems to have healed itself overnight. The docs are planning to move him out of the ICU tomorrow as long as he has a good night. He will spend the rest of his hospital stay in the infant unit. Carter has to finish his steroids, so he'll be there until at least Thursday night. As Daddy says, "Keep on, Keepin' On little guy!"

Cold Feet

Carter had another rough night, but improved during the day. He has currently been weaned down from 8 liters of high flow oxygen to 4 liters. The plan is to have him on a regular nasal canula by morning, but he seems to struggle at night so we can only hope that he doesn\'t have a bad one tonight. If he can get to a regular canula he can be transferred out of the ICU and into the infant unit. A new problem has come up with his foot. We noticed earlier today that it was starting to turn a purple color and was much colder than his other foot. We changed his position, and it seemed to help but it kept turning that color after awhile. They now have it elevated (which seems to help it more) and are hoping that a few blood vessels were traumatized by the heart tests and just need some time to heal. Only time will tell.

Sunday

Carter had a better day today. His main problem has been that his throat is really swollen from the ventilator tube which is giving him trouble getting air into his lungs. They've been giving him inhalant steroids which really seem to be helping. He'll be on those until the other drugs kick in. We went up there early, and spent a lot of snuggle time with him. I think that the poor little guy really does feel like we've abandoned him, but unfortunately we can't stay with him all of the time with our two other children at home. The docs started to wean him off of the high flow oxygen again, and are working hard at getting him out of the ICU and into the infant unit. We'll keep praying that it happens soon.

Breathing

Carter is struggling with his breathing. I HATE that we are back here again. He's currently on the high flow Oxygen, but it is possible that he'll have to move to the CPAP machine if he doesn't start to improve. Michael and I are beyond frustrated right now because our little boy was doing just fine at home and making huge gains every day, and now it feels like we're back where we started. The thing is that we were told that he really needed this Cath lab test, and when we asked if we could do another regular echocardiogram just to see if this last one got a bad reading, the doc told us that it wasn't necessary. Well, guess what?!? This test just confirmed what all of the older echos had shown... that the hypertension was just a trace amount, so all of this was for NOTHING. It was a waste of time, and put our baby back in the ICU. I would probably feel a lot different if we had found something that could potentially help Carter in the future, but no...instead it hurt him. I always try to remain positive in the light of the situation, but I'm finding it hard to right now. I'm scared to death that this "one night in the hospital" is going to turn into 1 week, then 1 month and we'll lose all of the progress that Carter has made on his development. I'm really sorry for the vent today... maybe I'll feel a little more positive tomorrow.

Update From The Cath Lab

Well, I bring good news and bad news. First the good news, Carter's catheter tests went really well. The doctor tried to insert the catheter into Carter's right leg, but was having a hard time, so they had to do it through the left leg. By doing that we found out another interesting tidbit about our little boy...he is missing his femoral artery in his right leg. I guess he left that in the womb with his ear, palate, piece of his lip, and gall bladder lol! The doc says that he has a bunch of little branches that make up for the missing piece so there's nothing to worry about. The Cath showed that Carter's Hypertension is a very, very small amount. They don't think that it's anything to worry about, although they will continue to watch it on the echocardiograms that he needs for the mass in his heart. This doesn't answer the question as to why Carter still needs Oxygen, so the doctor believes that we should see a pulmonary (lung) doctor. The docs have always thought that Carter's heart was the reason for his O2 needs, but they're finding that's not necessarily the case. It is possible that his aorta is constricting his airway in one place, but they want to rule out any other possibilities before tackling that one.

Now the not so good news. Carter was scheduled to spend the night at the hospital just in case he needed it. Well, he needed it. Not only did that little stinker decide that he wanted to stay in the hospital, he decided that he wanted to stay in the Pediatric ICU. I guess he felt like he wasn't getting enough attention at home. When they first put him under anesthesia and on the ventilator, his CO2 levels shot sky high but they later evened out. They were at 113 where they are typically in the high 50's or 60's and even those levels always get the docs worried. The docs felt like it was the right thing to do to send him to the ICU. He's off the vent now, but on a high-flow O2 mask which is a step down from what he was on at home. He will definitely be spending the night there tonight, and will hopefully come home tomorrow however it's very likely that he'll be there until at least Sunday. We've played this game before though, and aren't going to get our hopes up. They have given him a blood transfusion since they had to take a lot of it during his test. Hopefully our little guy will feel better soon. Thank you for your prayers, but as always we think that Carter could use a few more.

Friday

We have to be at the hospital at 7:00 am tomorrow morning to check in for Carter's tests. We've had a lot of questions as to what these tests entail, so here is a basic explanation (from the world of Wiki lol!). A cath lab is when a catheter is inserted into a large artery, and various wires and devices can be inserted through the body via the catheter which is inside the artery. In Carter's case they will be doing this in his heart to measure the pressure each chamber is giving when it pumps blood. The doctor doing this is actually a specialist in Carter's heart condition (pulmonary hypertension), so hopefully he can come up with a really good plan to treat it. Since Carter has that small mass in his heart, this procedure is a little risky, but we're confident that he's in good hands. Hopefully since he's one of the first ones scheduled for tomorrow, he won't have to spend the night.

I got some one-on-one time with Mikey today. He's getting big so fast, and talked my ear off. Unfortunately it was to take him to the doctor. The poor kid just barely started to complain that his ears were hurting, so I took him in to get them checked. Yep, he has a double ear infection. I'm really glad that we took him in when we did because he's starting to really act sick tonight. The meds should kick in soon so he'll be feeling better.

The Fourth and Friday

We had a wonderful holiday. The kids played in the pool all.day.long, and Michael lit off fireworks that night. We let Carter come outside for awhile to enjoy them, and he really did. He didn't mind most of the noises, but there were a few that got to him. It was really cool to have our whole family together for a holiday.

The cardiologist called today, and it looks like Carter's heart tests are going to be on Friday. Wish us luck! I'll update when I can.

Cardiologist

Carter had his first Cardiology appointment today. The good news is that the mass in his heart has stayed the same size. The Dr. still thinks that it will eventually reabsorb into the tissue in his heart. The bad news is that the echo showed that Carter's Pulmonary Hypertension is getting a little worse. He had a trace amount of it when we left the hospital, and now has enough to get the doc concerned. The doc wants Carter to come back very soon to get another echocardiogram under anesthesia and on a ventilator... if it still shows the Hypertension then they want to send Carter to the cath lab to run some more tests to find out what they can do to help his heart. This explains why Carter's not making much progress on his weaning off of the oxygen and could also explain why he's had trouble with feeding. As much as I hate the idea of him going back to the hospital, being put under anesthesia, and getting on a ventilator it would be really nice if they could find a medication that could POSSIBLY help Carter with those issues. I'll find out on Friday when this will all happen, but it's sounding like next week. He will probably have to spend the night in the hospital :(