Two weeks of no chest tubes!

Cameron has gone two weeks without chest tubes and we have been to several check ups without any changes to the X-ray results. There is still the suspicious lining on his right side but since it hasn’t grown in two weeks there is no action to take now. If it were just pleural thickening there is nothing to be done, but a CT scan would be required to confirm this theory which we still would prefer not to do on Cameron due to the extra radiation of the test. We are now scheduling an X-ray once a week instead of sporadically which is good for our sleep schedule as well as my car mileage, and I will continue to watch for any signs he is in distress or if he starts breathing faster then usual.

We had another echo scheduled today with his Pediatric Cardiologist and they had to sedate him so they could get full pictures of his heart. Cam was monitored on a pulse ox machine while sedated because sedation can be dangerous for Hlhs babies. The results were his heart looked to be in good shape and the right side of his chest still showed a minimum amount of fluid same as before in the pleural space. Also, Cam’s tricuspid valve in his heart has a normal leakage of mild to moderate which will need to be monitored and controlled with the Enalapril medication.

Cameron was around 16lbs and 8oz with his check up today. They suggested to add a powder substance called polycose to his formula to try and help Cameron grow. This type of powder does not add the bad fat which we are trying to stay away from due to the pleural effusions instead it just adds calories to his diet. We are on a limited 20 calorie low fat tolerex formula as well as a daily fluid total to keep the bad fats at a minimum in his diet to try to control the pleural effusions. The polycose was referred to as a sugar powder however it’s unflavored so I’m not sure Cam’s formula will taste any better but one can hope for his sake!

One week of no chest tubes!

It has been one week since Cameron had the left chest tube removed, we had a check up Saturday and Monday. Saturday was a regular chest X-ray and again they noticed the right side showed something suspicious so we did an ultrasound too but no significant amount of fluid showed up there. Monday we went back for another chest X-ray and the Doctor wanted to do a CT scan. The CT scan would confirm what the X-ray was showing but we really don’t like this option if it’s not critical to do now. The CT scan would push much more radiation on Cam then we would care for and he would have to be sedated for the procedure because you have to be completely still for the test. Just fyi Heart babies should never be sedated outside of the hospital setting because they need to be closely monitored.

Today we went for a regular chest X-ray and they decided to cancel the CT scan for now, but we are to go back once a week for an X-ray until they are sure it’s all clear. It was suggested they are seeing pleural thickening in the X-ray which wouldn’t show as fluid on the ultrasounds. However, it could just be a minimum amount of fluid and will need to be closely monitored so it doesn’t become threatening to him. If Cam were in distress there would be visible signs such as an increase in his breathing rate.

On a fun note we got to have a wonderful play date on this beautiful day with an awesome heart warrior Dylan.

One year ago…

Wednesday, February 16th 2011 Nick and I had the worst day ever… we found out about Cameron’s Congenital Heart Defect-Hypoplastic Left Heart Syndrome (CHD-HLHS). My regular OB Doctor in Covington sent me to an ultrasound Specialist in Baton Rouge around the 20 week pregnancy mark with the reason being she wanted to get a clear look at the four chambers of the baby’s heart. I was oblivious and completely in denial that anything could be wrong so no I didn’t suspect the slightest issue with the baby from the appointment set. Also, I was a positive and happy mother to be with our honeymoon baby and I was blind sided by this visit. I’m going to claim this day as our CHD Awareness Anniversary, we celebrated with a proud stroll down the street.

Nick drove thankfully and we went in for the ultrasound together, I only remember right up to the very moment the Doctor told us the news. The Doctor (who I will not name here but let’s just say he was an older man) came into the room looked over my baby with the ultrasound wand on my belly then answered his cell phone. The Doctor said ‘Is this call an emergency and can it wait? I’m with a family about to tell them their baby has a heart defect.’ That’s all I heard as I stared at the ultrasound screen showing what I now understand to be the Congenital Heart Defect-Hypoplastic Left Heart Syndrome (CHD-HLHS). It was a horrific and the most stressful moment to comprehend, the Doctor said other things to explain the entire HLHS condition and options but I couldn’t listen anymore. He left us and the tears didn’t stop, we were moved to his office and given more private time to grieve at the terrible news that our unborn child would have a life threatening heart defect at birth requiring immediate surgery followed by two other open heart surgeries later in life. I know I was hysterical most of the day and at random moments then on using 3 boxes of tissue at the office and towels at home. We started the Internet search when we got home which they tell you not to do but really who could wait that long to talk with another Specialist and allow for privacy to react.

Anyway the endless ultrasounds for the now pregnant and very upset HLHS Mommy began twice and sometimes three times a week, we went to the appointments to see the heart defect over and over and over and over again. They needed to track the condition so they could prepare for the surgery but all I could do was hope and pray at each visit they would tell me it wasn’t true. One Doctor was a regular OB and the other was a High Risk Consultant which we changed the birthing location to Touro New Orleans to be as close as possible to Children’s Hospital for the baby’s immediate transport. The High Risk Consultant was tracking the baby very closely with intense ultrasounds and towards the beginning of June sent me to the hospital from her office to be admitted immediately for dehydration. The first time she sent me to the hospital after the ultrasound happened to be the one time I tried to go by myself after work (big emotional mistake which I had to call someone to drive me from the office in Metairie to Touro). I was put on iv fluids because my water level was too low for the baby which could cause other complications for the baby or even early birth. I was just a wreck thinking it was too early and our baby already had a heart defect so being premature too would be adding to the already extremely high risk pregnancy. Needless to say it was a difficult time anticipating when since the original due date was almost a month away at 7/7/11. Also, we had the big Baby Mogg fundraisers in June so the stress and heat could not have been higher even with all the phenomenal help from family and friends.

There are a number of reasons we chose Children’s Hospital New Orleans (Chnola) and we are simply glad with our decision as the Doctors and staff have been amazing. Also, I favored we stay close to home as I really don’t think I could have handled being so far away from all the most supportive family and friends. We appreciate all of the best wishes and prayers for our family it really made a difference to receive all of the kind and inspirational comments on the website Thank You! As a side note the website is Baby Mogg because we didn’t want to know the gender and wanted it to be a surprise. I found it hard to know so early on that there was a problem with the pregnancy but it was better that we were able to prepare emotionally, medically with the hospital and Doctors of choice and financially with the incredible fundraisers. Well the rest is in the website for the most part thank you for following our little heart warrior Cameron and our HLHS journey too from one year ago yesterday…

Tubeless yet again!

Cameron had his left chest tube removed yesterday and he is completely tubeless yet again! We are so excited to have him home without any tubes in him and I’m sure he is much more comfortable too. We have a check up on Saturday in the early morning hopefully before parade traffic chaos for a chest X-ray and ultrasound to look for any fluid build up since they took the last chest tube out. I was very nervous about them pulling out the left chest tube because we were still getting less than 5cc a day from it. The Doctor said the body should be able to handle that amount but I’m still nervous as we have been here before. Hopefully we will have a smooth check up and leave all this chest tube drama behind us for good this time.

Monday was a very scary day for Mommy because Cam turned a awful shade of blue. We had a late night playing (Cam’s fun idea of course is playing until midnight) and early morning driving to the hospital. Next we got a chest X-ray done twice because he was too wiggly crying over being held down on the hard boards which is the usual. Next we did an ultrasound on his sides which he cried for again just because it’s agitating to him to put pressure on his sides with the probe which is usual. Cam doesn’t eat much during all this activity with the added distraction of visiting his nurse friends and by now he is hungry as well as tired beyond help. Next we were getting his dressing changed on the left side with the tube still in it which makes Cam cry about being held down again. Also, it hurts to have the tape ripped off because he has delicate skin. The Doctor didn’t see a suture and assumed it came off somewhere when the dressing was changed so a new suture would be needed now. The suture is sewed into his skin rapped around the tube and sewed again into the skin, I’m assuming from what I see anyway because it is usually done during surgery when he is sedated back in the or. They had to give Cam a local shot to numb the area around the chest tube at the site which sent Cam off the edge. He was already tired and had been screaming about being held down over the X-ray, ultrasound, dressing change and now this shot well he let us know he was upset. I quickly alerted them Cam was turning blue and grabbed him up from the bed to comfort him the best I could so I set off rocking him. I haven’t seen him that mad before and I’ve seen them do several procedures and other things over all this time with the chest tubes from X-rays to ultrasounds to dressing changes, I was really concerned over the whole blue ordeal. It took some dancing around to calm him down and the Doctor finished dressing the chest tube while I held him in my arms. They didn’t do the suture instead put layers of surgical tape to hold it in place for the time being as we were both upset. When the tube was pulled out today come to find out the suture was still there and either his skin had swollen and covered it up or the tube got pushed further in somewhere (baby movement, X-ray, ultrasound, who knows right). I did ask where it could have gone when it was first noticed because I always watch them change the dressing and I didn’t see it come off.

Well that just added to the excitement over all this chest tube drama. It was suggested that Cam may turn this blue coloring when he gets that upset throughout his life maybe just doing regular kid stuff like running and playing. I’m not liking that suggestion very much as a Mommy my instinct says the blue coloring means trouble for him and whatever was causing it needs to hold off until he calms down. Anyway it was something new to me and frightening to see him so upset and I wanted to include it in my post. Picture posts are of this past weekend with Cam’s new toy, which was kindly donated, it is just adorable and he absolutely loves being on this little bike all day and night long… toot toot beep beep!

Just another visit…

Cameron had another visit to the Doctors for his regular chest X-ray both Wednesday and Friday. Wednesday we had a scare where they sent us to get an ultrasound because the right side looked hazy on the chest X-ray, but it showed up clear of fluids on both sides. It must have been that he was too wiggly when he was kicking and screaming over the X-ray. Cam just doesn’t like being held down especially on those hard X-ray boards poor man! We are home for another terrific weekend I’m hoping to get some much needed rest and clean up something around here because it feels like the house work just stares at me. I really do spend all my time on preparing his daily feeds and meds when he naps and spending plenty of energy on the sweet little man because I feel he deserves it. Anyway our next appointment is Monday and I’m not sure when to expect them to pull out the last chest tube on his left side. I had mentioned earlier that I really want to wait for it to be completely dry and to the point literally nothing is coming out like not a single cc. It’s putting out less then 5cc a day now only .5 or 1cc at a time. Again I am so grateful to be in the comfort of our own home instead of staying at the hospital all this time with these never ending chest tubes I just can’t express the joy enough! We will post more if anything else comes up with next weeks appointments thanks thanks thanks for the continued prayers and support for our little man he is just amazing to us and we are so very proud of his strength.

Weekend Park Pics

Super Sunday

We had Cam’s check up X-ray today and things looked ok enough to send us home with another appointment Wednesday. The left chest tube still remains but it has a minimum drainage amount of 10cc or less a day. We really would like to see it stop draining completely just like the right side because we have seen it build up fast after pulling them both last time. Anyway one chest tube is much easier to monitor and handle with extreme care, two was just difficult with him being so active, and Mommy constantly overly concerned its just tiring to worry every minute you hold him. You are in constant awareness of where the tubes are situated and when is the next time to aspirate. I’m sure Cam didn’t care for the tubes in each side either but they will all be behind us soon enough and this sweet little man can fully enjoy the home life for a few years (with regular Cardiologist and Pediatrician appointments). We started putting him in the toy car walkers and he loves getting around in his hot wheels lol enjoy the pictures more fun ones to come soon… I’m sure with this ham. We are more than proud of Cameron for taking all of this chest tube drama and still able to laugh it off, play and just be a happy baby… what a warrior!

One out one to go…

Cameron had a check up on Wednesday and today which called for the regular chest X-ray but with these last two appointments they also wanted an ultrasound to really look closely for fluid around the lungs. I had to recruit our Aunt Linda Hannan for help because Cam can be a lot to handle with the ultrasound and traveling around the hospital to sign in and for these tests. Cam really doesn’t like the pressure from the probe put on his sides when they check his chest for fluids during the ultrasound and we try to use the glow globe to distract him. The good news is the right chest tube was removed this morning so one out and one to go…

We have a follow up appointment on Sunday and the Doctor said they wanted to check his right side to ensure no fluid accumulated and may consider pulling the left side. However, I’m still getting some fluid when I aspirate (drawing fluid from the chest tube by syringe) the left chest tube, where as I was getting none from the right when they decided to take that one out today. I would feel more comfortable taking the left one out when it’s completely dry so it may be a little bit longer until this issue is over, because we don’t want a fourth surgery with these chest tubes. Cam has had three chest tubes inserted in his right side so far and two in the left after we have left from his Glenn surgery back in November.

We all wore red today to show our support for heart awareness month and would like to thank anyone else who did the same we appreciate the consideration. We will post more on Sunday or Monday if things change for us. Have a wonderful weekend because we certainly will being at home with only one cheat tube!!!

February is Heart Awareness Month

There is a big request for anyone with ties to the heart community to wear anything red on Friday, February 3rd. Wear a red shirt, red earrings, red socks, red whatever to show your support. We are definitely participating for Cam and all of the other magnificent families and warriors we have been blessed to meet as we have been trailing through our own heart journey. Thanks!!!