Archive | November, 2011

Boarder Status

30 Nov

We are now on a boarder status in the CICU (Cardiac Intensive Care Unit) which means we are not receiving critical care and they only require vitals every 4 hours. The chest tube has steadily slowed down in drainage amount to about 13ml daily but we are still unsure what the full plan is for when we will be going home. There was an issue with us going home with the chest tube and the injections. The medication we need for the injections does not come in the low dose they have here at children’s hospital so I am pretty sure we may go home without the tube or at least we hope!

Cameron’s formula has been increased from 15 to 20 calories. The administrative nurse for this unit was wonderful enough to find us an amazing program for us to apply to so that we can maybe get most of this expensive zero fat formula ($9 packets) given to us since it is medically required for him. The insurance we have will not cover it but that’s ok there are other ways we can get help here and we just need to know where and apply.

Anyway besides the injections at twice a day and the chest tube stuck in his side Cameron has been doing good. The nurses say the older patients tell them the chest tube feels uncomfortable but Cam is such a tough cookie he still plays and smiles like his sweet self. We are truly fortunate to have such a happy baby especially with all of the horribly traumatic medical things he has had to endure so early in life. Enjoy the video of Cam having a good old time with his nurses and can I tell you his face lights up every time these wonderful ladies visit him (unless it’s s-h-o-t or bath time). I sometimes think Daddy has been training Cam on giving the ladies sweet faces, but I can’t prove it – yet lol!

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Plans

29 Nov

Well well well I’m not sure where to start here as there was so much going on yesterday. There was a brief visit by the Doctor in the morning suggesting we could go home tomorrow which was more than exciting except for the part where it was stated Cam would keep the chest tube in him. I would have to manually drain it with a syringe every 4 hours, ok not a problem they trained me. Another requirement would be a daily appointment in the cicu at the hospital to get his shots to suppress the fluids along with an xray to check the chest tube positioning and the actual fluids in his chest. We don’t want to remove the chest tube and more come back causing more work (surgery) and stress on Cam. They cannot define a timeframe for when the fluids will stop because it’s up to the patients body. One day could be better than the next and/or it could stop and start again depending on activities. Cameron will remain on the zero fat formula for a minimum 4-6 weeks then slowly introduced to low fat formula then a few weeks and start regular formula with regular check ups. I can say I now know his signs of trouble by his behavior and breathing rate for this issue with the pleural effusion.

Currently the shots are given twice a day one in each leg at .5 at 9am then 9pm and I heard they can only give and infant .5 in a muscle. If we had to come once a day from home they would maybe tag both legs in one sitting. These shots made a huge difference in the amount of fluid drained with each passing day. I’m not sure if he will remain on them or how long they should continue even after the chest tube is out but we will find out soon.

Cameron is a busy body even stuck in this crib as he likes to sit up like a big boy and even tries to stand up by arching his back peaking his chest and pushing down with his feet like a crab stance. What a character trying to fly before he can roll over or crawl for that matter. Also, he was a little bit spoiled with mommy holding him and sometimes he really needs the cuddle time poor baby! (Okay so Mommy needs the cuddle time too!)

Now another option is to stay on another floor here until it clears up and if it clears up then have the chest tube removed; but again there’s no set timeframe for when the drainage will stop. We noticed in the daily nurses postings the drainage had decreased with the shots steadily but it’s still a waiting game. They really need to see no drainage and make sure it does not reappear. If it does another chest tube would be dreadful for his little body to encounter again.

Going home would be nice and avoiding another chest tube is a great thing but making the daily trips in this weather with a delicate chest tube is somewhat uncomfortable for me and we may end up staying here. I think it would be the best for him especially if it stops in a few days; however if a few days turns into weeks we may need to reconsider going home with the chest tube. If that’s the case I may stay in Metairie with family so we don’t have to travel with him from Covington. Also, if in the 4-6 weeks after we introduce the low fat formula the fluid starts up again it would be trouble for his health all around again.

Crazy day of plans and options to say the least again please keep us in your thoughts and prayers. Changes will most likely occur by the end of this week.

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Still in CICU… Goodness!

27 Nov

Well not too much going on here… Cameron is now getting an injection of sandostatin twice a day to help stop the fluid build up in his chest. He is a tough man and these shots are over with after a hole in his leg and a brief cry, poor man but he’s been through worse! Also, they took the iv out his leg and he gets antibiotics by month now called omnicef. Only the chest tube remains and the feeding issue. They emptied the fluid container but he’s at around 400ml total drained since the chest tube was set. We are told he needs to be on this zero fat formula tolerex and he’s taking that just fine with enfalyte instead of the water dilution to get the correct and required calories. We are grateful for the flavoring consideration this go round as it is obvious we have a strong willed man on our hands lol!

On the feeds note we had a bit of an issue with the set total daily limit for Cam as he was no where near satisfied with only having 650ml daily. While at home the past month he would eat 700-1,000ml daily of regular formula. Cam was getting out of control hungry screaming crying kicking upset when they would only allow him 650ml total for the entire day so it was 81ml every 3 hours. We went to dinner when the unit closed as normal for 6:30pm and he was sleeping after a snack of 81ml. They called me not two hours later to say he was crazy mad and if I could come to console him even with the unit closed. Cam cannot be getting that upset or it could put stress on his poor heart and lungs which is not good at all. Actually, Cam just wanted a calm Momma and a bottle the rotten egg.

Daddy Mogg aka Doctor Daddy (just kidding but he’s so clever and great at problem solving) suggested and then it was ordered to ‘dc’ which is medical for ‘discontinue’ Cam’s gabapentin medication. The gabapentin was to help Cam eat by numbing the stomach nerve endings, because some patients after a trauma such as open heart surgery have a hard time eating after the procedures. They say the body could sometimes relate the pain of the surgery right down to the belly making it uncomfortable to eat. The theory was that the gabapentin was numbing his stomach nerve endings and maybe Cam couldn’t feel that he was full after an appropriate amount of formula making him crazy thinking he’s always hungry.

We are allowed to feed Cam ad lib or at ones pleasure for now. The first day of ad lib he scarfed down over 1,000ml of formula like a crazy man. The Doctors and nurses were concerned about him taking that excess amount of fluids in with his chest tube drainage issue and they reduced the calories in the formula to help compensate there too. They want him at a more reasonable total daily fluid amount like 650-700ml @20-24 calories. However, he was so upset when we tried to limit him it was to a point Mommy could not console him which is totally scary when those tears, screaming and red face are all you can get after rocking him for an hour. After we cut out the gabapentin yesterday (cold turkey) his total daily count was around 700ml. We will see how today goes and hope this is the solution, it’s been such a wild journey over something so simple like baby formula and feeds. Thanks again for following us for the holidays it’s been eventful to say the least… Goodness!

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CICU Day 4

25 Nov

Cameron’s chest tube is still draining he has given out a little more than 300ml as of today, wow! They will now give him an injection of sandostatin twice a day to help stop the fluid from building up again and again. Also, they went up on his lasix from .6ml daily to .5ml twice a day. On another note Daddy insisted we be able to feed Cam what he wants, because Mommy was up late last night trying to comfort him with his hunger due to his limited total daily feeds. Cam would get so upset and out of control I really couldn’t do anything to comfort him. It didn’t seem right to have him that upset and would be more harmful to his heart; but these things are resolved and we are moving on with our stay here.

Cameron has his mini tv back with Mickey mouse playing for him. Camdini was working on his escape from the foot iv by using his big toe to pull the tape off. What a little stinker we have on our hands at 5 months old, never a dull moment here. Anyway we hope these new injections help and we can eventually go home again.

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Thanksgiving Day In CICU

24 Nov

Cameron’s first Thanksgiving was spent with his CICU crew of nurses which is almost like family to us. Cam’s chest tube has put out 250ml so far and still draining so we will be here until it stops. They say better out then in and we are amazed at the amount which has come out already. Cam is getting bigger feeds but he still is limited to a total fluid count for the day. Cam has been much happier and taking more peaceful naps too. We are thankful for everyone’s support and prayers this has been a busy year for us and the thoughtfulness is appreciated here.

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Thanksgiving Pigtail Chest Tube

23 Nov

Cameron did good, the chest tube drained about 100ml for now which I think is crazy! They are running tests on what the fluid is and we will go from there with a plan on what to do next with his formula. It was noted that enfaport is low fat formula but he may need to be on a zero fat formula called tolerex which is twice as disgusting in the flavor department. We can only hope Cameron will give the zero fat formula consideration for his health if the other low fat formula is what caused the fluid build up.

Cam was super nova mad when he got up this morning with an empty belly being cut off from feeds since 3am. Cam was allowed to eat Pedialtye feeds yesterday from 5pm to 3am and was eating like we never fed him ever! Momma and Daddy could only rock him to comfort his hunger until he cried himself to sleep worn out, poor man. They gave him versed and took him away for surgery early this morning which they ended up giving him morphine too because he was out of control over the hunger issue. They said he would start putting everything in his mouth the cords, the blanket, his hands etc.

We are just waiting now and will post more information as we get it to keep y’all up to date with our little man, thanks again for the prayers and support for our family.

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CICU for Thanksgiving

23 Nov

Cameron is okay just to start off this post but we were admitted to the CICU last night. Cameron had his follow up Pediatric Cardiologist appointment yesterday afternoon at Children’s Hospital Nola. Cam had an echo done where they take an ultrasound of his heart and they also checked his chest cavity. Cameron had some build up of fluid between the layers of tissue that line the lungs and chest cavity or medically called pleural effusion. There was a significant amount seen on his right side calling for the Doctor to make the decision to get him admitted at once to have a chest tube administered to drain the excessive collection of fluids. This procedure will be done this morning around 7am Cam will be taken to the OR and we will post further details once we have more information to share.

This was sudden and unexpected seeing as it’s only been 1 week since we were discharged from his Glenn procedure but that’s why we had the appointment with the Pediatric Cardiologist. I had noticed he was breathing faster than normal and moody but only expected them to change his medications not admit us to the CICU. We will more than likely be here a few days it all depends on how fast the fluids drain which will determine the length of our stay. Thanksgiving for us maybe at the hospital but we still have much to be thankful for with Cameron. Cameron was allowed to have Pedialtye until 3am which he scarfed about three 6oz bottles like a piggy we haven’t fed in days. Cam has been on the low fat formula enfaport since his surgery which isn’t the most flavorful kind and in fact he hates it so its a big treat for him to have so much Pedialtye. Anyway Cam was required to be on the enfaport to help avoid these excess fluids in his chest cavity because a fatty diet can cause this fluid to produce here. We hope after this chest tube drains we will be able to adjust his meds to help avoid this happening again but we will have to see how everything goes with the chest tube drainage. Please keep us in your prayers this holiday, we will need the support to get us through this event and appreciate it. On another note… Happy 5 months old little buddy!

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