We got to go outside and give Cam some sunshine Sunday… We got to take a walk around the unit then we were given the ok to go outside which is big! We had Cam walking out his room to the hall to get in this toy car and then we would ride him around just to get out the room. They really want Cam walking more but we were taking it slow because his muscles are a little off from being in the bed so long. Today we just did more walking and riding, they even had someone from Physical Therapy come by to evaluate Cam. Anyway we have some work ahead of us with getting him back in shape. Also, we are getting morning X-rays to watch any new fluid in his chest. The Doctor said they saw some fluid on the right side and tomorrow we will get another xray and Echo and ultrasound to follow the measurements. Hopefully Cams body can handle pushing out the fluid with diuretics and we won’t accumulate enough fluid to need another chest tube(s). Continued prayers are welcomed and much appreciated…
Friday was slow not much action and we thought Saturday would be slow too seeing as it was the weekend but we got a huge surprise. Early Saturday morning the Doctor came in the door of our room and said cheerfully ‘Let’s just take out all these chest tubes.’ We laughed lightly totally thinking it was a joke because the fluid was still draining a good bit. However, the Doctor returned again with the Nurses caring supplies preparing the room. We were all surprised and Mommy is nervous that we will need new chest tubes if most of the fluid returns. The Doctor mentioned sometimes leaving the chest tubes in will make the drainage continue, and if he needs new tubes they can put different ones in that can allow him better mobility then these big chamber locked chest tubes. Cam was given morphine and they finished the process of removing both remaining chest tubes with us waiting outside the room. Cam was upset and didn’t want them to take his wires but they took the right and center chest tubes out covering his chest with foam tape.
Cam rested most of the afternoon and that evening we tried to get him out the bed for a small walk. It was great to finally get him sitting up and Mommy melted as she finally got to hold him after all this time. Cam did not want to get out the bed and was scared to try to walk. He was really wobbly and his legs are very weak from staying in the bed so long. We made it just outside the room and back before Cam had a meltdown. We returned to the room with a surprise gift for Cameron which he enjoyed very much thank you mystery friend!!! We will continue to hope that the chest fluid does not come back and we stay chest tube free because that means we are closer to getting to go home!!!
Yesterday they ordered Cam to have a Picc line put in his right arm. PICC stands for “Peripherally Inserted Central Catheter”. A PICC line is a catheter that is inserted into a vein in your upper arm. The catheter is then advanced and positioned in a large vein in your chest just above the heart. We want to be able to continue the sandostatin medication and that can only be administered through an iv line like the picc line. The sandostatin medication should help slow the chest tube drainage. We remember all to well how long we had chest tubes the last surgery so we want to try and continue this medication with the hope we can go home sooner then later. If we could just get the center chest tube out (the mediastinal) we could possibly get him mobile and out the bed which would be nice.
They use sedation when inserting a picc line. We were late on the operating schedule to go into the OR. We had to wait until noon so we couldn’t let Cam eat or drink before they took him to the OR. It was a hard and exhausting time distracting him and avoiding food requests. He asked so many times for any type of food and he was just the saddest thing. He started asking for ice cream, french fries, mash potato, pizza and then he got desperate asking for one piece of candy corn or one tiny bit of bread. It was awful waiting so long and have him continue to ask for the simplest amount of food.
Anyway they took him to the OR and put in the picc line. They let us go back to the recovery area and wait for him to come out of sedation but he was so extremely out. They sent us back to the CICU with Cam still asleep under sedation and he slept for a few hours under their careful watch. Cam woke up and seemed ok getting right back into the game of where’s my food and let’s watch tv. We fed him everything except the kitchen sink. Any request we ran out to get and all the ice cream he could hold – all still completely fat free of course.
A nice lady from Child Life services started coming out once a day to play with Cam. She comes prepared with a game or kid activity which is so very nice to get him talking and smiling. I wish we could give him real kid visitation instead of all adults, but that is not safe with Cam having such a low immunity right now.
I feel like I lost a day somewhere and can’t keep count of how long we have been here already even with the posts. Most of the time we are busy sitting with Cam playing, feeding and distracting him. We are constantly switching parents to take turns eating or sleeping in the camper. There is not much time in between, but I will continue to try and do my best to post updates here when we get updates. Thank you for the continued support and prayers they are heard and received well here.
Cam is one tough guy!
Cam made it through a rough time yesterday with all that activity over losing the RA line. Most of that situation has calmed down, but it may pick up again tomorrow if they want a new picc iv line. The chest tube drainage continues flowing and if we want to continue the medication sandostatin to help with the drainage we will need a new picc iv line. The iv line he has now is in his hand but it is not stable and only lasts a few days. We had an echo this mornings which was upsetting for Cam but we got to see his heart with the fenestrated Fontan.
Cam is still on a fat free diet until these chest tubes are over so our meal and snack options are wearing out for Cam. Cam made a request for french fries and Daddy came to the rescue! We told Cam that Daddy drove far away to the McPlace to get him some fries. Really Daddy bought fresh potatoes and cut them ever so particularly small then slow cooked them perfect. We made a make shift fry bag to set them in like a restaurant would serve them. Cam loved it!!! Cam has eaten the fries for three to four meals a day! Poor Daddy keeps pretend driving to the McPlace for more fries and just cooking more in the camper. Good job Daddy Bear!!!
Besides that we are doing light play activities movies, painting, crafts and new toys to distract us and make our days go by better stuck in the bed. I would like to thank those who have sent us parent food as well as Cam get well gifts they are all great to share with Cam. He is enjoying them very much and so are we giving him fresh activities. Thank you for the continued prayers I know I say that often and we do appreciate the all the support during this slow recovery time.
Yesterday was not too eventful our orders didn’t change much and there was little medical activity. However, we had a Super rough day today and I’m not sure it’s over yet so here’s what going on at the moment…
Last night or early 4am they wanted blood work. Cam has an RA line which goes into the right atrium in his heart. The line would not draw back blood for the lab work. The nurse ordered an X-ray to check the placement of the line and they stopped all Iv meds until confirmation that it was moved out of place. There were only two medications going into the Iv line an antibiotic for the chest tubes which could be changed to oral medication and sandostatin. Cam is on Sandostatin to help with the chest tube drainage which we need because we are still draining fluid, but this medication can only be given through an Iv line.
This morning Cam got a new Iv line in his left hand which he was highly upset over getting a new ‘pinch’ (needle/shot). Then that new iv line doesn’t draw blood for lab work so we had to pinch him again in the other right hand and again an upsetting event for Cam. He tells us sadly that he doesn’t want another pinch and we reassure him it’s not his fault. We tell him we need to do this to get him better and go home faster. They are able to restart the sandostatin medication in the new Iv line in his left hand. Then we had an echo to check for fluid in his chest which Cam does not want his bed covers off and people touching him at all at this point of the day 2 pinches later. There was a small amount of fluid on the left side of his chest Daren in the echo, but they want to continue the diuretic lasix and wait to see if it will handle itself without getting into a new chest tube placement. Then the Doctor came in to take out the RA line since it was no longer useful or in place. It was very hard to endure watching hold him down but Cam was so brave. Cam not only told us he didn’t want another pinch but added to it he didn’t want the wires out (chest tubes). While pulling out the RA line they also changed his bandages and tape over his chest and chest tubes so we now have a better view of his new zipper and super hero scars. One hour after that event another echo to check the site after the RA line is removed from the heart. Cam is resting now and I can just hope and pray this entire event is over and we can move past today and all of this extra upsetting activities.
Cam had his left chest tube removed the other day, but he still has a right and center chest tube in place and draining. Cam also still has his RA line which is in his heart. Cam was started on sandostatin via Iv line to help with the chest tube drainage. Our lasix is now being given by mouth instead of Iv. We are also taking oral meds called captopril, sildenafil, aldactone, aspirin and pepsid they are given throughout the day and night.
Cam has his sad moments when we are switching shifts and one of us has to leave for the night. But all in all Cam seems more talkative and still does well with being in the bed after all these days. Cam does not like when the Nurses and/or Doctors come in the room which no one could blame him at this point. We were taking a simple temperature under the arm and it was upsetting, until we told him he broke the machine with his super muscles and then it was a little easier to handle. We have had many talks with him about the situation (in toddler terms) and try to assure him we will tell him before they do anything which sometimes works and sometimes does not.
We are still on the fat free diet due to the two remaining chest tubes and trying to avoid chyle leaks. We have run through all our prepared fat free food items and are constantly trying to get creative and also trying to make these options appeal to a 3 year old everyday. He has asked for a few things that are completely off the fat free food list such as his regular milk cup which was pediasure, banana, doughnuts from the factory (Krispy creme), regular Mac n cheese from home, regular cars soup from home, cheese puffs, ravioli, crackers, Cheetos etc etc etc. Now we have tried to use our fat free flour and mixes to make some of these items but he is all the too wise. We will continue our attempts to bring any comfort available to this little heart warrior and appreciate all the continued support and prayers for our family through this recovery time.