Archive | January, 2012

Moggs Move Home Again

30 Jan

This morning we were discharged from children’s hospital again (and the crowd of stalkers cheer roarrrr)! We do have both chest tubes to handle but I feel better waiting then having to go through surgery again to put new tubes in a few days later. I’m thrilled to be home and truly appreciate this opportunity to have Cam in a more comfortable setting for both of us. No monitors dinging alarms, no vitals, no treatments, we do meds when we are ready, no white walls and best of all peaceful sleep! Mommy gets to sleep in a bed and loving just being home with Nick and our two puppies Puddin Pop and Brownie Bites! Cam will miss his Nurses visiting but we will have plenty of Doctor appointments for that. We have an appointment Wednesday for a chest X-ray and an ultrasound. We will post more when available for now we are moving back home and getting settled tonight, it’s so exciting!!!

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One step forward & TWO steps back!

27 Jan

Well there was good news as they had written discharge orders and paperwork sending us home yesterday morning but we ran into a big fluid snag. The nurse came in yesterday morning and said she had everything ready for us to sign and go, we were being sent home with the chest tubes again. I was delighted even with the orders to return every few days for a check up X-ray because we would get to be home. We got the supples needed to care for the chest tubes and Mommy decided she wanted to pull the fluid instead of having the nurse do the honors. I used a 5cc syringe and it didn’t feel like it had always felt when I pulled back before so I put more pressure to it and it started to squirt into the syringe like I pulled a clot out. The syringe filled and another and another needless to say we ended up with about 30cc of fluid pulled from the left side. We were ordered to stay and the excitement of the day was over, but I’m glad in a way we didn’t just go home with the issue as I think it would have just been a tease and more energy to pack etc. Later in the day Dad pulled another 20cc or so from the right side and it really put a sad mood to the entire day. My take on the hidden fluid could be the kink in the area where it meets the stop cock but it could also have been a clot or the position he was laying in or pressure imbalances in his body. We still don’t know the cause and still just have to wait for him to grow out of it as none of the other options are in his best interest, because they call for surgery and most are painful.

Anyway they removed the central line out of his chest so no more iv lines and also removed the dry chambers from his sides. The right chest tube put out 320 and the left put out 470 since we were admitted this round. The chest tubes now have to be manually aspirated every 4 hours with syringes. We are now able to hold our little ham and it’s wonderful and sweet! Speaking of growing and ham… Cam has a new trick where he stands up for attention and wows the crowd of nurses. Yeah he’s a bit of a ham but we absolutely love it! On that note we have noticed Cam being much more tired after standing all day and working himself up during play times which is basically all day, but I’m sure it will get easier for him as he gets the practice.

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Silly Cam

24 Jan

Happy Bubbly Birthday @7 Months Old

24 Jan

Cameron turned 7 months old yesterday and I figured out we have spent 17 of his 30 weeks of life admitted in the hospital. Also, we have spent many more days in and out of the Doctors’ offices. Happy Bubbly Birthday @7 Months Baby Mogg, we are so proud of you for all that you have been through still able to smile and laugh. Cameron you are simply beautiful, Love You!

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Peek-A-Boo

22 Jan

Cameron is doing much better now as a few things have changed and the chest tube fluid has almost stopped draining in both sides. Cameron is starting to get back into his normal mood and being sweet and playful maybe too active at this point. They changed us to boarder status which is wonderful news since that means we are no longer require critical care as well as we will only need vitals every 4 hours (more sleep for us hopefully!).

Cam is only getting via IV line ancef (antibiotics), lasix (diuretics) and a small amount of sandostaton (meds to help stop the fluid) which now requires a chaser of normal saline since the dose is so low in this IV line. Cam is still on the Tolerex formula at 20 calories with a 800ml total daily feed limit; and he does not miss a second for his 3 hour schedule or a drop of each feed. He does get some meds by mouth like his Aspirin, Enalapril and Sildenafil/Viagra.

Cam was taken off versed (sedative) the other day and is fully aware of his surroundings as well as much more active. He really plays now and tries to roll over and stand up like he was doing at home. He notices the wires from his leads and tubes from the central iv line and tries playing with them, and Mommy has to keep a closer eye on this little man. He had an episode the first night off the sedation which we think could have been withdrawals, because he was crazy fussy mad kicking and screaming out of control. He did not want to take a nap but he had been up almost the entire day without proper or normal rest. Mommy could not do a single thing to console him or calm him down and I had to have the Nurse step in to help. Cam is now back to his calm playful normal self and I’ve got to say I did not like how he looked or acted on the Versed not one bit. I’m sure this med is needed for surgeries but it was not mixing well with Cam afterwards making him a very strange baby to handle.

The right side stopped putting out fluid for the most part, but it was pulled on while he was trying to stand up and play. It bled a little on the dressing about a quarter size amount and when we aspirated or pulled for fluid it gave out real full blood without any fluid present at 1-2cc. This worried Mommy very much but the Doctors stopped by to check it and said it was ok and the Nurse said to try and keep him calm (ha ha). We are hoping only another week or so of this and maybe we can try to go home again. I will post if we have any other updates but for now enjoy the pictures and peek-a-boo video.20120122-185626.jpg20120122-185646.jpg20120122-201931.jpg20120122-201941.jpg20120122-201917.jpg20120122-202145.jpg

Breakfast, Lunch and Dinner

19 Jan

Cameron was given orders to allow feeds yesterday of Tolerex formula at 15 calories with a daily total fluid restriction of 700ml. I was so excited he could eat something and he was anxious about finally getting a bottle he practically fed himself. The first meal was breakfast at 9am of 70ml which was a tease for him and it made him mad enough to throw a fit and cry himself hysterical into a nap. At home on 20 calorie Tolerex still with 800ml feed limit because of the chest tubes, he would easily eat 100 or 125ml when he would sleep longer at night skipping a meal. We are still on a 3 hour schedule with the feeds so the next go around lunch I gave him a little more at 85ml but Cameron was getting furious with the slightly smaller feeds I was beside myself most of the day with him being inconsolable. Nick came around dinner to give me a break. I just laughed at this point and said good luck daddio he was a pill all day for me even with feeds and I explained how the day went.

Cam would get a feed of 85ml and cry once he sucked the bottle dry along with some air afterwards continuing to look for formula to come out the now completely empty bottle. The cry would be a sad silent inhale and a most depressing face would follow with a shaky lip that it would melt anyone. He would get over it and play or hang out for maybe an hour then get mad about who knows what… Crying, kicking, rolling over, screaming, swatting! He would get all worked up not wanting to play or watch tv nothing could console him so he would blow all his energy and sleep for a short time. I’m not sure what’s going on half the time if he’s really just tired and doesn’t want to sleep or that he’s uncomfortable or bored being stuck in the bed or mad that we are not holding him spoiling him. He still has a central line in his chest and we don’t take him out the bed because it could be dangerous with the line. The 3 hour feeding schedule is necessary so that his stomach can rest from digesting food so he doesn’t get cramps or diarrhea. Cam is still on versed so he is kinda sedated and I just don’t know what’s going on with him some of the time. Daddy made it alive during his time with Cam and I got to leave for a few hours to eat, clean up, run errands and recharge.

I asked if we could have more formula this morning and the Doctors we’re kind enough to allow it as they really don’t want the extra fluid to affect the drainage amount, but Cam is still on a good bit of diuretics. We were given the 20 calorie Tolerex with a 800ml daily total fluid restriction, I’m thrilled right! However, even with the 100ml feeds and increased calories Cam is still getting crazy mad so now I think it’s something else with him maybe being uncomfortable, bored or hurt that we don’t pick him up. Another thing could be the change in his sleeping schedule as we are wild now with 5am X-ray, treatments and vitals at all hours again. The staff is being considerate when Cam is sleeping and waiting sometimes until the last minute to get things from him, but we don’t get the same peaceful rest as we enjoyed at home.

What’s the plan you ask? Time is the only safe answer for now as the surgery options really aren’t in his best interest. I only hope Cam can calm down and stop the madness for his own sake or these chest tubes can just stop draining and maybe we can at least get him out of bed. However, again with the flu season it’s not the best idea to have him strolling around even in a closed unit; but what else can we do to keep the trapped social butterfly somewhat happy during this second go round of horrible chest tubes. We are frustrated but there really is no clear or simple solution to what or why his body is doing this we just have to wait and be patient and allow him to grow out of it. Thanks for your support and prayers!

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Hungry Baby

17 Jan

Cameron has two chest tubes one in each side, the surgery happened yesterday afternoon. They drained 60ml out of the right side and 80ml out of the left side, then more throughout the day totaling about 250ml. Cameron was ordered npo meaning no food instead he will get tpn via Iv line and it was said to be ordered for a few DAYS! It is one of the treatment options to try and stop the pleural effusions. We are only able to try this treatment now because Cam was given a central Iv line in his left sholder/chest. The central line allows for multiple Iv drips of medications to be dispensed continuously throughout the day. Currently, Cam is getting via the central Iv line tpn, lasixs, sandostation, ancef and versed. The versed makes him a little loopy to help with keeping him calm but it doesn’t work all that well with our poor little Cam.

Cameron was a hungry baby with feeding restrictions and now he cannot even have a drop of his zero fat formula. It’s been hard to distract him all day and night without giving him food telling him it’s okay or it’s going to be better. I don’t know where to begin with how stressful it’s been keeping him as calm as possible without feeding him at all. I have two bags of toys, many movies and visiting nurses to keep him busy; but he still knows he’s hungry taking every drop of any meds or grabbing whatever comes near his mouth just hoping its a bottle. I not only cannot feed him but since he has a central line I cannot hold him to console him or ride him around the unit to visit his friends and see anything other then the four walls in his room. I can only hope this doesn’t have to happen long, please keep us in your prayers!

The right side has slowed down with regards to the drainage amount a good bit today but the left is still steadily putting out fluid. There is no known reason for this happening again other then his body reacting to the open chest trauma from his Glenn surgery months ago. We were warmly and yet sadly welcomed back by the staff at Children’s Hospital New Orleans (Chnola). The CICU nurses were all shocked to see us back on the rooming board and we are not excited at all either, they are very kind and sympathetic to us and we appreciate it. There is no timeframe on our stay so we will just update when there are any changes or news.

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