New tube

Here is a picture(albeit fuzzy camera phone pic) of Marissa's new GJ-tube. Im LOVING it so far! She hasnt thrown up even ONCE in 5days...WOW!
The top "tube" is her Broviac Central Line and the GJ-tube is the bottom. You can see two "extension" tubes that come off the button. One screws into the G port and one into the J port. We give meds and elecare in the J port(18hours per day) and drain and vent out of the G port(24hrs per day). GREAT system!

Its been a long time

Since Ive updated this blog. Like with my other blog I think its important that I continue to blog here because if anything I am able to track my own progress. I can read back through old posts and just see my knowledge grow, and sometimes laugh at myself for my "overreactiveness" to certain things and lack of understanding and knowledge of others. The truth is I was woefully unprepared to deal with all involved in Mari's care. How can one prepare anyway? I was about as prepared as I would have been had I given birth to her. I was someone who wanted a child and had the love in my heart, its that love and commitment to my child that has gotten me through. We go through so much everyday and learn all the time. Its always something new with her, just when we think we've got things figured out everything changes.




Since my last update we've had one hospitalization, for Gingivistomatitis(herpes simplex 1). It was a frustrating experience as they really had no idea what was wrong with her. She had high fevers and negative blood cultures but as long as she had a fever they had to assume line infection and they kept her admitted and on IV antibiotics. They were not effective and I was losing my patience. I couldn't understand why they weren't doing more to figure out what was wrong, it was obviously not a line infection but that's what they continued to treat her for! Finally, my friend Raechelle and I took her other symptoms(red swollen gums and sores on her cheeks) and punched them into google and we can up with high fever+red swollen gums+sores= herpes simplex 1(stomatitis) it fit so we took all the information to the Drs. They also had a light bulb moment and started anti virals, she was home 2days later.




During her 10day hospital stay she was obviously not as active as she usually is. That prevented her from being able to tolerate her full feeds. When we got home the trend continued. She went from tolerating 24ounces per day(her highest) down to only about 6ounces per day 12 tops. She couldn't seem to really recover. On the 17th we had a GJ-tube placed(replacing her G-tube via the same stoma) we are now doing continuous feeds for 18hrs per day. We started very slowly at 3ml/hr and are now up to 5ml/hr. We have a current goal of 15ml/hr and will go up from there as tolerated. The other thing that has changed is I am now venting/draining her out of the Gport and feeding her into her Jport. She is draining about 200mls of bile per day and as a result not vomiting, that is SO nice for a change. Her diapers are also more pleasant to changed without that added bile. They still aren't pretty and the addition of Elecare(new formula) means they are super smelly....but so far we have a good thing going. I hope things continue on this path.




That's our update!

No more nurse

I'm done. We've tried 3 nurses and I'm really just done. The truth is LVNs don't have the training or knowledge base to handle my kiddo and the ones they've sent me don't seem to have the ability to understand the seriousness of it all. I'm not sure I even blogged the full reasons we let nurse #2 go but suffice to say her actions(or lack there of) put my child in jeopardy not once but twice and what I discovered yesterday with nurse #3 is inexcusable. These are life and death issues and I mean that quite literally. Its not really completely their fault, they don't have the formal training/knowledge to handle it. I was told RNs in this area don't do home health/shift work so I could have an LVN. The LVN could do supportive work for me IE her laundry, clean her room, bleach out her personal fridge, stock and organise supplies, do weekly supply order, give her g-tube feeds and medications, attend/assist at therapy appointments, bathing/changing. I was also told this person could attend school with her, and stay home with her when I had errands appointments I needed to be at without her. The problem is this, stuff happens all the time that requires observation and intervention that relate to her line and important fluid and electrolite issues. Her pumps alarm(FOR A REASON) simply TURNING THEM OFF and not calling me is a HUGE HUGE HUGE problem. Casually mentioning it HOURS after the fact is beyond inexcusable. TPN is quite literally life support for my child. Turning off her pump and not clamping her lines, not flushing her lines means blood can backflow into the hub and she can develope an infection which could lead to DEATH. Her line could clot off which could also lead to infection and necessitate the need for major surgery! On top of that I discovered the fact that now twice in the past few days the nurse improperly used our gastric pressure relief bags. I am using them to vent her tummy over night and then if she is about to throw up I am dropping the bag letting some of the bile/vomit flow into the bag. Just enough to take some of the pressure off. Once she stops retching I clamp off the bag. I have explained this repeatedly to the nurse and several times I have found out she let the bags fill to bursting without notifing me in the moment or replacing any of the fluids. If you take it out you need to PUT IT BACK save causing serious imbalances. So not only have we been dealing with this but several times I have found her laundry not put away after the nurse leaves, or syringes left unwashed, supply orders just not done or supply orders filled out saying we need items we dont and not indicating items we do need. On top of all of this Marissa has gone down hill fast. It gets worse everyday instead of better. After the first week with nurse #3 she started having a lot of anxiety. She would begin to cry(scream/thrash/hit herself) the moment the nurse arrived in the morning. At first it was just when the nurse was doing care for her and then progressed to ANYONE doing anything for her but me. This includes Shana and Raechelle who are both primary(secondary?) caregivers for her, beascially they are both also as good as mommy--or WERE. To the point that she will cry if I leave the room or anyone else even talks to her. She stopped sleeping at night crying for me all night long. The amount of food she has been able to tollerate has decreased drastically and her vomitting has increased from not at all to daily to twice daily plus. Basically my life is hell right now. Im not getting any sleep and the illusion of help is just f*cking with me because it is without a doubt nothing more than a hinderance and disapointment. SOOOOOOOOOO starting Monday I will no longer have a nurse. Im going back to doing it mostly on my own. THIS time I am hiring help in other ways. Our current house keeper is moving out of state so I will be replacing her with a part time nanny/housekeeper. I will hire someone to come in two days per week. This person will be responsible for ALL school transportation( 3 kids 3 different schools to and from) and watching Mackenzie while I take Marissa to PT and OT. She will also be responsible for cleaning(all 3)bathrooms, vacuuming the whole house, dusting and mopping the kitchen floor. Insurance wont pay for this person like it would pay for a nurse....But my sanity and my daughters LIFE means it will be worth it.

A New Line!

Unfortunately Marissa's line was dislodged Tuesday morning. We don't know how and at first we weren't even sure if that's actually what had happened. There was some bleeding and drainage around the site and it looked pulled out slightly, not more than 1/8inch. After further testing it was confirmed that it was indeed dislodged. We have a new nurse and while I do so appreciate her and all the wonderful help she gives me...I'm a control freak and knowing she discovered this and not me and not knowing if she knows more than she let on...well it makes me sorta panic a little ok ok a lot. She's home now. Surgery went well. I thought Id have more to say...but I guess I need to process a bit more before I do.

Suzi

I don't have a pattern per se but I do have detailed pictures of it laying flat. I will upload them soon. It's what we used to create our own pattern, it really was simple to make.

16 ounces per day!

How awesome is my mom?

I found this product online today called a summers.lifeguard. Wow what a great concept! I knew right away it was something we could really REALLY use with Marissa! I immediately called the company to find out more info. I really love what they have done. Unfortunately, I don't have an extra 375$ right now (which is about how much 3would cost without shipping) and 3 is really the minimum number that we would need. I was pretty bummed. I called my mom and she said she'd bring her sewing machine over and we would see what we could come up with. I had a few yards of some flannel Id bought to make night gowns for the girls and my mom picked up a few yards of velcro. I am so so so thrilled with what my mom was able to do! I still really want to order a summers.lifeguard when I can afford it as I like to support small businesses and their inspiration is such a blessing to us.