Mommy + Quinn = Family: Pictures and Update

Oh boy. this week has been so incredibly busy. It's been insane. The weekend we got home wasn't exactly a "relax" weekend. I was having a hard time dealing with this PICC line, i created a nice clean area and bought a chair just for Quinn's "access" area. my mom came over to help me organize all the fun stuff that came with having a PICC line... on top of all the other accessories she gets for having two feeding tubes, drainage bags and oxygen. Needless to say, we have one spot for quick grabs and a whole other area for bulk items. Accessing her line was first a very daunting task. I was so afraid to mess up and I actually did once! she has two lumens, so two lines that need to be flushed and I was working on one and cleaning it up and I accidentally flushed the other one without making sure it was sterile. Then she got an incredibly minor fever 100.6... so that had me on edge for like a day, but all is ok. As far as flushing her line, it was very difficult to flush! I was bending syringes trying to get it to flush. It was just soooo hard! I knew it was going to be a little resistant because she's a peds patient and has smaller cathedars and smaller veins, but I KNEW it shouldn't be so hard to flush, so I was really anxious to see what the nurse had to say about that at her dressing change.

She has been having a very difficult time making it to the bathroom, this has been going on for about 3 weeks. She's been having diarrhea and also she is peeing her pants. I had to start putting her back in diapers. It's quite stressful because when I ask her if she knew she went, she says no. Plus, as far as her poop goes, it just comes out of her bottom. she's on 3 caps of mirilax a day, so we went ahead and decreased it to 1.5 caps, but the problem is, now she doesn't have any meaningful bowel movements. They are all just like... small amounts of watery stool. If i remove the mirilax all together, she simply doesn't go. so we are working to re-potty train her and her bowel regimen just has to be on a day to day basis.

On Wednesday, Quinn had an appointment with her pediatrician, it was just basically a checkup after the hospital and to update her on all the things Q has been going through and to let her know that she got a PICC line and to file some paperwork. She was just so sad to see that Quinn's stomach has been declining so badly. She knows when it gets bad because i typically take her there before anything else unless it's a serious issue and needs to be seen in the ER, so she's seen Q at her worst when it comes to her stomach so i think it's no surprise to her that she ended up on a central line. but still, they love Quinn and she seemed so sad that she couldn't help fix her. We are all very anxiously waiting on her appointment with the mito doctor in CHLA. this will be April 7th!!! so close!

That same day, she had her dressing changed, all the way down the hill.... and it was complete TORTURE! My poor kid. she is so brave. She was crying so much, but smiling in between the tears and trying so hard not to hurt. no wonder why this stuff hurts her so bad, she has such sensitive skin that she developed bleeding pressure wounds, just from the dressing being on the skin. I'ts not an allergic reaction, it's literally just a pressure wound and any kind of dressing is going to be hard on her skin because it's any kind of tape that will hurt her. It's just from the pressure of it being on her skin. The BioPatch they put in the middle also caused a pressure wound around the cathedar site. poor thing. Both the nurses who changed her dressings this week commented on her very sensitive skin. And she has to have this done every week (well she had it done twice this week). Anyway, at first, before the nurse picked up the dressings, she tried flushing her line and i was telling her that i didn't think it hsould be that hard to flush and she said that it absolutely was extremely difficult to flush and was going on and on saying that we needed to go back to the hospital to get the PICC line looked at and to possibly need it to be flushed with stuff called TA. So anyway, she tore off the dressings and we found the root of the problem... Quinn has a HUGE kink in her line close to the cathetar site, under the BioPatch. Well, that would explain it all, so nix on the going to the hospital thing, now the issue is how to alleviate the kink. The kink was so bad and had been kinked for so long that it developed a weak spot, and is at risk for being kinked again. Not good news. so we maneuvered the dressings and BioPatch accordingly and wow... wow wow wow... I can't believe how much EASIER it is to flush!!!!

On Thursday, Quinn had an appointment to go and see her GI doctor. We were both amazed to see the scale read 40lb! Quinn gained 2 lbs since leaving the hospital, which is great! she also looks much more plump. Ok, i know what some of you may be thinking, Q is at a healthy weight... and in essence, that's right. If some of you follow... They have been talking about Q's nutritional status for a long time. If you look at just her weight, you would think to see a healthy looking kiddo, but Q's BMI is off. Before she got her J tube put in, she was off the charts low for BMI and the nutritionist at hte hospital kept telling me that she was malnourished... well duh! that's why we are doing J tube. Despite having an excessively high caloric intake due to the tube feeds, she still struggles with appropriate weight gain, she fluctuates on the scale significantly. her appearance with clothes on can be deceiving since she is at a good height, and her belly is at least a little distended most people would think that was ok. Now, you take off my kid's clothes, she is literally SKIN AND BONES... especially back in November, when seh got her J tube placed.

September ? ish

A Few Weeks Ago

Her poor bad belly right before that last hospitalization

She looked very malnourished. BUT... weight is not the reason she got her PICC line in the first place. At first, the GI did talk to me about the TPN, but I told him that I felt her weight was ok, and she was climbing on the BMI charts and I don't want to destroy her liver prematurely. But she does need some help with some extra hydration. the rate at which we feed her is just not enough to cut it.

anyway, back to the appointment... He gave us some prevacid to help reduce the acid in her stomach...and we know she is refluxing again, so that should help. And he also prescribed us this powdery substance to put around her J tube stoma to protect the skin from breaking down from the bile that tends to leak out around the stoma.

Did I ever mention how absolutely AMAZING her GI doc is. We LOVE him! I want to give him something in appreciation for how he goes about treating my daughter. He is very affectionate with her, he doesn't like to hurt her, he never ever rushes us, he thoroughly answers our questions and he is very knowledgable! I just feel so blessed to have found him, in the midst of all the craziness that has gone on with doctors and Quinn, he is always the one to go above and beyond to sort stuff out for us! I feel like he really works very hard. I want to do something to show him how much I appreciate him. Have any suggestions?

Last but not least, Quinn finally got approved for the home nursing who will come out once a week for PICC line care and dressing changes. She came out today and tortured my kid some more with another dressing change. She's really a very sweet lady and used to work in the NICU when Quinn was there! She took a long history and I really enjoyed our conversation. she was also very good with Quinn. She also offered to try and help us get her a night time pulse ox for her!

We also had a meeting with the school nurses to discuss Quinn's care plan for going back to school. I too am just thrilled with the care she receives at school and how careful they are with Quinn. I love the nursing staff (who yes, can sometimes take a long time to get back with me but this time they didn't and it was cool), but they have been the same nurses working with me and Quinn since Q was 3. So it's really cool to have them around because they kinda know how difficult things have gotten for her and are aware of her health status. she does get to go back to school! there are a lot of guidelines, but her teacher is just great and is really good with Quinn and incredibly thorough. The nurses also told me that they would pay for a stroller with swivel wheels to help her with her oxygen and also offered their help and resources to help get her a pulse ox! I just can't believe I don't have any reservations with sending ehr back to school on a PICC line and having her sugars checked while there too. I trust them so much and feel like she is in good hands! so rare to get such wonderful feelings about the school staff.

We are also in the process of starting her transition into Kindergarten. I will be meeting with her school principal and school psychologist on Monday. NERVOUS!

Wow that was a lot to update but we also had an incredibly busy week! time to go put the kid to bed.

Enjoy the pix and vids. these are from the last hospitalization.

Q sweats pretty bad when her tummy isn't being nice.