Sunday, June 27, 2010

I wasn't exactly planning on doing this since I really wasn't in the mood but I need to... Everything is just starting to take it's toll on everybody around here. It's been a very long and hard 3weeks. Riley of course is the only one who is obliviously happy since she doesn't know any different, lol. If only we could all be so blissfully happy...

I can't even remember if I knew the date yet when I last blogged but Liam's surgery is scheduled for Wednesday. He will have the dysfunctional ear tube replaced and we are just all praying it hasn't managed to fall behind his eardrum in the last 2weeks. We have been worried Liam had a sinus infection since before we left the hospital. The green stuff coming put seemed to be getting worse but it was hard to tell since he still had a little packing and scabs in there and stuff. On Friday morning we noticed a rash on Liam's face that didn't seem like any "normal" allergic rash he gets. When nothing was helping I had Wil take him in to the pediatrician on Saturday morning. When I told her about it when I saw her that morning we had both been thinking viral.... NOPE she thought it was probably Staph once she saw it. Ugghhhh! It was in his nose and when I talked to his ENT today he said he's probably already had it colonized in his nose so this is no surprise. What a surprise, one of my kids has yet another complication! We started oral and topical antibiotics. Within 24hrs there was a huge difference so that's good at least. His ENT today said too, that while he's in on Wed. he'll scope his nose and do a really good washout and get all the junk out. He can also take a look and ease my mind that everything looks as it should in there. This was just a huge disappointment although I don't know why I didn't see it coming since Liam ALWAYS gets something big after any major "stress" on his body. He's always had some major bounce back issue after every procedure he's had.

Riley is actually doing very good for the second except for some pretty severe insomnia she has been having. Idk what all that is about but hopefully she's just getting a new tooth and that's all. The truth will show itself eventually. Always does...

We have an insane week coming up that is jam packed with excitement and a million appt and things to do. I'm tired just thinking about all the errands I have to run before 9am. Riley will also see the hematologist and pulminologist this week so we'll see what they have to say. We have a big CARES meeting on Wed and all of our other coordinating agencies will be hopefully coming. I am definitely hoping we make some good head way there. But I'll try and update each day this week since we have a lot going on and I'm already tired just thinking about it!

Thursday, June 24, 2010

Busy Week

Sorry, I been the worst blogger ever this week. Things have been SO busy around here I haven't even had a second to breath much less anything else. But busy in a good way I suppose... No major issues more of cleaning up all the mess of issues that happened or had to due with us being gone for weeks and then coming home and having my whole Friday lost to Socializing with DCF, ha ha!

Liam didn't have surgery on Tuesday. The surgery center called and set it all up on Monday only to call later that afternoon and change there minds and say they weren't comfortable handling Liam and he needed to be done in a hospital. Great now you decide this! Anyway after a lot of screaming between the Dr's office and the surgery center. His office called to say his next hospital day is Wednesday at Wuestoff... That aught to be a blast! A whole new hospital and a whole new set of issues. Whatever, at least it's close enough I could walk there. That's definitely one good thing.

Nothing else really huge or pressing right now just trying to get a lot of things ironed out and having a lot of meetings with people. I'll update on all that later. Not really anything extremely medical.

Riley has been very happy to be home as always! This extreme heat has really been taking a toll on both kids. She started having some autonomic issues start sneaking up last night. Boo hoo, everything had really been good otherwise. I noticed her pee smelled horrible last night when I was changing her at midnight. She had had plenty of fluids, she is still quite puffy and pale though... Today her autonomic stuff was a little worse, but both kids had a runny nose first thing this am. I was hoping they had just caught a cold but it kind of went away and neither kid seemed to have any more cold issues. I did cath her before bed and she had small leukocytes which sucks since she has been totally negative on the strips for the last few months. So who knows if she's still acting funny tomorrow we will take in a UA and culture to the Dr. She will let us know she always does! lol

I will give a better update tomorrow, I promise. I just wanted to make sure everyone knew we didn't fall off the face of the earth!

Friday, June 18, 2010

Constantly Compeating

Yes, that would be my children! Always trying outshine one another with who can cause me to stress out the most that week. Liam didn't used to be so bad but he is definetly making his presence known now a days!

So todays fun adventure was waking up today and bribing Wil that if he would dress Liam I would take him to school. So, he did and then Wil came back in the bedroom and I was getting dressed for the day. When I came out of my room Liam was no were to be found. I asked the nurse who was in the baby's room with her if she had seen him and she said no. She had just returned from taking the baby for a walk... She had thought he was in our room with us. When she left with the baby he was sitting on the front porch and she thought we were coming right out. Well once we realize this like I said it was 10min. tops so I look out the front and back door and see nothing and no one. I ran in to get Wil and we each went in different directions. After about 5min. of looking I turn around and see Wil walking downthe side walk in front of the apts holding him and there is a cop about 10ft behind him and the cop car driving down the street....! I live in a complex that is basically a big oval. Each building has like five townhouses attatched to each other. The main entrance is about 100'ish ft off Wickham Rd.(a major 4 lane road) and we are almost all the way in the back of the complex too. When the police found Liam he had gone all the way across Wickham Rd.

All I could do was sit there and go OMG!!! How could this have happened?! We have taught him about roads and he knows never to wonder away. My god we have NEVER even let him play outside with one of his friends unless we are out there. And he's not allowed to go out of our sight even then! I was just in utter shock and he was completely non phased by it all. Even when the cop was lecturing him he just said, yes sir... He told them he went across the street looking for his sissy. This is so unlike him! Idk, what I'm going to do with these children! lol Some days you can't do anything but laugh, that and be greatful once again for nothing happening to him.

So, needless to say DCF was knocking on my door within an hour... Doing a full investigation. Just what I felt like doing today. They went everywhere and talked to everyone to try to find out who to blame for the child neglectfull unsupervision of a minor and child endangerment, Seriously!!?? Omg, what a joke. Thankfully, after talking to us she saw it was just no ones fault and said not much should come of it. Still... Then within minutes of her leaving one of our caseworkers from Yellow Umbrella came by and we had a 3 or 4hr meeting. She has been wonderful and it's so nice of these agencies to reach out and help us even if we aren't the exact client they are ment to help. We still need someone to help us. So, after everything was said and done we have a lot of things to think about and choices to be made. We also have a lot to work on.

Riley has been fine today I'm assuming, lol. Things were so busy I didn't have a lot of time with her. She had a wonderful nurse today and i know she would have told me about anything important. I took her temp before bed and it was only 100.4 so that was awesome! Way better than yesterday. I have work in the morning so I better get to bed. Here's to really hoping we have a nice quiet and uneventful weekend.

Finally Home! Thankful....

Only had to spend 11 days in this trip so all in all not bad considering. We have at least managed to bring her once almost routine month long stays to a much more do able 2wk average. Although I must say this was definetly one of the more 'intense'(for lack of better word) stays given the time fame... But it truly was one time things could have gone very different and VERY wrong for many reasons but thankfully I know my baby must have someone watching out for her! It was truly touching in the mitst of everything to see SO MANY Dr.'s and other hospital staff so worried, upset, and determined to help her as I did the other day. All because it was happening to "Riley". Of course we all know they would have sprung into action if it would have been any child. But in such a large childrens hospital it is so amazing to see how much they truly care about her and how special she is to everyone when they see a hundred children just like her every day. We are very blessed to be right where we are!

I just wanted to give a quick update since it is late. Her temp were better today. Still having some autonomic issues but to me they weren't as persistent as yesterday. She did go up to 101.2 before bed tonight but we will see how it goes. She was ready and HAPPY to come home as were all of us. Given everything she has been through I am glad they were more causious. Now is not the time to wait and see... I remembered she needed her TPN labs drawn today too so we pulled them off when her TPN was done. I was glad I thought of it with all the temp issues. When I looked at it her Hemaglobin was 8.1, well hello! Hopefully this explains the autonomic issues! She doesn't handle being that anemic well so if it is only 8.1 now, 48hrs after surgery, I can only imagine what it was a few days ago. Especially considering they purposly drew an H&H the night before surgery and I was shocked and thrilled to hear she was 10.5 then... That's a little on the higher side of her norm. I should have know since she has dried up blood all matted in the back of her hair in PACU and it was all over her body. I had been hoping what was on her was bedadine but it actually washed off a little to easy the other day. I have no idea what they did that caused her toloose so much blood since no one spoke a word about it to me. It doesn't matter now though, I am just happy that hopefully this is what is stressing her body out and causing the autonomic issues rather than an infection.

Liam is being a trouble maker to now. He must have heard about Riley's escapaid the other day and desided he needed to try to get some more attention to. Wil took him for his follow up to the ENT's office today. Apparently something happened to his Left ear tube and it flipped all the way out and around and has almost fallen into his ear drum, Only my children! Of course I didn't even know it was possible but it needs to be fixed now. So, they have schedualed him to go back to surgery on Tuesday to have a new one put in. Hopefully it will be as simple as it sounds. Otherwise they said everything looks good. There is still a small amount of packing in his nose and they said he should be able to breath much better once it all comes out. So, that was good to heat. It's hisown fault since he wont use the saline spray it takes longer to fall out and heal as well.

But all in all I'm just glad to be home and a little tired, LOL :) What can you do but be thankful as I said things could easily be very different right now...

Wednesday, June 16, 2010

Day 10: Shato APH

Yes, still here... We had the best of hopes for going home today. Everything was going according to plans. But I noticed she was feeling pretty warm early and sure enough her temp was 100.6 and we desided to just watch it for awhile since we had to wait until after 4pm for the TPN to be delivered. It didn't seem to want to budge and held pretty steady around 100.6 and 100.7 the lowest it went all day was 100.2. It was 101.1 before bed. Whithin a few hours of going to sleep though it was down to 97.7R. We are all kind of scratching our heads...

She looked great as usual all morning definetly not showing the effects of the day she had yesterday. Riley is so amazing, she never lets anything stop her. I love that girls spirit and hope to have half as much strength as she has one day!

The Resident was all ready to send us out the door and wrote up the paper work. The nurse however had called the attending to tell him about her temp and he was much more nervous and asked what I wanted to do. I said lets see how she does over the afternoon and we'll go from there. We have a long history with this resident. She took care of Riley for almost the entire month she was here the first time as a baby. She has also been on with us occasionally through out and has a LONG history with her. I can guarentee you Riley is one of those patients she will never forget and changed the way she is as a doctor... This paticular attending has also seen Riley before, he took care of her when she had the urosepsis. He was the one who told Dr. Ulrich he didn't think she really even needed to be admitted going off his initial exam and "how good she looked" he was trying to send us home the next morning. I thought he was going to fall over when he saw her blood culture growing out 2 different organisms and it showing she was bacteremic. Needless to say I think he knows better this time than to "blow off" one of her fevers. The resident was telling me later she wanted us to stay until 8pm or so to watch her but he wanted to watch her overnight. She said, if I pitched a total fit he would let us go but... Of course staying til 8 would't work anyway since Wil had a class at 6 and Liam had a 9am Dr. appt. So, we all comprimised and had them go home and agreed to have him come back in the morning to get us after Liam's appt.

Truthfully I have no idea what to do... I asked Wil what he though he said he doesn't know either. I don't think anyone does. She has had a very stressful few day and her autonomic issues could be acting up due to that. BUT the main issue is she had had that femoral line in for over 8 days. This is not good. After about 5 days your risk of infection gets extremely high and goes up everyday there after. So, there is also just as good of a chance that this could be a massive infection brewing and I do not want her new line compromised! So, we are all at a loss. Even at this very moment I am unsure what to do tomorrow. Another major issue if we go home is it's almost Friday and Riley ALWAYS likes to act up on Friday nights. It's murphy's law! To top it off her pediatrician is on vacation so we are totally on our own and would have to bring her back to the ER here if we had any issues.

So, just say a prayer for us that we will be able to know what the right thing to do is without compromising her health. I'll update tomorrow when we make a desicion...

Day 9- Getting to Comfortable

Sorry I was unable to post the update last night the hospitals wireless was down.

The everyday, everyone has certain things or activities in their daily life that just become so normal and even routine you don't even give it a second thought. Some things are no big deal like brushing our teeth, doing the laundry, cooking dinner. However we forget some everyday things we do can pose major risks due to us becoming so desensitized by doing it everyday. Like driving to work everyday, your chances of being killed or seriously injured in a car accident are ridiculously high but how many of us seriously think about that risk every time we get in a car.....? You don't, you don't think about it until it happens to you or someone you love. Then you can't forget the reality of it anytime soon.

I was very quickly knock back down to our reality today with three little words "Open Heart Surgery". Riley has had over 15 broviac placements over the last year, she has also gone under anesthesia or sedation at least twice that many times. My daughter going to surgery, as sad as this sounds, is just an everyday thing.... We truly forget the risks and just always think everything will be fine because it always is. I woke up just like everyday with the doctor in the room trying to talk to my half asleep self. We talk about this and that and how we will be back quickly and then get everything wrapped up to go home the next morning. After he left, I ran downstairs as fast as possible to quickly get the coffee I desperately needed before they came to take her to pre-op. As I came back through the doors they tell me they called for her. I quickly change her clothes and we were off. So much for my shower... :( Downstairs it's business as usual everyone ohhs and ahhhs over Riley and says how big she's getting. Surgeons are running behind as usual so we had a last minute switch and one of the other surgeons was going to do it. Whatever....they all know her. I give her a big kiss and off they take her to the OR around 10am, finally... I head off to the waiting room and make myself comfy and get on my laptop. It had been about 30 or 45min and I knew it was a little longer than usual but nothing much, didn't think much of it and was just expecting the surgeon to come out any time. Next thing you know the doors open and I see him motion to me to come with him, rather than him coming over to me like they normally do and tell you how it went. So, I quickly grabbed my stuff and walked though the doors not thinking much of it. He then begins to tell me he was able to get it in the left but kept bumping into the stent. At that point he tried to get in the right and was able to get the guide wire in but once he threaded in the catheter it pushed the stent into her heart. That's when it started to feel like a dream, this couldn't be happening.... He then proceeds to tell me she's still in OR and completely under, he called the IR(Interventional Radiology) Cardiologist but he was in his office seeing patients, he was coming over as quickly as possible, he was going to try to "fish it out" going in doing angioplasty again, if he couldn't which he really didn't know if he would be able to, that meant she would have to be opened up and we would have to place her on bypass while they went into her heart to get it.... This is at which point I went numb, this could not really be happening, this was just a broviac placement.... and now my baby, who had a no cariac issues a few weeks ago, was going to have her chest opened and her heart cut into! Not to mention this stent is metal it could easily nick her heart or an artery when bouncing around and she would quickly bleed out. It felt like someone had just slapped me into reality. This Dr. mind you has always been my least favorite because while he is actually a quite competent surgeon he has NO bedside manner and he's just a complete butt head most of the time. He was almost in tears while telling me this, he felt horrible. After all this was RILEY. I was the one telling him it's ok, it was a complication and it is a risk we knew was there and it was nothing that was done wrong. We can't always be lucky. He said he would let me know when David (Cardio IR) showed up. I was in utter shock when I walked back out. I could barely manage to get my thoughts organized enough to tell the receptionist I would be right back since I needed to find her dad. I think it was the shear fact of everything catching me so off guard. This might be one of the worst times I have been through. Mind you Riley had had much worse happen many times over but NOTHING has ever blindsided me like that.

Yes, this was our morning and it was crazy. David ended up showing up and coming to tell me that once he looked at it under floroscopy real quick it had moved into the pulmonary system already. He was hoping to take her to cath lab and maneuver it into the pulmonary artery. It would be able to sit and stay there for awhile without doing any harm. Problem was with stents in a child this small as they grow the stents will need to be re-sized. Our hope was at least in the pulmonary artery we can forget about it for a year or two. The other issue was some one was in the middle of a procedure in the cath lab already. It would be at least an hour before they were done and the room was ready. So, she had to be kept in the OR under general and on the vent until they could move her over. David finally came to find me around 2:45pm to tell me the stent was safely sitting in the Left PA and this was probably the best outcome we could have hope for. We are hoping the stent being in the SVC for a few days was able to stretch it enough that for now she will be ok along with starting the blood thinners.It will have to be for now anyway since we are kind of back at square one and can't replace the stent in her SVC while her Broviac is in....

She made it to PACU by about 3pm. So she was kept under anesthesia for over 5hrs. Then we had the lovely task of keeping her laying flat for 6hrs this time! Yes, all that fun I was hoping to NEVER repeat again after Friday. We made it back to our room about 12hrs after we had left. But yet so much more thankful to be "home" than normal! Speaking of home they are still planning on letting us take her to our real home today!!! They still have to pull the femoral line since it was forgotten about with all the chaos yesterday. You know it's crazy, this has been a very eventful stay even for us and even with everything that happened yesterday, today still just feels like every other normal day in our lives. This is now our world, OUR norm, we face life threatening issues everyday and someone walking by us in the grocery store would never have a clue what are life is REALLY like. Just be mindful the next time some one cuts you off in traffic or gives you an attitude at the grocery store for no reason. You never know what someones life is really like and what they are dealing with everyday just by looking at them.Just another day..... but ever so grateful to have another day!

Monday, June 14, 2010

Day 8....

Where do I even begin...? Sorry it's been a few days since I've updated. I ended up going to work on Sunday so between getting up at 4:30 in the morning and not getting back until 10pm I was a little tired, lol. Things around here seem to be going along as planned. The best news is we are hoping to go home on Wednesday!!!! We can't wait!

Riley started receiving the new Lovenox shots(blood thinner) on Saturday. We had to give her a higher dose for treatment therapy for a few days to make sure all the clots she had were gone. This worked great and her blood draw for levels last night showed her therapeutic range was great. So, now we had the all clear to stop her shots for the 24hrs that are necessary before she can have surgery. She is scheduled to have her broviac reinserted tomorrow at 9:30 so that is great news. Then we wait 12hrs and she can re-start her Lovenox injections but at a lower prophylactic dose. She will have to continue these twice a day for an indefinite period of time. That is what we are being told at least... The hematologist most likely wont return but we are supposed to follow up with them within a few weeks of discharge. So, we will see what that brings and I believe we will see Cardiology in 6 wks to follow up on the stent placement. It does kind of suck that we will now go from seeing cardio every 6mo. to a year to now having a lot closer follow ups. Not to mention adding the hematologist to our list of people we have to visit regularly. As if we didn't already have enough specialists! She now has over 15 specialists that CLOSELY follow her. Sigggghhhhh... I guess we'd be a lot worse off without them though.

I am still hoping they will get into contact with her geneticist tomorrow and he will stop by and see her. He hasn't been able to see her since December due to him being on medical leave and then we had to miss our appt. a few weeks ago. We shall see... I am also hoping if all goes according to our schedule we I might be able to get them to let me "sneak" Riley out to her Nephrology appt. that is at 2:30 tomorrow. Since it's only a few blocks I can walk over and it will save me a whole trip over here and besides she needs to have her follow up anyway.

We did get one piece of good news today. Our favorite nurse of Riley's in the whole wide world is ready to come off of maternity leave. She will be returning to us on June 25th. Thank god we missed her! And the best part is she works every weekend! No more worries about me being able to work. We'll just pretend there is no bad news and continue living in denial as I am now!

Please say a prayer that this line tomorrow goes in easily and without incidence. The Cardiac IR the other day told us Riley's right subclavian vein has officially become to narrow from scarring and he was unable to use it. So we just need nothing to happens to hinder what we have left. God knows too we have to get this line in in order to get the femoral out and also because Riley can't take anymore of these peripheral labs/ She has bruises and needle marks covering her entire body. Sh freaks out anytime two nurses walk in the room together since she assumes they are here for her. I'm getting tired. I'll try to update tomorrow after her surgery. Thank you to everyone who have sent up all the many thoughts and prayers for my baby!

Friday, June 11, 2010

Evening of Day 5- Long Day

Sometimes when things get quiet I will catch myself for literally a split second going, omg how did this happen? When did this happen? Last I knew I was pregnant and expecting this wonderfully healthy baby girl.... Then BAHM like a ton of bricks reality sets in. Sometimes I wish I didn't know almost everyone in this entire hospital. That I could walk through the lobby and not see at least 10 people who know us every single time. Don't get me wrong, I couldn't have made it this far without the amazing and supportive "family" we have made here. Everyone has truly embraced us and cares about Riley and our family as a whole. But they are all in love with Riley... Some days though you just wish you weren't that 'Family" some days you want to be the the one down the hall who is just here because "Sarah" had to have her appendix removed and then you go home and life goes on. To us, our world has stopped and everything around us outside "our world" continues. Some days you are to exhausted mentally and emotionally more so than even physically.

But one good thing I try to always remember is something a nurse told me in special care when Riley was just 4wks old. We were still in shock over everything that was happening. After all how could OUR BABY be sick. I kind of took it as an insult at first like she was belittling our situation, but the more time has past it is so true and it's probably the most helpful thing anyone has ever said to me during all this. She said, One thing about being around here is someone is ALWAYS having a worse day than you, someones child is ALWAYS sicker than your, and someone ALWAYS has it worse than you.... It is so true though! Right now, today as hard of a day as we had someone watched there child die in this hospital today, someone is having to make a choice that they know most likely will kill there child but it's there only hope, and someone found out there child will die within days or most likely not live through a surgery. Someone is ALWAYS worse, so I always am reminded of that when faced with a hard day. At least living in this world will keep you grounded and make you thankful for EVERY SINGLE DAY! That is something I am forever grateful for. We still have HOPE!

Riley looks much better now she is quite hyper and having a hard time sleeping actually and is busy over there giggling and dancing. Probably because Wil and Liam are sleeping over here. Liam has been screaming all night for me so I finally let him stay. They are nice and don't really say anything anymore to us since they know we don't do it often. All three of us sleeping in this tiny cot is fun... Anyway, once I got to PACU I found out they did put a special pressure dressing on her leg but that she wasn't able to sit up or move her legs for 4hrs... Yeah I looked at the lady and told she better go find me some drugs for her then and when she looked and found nothing ordered I then told her she better get out the soft restraints. She laughed but I was so not joking! It was a nightmare I literally had to stand next to her crib for 4hrs and lay on top of her and at times get slapped in the face and my hair pulled out when she was sick of it. Finally at 5pm we were able to let some of the pressure out and she was able to move around. She was such a mess though she wouldn't put weight on the leg they did it on but her other leg has her femoral line in it, her pulse ox on her foot and a peripheral IV in that foot. poor child.

So, now that this has been resolved we still have two big issues to handle. She still needs to get her IVIG and she needs to have her broviac replaced. Other things that will have to be addressed are what's going on with hematology and there plan once she's discharged. Also I was trying to get them to contact her geneticist/mito doc to get his blessing on everything that has been going on. Since we were gone all day and it is , of course, Friday! Everyone was gone for the day by the time we made it back to the floor around 4:30pm. And everyone knows nothing happens around here over the weekend not to mention they never sent her TPN orders to the pharmacy. So that means at the very best the earliest we can leave is Tuesday evening. Blah............. and that's if everything goes exactly right. I'm not counting on anything at the moment yet. This is ridiculously long and rambaly already and I'm exhausted so I'm going to sleep on my tiny little section of the cot. LOL I post more as soon as I know more!

Riley in PACU before they told me her legs had to stay flat too!

She is so swollen now! You can see the special

pressure dressing on her left thigh, it was actually pretty cool.

And of course being fiesty as usual and taking her EKG leads off to play with them.....

Afternoon of Day 5

I'm sorry for not updating sooner it has just been very busy around here and there was no time. Between dealing with Riley and the multiple doctors and such plus Liam and Wil came back yesterday evening.

At first yesterday they were really planning on sending her home like this but I kind of had a fit... There plan was to give her IVIG today and then go home. As long as the line was working to run TPN deal with it basically was the attitude. This was definitely not cool with me and I knew it was not the right thing for her. Things kind of inched along all day and we didn't really get much done, until ID came in that is. They gave her the all clear that we are confident she doesn't presently have an infection. So, she was more than happy to tell cardiology this news. Who in a little of a whirlwind agrees to call the interventional radiology cardiologist and find out when he wanted to cath her. We figured it would be Monday or something but about 30min later I walked out to the front and the Hospitalist caught me to tell me they wanted to take her first thing in the morning. They also said however her old broviac had to be removed first in order for them to cath her properly. By this point it was 6pm and we would need an Echo again in the am to confirm it hadn't moved or anything with the removal of the broviac.

So, we were able to get a hold of the surgeon who also happens to be our surgeon so he said he would make sure it got done for us at some point that night. He came by before doing it and said see I knew this needed to be addressed, that's why I wouldn't pull the line the other day until this was looked into. He said, him and I both know there are only so many places she has that can be accessed and if we screw around and loose an access point the price could be unthinkable. At this point, much to every ones dismay, If she didn't have access she would die. That's just the way it is, so we HAVE to be careful with what we have. Just because hem/onc kids use lines that are clotted doesn't me she can. They might need there lines but they don't depend on them everyday to live. So he ran off saying he would be back tonight to do it and would remove it in the treatment room. He kept his word and showed up about 1:30 in the morning. This is why we had a long night of waiting. They gave her a local and a dose of morphine and wrapped her in the papoose. It was in good but we managed and got back to bed around 3am. It had proceeded to gush some blood right after he removed it ( He let me stay and help) this was most likely due to the pressure from the clot. So, we had to put a pressure dressing on her. Which she didn't like and kept waking up all night to pick at it. So she woke up in a lovely mood this morning, sarcasm intended!

They were in early bombarding us with new drs. and people. They had her down to cath lab by 10:00am and had her IV versed ready for her! LOL They then preformed a sedated echo in the cath lab and removed the clot and placed the stent. She did great and apparently it was actually a significant clot. It was a 9mm clot.... So hopefully now that the blockage has been removed she will feel better and the stent will help us. The IR was awesome and very helpful. Another new friend, LOL. She is still in recovery and they just called me to be with her. There are still many unresolved issues. I will try to post again tonight when things are more resolved. Hopefully tonight will be a little calmer. *Crossing our Fingers*

Wednesday, June 9, 2010

Day 3 APH

So, after a long and eventful day. We still kind of didn't get far. We do know she has no clots in her neck or surrounding veins which is good. Functionally her heart looks good right now. Apparently the clot is smaller than then they expected however still of significant enough size to be officially partially blocking her SVC as we expected. The clot looks like it is embedded in the tip of her broviac and that is why we were having the issues with it. Hematology is sitting on all of this for the time being and waiting until all her testing comes back to decide what to do. The consensus is she will probably need to be started on some form of a daily maintenance blood thinner like Lovenox injections. But we will address that more later. And if one more Dr. tell me how we really need to think hard about getting her off of TPN I'm going to scream! Like they think we have just thought it would be a fun idea to leave her on it for over a year. Ummmm NO, it's a total PIA and one I would LOVE to be without but am grateful for because without it Riley wouldn't be alive right now.
So the plan for today was to TPA the line and see if that would clear it enough to get blood return. After two doses and letting the second one dwell for 2hrs. still nothing BUT it flushes great still....
From ID's standpoint given that her fevers have resolved they are happy. So, this most likely means there is no infection thank god! I think her autonomic issues were just out of control when we were using the line and it caused the temperature elevations. Now we just have to convince cardiology of this! They are not sold on it... We still need to do her IVIG at some point too since it was due today.

I was out at the back nurses station talking to one of the GI's, since they are all like family to us, and this is her first ever admission not to have them taking care of her. The hospitalist saw me and said ohh good I wanted to talk to you and told the GI she had a question for her too. She actually asked her, "can she be sent home and run her TPN through the line even with the clot?". What!!!! SERIOUSLY? I was not happy at that point and as we are walking back to the room she tells me she was thinking if the TPA didn't work(it was dwelling at this point) she would run the IVIG tomorrow and then send us home! I was like NO, we can't go home with a halfway functioning line and this clot has to be dealt with! So, once I talked some sense into her she is going to try to get ID to convince cardio she doesn't have an infection and see if they can to the angiogram to remove it. So we shall see how that goes tomorrow. But I'm not leaving here without a fully working line or risking loosing this one completely if it can be saved...
The other issue is her swelling and elevated BP's. I brought it up to her yesterday and this am she had thought they were fine but I told her about how they were elevated all day and she was mad no one called her. She ordered Riley's renal ultrasound for in the morning since it was time for it anyway. Of course the nephro I don't like is on call this week so maybe we can wait til Friday and see if her Nephrologist is on then. She is wonderful and will take care of this issue for us. I also happened to run into her Pulmonoligist later who is another very close "friend" of ours. Riley hasn't been able to follow up with him in forever due to her constantly being in the hospital. I told him how she was still on her caffeine and how her hypoventilation seems to have gotten and gets bad when she's sick or to fatigued. He said he would stop by for an official visit tomorrow. We mine as well get everything done at once, less appointments later for me!
The only other thing of note today was her CPK level came back elevated quite a bit. Everyone is kind of scratching there heads about this one. She was just kind of pale and really tired all day but overall in good spirits. I'm assuming it was from everything yesterday. They called to tell the hospitalist the TPA didn't work and they said we'll deal with it tomorrow. So for now Riley just fell asleep and Wil and Liam went home for the night because Liam really wanted to sleep at home for a night. For tonight we are tired but can't ask for more. It's just like I told Liam the other night when he was crying to go home and sleep in his bed, but he wanted me and sissy there too. It doesn't matter where you are home is where your family is whether that's in a tiny hospital room, at the RMH, or at your house. As long as we have each other we will make it through this!
Here are some pictures of the kids from the last few days:

Liam sleeping after his surgery on Friday

Playing on the bed yesterday morning

You can see how puffy her face is in this one

I love how she just sits there like a big girl

with her legs crossed

Getting our 2hr Echo, I was desperate to find

anything to entertain her!

In the PICU right after getting her Femoral line

Completely Snowed....

Tuesday, June 8, 2010

Quick Update....

Our favorite intensivest and someone who has saved Riley a few times before, Dr. Shirkantin actually agreed to put a femoral line in Riley... She is actually the person who put in the two other femoral lines she has had in the past. So, Riley is back in the PICU now sedated and having the line put in. Since Riley lost her peripheral IV around 6pm tonight it was not pretty watching her get sedated. She is getting older now and this whole trip has really been hard for the simple fact that she knows this time. Every time something is coming she know, Every stick, everything and anything. It was so different when she was a little baby and forgot within the hour. They had to give her intra-nasal versed and 2 big shots of IM Ketamine. Those shots hurt bad and then they tied her legs down and she was still hysterical. Ugghhhh, and in the big picture this is just one bad moment although it kills your heart it is nothing in the grand sceam of it all.

Ok, they were done quick! All went well it took 5 shots of ketamin to end up sedating her though. She got 3 more after I left... She is now resting comfortably though.

As I said the Dr. here knows us well and looked at me before and after and said you know this isn't good.... I said yes, She said you know what this could mean.... again I nodded yes. She says, you know she's going to end up with no access left.... Again I just said yes, and nodded and I just continued to rub Riley's beautiful soft hair and stare at her sweet little face. We do know although some days we wish we didn't what a battle we face. Some days we let it fool us but then something like this always sends you shooting quickly back to what has become our reality.

We still haven't gotten the official word on the Doppler study or the echo but the hospitalist said just from looking at the doppler films unofficially there is definitely a clot but that's all we know. They talked to ID and they'll be by tomorrow to see us. Everyone also decided it was time to call in the Hematologist to see her. He came by this afternoon and poor Riley was so tired... She was a mess by the time he left. Funny thing is he thinks he was the one who took care of me when I had ITP as a baby. HaHa! It's a small world. We are thinking the best way to go might be to try to give her some sort of medication that will help to slowly dissolve the clot but this will be a "team" decision The team being all of her multiple specialists. That aught to be an interesting talk... He is going to run the full work up on her for all the clotting and bleeding disorders. All I know is they just took almost 25cc's of blood from her not to mention the amount in the bed after the line. If she didn't need a transfusion before my god she's going to need one now!

So, now as we are sitting in PICU Riley is comfortably resting and I'm exhausted hopefully in a few hours we should be able to go back to out room upstairs in the towers. I went to tell Wil and Liam the good news and they were already passed out. That's a good thing I'm sure since Liam has been having a hard time with all of this again. Just as how Riley has become older and more aware so has Liam. It seems like every time it gets harder on him but it's even harder for him to be away. It's still almost impossible to keep him at the hospital but at least with him staying at RMH(Ronald McDonald House) I can see him multiple times a day and he can see his sissy too.

Hopefully we will know more in the morning and I'll try to update this as soon as I get a chance tomorrow! Thank you to everyone who leaves us comments and thoughts it is so nice to see all the people who care about are family!

Day 2 APH

I'm so sorry I haven't updated sooner but I was waiting until we heard from the surgeon. So, I just wanted to update everyone quickly. We don't know a ton at the moment and we are still waiting for testing to come back. Riley possibly has an infection. We aren't sure and can't be at the moment. What we do know though is Riley has a blood clot in her SVC(Superior Vena Cava) in her heart. It has probably been there for a little while but the problem is that it is now partially blocking her SVC. The SVC is the part of the heart that pumps blood from the top half of the body into your heart to be oxygenated. This is why she has been swelling in her face and arms so much. We just thought it was due to the infection since she does that with infections. We don't know the extent of the blockage yet they just did an Echo of her heart that took 2hrs. and know are about to do a doppler study. I spoke with cardiology before the echo and she said we will need to remove the clot and place a stent in her heart but we can't risk the stent getting infected since a stent can't just come out... Chances are the clot probably harbored some of the infection from the MSSA infection and that is why she has continued to have fevers over the last 5wks. It's the ID(Infectious Disease) docs choice on how to best treat that. They will probably be able to remove the clot through angiogram so that's good. We stopped using her line yesterday evening and she seems better. The swelling hasn't gotten any worse and she's not constantly mottled. Her fevers have even gotten better. The stress on her body was probably causing her autonomic issues to be worse. She has a peripheral IV in her foot that we are thanking god she has to at least keep her hydrated she is getting rather cranky now without her TPN since she's hungry. That's the other issue, surgery will have to decide on how to place a temporary line. We are going to have to have to find a way to give her TPN for a week or two until we have safely have cleared any infection and can place a new broviac. So, once we get all the testing back and have some idea of a plan I'll update tonight. Things have been changing by the minute today so I'll let everyone know when I know more. Thanks to everyone for thinking and praying for our baby!

Monday, June 7, 2010

About to Leave....

We're almost packed up and about to head to Orlando. We did make it to our goal of today at least. Riley was rolling around and her monitor was going off at about 6am. By 7am she was up to 102.2 and is looking officially bad. But not the worst I've seen her so that's good!I gave her Tylenol and by the time we made it to the pediatricians at 8am she was 101.8. So, she must have gone up higher after the Tylenol. The hospitalist at APH agreed to direct admit her so that's good. I still can't get even a drop of blood off the line... So, we will see what they are going to do and we will hopefully know more tonight. At least I like the hospitalists, they're really nice to us. I'll update tonight when I know more. Thanks so much everyone for your thoughts and prayers! It means a lot to us!

Sunday, June 6, 2010

We Made it Through Another Weekend

but just barely as usual.... Who cares though! As long as I make it home from work on Sunday night that means we are in the clear. I got up for work this morning at 5:45 and within minutes heard Riley screaming. This is usually never a good thing... Not just mad but crying and screaming. Her temp was almost 101. She has no cold symptoms. her throat is fine, and so is her urine. :( I thought for sure we would have to take her in today for a septic work-up but this is always a nightmare on the weekends! It has been made clear to me that Riley needs to be taken to Orlando(long story I won't go into) so we are basically stuck going to the Arnold Palmer ER. Anyone with a chronic child knows ER's are no place for them if you have any choice what so ever. Her fever still seemed to be autonomic today even though it was more extreme than her normal autonomic temps but it never actually "spiked". The highest it got was 101.9 when she was awake but, even with no meds, as soon as she would lay down or go to sleep it would go into the low 100's or high 99's but as soon as she starts moving around and playing again it would start going up. We know she is septic when she gets very shaky and her temp continues to go up no matter what she's doing even if given Tylenol. This is a very typical pattern for her especially since she started having low heart rates on Thursday night, that's always a big warning something's coming within a few days. She stays in this mode for so long before hand now that the docs don't want to do anything until we actually see a clear answer even though we know it's coming long before it hits. That kind of sucks for her, but we also want to minimize treating her with IV abx as much as possible because before to long these germs are going to start getting resistant to the drugs we use. Since we can't get any blood off her line to culture it I can't imagine us not being admitted tomorrow. That and the fact that the normal abx that they give for suspected sepsis is a one time a day and covers all drug, Riley
doesn't tolerate it, of course. Anytime we truly suspect a line infection or sepsis it's an automatic admission for 48hrs for 2 different abx that have to be given multiple times a day....

Basically, if we make it through the night at home I will be thrilled! If she spikes we don't have a choice we have to go right then, that's just the way it is day or night. I'm hoping we can make it until 8am when I can just show up at the pediatricians office and have her call Orlando to have her direct admitted. We already have our bags packed at least. I absolutely hate being in this situation because it's so hard to know what the right thing to do is, I wish I wasn't always the one having to make these calls. It is like tempting fate and you can only push your luck so many times before something bad happens.

Liam is still doing really good! Everything is still really swollen in there and he can't breath through his nose but he's a real trooper. He never complains but is very excited for when his nose gets all better so he can go swimming again. Especially since his ears are fixed again.

It has been a long few days but we made it through Liam's surgery and I was able to work my two days at work. Even with the impending admission, I couldn't have asked for much more. This is just how it goes around here. Always waiting for what's coming next since something is always coming. I did have several things I had needed to get done tomorrow but I guess I'll find a way somehow. I still have to go finish packing my clothes. It's just nice to pack them myself! It's always interesting when Wil has to pack my clothes for a week. You never know what you'll be wearing, LOL! Then I'm going to try and get some sleep! Say a prayer for us that everything gets handled and it's nothing to serious.... Thanks Everyone!

Friday, June 4, 2010

Surgery Day!

Thank goodness this day has come to an end... It has been a long one with a lot of anticipation, more so for Wil and I of course, but it actually turned out to exceed anything I could have hoped for!

As I said on FB Liam did really awesome, I was so proud of him he really managed to keep it together until the anesthesiologist came in to which he then started literally jumping from one place to the next and getting extremely hyper but you could tell it was all nerves. We had a round of Versed and Tylenol show up quickly after that and the world was happy after that. Aside from him staying up from 2am on crying due to him needing a drink, ya he does not handle going without fluids. Once he woke up at 5 and Wil gave him a bath and he got his clothes on all by himself and then came and woke me up saying, "come on mommy let's go get my nose fixed". He was all excited and it was so cute and sad all at the same time.... I guess all this stuff with Riley is rubbing off on him since I couldn't believe how calm he was and we've been telling him about it all week. He even sat in Pre-op and colored, sigh, just another day around here...

The anesthesiologist was actually very good and even knew what Mito was without me explaining it. We ended up giving Liam no gas this time and following MH(Malignant Hypothermia) precautions and he did great! It was the first time I have EVER walked into PACU and not been able to hear him screaming long before we got through the doors. He was very calm and sleepy and HAPPY. He actually smiled at me. It was the biggest relief ever. The doctor said the surgery went great tubes went back in with ease and the holes were even still open so we were able to not have to make yet another spot in the eardrum to insert the new ones. As far as his sinuses he said there was definitely marked changes in the tissue due to all the chronic inflammation and infections. It was definitely a good thing we did this and he should be able to finally breath from his nose and we are still hoping to get that at least 50% decrease in infections. You could hear him actually breathing from him nose in PACU. I'm so excited for him since I know how much better he will feel after this. Everything is completely swollen tonight and his nose has been oozing blood since the surgery but that's to be expected for 24hrs. He is still handling all of that well. He just carries his box of tissues around the house with him. He is so funny!

Riley is still being Riley. I had called GI and left 3 separate messages for the nurse last week including one yesterday morning saying we were in O-town if they wanted to address the line issue. No call... This has been going on for over 2wks that we couldn't get a blood return on it. It runs fine though. So, apparently the GI had Dr.'s calling him since we were arranging things for her next week so his nurse call me to find out what's going on. This was shortly after we got home. She says she'll call me at the end of the day. Ok. nothing unusual. She calls back 5min later and said D. Mehta said to take her to ER at APH to have the line TPA'd. I started laughing at her and then flat out refused! Liam had just gotten home from surgery, this has been going on for over two weeks, and the line is still running. I told her to let him know I would deal with it on Monday but there was no way I was going to Orlando today for that! That was my funny moment of the day!

I am so tired I can't see straight. But I'll finish the update tomorrow and add my pics in. Thank you to everyone who said a prayer for Liam today!

Wednesday, June 2, 2010

From the Depths of Temper Tantrum Land

~~~~Warning It actually turnedout really long you are warned!~~~~
I just wanted to give a quick update on the day since it turned out semi-productive. And yes Liam's steroids seem to be giving him full on roids rage this week but doing nothing for his group... In fact he's coughing more today than yesterday. But if he doesn't sound better by Fri. morning there's no way it would be safe for him to go under anesthesia especially given his long history with croup and reflux. I've got to find time to squeeze an appt. in for him with the pedi. tomorrow and she can make the call since I completely trust her and it's one less thing for me to deal with. Riley needs to see her anyway for her weekly appt. She is actually coasting along same issues no better or worse so on word we go all the while holding our breath for the bubble to burst. Her insomnia is definitely persisting. She didn't nap all day and was asleep by 4:30 and hasn't woken up since. She did the same thing last night too.

As far as today we had a little change in plans, nothing new for us :) Someone called my phone about 3 times in a row which woke me up at 9am this morning (I do the late shift with the kids and had been up til 2am Wil gets up at 6am for the morning shift with them) turns out it was the Child Find coordinator at the school board. Liam was scheduled to go for his pre-eval for his IEP in late Aug. since this was there first available spot but they had a cancellation today and said if I wanted to come down come NOW. I swiftly took the appt and canceled our Orlando appt for this! So, off Liam and I ran, down to the school board office in Viera. Omg! That place is the biggest maze I have ever seen! Wow, anyway the teacher actually doing the eval was very nice and thankfully explained everything and was very realistic about it all. This was a good thing since it is going to be a nightmare once Riley hits the school system... That's all for another day and another post though!

I love how it ALWAYS starts. We are talking and Liam is over and playing with things quietly and sitting in a chair. This women of course is doubting why my child who looks, sits, and talks all quiet normally is even there for an IEP eval but she is just going to do it to humor me. Now, fast forward to us leaving with Liam in his pink Polo shirt, Nike's, and only a diaper and (having to walk through all the maze of the school board like this to get out) her telling me "wow you certainly have you hands full, I don't know how you do it" to which my response is, "you should meet my daughter! She's even more fun, LOL" . So typical it's beyond ridiculous!

Bottom line:
*He has the vision of Bionical man and can see better than is almost possible,
*He did pass his hearing test BUT I don't think that is accurate since he has failed it in the right ear twice now at the ENT's but it doesn't really matter since the loss isn't enough to need a hearing aid so I'm not worried.
*His speech is great he speaks in complete sentences and only has issues with L's and a few other letters but that's expected until age 5 she said.
*His articulation is way ahead of where a child his age should be. She started to ask him things she thought there was no way he could answer and was on about a 1st grade level. He was acting like he was board to death because it was so easy. His IQ is actually quite high she thought! :)
~~~Now for the fun~~~
*When she told him to draw a picture of mommy's face he was only able to scribble lines all over and make a half hearted attempt at a circle. She was very unhappy with his writing considering he is almost 4. She was almost shocked in fact... And I have to say I don't think it was him goofing off since that's all he ever brings home from school for drawings and such. Also other OT school related issues are he still can't button or zip his pants or even wipe himself in the bathroom.
*For Gross motor he was sitting in the W position the whole time they were on the floor working. She kept trying to correct him but he would always end up like that again next time he sat down. He can't stand on one foot for more than a second if that. And most of the time he can't walk more than 10ft without tripping over his feet, falling, or swaying around.
*Sensory is still an issue for him. Not as bad as it used to be but still a large factor. There are multiple behaviors and thing like noise issues, texture issues, and other sensory seeking type behaviors.
*And or course saving the best for last... His most prominent issue of all. About 15 min. in Liam started fidgeting. By the time she was done 45min later he was literally bouncing off the walls. Getting crazy and making loud and inappropriate noises and refusing to follow directions mean while he had already had one accident( he had peed in his original clothes on the way there so this was the back-up set) and had to go potty two other times. By the time we were leaving he was trying to sneak out the door and run down the halls. She was surprised how quickly started acting out since usually the novelty of the new environment and person lasts at least a little longer. These are preciously the behavior issues not only us but Liam's school have been having. It's not anything we have been able to control with any kind of discipline or the like and it's not like he is like that all the time. The only thing that works is being one on one AND having constant stimulating activities. Obviously not realistic in any situation so we need help! His behavior issues seem to be due to a number of factors. One being his medical issues when he is fatigued or having an "off day" there seems to be a spiral effect and instead of saying he feels bad or laying around he is acting out or getting hyper. Second, given the long family history of ADHD it is not a huge surprise it looks like this is most likely a factor. He was acting very typical for ADHD today apparently very short attention span even for age, unable to sit still, if he wasn't being stimulated he would act out by yelling or banging toys or something, and he was distracted by every little thing. This is such a typical situation for us though these are everyday struggles. The third issue that factors in is behavior issues due to the emotional aspect of everything he has been through in the last year and a half. But all together it makes for a lot of bad behavioral days where he could easily fall through the cracks in a busy classroom and fall behind the other kids. I REFUSE to let this happen especially after it was confirmed today just how smart he is.

So.... Liam won himself a full 2hr. comprehensive IEP evaluation. She finally said, "Yes, I can see now why you had concerns and he very well might get an IEP". He has to have a greater than 25% deficit in an area to qualify for IEP. So, they will let us know when it's scheduled but it most likely wont be until Aug. everyone leaves for summer break in a few days and doesn't return until then. It's good to know where we stand and I know what we need to bring and got some good resources. I am officially sleepy and I still have to go change Riley and do meds. We have to be in Orlando at 9am so another busy day but busy is not ALWAYS bad. Sometimes we need to stay busy....

Prayers for a Friend

Please keep one of our mito friends, who is very dear to our heart, in your prayers tonight. Eithene is a very special little girl who has always very much reminded me of Riley for many different reasons. I got to know her mother since Riley has a lot of the same issues as Eithene and a year ago she was very much like Riley now. Jessica (her mother) truly knows how it is to live in a hospital as we so often do. Her issues have progressed a lot over the past 6mo. They are now faced with try to make some very hard decisions for her including if a multi-visceral transplant is the right choice. Please pray they will have the wisdom to know what the is the best option for her is and they will find some peace with it.

Tuesday, June 1, 2010

Tired and it's only Tuesday

That would be in part due to Mr. Liam deciding last night that, he just wasn't tired mommy... and then staying up unable to go to sleep until after 1am. We have a run on insomnia in the house, unfortunately I didn't get it! Riley has not been sleeping at ALL during the day and was awake crying several times last night. She has been having her up and down temps all week too, up being into the 101's. This is usually our slow progression into "something" whatever that may be with her. She has no symptoms as usual and her four molars, that have been coming in over the last month seem to be in, so I'm at a loss. It will reveal itself before to long, I am sure of that at least. It always does. Of course her Broviac (central line) is still giving us trouble and we couldn't get any blood from it on Friday. We did do a fingerstick to check her CBC and her white count was up slightly which is good considering it was only 3000 before and her H&H is up almost a point which was good so we will wait. With the holiday her pediatrician won't be in until Thursday and I don't want to deal with anyone else. So, I'll just take getting yelled at when it comes later in the week. As I say Denial Island is beautiful some days!

Liam was probably awake all night due to him coughing his head off every time he would start to fall asleep. I gave him all his breathing meds and cough meds and a double dose of melatonin to no avail. His croup seemed to also return within days of his steroids being done. Uggghhhh! That does not make me happy since Liam has had croup a gazillion times and that hasn't happened before. His doc didn't believe it this morning and thought it was just his nose causing the cough and the croup must be over. Riley must be rubbing off on him ,since sure enough as he was writing the scripts Liam started barking away, just to prove him wrong I guess. So, even higher doses of steroid now and abx since there is green coming from his eyes, nose, and lungs. I am just praying that gets all this mess under control by Friday. They will do surgery anyway unless he has significant croup since he is always sick and there is never a good time. So, much for the pneumovax.... They called me to do his pre-op stuff today. I requested my favorite anesthesiologist since it's being done at my hospital(we LOVE our ENT here) and I am really hoping he is working that day. He used to be a pediatrician and did my c-section with Riley. He is really good and Liam is known for not doing good with anesthesia. I just hope this finally helps a little... This poor kid has to catch a break with these infections they are really taking a toll on him.

We are now part of a program called the CARES program here in Brevard. They have a "wrap around" system of support for the family from the community and ultimately make sure the family is getting all it's needs met through different agencies in the community and has a support system. You have regular meetings with them in home to make sure all your needs are being addressed and nothing is falling through the many cracks in the system. That's how our care coordinator got Yellow Umbrella involved. They provide parenting support as well as help with certain bills and household items and they are getting us DIAPERS(Woo Hoo!!) as well as just supporting the family with anything they can. This is such a wonderful program offered through CARES. It's sad that these programs are actually geared towards children who have been abused or neglected and trying to keep these families together and out of the system. For family's like our though, just in desperate need of support and a little help there is no one else. They ended up being sort of a catch all program but they were nice enough to never think of turning us away. We did have a little wait to get everything started but within days of seeing our coordinator she had Liam's daycare taken care of and they are able to get in home counseling for Wil and I to do together as well as contacting Yellow Umbrella. She is also working on several other things for us. It's so nice to have someone who looks at the family as a whole and makes sure everyone is being taken care of. We are so happy and hoping this will really be a huge help and take a lot of stress off of us!

We have a crazy week this week. It started with a hurried visit to the Pedi this am so we wouldn't miss morning clinic. Followed by a 3hr meeting with the lady from Yellow Umbrella. Then of course the normal plethora of phone calls and Riley cuteness. Then I had to go do my ton of errands including listening to a lady laugh at me when I went with the script to get Riley's customized medical stroller ordered. All because she found out Riley CAN walk. HELLO... She needs something to hold all her equipment and bags that are attached to her! She's one... it's not like she can walk everywhere when we are out of the house even if she was completely normal. She says Medicaid wont pay unless she needs it to sit in at home.... seriously? Then off to my Dr. appt and to get Liam. We have our appt with the geneticist tomorrow for both kids. He has been on medical leave for 3mo. and hasn't seen the kids since Dec/Jan. It's going to be a long appt. It has taken me 2 full nights to prepare all 3 pages,per child, of medical issues and things that have happened since he saw them last. We then have to go to Orlando on Thursday too since Riley's follow-up's with Nephrology and Immunology are that day. Then of course Liam's surgery is on Fri. and Riley will have to squeeze a pediatrician appt. in on Thurs. or Fri. too.

We did have one bit of awesome news today. The nurse from the genetics office called me and apparently she had called a few weeks ago and left a message but on my other number, yeah the one I forgot the password to the answering machine. She said she had been able to get Riley's muscle biopsy sent off for the ETC testing over 2wks ago!!! This is so good, that means we should hear back in about 4weeks. It doesn't seem like that long since we've been waiting for over 13mo. since her biopsy for this testing to be done and it's actually going to finally be done! PLEASE pray we get some useful info from this since it is important for the whole family! I'll post again after our appt tomorrow since we will hopefully have found out something useful...