Nursing

I am very happy to report that the past three days have been awesome for Addysen! She has two nurses that are caring for her. One comes M-Th and the other on Fri. Let me just tell you that this little girl is so blessed! They both adore her (how could you not???) and I am so comfortable at work knowing that she is being very well taken care of. They are able to administer her meds and do her breathing treatments and I know that everything is done correctly and on time since I have it in writing! I am still hoping that she can go to daycare two days a week but I haven't heard back yet.
Addy had her first OT session since January 30th today. Delene (her OT) said that she did really well. She even wore her AFOs during the entire session without too much distress! They were on for a little over an hour and her nurse said that when they came off there weren't any red marks from irriation at all. That's good!
I am suffering from a major head cold! It started yesterday and I felt horrible last night. I am a little better today but so bummed that I am sick. I have washed my hands more times in the last month than I have in a very long time and I get sick. I don't think it could have anything to do with being totally exhausted and stressed out for the past three-four weeks do you?
Scott headed to St. Louis tonight to meet up with his friends for a computer weekend. He wasn't going to go since I am sick but I told him he needed some relief too and I will be fine. So I am a single mama for the weekend and plan on being a bum. I do have to work for a couple of hours tomorrow morning at an indoor garage sale but that's not a big deal. We are expected to get 4 inches of snow tomorrow too. It was over 70 degrees yesterday! You gotta love the Ozarks!

Up about a Pound!

I had to post pix of Addy first thing this morning, she had the cutest bed head!! We went to the pediatrician this afternoon and her central line has now been removed! Yeah! You can also see that the bruise and scabbing on her head is a lot better too. People keep asking me if she fell and hit her head. Uh, no, she's immobile! She also weighed in at a whopping 19lbs. 5 oz. so she has just about put back on one pound of the three she has lost this month. We are to continue her 20 hour per day feedings for another week. He doesn't want to put too much on her system since she is so fragile. So maybe by next weekend we will be able to start consolidating down again.








She really had a good first day with her nurse. Some people have asked me about this nursing situation. Okay, this may be lengthy but informative. When we brought Addy home I asked about home health and the dr. said that she didn't need it because anyone could be taught to take care of her (she had O2 24/7, colostomy and mucous fistula, and fed through her j/g tube 20 hours per day). He also said that it would cost my insurance company way too much money. Okay, so we trudged on and found a babysitter. Many people ask what the challenges of having a child with special needs has been for us. Childcare has been the biggest concern. It was very difficult to find someone to care for Addy with all of her needs, but fortunately last year we did. As I mentioned yesterday, this year has been a different story. (BTW by years I mean August through May when I work). Fortunately she did get into the daycare the beginning of January, so once again we found a perfect place for her. Well I found out this week through the doctor referral and whatnot that Addy actually would have qualified for nursing all along since she has chronic medical needs. Medicaid is paying for this. Addy does not qualify for Medicaid due to our income, she qualifies in Missouri because she has Down syndrome. Her Medicaid (supplemental to our private insurance) is covered through her adoption subsidy so she would have gotten it either way. When we chose to adopt a child with special needs. I knew nothing about any of this. We did not adopt Addy for the "benefits". I got upset when I found out that we could only get help for Addy since she has Medicaid. We just wanted a couple of weeks to get Addy healthier before going back to daycare, which was ordered by the doctor. I wondered where is the help for the typical middle class family like ours? What about all the millions of people that need help and can't get it because they make too much, but not enough to pay for thousands of dollars in care a year? If she didn't have the MC then we would be out of luck. No nursing, no respite care, no nothing. Sad isn't it? Well, so many people are very angry with Addy's doctor since he didn't pursue this when we brought Addy home. Yes I was angry too since paying her childcare has been unbelievably expensive (however since the adoption, it is covered by subsidy), but we knew we would be paying for childcare, but it has been SOO stressful. Finding someone that can take care of her has been tough. But I am a Christian and I am choosing not to be bitter, or angry. I am grateful. I am grateful that my child that pretty much has zero to no immunity will now be cared for in our home with a qualified person to take care of her medical needs (not just feeding). We are still very hopeful that she can return to daycare to socialize and be exposed to some germs to try to build an immunity, but we just don't know right now. I am thinking in another couple of weeks we will be able to try a couple of days a week. So now, we just thank our good Lord that he has blessed this child by providing what she needs when she needs it.

Feeling Good and AFOs

Well we are finally getting re-settled back into our family routine. We had a good weekend at home and I know Addy was very happy to be back in her own bed without those pesky nurses coming in every few hours! We went back to the hospital yesterday and had her central line checked and flushed. It looked good so that was no problem. We will have it removed in the pediatrician's office tomorrow. We went today and picked up her new AFOs!! They were ready a few weeks ago but a certain little someone was in the hospital so we didn't get to get them until today. They are so cute with the multi-colored foam and purple velcro with princess ribbon on them! It's amazing that two tiny pieces of plastic with a little velcro and foam costs over $1500!! Thank God for insurance! Since Addy's braces make her feet quite a bit bigger we headed to Shoe Carnival for new tennies! The three other kiddos needed new tennis shoes, as did I so it was an all or nothing deal! I had to get Addy a size 5 1/2 shoe! Her old shoes are size 3 and they were still a little big, check out the difference! We are going to be putting her in her braces for about an hour and then give her a break a few times a day and then we will increase the time she has them on. She has hated them so far, no big surprise but we are hopeful that they will help her with weight bearing on her legs.



I do have some exciting news! Addy has qualified for in-home nursing care! I tried to get this for her when we came home from Minnesota with her but was told that she wouldn't qualify. So fortunately last year we had a wonderful person that kept Addy in our home until April when she got sick and had to have surgery. She ended up moving so we had to find a new person to care for her this school year. I interviewed over a dozen people and there were people that I wouldn't have left my dog with! I thought I found the perfect person, unfortunately, she totally had me snowed and we ended up having to let her go in November. It is very hard to find a reliable, honest, and trustworthy person to care for your child with special needs. Fortunately Addy was accepted into a local daycare here in one of our local churches. They are awesome and Addy is in the infant room, which is totally appropriate since she is developmentally around 9 months. However, since she started in January she has had a sinus infection and then she had the tummy bug and the rest is history (she hadn't been sick for 14 months prior). So the doctors in the hospital wanted to have her stay out of daycare for a couple of weeks after coming home to help build up her strength a little bit. It was a nightmare trying to find respite care or home health help for her. Yesterday I found out that she is not only going to get care but a nurse to care for her in our home! She qualifies for this since she has continued medical needs, one of them being her G-tube, so yes, she would have qualified for this from the time we brought her home!! UGH! I have decided not to be bitter about this (even though I am a little) but just be extremely greatful for this awesome blessing for Addy. This is taking a HUGE stress off of us. Scott and I both have to work. If we could afford for me to stay home we would, but unfortunately we can't so... I am soo thankful for this wonderful service! It is so scary to see Addy get so sick so fast! Our plan is to just have to use this for a short term, however, the doctors have asked if we would consider just sending her to daycare a couple of days a week. Not that we can guarantee that there won't be germs there those days, but that way she will get the benefit of the socialization with the other kids, but not be there so much that she is exposed to everything. So I left a note for the director today and I will find out shortly if they will be able to move Addy to part-time. I really don't want to lose her spot, she does benefit from being there, she has learned so much already but we do have to put her health first. So please pray that things work out so it best benefits Addy and her health and development.

We are HOME!!!

You mean I get to come home??? YEAH!

After spending the last 10 days in St. Johns after being home just four days from the first trip we are home! I am really praying that we are home for good now! We got home about 6:30pm and are so happy to have our family back together! Jarika is cheering in Reeds Spring so we won't be totally complete until later but this is a start! Addy came home with her central line still in place. We go to POPS (Pediatric Out-Patient Services) on Monday to have it flushed then we go to the pediatrician on Wednesday to have it removed. She is still on Flagyl for the next eight days and we are continuing breathing treatments every four hours. They also sent her home on continual feeds which is a drag, but I was told we can start trying to consolidating them this weekend if she appears to tolerate it ok. We are supposed to call the floor if she has any trouble and the doc will admit her again for observation so we have got to pray that she can handle feedings again! Fortunately she was able to stay off of O2 all of last night and today and only alarmed a couple times last night but Scott said it was because she had her leg all bent and it wasn't reading well. Once she straightened her leg it was fine. We never did find out what was wrong with her left leg, most likely a pulled muscle or somehting. Who knows, we are just very thankful that it seems to be just fine now, praise the Lord! I still haven't heard whether or not she is going to get respite care for the next week or so but Addy's nurse case manager is really working on it. I sure hope so, it will be a huge blessing. That way she will be able to stay home from daycare a full week to build up her strength and immunity again before going back. I know she must miss being around people that aren't nurses or respiratory therapists! She was very happy to be home with her brothers and she is singing herself to sleep in her own comfy bed! Thankfully Scott will able to do the same tonight too!

Playing with her favorite toys, an awesome sight!

Do I know you?

It was cute watching her move both of her feet around and around. I think she was amazed that neither one was hooked up to the Pulse Ox or had a name badge on them!

Not home yet

Well we had a set back again :(. Addy is now on 1/4 liter of O2 she is still not maintaining her sats on room air. She had a really good night last night and slept well. She threw up twice this morning so they took her off of her feeds and put her back on her IV. They let her go 8 hours off of feedings then put her back on tonight about 6:30 at just 20mL an hour and they will see how she does. The GREAT news is this:
She was VERY smiley and happy today! She had a sparkle in her eye and loved that I brought her some of her favorite toys! She played with them and did Pat-A-Cake!! Yeah! I am so thankful for that! Now if we can just her lungs stronger so we don't need O2 and her belly handles feeds we will be good to go! I am so thankful that so many people are praying for her. I think just about every church in our community has her on their prayer list. This is so awesome to know that people that don't even know this precious angel are lifting her up to our Lord to ask that she get better! I love that I have so many people that I have "met" through blogging that keep track of how she is doing and are praying for her as well. I would link to their blogs like so many do to ours, but I have no idea how!! Someone tell me and I will do it! So I ask that prayers go out for Jaxon, he's got RSV too and will probably end up in the hospital, click on Jaxon's Fight on the left of my blog and you can check on him too.

Yep, I was right C-diff

Look who's moving her left leg!!!

I knew she had it, I'm glad I requested another stool sample. Addy tested positive for C-Diff so she is now on Flagyl. I am so hoping that this helps her poor little bum! She had to go back on O2 again today. We tried taking her off for awhile but she had to go right back on, kept dropping into the 80s. I did get some smiles out of her today though! She was fine for my mom all day but cried for me. I''m trying not to take it personally! I have a feeling that we may come home tomorrow or Friday. I imagine it depends on her O2 sats now. If we have to come on O2 I guess we do, I just hate that! There are many worse things and it's not like we're not used to it, but it seems like such a set back for her. Please continue to pray for comfort for my little girl, I know she feels crappy and is downright sick of it. I don't blame her poor thing.

She is so sick of breathing treatments!

My wonderful friend Susan and I were talking today and she was telling me about something Beth Moore had said (if you don't know her ministry, she is awesome!) she was talking about how bad things happen and we ask God why?? But then she reminded us that bad things happen but God is with us through all of these bad things. I know He is with me, if He wasn't I would be in the looney bin by now. I am stressed beyond belief but I know that He is going to get me through. I pray that we do get to bring Addy home very soon and she can be more comfortable and content in her own home with all of her things and her "people". I thank everyone for their support, I feel guilty asking for prayer when I think of Zoey and Jaxon and Parker and Emma and I feel like such a wimp when we are going through much less than what their families are.

Two steps back

A look of desperation, please fix it Mommy!

Wouldn't you know when you go one step forward you take two steps back :(. Addy had a really rough night, as did Scott. They had to put her back on O2 her sats were dropping into the low 80s. This morning when I got there she looked horrible, just worn out. Poor Scott is too, I feel so bad that I am not staying overnight right now but I am telling myself that its for the best of our entire family and he recovers far faster than I. My shoulder is killing me. I was supposed to see my surgeon yesterday but had to cancel because I had to work. I have a feeling he's not going to be too happy with me. Anyway, I gave Addy a bath when I got there, which she hated. Her bottom is bleeding from the diarrhea. It's awful. We were able to take her back off O2 for the day, hopefully she won't need it again tonight. She is moving her leg some but she is still keeping it pretty guarded. Still have no clue what's going on there. The doc is testing her for C-Diff. Ugh, she got that last year after her colostomy take-down surgery. She probably has it, her system is so sensitive. If it is C-Diff they will start her on Flagyl so that should help. They are treating the sores in her mouth with Nystatin so hopefully that will clear up too. I tell ya, this kid doesn't do just one thing, she ends up with several!!! She pretty much was crying all day until 2 when she finally gave up and went to sleep. She slept peacefully until about 4 so that was a good nap for her. I so pray that she and Scott have a better night, I hope they both get some rest.

This is a precious little swollen foot.

Ah, finally asleep!

IMPROVEMENT!!!!!!!!!!!!!!!!!!

I am so happy to announce that there has been improvement with Addy today! Maybe it was Uncle Kent's magic touch I don't know but we have made gains!! Addy is off of her O2!!! Woo hoo on that note! Her lungs sound a little better and her leg is less swollen but still not moving it like normal. She has the docs stumped on this one. There is definitely something wrong with it we just don't know what. Her doctor happens to be married to Jarika's orthopedic surgeon so she is going to ask his input, everyone is baffled. Her bloodwork didn't show anything abnormal except for increased white blood cells which they feel is still the pneumonia talking. She still has a lot of loose/soft stool but they still have her on 24/7 feeds. The doc mentioned that she may be able to come home tomorrow or Wednesday! I have a hard time believing that just yet since she seems to still have a ways to go but we'll take it! The doc is also working on getting us a home health nurse to care for Addy for a couple of weeks after she gets home so she will be able to get stronger again before heading back to daycare. I love her daycare, they are doing awesome things with her but I know she's exposed to so many things there I'm a little scared to send her back but what can I do?? I have to work so we are stuck. So please pray that home health nursing comes through for at least a couple of weeks so she can get stronger and not have a set back hopefully. I will post pix tomorrow, she SMILED at me tonight!! That's the first time in two weeks are saw an absolute pure Addysen Grace smile! It melted my heart, she is such an angel. Daddy is with her tonight and I just got home to spend some time with the boys. Jarika left once I got home so she could go cheer in Springfield. She was excused from the game since I needed her to watch the boys since I was at the hospital but Utah went to the game (it's a girls' game) so I'm pretty sure he was the motivation for her to go! :) It's so nice to see both of my girls happy! I will post pix tomorrow and perhaps a homecoming!?!!?

Well it's not broken

Addy had a very rough day today. She has pretty much cried since 4 am. Nothing has made her happy. She didn' t take a nap at all so I am hoping she will have a good night. My brother graciously offered to spend the night at the hospital tonight so Scott and I can both get a decent nights sleep at home. Thank you Kent!! I bawled the whole way home tonight, it was really hard leaving her. It's always hard but tonight even more so since I know she is so miserable. Once I got here at home I told Scott that I was really having a hard time with one of us not being with her so he's going to be taking the overnights with her. He can handle it so much better than I. He works in Springfield so it's much easier for him to stay during the week anyway. I am feeling guilty about not being here for the other kids, I miss them so much and it helps having me here in the evening to keep the routine.

The doctor ordered bloodwork today, don't have any results back. Her left leg is still swollen and she is keeping it very guarded and won't move it so he ordered an x-ray of her tibia, femur and pelvis to see if she had a fracture somehow. He read the x-ray and he didn't see anything but he still wants to wait on the radiologist's report. I noticed yesterday that Addy had some white sores on the inside of her mouth. He checked those out and said that it could be Thrush or Herpes. WHAT?? I freaked on that one, he told me not to and it's going to be watched. How that would happen is beyond me, when I am more coherent I guess I will check that out. They did a chest x-ray today and the pneumonia isn't any worse but it isn't any better either. She is still on 3/4 liter of O2 but her sats were in the upper 90s most of the day so hopefully she will get that lowered tomorrow. The doc also ordered a bolus of IV fluids and that seemed to perk her up a little bit. She is on 46mL of formula per hour 24/7 and is tolerating it well. She is having very soft stools but much improved and no vomiting. Her little bottom is raw so we are using Pull Through ointment to help clear it up. For some reason it's worse today than yesterday, I guess since she is eating 24/7 she is going more often. My mom came and brought Addy some balloons today, I think Addy likes looking at them. I liked that there was a Hershey attached for mama! Thanks Grandmama!I have a feeling we have a few more days before we even think about being discharged. Her central line is doing well and the plan is to come home with it in place for at least two weeks. I think that's a good idea, she has such a tough time with IVs and her immunity is going to be very compromised for awhile.

Notice how she doesn't have both feet up like she usually does?

A friend of mine came over yesterday and cleaned our upstairs for us! Thanks Debbie! That is such a huge help, it's so hard to keep up when I'm not constantly at the hospital let alone gone a whole weekend. I am so blessed to have such wonderful friends that are helping so much.

He head is looking better now we are fighting very dry lips!

No real change

There hasn't been much go on today. Addy has been quiet as long as you don't touch or talk to her. He sats are running in the low 90s or upper 80s on 3/4 liters of O2 so we might have to increase it again. She still has a pretty croupy cough and nasal drainage. Scott broght the boys by tonight, I'm pretty sure Avery was pretty upset that Addy cried when he tried to give her a Valentine he made for her. I know she will like it when she feels better. I'm hoping for a peaceful night, HA like that happens in a hospital huh!

update from hospital

I am back in the hospital with Addy for the weekend. We borrowed a friend's laptop so I can post from here. Scott said she didn't sleep great and is now having to be on 1 1/2 liters of O2 to keep her pulse ox in the  low to mid 90s. She has a lot of congestion so is having to be suctioned quite a bit as well. The boys and I enjoyed our evening together. We ate McDonald's, their favorite and watched Kung Fu Panda while chomping on popcorn. Jarika came home a little after 11 so we just talked a little bit. The Jays won their game yeah! She and Utah are coming by later to visit and to go out to eat, it will be nice for Addy to see her sister even though she Will just scream at her like she has everyone else. Her Doppler from last night showed no clots but she is still swollen. I am going to ask the doc again about it, I thin we need to keep on top of it.

Addysen Update

Well Miss Addy is giving us a run for our money once again. She is now back on 1/2 liter of O2, her sats were dropping into the mid 80s, not horrible, but not good. She is happy to be reunited with her favorite toy though, oxygen tubing! She isn't as sleepy today, but extremely grouchy! She wants nothing to do with anybody! You look at her, she screams, you touch her, she screams, you say "I love you Princess" and she screams. So she has pretty much been left to have her time with her tubing.

There has been another problem arise today. Her left leg is very swollen. She hasn't had any procedures or lines there so the docs are unsure why this has happened. There is a possiblity that she may have a blood clot so they will be doing an ultrasound this evening to try to see what's going on. It's hard to tell in the picture, I couldn't get her to keep her legs together to compare, she just screamed, it wasn't worth it, but her leg is about double in size.

She is tolerating her formula well. She is only getting 30mL an hour at that same rate, so very slowly, but she is tolerating it and not vomiting it up for about the first time in 11 days. Scott and I are doing well with tag teaming the family, Cooper is having a hard time with me being gone and the unexpected stay in the hospital for the second time in the past couple of weeks, so I am home again tonight, just the boys and me. Jarika is cheering at a basketball game in Hollister (down by Branson) so I think we are going to snuggle on the couch, watch a movie and eat some popcorn. Scott is holding down the fort at St. Johns again and I am staying for the weekend. I don't see her being able to come home within the next couple of days so that is the plan for now. I know there are mothers reading this that do NOT understand how I can be away from my baby. Well, let me tell why. Scott and I have learned in the past 18 months that life with Addy can be a challenge. It is a challenge that we love and would not trade for the world. However, we can not be in more than one place at the time and we have three other children that also need their parents to love them and care for them just as Addy does. So, we have learned from the past mistake that staying 24/7 is not healthy for either of us or our kids. They need me too and I know Addy is fine with her Daddy right now. She is doing ok, just very sick, but she will get better. She could care less if I am there or not right now so that is a good thing. When she is feeling a lot better she will want me there, and yes, I will be there. I am also barely a month post-op myself and my shoulder is hurting and needs as much rest as possible. I am not far away and I can hit the road in a heartbeat, so please don't judge my family. We are a family and every member is important. So as I said, I am going to be a mommy to my two precious boys who have missed their mom these past two weeks. I'm not cleaning, doing laundry or anything else, just being a mom to the boys (and Jarika once she gets home :)

Admitted

Addy was re-admitted to the hospital yesterday. She has pneumonia and RSV. The docs feel she probably got the RSV from being in the hospital last week. That just plain sucks. The doctor put in a Central Line instead of an IV, he knows her history and after seeing the bruise from last week he wasn't going to even attempt it. I hated having to sedate her and put her through that procedure but it is best, no sticks for bloods draws and such. Her pulse ox was low tonight before I left 88, so I imagine if she doesn't improve a little she will be back on O2 for a time. She is on two antibiotics and more powerful breathing treatments every four hours. She has just started very slow feeds of Pedialyte tonight so we will see if she can keep it down. I am home for the night and will work tomorrow. Scott is with her tonight and tomorrow. I am spent, I am still not recovered from my shoulder surgery and it is definitely letting me know that right now. I hate leaving her but unfortunately I am out of sick days at work and get docked a chunk of salary everyday I am gone so it has to be this way or we won't be able to keep up. I cried the whole way home from the hospital. This girl has been through so much this past week. Her weight is down to 18lbs 6 oz. She was 21lbs 13 oz at the beginning of January. Please continue to pray for this angel.
She has finally gotten some sleep today so I am hoping she really improves tomorrow after getting sleep and antibiotics for over 24 hours.

Heading Back

Addy and I are headed back to Springfield to the doctor. She has had much more vomiting and diarrhea so we are most likely heading back to the hospital. Please continue to pray for my angel.

Bones

I have been telling people how skinny Addy has gotten since she's been sick. Two pounds on a barely 20 pound body is 10%! So here are pix of her this morning, 4 ounces heavier than when we left the hospital. I so hope that adding the Pedilyte will help add a little bulk to her! See why I tell people she looks like an Eastern European orphan???

We're ok

I just got back from taking Addy back to the pediatrician. He took a stool sample (which was not done in the hospital), did a chest x-ray, which showed a flattened diaphragm which indicates some wheezing. She has been coughing quite a bit but I hadn't heard any wheezing but my mom did today. So the game plan is to give her 4 oz of Pedialyte between her formula feedings and give her a breathing treatment every four hours and I'm supposed to call him in the morning. She weighted 19 pounds so she has gained a little since coming home from the hospital, but she still looks horrible. He said her hydration was okay, but not the best. So fortunately as of right now we are staying out of the hospital for now. I so pray that she comes around soon. It kills me seeing this face:
And not this one:

Think we'll check it out

Addy has had a terrible weekend. She cried all day Saturday, I'm not exaggerating, ALL DAY! This girl never cries, so it was heart wrenching. She slept pretty well Sat. night, but was still not right yesterday, no light in her eyes, whiny, and didn't sleep well. She is so skinny it is breaking my heart, I can see every rib and all of her spine, she had lost over 2 pounds and on a 20 pound body that is a lot in a couple of days. My mom is coming to keep her today so Scott and I can both work, I'm going to see what she thinks but it looks like we may be heading back to the pediatrician this afternoon. She still has diarrhea, but I do think it's better. She is coughing some but I think it's more of a reflux issue. At least I hope, I really don't want her to have aspirated on something. Please lift her up to our Maker, she needs some prayers.

She's Home!

This is definitely the look of someone who wants to come home!

I got the best birthday present ever! Addy got to come home, she is snuggled into her own bed fast asleep. Scott said neither one of them got any rest last night either so it's been pretty much three nights for her with no good sleep. Hopefully she will get a lot of rest this weekend and really perk up. She is still pretty fussy and has diarrhea still but is tolerating feeds so they let us bring her home. Her IV left with a huge bruise on her head, the pics don't really show how awful it looks, poor thing! Thank you everyone who prayed for her, she bounced back quicker this time than ever before, we just have to pray she stays ok this time! I know she will!

Finally comfortable in her favorite sleeping position, time to pack up!