Day 4 Inpatient

Well we still have two little loves spending some quality time in the hospital. We were hoping at least one kiddo would be out today but no such luck. Both kids are dropping their sats while they sleep and have to be put on O2. I'm more than willing to hook them up to O2 at night at home but that doesn't sound likely. Not sure why about that one, will have to discuss it tomorrow once I get back to the hospital. Scott is spending the night again tonight. Thank the Lord for this man of mine that stays at night. I stayed last night and I'm not sure I got 45 minutes of sleep. It was a long night, between Addy's alarm and then Little Man's alarm, it was nuts. Today was rough. Addy had an upper GI this morning so I went to radiology with her while a nurse stayed with LM. Poor things had to take turns caring for him since he was being such a fuss bucket. He is definitely not an easy baby lol. He took a couple of catnaps today so I tried to doze but it didn't happen. Addy actually took a good two hour nap but her sats plummeted so on went her friend the mask again.

I just Skyped with her and Daddy and she is in much better spirits tonight than she was all day. Hopefully she will be able to get some solid sleep tonight. Not sure of our plans if we are inpatient again tomorrow night (which is very probable), but we will make a game plan lol. I'm so thankful that I have so many friends that are willing to help with Cooper and Jake while Scott and I are pretty much MIA. Cooper has an honor choir competition in Bolivar on Saturday and Jake has two basketball games. I'm REALLY hoping that we are home by then but not sure.

Please pray for my twenty-one year old as well :) I haven't done a blog post about Jarika's birthday but here's a pic of her with her first legal drink lol. What a stinker :) We took her to her favorite Japanese place, Nakato's. It is sooo good! She's sick with a bad sinus infection and the doc put her on three meds today :( She sounds miserable, I hope she perks up soon. It's hard to be in college and be sick! Fortunately one of her classes is online :) Love you big girl! Hope you get better soon too!

Inpatient Times Two

If you are a Facebook friend of mine then you know that both Addy and Little Man were admitted to the hospital last night. If you aren't a FB friend of mine then read on so you know the whole story :)

Saturday Little Man started wheezing. This is pretty common with him so I went ahead and started his neb treatments. He didn't sleep well Friday night and had a horrible night on Saturday. That usually means an ear infection but I just wasn't sure. Sunday was a nightmare he was sooo fussy, coughing and had a fever of 101-102 all darn day. Scott had to work so I didn't want to head into Urgent Care since I would have to take Addy and she was still having to have treatments for her cough and yucky pneumonia. She seemed to be about the same if not worse. Well Sunday night Little Man started retracting while he was breathing. I debating taking him to the ER because I really wanted to see our doc. No one knows my kids as well as she does. But he was definitely getting worse so into Springfield we went. We were actually in and out pretty quickly. His pulse ox was 89 when we first got into a room. He then went up to about 95 pretty quickly. He had a chest x-ray and they did a neb tx with O2. He was still retracting some but the doc checked him over (very quickly mind you) and said that he had Bronchiolitis and just to continue our home neb routine and follow up with our doc on Monday. I asked about his ears and he said they were fine. However, anyone that has a child with DS KNOWS that they have tiny ear canals and a quick peek isn't going to do tell you a thing. So we came on home and I fell into bed around 3.

Monday I kept Addy home from school because she was definitely worse and Little Man wasn't improving. I could not get his temp under 101 until about 1pm. We had an appointment with the doctor at 3. I already had a bag packed, just in case! Well Dr. Roe checked Addy out first. Pulse ox was 95 but she sounded absolutely awful. She got a neb treatment and was swabbed for the winter virus panel. After seeing how she was after her treatment Dr. Roe asked what I would think if she told me Addy needed to be admitted to see why in the world she has had the pneumonia pretty much since October. I told her if she felt she needed to go in then I wanted her to be admitted, bag was in the car. Unfortunately our pulmonologist is out of the country but she went ahead and ordered an overnight pulse oximetry and wanted the speech pathologist to see her to see if she thought she was aspriating her saliva or what. So okay, Addy was going in.

Little Man was next. He was really retracting :( his pulse ox was 95 as well. He also had a neb treatment, temp was back to 101, and was swabbed for winter viruses as well. He had TWO ear infections as well! HAH! I KNEW it! After his neb treatment he was still holding at 95 but his respiration rate was through the roof. So once again we get admitting papers :( My poor sweet babies.

Update to now without getting into everything...
Little Man has RSV, double ear infections, pneumonia (yes diagnosed from the same darn x-ray!!!), and he is on 1 liter of O2 because his sats were continually dropping under 90. We tried to go down to 1/2 liter this afteroon but it didn't work, especially when he fell asleep. He is still retracting some but not near as bad. His respiration rate is still fast but not as bad as it was. He was treated every two hours with Hypertonic Saline with Albuterol neb treatments. He has had a fever continually of 102/101 :(

Addy does NOT have RSV, does still have double pneumonia, did not have a fever until tonight when it was 101.3, she's on two IV antiobiotics, is being treated with Hypertonic Saline/Albuterol every two hours and CPT every 4. She had a speech eval today and ate her favorite mangoes pretty well considering she feels like poo. The SLP felt that if she did a Modified Barium Swallow that Addy would not eat enough to really show anything. Addy shows NO SIGN of aspirating her food that she eats (which is extremely minimal) or drinks. She truly feels that she is aspirating reflux. She discussed a test they may do which I cannot remember the name of it for the life of me that there will be a NG tube placed down Addy's nose into her stomach that will measure how often she reluxes in 24 hours. I'm not sure if the doc is going to go ahead and order that test or not. Addy does NOT have a Nissen fundoplication so she can vomit and she does have pretty significant reflux. If that test is ordered I hope it's not tomorrow, Scott is staying the day tomorrow so I can go to work. Addy isn't on O2 but did have to be put on a mask while she slept today and they went ahead and put it on her tonight once she went to sleep. She dropped her sats even after several repositionings this afternoon :(

So right now it's hard. But it happens, kids get sick. Especially our little ones with compromised immune systems. I stayed home on Monday and stayed in the hospital today. Scott spent the night last night and is staying again tonight and tomorrow. I have got to get to work to make sure I'm caught up on IEPs and testing and such, I also have some darlings to see for therapy as well. Scott has to be at work on Thursday so after work tomorrow I will head in to relieve him so he can get a full nights sleep and spend some time with Cooper and Jake. We are both exhausted but it could be so much worse. The kids are going to be okay, they are sick but they are not in intensive care or critical, they are just sick. I honestly believe it doesn't help that it's been 70 degrees the past two days and tomorrow it's going to be 33 degrees and snowing!

Please pray for my little angels and for my amazing husband that so easily gives up sleep so I can be home with the boys and sleep in my own bed.

Home!

These past few days have been nothing less than a little stressful! Fortunately Scott and I are a fabulous team together and we plug right along :) Sunday I took Addy to Urgent Care because I thought she might have a bladder or yeast infection. We finally get a room and when he vitals are taken her O2 was 94. Not horrible, but she is to be admitted when it's 93 or lower. Mind you she has not coughed once. No wheezing, crackles etc. Nada. So the doc says that we need a chest x-ray, urinalysis and a neb treatment. Addy had to be catheterized twice! She was dehydrated due to her fever :( it was pitiful. Fortunately the UA didn't show any infection but the x-ray showed double pneumonia :( After a neb treatment her O2 level went up to 95 so we were sent packing. Addy was already on Augmentin for a sinus infection so the doctor added Zithromax to the mix.

Once we were home she vomited :( ugh right? So we get her all cleaned up, fed with an Elecare/Pedialyte mixture and she goes to bed

About 11:30pm Little Man was bawling, broke my heart! I picked him up for some love and snuggles and he was burning up! He was also wheezing and coughing a little. His temp was 101.2 :( He was on Amoxicillan for an ear infection so I figured it just wasn't strong enough to tackle any kind of respiratory infection. After a couple of hours he went back to sleep. I checked on Addy and she was cool and comfy in her bed.

When I got Addy up on Monday morning she seemed ok. Not fantastic but ok. I had a nurse scheduled for her care that day since she couldn't go to school due to the fever. (She had no business at school that day anyway lol). Well, since Little Man had a fever through the night he obviously couldn't go to daycare so Daddy stayed home to take care of him. When I got home the nurse joked that she had the much easier job that day, Addy was fine, tired but fine. She only voided once which was pretty concerning. She had some loose stool too :(  Little Man was a fuss pot lol.  Not fifteen minutes after the nurse left Addy puked all over the place :( she was pitiful.  I knew I had an appointment with her pediatrician Tuesday afternoon for a re-check from UC so I wasn't too concerned, I knew she was going to be seen.

Tuesday morning I needed to stay home so Scott could work.  Little Man was pretty wheezy (he had the same appt time as Addy) and I went into Addy's room to get her up and moving and her room was covered in you know what! It was awful, my poor girl was unresponsive and completely out of it :( I got her in the tub, her room cleaned and completely disinfected and she just layed on the couch :( I gave her 2 ounces of Pedialyte to try to stay on top of dehydration. Cooper had an appointment for asthma issues and I had just planned on taking the little with me but there was no way I wanted to risk taking Addy out and about. Fortunately our former nurse and friend, Kim, came to watch her for me! Thank goodness! We kept pushing fluids pedialyte mixed with formula every couple of hours. She never went to the bathroom all day :( Scott met me at Dr. Roe's office (the BEST pediatrician EVER! just sayin!). Addy wasn't good, I knew we were heading to the hospital. Little Man was given Zithromax and Pulmicort but otherwise seemed to be doing fine. Hadn't had a fever since Sunday so he was good to go. We all went to get Addy all settled at the hospital and Scott was staying the night with her. He's soooo good at spending the night, I not so much. I do it but I have such a hard time with no sleep, Scott just flies right through his day with no sleep! When Little Man and I left Addy had a numbing patch on her right arm for her IV.

Updates from Scott included three sticks for her IV in her LEFT arm, right arm didn't work :( IV with Rocephin, chest x-ray, stool sample, blood draw etc. About 3am the nurse came in and had to take blood again because at 7pm her glucose was 54. Not good. Fortunately at 3 it was within the normal range. They had an okay considering they were inpatient.

Yesterday I had to work for a couple of hours so Little Man headed to daycare and I went to work. I told the staff that Addy was in the hospital but still call me if he was having trouble breathing (he had been completely fine) Every door in his center had a note on it about an awful stomach bug that had hit the center. Fabulous.

I worked until 10 then headed to relieve Scott. At 11am I got a phone call, Little Man threw up. Nice. They said that it was okay that they knew I was with Addy but just wanted to let me know. Addy was doing pretty good with the exception of an extreme diaper blow out. All winter panel viruses had been negative and all cultures in her stool were negative. Fortunately no c-diff! Another call at 1pm, Little Man threw up again :(  Call at 2, you need to come pick him up, he threw up again and had two loose stools. Fabulous. So I get a hold of Scott to come back to relieve me so I could go and pick him up. I call Dr. Roe (have I mentioned I love her!?!?) she wanted to check him out, he had had no urine output all day! So I rush back to Marshfield, get Little Man and go get Jake from church (he was none too happy to have to leave, I'm sorry buddy!) and headed back to Springfield. He slept the whole way and didn't wake up when we stopped, which is unusual. We took him out of his carseat and low and behold a full, wet diaper! Yeah! She checked him all over and said to just take him home instead of admitting him too since he peed! Pedialyte for the night to try to keep hydrated and to follow up if anything changes. He was not having any of the Pedialyte, makes you realize how amazing g-tubes are! He really fought the bottle of Pedialyte so I gave in and mixed it with a couple of ounces of formula. That did the trick, he took it :)

Once we are all settled, Daddy calls and he has walking papers so they were coming home! So glad that they didn't keep Addy unnecessarily with all of the yuck in hospitals! She is very happy to be home and slept all night and did not wake up with a huge surprise today!

So today I am home with my little lovies. Addy is happily watching her Ipad and Little Man is in good spirits. He took a 6 ounce bottle of Pedialyte and formula mixture and ate about half a jar of bananas (BRAT diet). He usually eats much more but I'll take it. He's had two tiny wet diapers but at least he's going. He's been bathed and Addy's about to get her turn, she wanted to veg out a little bit and I'm letting her rest and recoup. She's asked three times to see Mrs. O (her kindergarten teacher) lol. I told her that hopefully she can go see her and her friends on Monday. She really misses them!

I hate having to miss work but what can you do huh? I love taking care of my kids, being a mom is the best, even when they are sickly!

Ugh

I don't too much yet but Addy has been admitted to the hospital. She was diagnosed with pneumonia on Sunday and began having vomiting and diarrhea that evening. She's very dehydrated, I tried so hard to keep her hydrated today too :( We were told that they are pretty much going to run a ton of tests to see what's up. So far all we know is that her white blood cell count is low. I'm sure we'll have many more results tomorrow.

Scott is with her tonight, I will take over in the morning, I have to finish up an IEP and conduct a meeting before heading to Springfield to relieve him.  Please say a prayer for our sweet girl, we just hate seeing her so sick :(

Visitors!!!

We had some fantastic visitors tonight!!!

There was a whole lotta hugging going on!!! The Turpin family came for a visit while they were passing through on their way back home to Texas :) I have followed Bella's story since she was a wee little baby and now she is one spunky four-year-old!!! We had a great time hanging out with four little ones with Down syndrome!! Major cuteness I tell ya!!! Joy truly lives up to her name! What a face she has! Pure Joy radiates out of her! What a major doll!!!

It was already Addy's bedtime when they arrived so she wasn't completely herself :( She's also rubbed her face raw and looks pitiful! She hasn't had any eye or sinus issues in days but she's definitely rubbing her face still! So sorry she looks a little worn!

How wonderful to meet families that we have followed for so long :) Bella just had her trach removed at the end of September, she is one tough cookie!!! So beautiful!!! What a blessing tonight was!! Who wants to come visit next???

Meaningful Christmas

This Christmas was pretty amazing. Scott has worked so hard this year and we were able to give our kids a really nice Christmas :) We were also able to help others which truly makes my heart happy!

This Christmas was full of so many emotions. Since I work in a school, Sandy Hook really hit close to home. Not to mention the fact that I had this precious six-year-old to celebrate with.

I couldn't help but think of the twenty families that don't have their little ones to celebrate with this year :( I absolutely cannot imagine. I have so many "friends" that have lost little ones this year too and it breaks my heart that so many are not here this year. Others have little ones so sick that they have to be in the hospital on Christmas :( That's where Addy spent her first Christmas as well. I wish I knew her then.

We were also sooo blessed to celebrate Little Man's first Christmas. As I was watching him pull off paper (and put it in his mouth of course lol) pull bows and check out new toys, it really made me think about what his life would be like right now if he wasn't with us this year. I thought about his mom. What are her feelings on this first Christmas for this precious little boy? I know she's made poor choices (he wouldn't be in foster care otherwise) but she still carried this baby and gave birth to him. I pray that she knows that he is loved and cared for and we are so thankful that he is here. He's also extremely spoiled but that's besides the point :)


My "BIG" kids were spoiled as well and I loved how Jake always is so appreciative that Jesus shares his birthday so he can get presents :) Scott spoiled me as well :) We are going to go on a real date with no kids! What an extremely rare occurrence :) The kids got me a beautiful cross pendant that I can't wait to wear! Unfortunately the clasp broke so I've got to get that fixed first lol.

Heading down the stairs :)

They are all getting way to big :( I can't believe Jarika is going to be 21 next month. It's bizarre to think that two weeks before I turned 21 I had her. She would NEVER have a child at this time in her life lol. The fact that she's holding Little Man is pretty phenomenal!  Babies are not her thing but she's pretty impressed with this little guy :)

I hope everyone had a very blessed Christmas and a fantastic New Year celebration. I'm hoping for a snowstorm, I enjoy being home with my little blessings!

Christmas party

We had a great time at our Down Syndrome Group of the Ozarks Christmas party yesterday. I didn't get very many pix that don't have Little Man in them too but you can tell Addy had fun :)