We finally arrived home this afternoon. Yesterday when I called the hospital to see how the discharge orders were coming along, the intensivist got on the phone and told me that he wanted to keep Isaac until Wednesday. He was concerned that he had c-diff again and wanted to make sure that he was totally ready to be discharged. When I went up there to visit him he looked so good. I was thinking "why is he here when they are doing everything we can do at home?" This morning I got a call from the PICU nurse and she said that he tested negative for c-diff and he was ready to come home anytime. I'm wiped out. This place is a revolving door the first day home. After the craziness was over, we snuggled up together and watched a movie with Autumn. Isaac was so happy that he took a nice nap. OK, so I don't want to post for a long time about going to the hospital. I'm done with this respiratory season! I'm ready for uneventful days. I'm ready for spring.
Isaac is looking awesome today and is ready to go home first thing tomorrow morning. He had a minor setback on Friday when his co2 (carbon dioxide) levels were at an all time high, but his lab work quickly got better once they put him on the bi-pap for another day. The hospital staff let Isaac's big sister come up with me to visit. He was happy to see her and he smiled big when she sang him his favorite songs. It will be nice when she can finally sing to him at home!I'm off to clean his room before the big day. I will post once we get him settled in.
Isaac has gone through more than most of us will ever go through in a lifetime. I expect nothing less than excellent care for him in the home or in the hospital. He deserves it. He gets excellent care at home, but sometimes I have to keep a close watch over them at the hospital. If I can see that he's not getting the care that he deserves, I can go from pleasant to crazy in less than 2 seconds.
This morning I finally went to the hospital to see my sweet boy after getting over my cold. He was happy to see me and he waved hello when I sang him his favorite "ABC song." It was a nice moment and I was happy to be there with him, but then I noticed some things that made me wonder if he was getting good care. His hair was greasy like it had not been washed or brushed all week. He also had a blanket over him that was covered in poop! Immediately I complained to the charge nurse and she got the nurse who was supposed to take care of him today. she was apologetic and said that she didn't see the poop and that she had just washed his hair and it was greasy because of some kind of lotion she had put on his ear. I still felt that his hair needed a good wash and comb through so I washed it myself and gave him a nice hairdo.
After trying to collect myself, I was talking to the nurse about the c-diff. Last week I brought up a pro-biotic that I specifically told the nurses that he would need. I just found out today that HE HAS NOT BEEN GETTING IT THIS WHOLE TIME. After they could see that I had gone completely nuts at this point, they got an order for it.
I put him in his chair later. He was happy to get out of the bed. You can see in the photo that he's carrying some extra fluid in his cheeks. This is a common occurrence when he's hospitalized due to the IV steroids. His cheeks are just more kissable now.
I spoke to the doctor today and he said that Isaac still has a couple of days to get completely better before he breaks free from there. He is sprinting off of the vent (bi-pap) nicely though. I had to leave early because my daughter had a 1/2 day at school.
The crazy lady has left the building!
I'm so sorry about not posting sooner. We have been so sick around here. Autumn and I have yucky head colds and we've been snuggling up together with our box of kleenexes. I haven't been able to see my sweet boy for a couple of days now because I'm afraid of getting him sicker. Thank goodness for my husband and Sister-in-law. They have both been able to go up to the hospital and give him some loves. Hopefully I will be able to get up there tomorrow and give him some overdue snuggles. My Mom also caught this illness and got sick really fast. She had to go to the ER yesterday to get some nebulizer treatments. I'm telling ya, this virus that's going around is just terrible! I got a full report today from my Sister-in-law and she said that Isaac looked really good. They are sprinting him off the bi-pap. No fever anymore. He was smiling and playing like crazy with his crinkly paper. Oh, and she said that he looked very cute, of course! I don't think it will be long before he comes home. Just keep praying that it's soon and that he will stay put!
Isaac has been the mysterious boy lately. Last night my sister-in-law went up and saw him during her night shift and he was spiking a high temp....as high at 104. He's not looking nearly as perky as he did in the pictures the other day. They are going to do some cultures on him to make sure something else isn't brewing in addition to the RSV. I almost think when I'm not looking Isaac reads my blog. Every time I start talking about how good he's feeling, he tanks on us. What's up with that?On Valentines Day we will celebrate our 11 year anniversary. The current circumstances are less than ideal, but we plan on trying to make the most of it. 11 years ago when we said our vows, we never imagined our life would be like it is now. Still, through the ups and downs of having a medically fragile child, we manage to stay strong. I couldn't do it without him and he couldn't do it without me. I think when you go through the hard times together, you appreciate each other even more. Today I'm grateful for:The wonderful man I've been married to for almost 11 years.The lady from church coming over to clean my house.My daughter looking so cute dressed up in pink for her Valentine party.Wonderful people like you who continue to keep our little guy in your thoughts and prayers.
I'm here at the hospital right now. Isaac tested positive for RSV in the ER and was admitted to Ped's ICU this afternoon. I will continue to keep everyone posted on his progress. We know that he is our little fighter and a tough guy. He's on continuious epi nebs right now so hopefully that will help. Thanks again for your thoughts are prayers. You guys are awesome!! This has not been a good winter for us. Last year it was amazing (for him) that we went through the entire respiratory season without an admit. I just can't believe what a roller coaster this year has been. Hopefully we can get him home soon and he can stay home!
Yesterday was one of those days.
I prayed that God would give me the strength to get through it.
Little man has many of the symptoms of RSV.
We are getting him evaluated today.
Sorry about leaving everyone wordless. I barely had enough energy to take a few cute snapshots of Isaac when we got home from the hospital. The home nurse and I waited up there for 6 hours before he was discharged! The discharge orders were a mess and the pharmacy was having trouble getting it together. By the time we got him out of there, I was spent and annoyed with the whole process.
Isaac is doing fabulous. The Pulmonologist went up there twice during his short stay. He adjusted some of his meds and put him on more lasix and steriods, which has made a huge difference in his lungs. We were able to avoid antibiotics, which was a good thing because he tested positive again for c-diff. I can't imagine what a dose of IV antibiotics would have done to his poor gut. They sent us home with medication for that so hopefully he can kick it.
So what have I been doing in my spare time when I'm not going to the PICU, calling doctors or trying to keep my sanity?? I've been getting myself back into shape. Yep, hubby and I have been doing this system on the Wii and I've lost almost 10 pounds in a month! It feels good to do something for myself and know that I'm getting healthy again. The stress of the past 2 years has packed on an extra jelly roll to my middle. When I'm stressed I want comfort food! I've found that I can still enjoy that kind of food, just not the whole box. By the way, I need to stay away from the hospital cafeteria. That place gets me in trouble!
This morning when we arrived at the ER my sister-in-law met us at the door. She's an ER nurse so she was able to get us in fast. She had informed the staff beforehand that we were coming in, so there was already a room waiting for us. Talk about great service! There are definitely some advantages to having a family member who is a nurse.
Isaac had the whole work up done and the ER doctor was on the same page as me about getting him evaluated and then getting him back home where he belongs. After the lab work and the chest x-ray came back, she had some bad news. His co2 (carbon dioxide) levels were sky high and his chest x-ray wasn't looking so good. She conversed with the Pulmonologist and they both decided that Isaac needed to stay for a tune up. I thought to myself "no, you can't keep him!" One advantage to him needing bipap at night is that he goes directly to the PICU. This means that he gets better care and close monitoring. His nurse tonight was awesome and I just found out that she does home care so I may have to borrow her sometime. When I left tonight he was happy and watching his videos. I'm going to get ready for bed now...I'm wiped.
Isaac seemed to be on the mend, but now his oxygen requirements have increased and he has yellow stuff coming out of his trach. Yellow is never a good color in the trach world...this usually means infection city is brewing.
Since he will need a whole work up (chest xray, trach culture and a blood gas) the home nurse and I may be spending the day in the ER. I want to see what other options Pulmonology has for us this morning, but I have a feeling they will just think I'm nuts for not taking him in sooner.
Please, please pray that we can get him evaluated without an admit.
She's like, "hurry up Dad and give me those cupcakes already!"
A meal fit for a queen!
Happy Birthday Brownie! We love you!
