50 Days and counting.

Today is day #50 in the NICU. Its gotten really old at this point.  Tuesday was a rough day for Wyatt and both of us. We started out the day with Wyatt needing to have his ostomy bag changed.  It sucks so bad for him because his skin is so sensitive from having to be changed so much. They are supposed to last 3 days but because of where Wyatt's is located, it lifts of his skin very easily.  Heidi and I have been involved in enough changes that we have seen what works the best and what doesnt and we change it ourselves now because I can usually get it to stay on longer that the nurses. Thats not a knock on them, we are the most consistent caregivers he has and we know what works best.

After the bag change, radiology came in and did an ultrasound on his kidney because he had a very early ultrasound that showed some hydronephrosis in his right kidney, which Heidi and I were never told about. We think it got lost in the shuffle of him being life flighted.  He still has some mild  hydronephrosis (which is some dilation in the kidneys due to a possible downstream obstruction) and we will need to have a follow up appt with Urology in 4-5 months. They don't seem too concerned about the severity of it.  They also did an ultrasound of his lymph node and found a second one that was swollen. They are swollen from the infection last week. We are watching it to make sure it doesnt turn into an abcess.  We then had to re-dress both the central catheter that goes in his chest over and down to his heart as well as the mucous fistula dressing because there was ultrasound gel all over them.

Those dressings are on there good and are painful to change out. It seems especially painful for him because he has extra sensitive skin.  While trying to change the dressings he was mad and grabbed the feeding tube going into his nose and tore it off his face...twice! That was also very painful for him. He just seemed uncomfortable all day and we had a hard time keeping him calm. I should say Heidi had a hard time keeping him calm because I was at work.

He also developed a rash which we think is from the antibiotics treating his infection. We both broke down at the end of the day yesterday. Its amazing what his little spirit can endure and it is so hard for us to watch and feel so helpless at times to make him feel better. We both love this little guy so much and get more excited and more nervous the closer we get to his surgery.

You can see where he ripped the tape off his face here and then you can also see the rash a little bit.