*the surgery*

Jan 5th was the day we have been waiting for since November....Delilahs surgery. It was a very bittersweet day as we want to help her breath better and decrease her apnea spells but at the same time we hate to be putting her through so much pain.

The days leading up to Delilahs surgery were very hard for me. I wanted to spend every happy minute with her that I could before she was miserable. I was also in a panic to make sure she stayed healthy (so we didn't have to reschedule) and that I got all necessary pictures and information ready. Most people would assume that if you have a surgery scheduled you go that day get checked in and ready and its done and you move on. For us it wasn't this easy. We have been through a lot of rough times since Delilah was born and not all things have gotten easier. For instance, having your doctors and specialists believe you. This is still a big struggle for me. Delilah has extremely sensitive skin and it doesn't help that she has a lot of problems with adhesives and is allergic to latex. Because of all this I have been very good at documenting any and all reactions from all hospital stays and visits we have had. When she had her brain MRI done last year she had a horrible reaction to the anesthesia and adhesives used. When we went in for her pH probe last summer I explained all this to the nurses and doctors preforming the test and they assured me that she would be fine with what they were using. Well just as I thought, she had a horrible reaction and rash from the adhesives that lasted for days after we returned home. This time I came prepared! I printed off these pictures so I could show the doctors, nurses and anesthesiologist all what i was talking about.

This one is from the EKG leads...2 days after they were taken off....

This is from tegaderm that was on her face....

This is from her apnea monitor leads....(the dark pink mark in is her strawberry hemangioma)After showing everyone these pictures they FINALLY listened to me that her skin is more then just your average sensitive skin. Because of this they opted to use small newborn EKG leads which left no residue and she didn't react to them at all! They also felt it would be better for her if her airway tube and IV were secured with a suture and some coban (a type of wrap that will stick to itself but not your skin). I was worried at first about the sutures but it turned out to be the best thing for her. She was being put through so much that getting a horrible painful rash wasn't something I wanted to add on. The doctors finished her history (which is quite detailed and took three times as long as the average one lol) and proceeded to take her back to surgery. I got to carry her to the first door and then one of the doctors took her from there. It broke my heart to give her a hug and a kiss and watch my baby be walked away from me knowing what was going to happen. I couldn't help but begin to cry. This was all my fault. I brought her here for this. Me. I know that's not the rational way to think about it but its all i could think about. And i knew the next time i saw her she would hug and cuddle me not even realizing I was the one putting her through this. We went and got something to eat while she was in surgery (it was a 90min procedure between the bronchioscopy, endoscopy and T&A removal) and returned to the waiting room to sit and wait. Her GI came out first and said that the bronch and EGD looked great and she has healed very nicely from all her reflux issues (which meant she was on the right meds and formula) and gave us some pictures of her stomach, esophagus and intestines to keep :) We continued to wait and finally her ENT came out and said she did great and had no complications and that her tonsils were 3 times deeper than you could see just by looking at them and her adenoids were completely blocking her airways. The one other thing he mentioned was that the posterior nasal canals were smaller than they should be for a child her age. He didn't feel like at this moment it was a big deal but if her apnea doesn't improve we may need to see a plastic surgeon to talk about fixing this. It may be fine and never cause any issues or as she gets older she may need it repaired. But for now we were just happy to hear that our little girl was going to be ok.

I was the one who got to go back first to see her and immediately she began to cry and so did I. She just put her head on my shoulder and hugged me harder than she ever has before. As she was sitting with me her oxygen began to drop and they had to give her blow by oxygen for about 2 hrs as she couldn't breath well on just room air. So there we sat in a rocking chair, her slobbering on my shoulder, me trying to stop crying, one nurse holding her oxygen mask and the other scrambling to inform the PACU of all her special needs. Even though the room was full of crying babies and parents trying to comfort them all I could focus on was my tough girl who was clinging onto me.

After a good 20min we went back to her room where Scott joined us. Immediately she wanted 2 things, 1. Scott 2. her lovey :) When she got those 2 things she was much happier and we even went for a little walk around the hospital and to play with some toys in the pre op waiting room.I'm sure it also helped that my mom and younger brother Tevin (her favorite person in the entire world) came to visit.

The anesthesia started to wear off and it was apparent it would be a long night. Because we were staying the night in the PACU there was only enough room for one of us to stay the night and because we both knew if i didn't stay i would sit at home and worry i opted to stay. Every time we have stayed in the hospital with Delilah she wouldn't for the life of her sleep in the cage they refer to as a crib so this time i was smart and asked that the crib be replaced with a regular sized hospital bed so i could lay on it and she could lay with me. I don't know why i didn't do this before!! It was so much easier! Around 8pm Scott got Delilah and I settled into our bed and left for the night. She was about asleep but then the pain got really bad and she just wouldn't stop crying. She was getting Tylenol every 4 hrs and Nubaine every 2 hrs but it was not cutting it. They were very hesitant to give her a narcotic (like they normally give kids following a T&A) because of her apnea issues. She finally calmed down and ate 2 oz of formula and fell asleep around 10pm. Right as i was falling asleep she sat up abruptly and started screaming and then would just plop down on me. This happened every 15-20 THE ENTIRE NIGHT. The nurse could tell that she was in a lot of pain and decided to call the dr and ask to give her something stronger. I already knew he would say no so i didn't even ask, and like I thought the dr told her no. We all suffered through the night sleeping a few minutes here and a few minutes there and we were both exhausted. About 6:30am the drs were making their rounds and checked on her. Both me and the nurse explained how bad the night was and that she was not responding to the "pain meds" so her dr told me if i was willing to stay until 10am to have her observed they would give her lortab. They gave it to her and immediately she ate 7oz of formula and fell asleep and slept until 9:30!! Its amazing how when you aren't in pain you can eat and sleep better. Who would have thought??!! I monitored her stats along with the nurse and throughout the night her sats were running around 88-90 but now after the meds they were at 97!! YAY!! The dr agreed that this was necessary for her and agreed to send us home and give us a prescription for it. THANK GOD!

I gathered her things, she got her sutured IV removed that was in her left foot (actually it was so much easier than when they are all taped up on you) and i got my discharge papers. I looked at them and noticed a signature on them that wasn't me. The nurse told me I signed them last night and i told her i didn't. It turns out our night nurse gave our d/c papers to another parent and had her sign them. Now that's exactly the kind of nurse i want to take care of my kid! So i had to sign new ones and headed down to pick up her antibiotic and pain meds. The pharmacy only gave me 1 prescription so i asked about it and post op didn't send down the one for the antibiotic. I went back upstairs and told the nurse who said she would page the resident who would be right over. I waited 20min while Delilah screamed her head off just to get this dumb prescription that gives her diarrhea anyway. I take it back to the pharmacy to get filled and they tell me it will be another 20min. SERIOUSLY??!!! So i thought, well if I have to hear Delilah scream for another 20min I might as well take a seat at the pharmacy and have them listen to her too. As i took a seat the pharmacist asked where i got the prescription so i told her and she said she couldn't accept it because the dr never signed it. I was livid at this point so i gave it back to her and told her to figure it out and took my seat. After 20 min it was figured out, i got it and was finally on my way home.

*funny side note the dr who forgot to sign the prescription was Dr. Error lol*

Scott was at home waiting for us so i handed her over and went to take a nap. That might have been the best nap I've ever had. Delilah was much happier at home with her own bed and things but when the pain meds started to wear off she was not happy at all. Yesterday was rough and today was the same. A bunch of crying on and off followed by a lot of cuddling and counting down the minutes until her next dose of meds can be given. She hasn't had a reaction to any of the meds, except for the great diarrhea (gotta love antibiotics!) and is slowing wanting to eat more. Today she has had about 15 oz of her Neocate which would normally concern me but she has had wet diapers and tears so i know shes not dehydrated. We have a week or so before she will be feeling much better and my fingers are crossed that i do not have a nervous breakdown before that happens.

I am grateful for Dr Muntz, Dr Pohl and Dr Uchida at Primary Childrens Hospital who together arraigned her surgery and caught that the tonsils were an issue that caused part of her apnea. If it weren't for Dr Uchida ordering a sleep study we never would have known and if Dr Muntz didn't have a hunch that her tonsils were deep we would still be worried about her breathing every night. I have had a lot of problems with the medical community since Delilahs birth but those 3 men along with her pediatrician Dr Rahaniotis, she has improved leaps and bounds. Its good to know that there are still drs out there who are less worried about their paycheck and more worried about listening to you and making your child better.