After a long 5 hour nap he woke up at midnight complaining that he had pain so they gave him his Valium and that not only helped with pain but woke him up. He was singing "la la la la laaa sing a happy song..." (from Smurfs's Movie) which made me happy!! He was giving me kisses and telling me he loved me. Also, something I love to hear. My happy energetic night owl is at it again! About an hour and half he started to complain that his belly was full and hurting so the nurse had to come in to help with manual extraction of his urine. Around 90oz later he felt relieved. Did you know kids with PFFD sometimes have issues with the urethra? In June, Ethan went to see his pediatrician for his 3 yr exam and we told her that he was a left shooter (when he pees it goes to the left) and she referred him to a urologist that confirmed that he had a small urethra. He will have to have surgery later this year to get his pee hole enlarged. It's a day surgery but still not looking forward to it. I guess it will be his year of surgeries! During our appointment with Dr. Paley, I brought it up to the PA and he told us that it was common with PFFD kids. He said that sometimes it can be a super large hole and many other sorts of birth defects that require surgery that PFFD and Urethra issues went hand in hand.
At some point early this morning we fell asleep but we were waken at least every hour by the nurse. I didn't mind because we have been blessed with some great nurses. At 5:30 AM the vampires showed up. Thankfully, they only pricked him once today! I made a point to tell them about his experience the day before and pleaded that they didn't have a repeat.
At 6:30 AM he started to complain that his belly was hurting and they extracted another 50oz of urine. I hope this catheter gets removed soon! Even though I don't look forward to sitting him on the potty!
I made my rounds today and the "Fantastic Four" are doing as expected. Lily is also doing well and as always as cute as can be. Elenore stopped by to bring Ethan a gift this morning. She is so cute and sweet. She said she is eager to play with Ethan and the other children once they go home (QH).
The catheter and epidural was removed around 2ish. As always he was a super star. The nurses love my son not only because he is so strong and courages but because they see his kind heart.
Around 4ish Tony makes his way to our room to illustrate the pin site care:
1) You remove old gauze (these things were on tight and were very hard to revome)
2) You soak a pack of individual gauze. Pour the saline in the middle of the package. (I counted to 5).
3) You take the gauze and unfold. Then you fold it long ways (12 inches by one inch of width) to work with. You take the gauze in your non dominate hand. Make sure that the gauze is in the inside of your palm.
4) You start to floss or "shoe shine" each pin to remove any and all gunk (blood or drainage that has accumulated). Applying some pressure to the skin to help remove any gunk. Those pin site are really close together that even my skinny fingers are having a hard time manoeuvring through them. You can always use tweezers to help pull the gauze through each pin crevasse.
5) Inspect all areas to make sure nothing is left behind.
6) You take your gauze and make 2-3 inch layers (that will cover one area of pins). You twist the part you will start weaving through pin sites. Under, over around as tight and close to the skin as possible tell all the pins are covered.
During the process of pin site cleaning Ethan was not happy and was crying "it hurts" and saying "Stop...stop!". Ethan has 10 pin sites that we cleaned and had to cover. Some kids have 10 sometimes more. If you calculate just cleaning each pin site is at least a minute per pin site and that doesn't include the removal and the applying of new gauze. I think the entire process was 15-30 minutes or at least it felt like it. By the time we finished everyone (Ethan, Eddie and I) were dripping in sweat. I managed to contained myself even if inside I was full of anxiety.
Wow, how will I manage to do pin care every day??? That was beyond torture for both of us! I was fine up until Tony walked out and then I lost it. I hope this part gets easier! I think my eyes are swollen from all the crying! I don't think any parent is ever ready for this! I have to tell you that I still have a love hate relationship with this fixator and that might not ever change.
After pin care the PT ladies came by and got him to sit off his bed to work his way to the wheelchair. Sitting was not bad but when they asked him to stand up and walk a few steps to the wheelchair that was super tough! He was not happy at all but that only lasted a few minutes. Once, we made it to the playroom he was fine. Singing and playing the bangos! It was karaoke time in the playroom and all courtesy of Ethan. He sang "Take Me Out To The Ball Game" about 3 times, "The Wheels on the Buss" and "ABC's". Later on we went outside to blew some bubbles. He loves bubbles and is getting very good at blowing super large bubbles. We went back to the playroom to play on the Wii before heading to the room to have dinner. We stopped by to check on Abby who was doing great. He did much better tonight with dinner. He actually ate more than he had in the last two days.
Well it's bed time again. Let's hope he lets Eddie sleep tonight and that the vampires only prick him once in the morning! If all goes well we will be discharged tomorrow afternoon.
Good night and thank you once again for all the support and prayers!