Another Hurdle Cleared

Time flies when things are soooo busy! We've had a lot going on the last couple of weeks, so I wrote a few updates at one time again, starting with Feb 3. We had surgery on Thursday for the removal of his adenoids, tonsils, and placement of the ear tubes. It must have been ENT Day because we could hear that several other patients received this surgery. They call it "T&A" surgery, which made Bran and I chuckle a few times like juveniles due to how many times we heard it in the recovery area on the other side of the curtain. You'd hear the doctors & nurses say "He's here for T&A", or "He just had T&A". I don't know why that's funny, but it was.

Surgery went fine, it was over quickly (about 45 minutes). The time leading up to it was tough emotionally... turning your baby over to the doctors for surgery just never gets any easier, no matter what it is for. This time they had us come in the room with him while they put him to sleep. We've never been asked to stay while they put the mask on to put him under. It was much harder to watch than I thought it would be, but I just couldn't let him be scared with someone else if we were given the option to stay with him. He cried when they put the mask on and fought it while I held him, then he went limp in my arms after about ten seconds. I then laid him on the bed for them to take him to the OR. It was an awful visual--seeing him like that with his arms and legs lifeless and his head tilted back with the mask over his face was a reminder of what he looked like for weeks on end in the NICU. It looked very similar to him lying in the isolette with his head tilted way back and the c-pap on his face. It also reminded me of the times we stood by and watched them bag him to get him to start breathing again. Sometimes I wonder if these painful images will ever stop appearing. I cried as they took him away and we had to walk out into that same hallway and waiting area AGAIN.

But, as soon as they paged us and I could hold him in the recovery room, all of that went away. Its such a relief when its all done. The ENT said it all went well and that Lucas had a "massive" amount of fluid behind his eardrums, and said he had what they refer to as "glue ear." It was all very thick and gummy, like glue. There is no doubt that it had to come out, and I feel we definitely made the right decision pushing this to be done now. I can only imagine what impact that has had on him and no wonder we couldn't clear his infections! He also said his adenoids were "enormous" and "quite impressive" (his words exactly). We knew his tonsils were impeding his breathing, but did not know about the size of the adenoids. Dr. Shah said that the adenoids were definitely keeping him from breathing, and causing other problems.

I asked him with what he knows now, if he fels this could be contributing to his eating (or lack thereof). He said the fluid definitely can have an impact on him wanting to eat, and the size of the adenoids would keep him from smelling food which could impact his desire to eat and the flavor of foods, and their size has likely been limiting him to taking small bites. How about that? I don't like hearing all of that, but wouldn't it be great if this solved our eating/weight gain issues?? I am holding out hope that things will get better in that area, and getting good sleep alone will help with weight gain.

Recovery has been ROUGH! We spent the night and were discharged Friday morning. Lucas spent the night sleeping cradled in my arms for half the night, and the other half in Bran's. He would not sleep in the crib, he would wake up every 15 minutes or so crying. This is not him, he usually appreciates his space. If we held him, he would be ok and sleep. Bran and I didn't get any sleep in our recliners, but at least he got a little! I've never seen him quite like this, the pain from this is significantly more than any of the shunt surgeries (go figure). The day of surgery, even if the blood pressure cuff went off and squeezed his leg (as it would every hour), he would start crying hard. He would do the same thing if the nurse flushed the IV or touched it at all. He just didn't want to be messed with. He would also cry at the slightest loud noise, the doctor said he would be very sensitive to noises due to clearing out all the fluid. A couple times he would cry just from a sneeze or a cough.

We've had a very "needy" weekend with a lot of crying, but hopefully we are through the worst of it. We ended up calling the ENT on call on Saturday afternoon because Lucas cried really hard for 30 minutes straight and I couldn't get him to stop. It really freaked me out. Since we've seen him go through so many surgeries and some pretty rough stuff, to see him cry unconsoleably was really worrisome. But the doctor said it was normal, that this is really painful, and that days 2-4 are the worst. He seems to be better today, and he's eating better, but still gets upset very easily. We can't even leave the room for a second, he starts crying. The discharge paperwork says it is important to avoid yelling or straining their voice.... right, that's just funny. Dr. Shah kept saying he would start to act like himself after the weekend, so fingers crossed that he is feeling better tomorrow. I promise I'll update everyone later in the week to let you know how he's coming along.

**These pictures don't really match the subject of the update, but I thought they were cute of our bike ride last weekend. We haven't taken many pictures since the holidays.