As I lie here next to my little angel... I am overwhelmed with things to be thankful for. I'm not even sure where to begin. Thank you for Tripp's doctors. Without them- he certainly would not be where he is today. Thank you for giving them the knowledge and the capability to do the things that they do to keep my son alive. Thank you for the fact that my son doesn't have problems with anesthesia- what in the world would we do then?? Thank you for the nursing staff at the hospital. I truly feel "loved" and feel like my son is "loved" the minute we set foot into the hospital. From the receptionists, to the nurses, respiratory therapists, anesthesiologists, and doctors- they all "know" us and they all treat us with such kindness and respect. Thank you for my family and friends. I can't imagine if I had to go through all of this without the constant love and support I get from them. Thank you for a mother that jumps through hoops for me and my family. And who would do anything in the world to make me just a tiny bit happier. Thank you for my blog readers, some whom I've never even met... sometimes they are what keep me going. Thank you for Geri, our "EB" nurse- who is not only my resource for everything.. but sometimes my "counselor":) Thank you for my fellow "EB parents"-who feel my pain and can relate to what I am going through. Thank you the ability to actually get out of bed each morning and continue to do what I have to do each day- because sometimes it's not easy. Thank you for the patience to do a 30 minute diaper change, a 2 hour bathing process, or spend a day blending foods. Thank you for the strength to hold my head up high and realize that feeling sorry for myself is a selfish waste of time. Thank you for my son- who warms my heart and teaches me to cherish every second. Is it easy to watch him go through this every day- NO. But O, the rewards... I can't wait for the rewards he will receive in heaven. God, I know that you did not put disease into this world- that it was our own sins. And I know that you are hurting just as much as we are seeing Tripp in pain. That is why I am thankful- because even though we are the reason for all the horrible things in this world- You are the reason that there are GREAT people and GREAT hospitals, and GREAT things that come out of all this. Thank you for my life... and the people in it. I am blessed.
Tripp's surgery was scheduled for 2:00pm. We waited in Pre-op from 1:00-4:30 when they finally took him. He was such an angel... and O MY the versed made him hilarious. We got good news and bad news.
Dr. Rodriguez (ENT) went in while he was already going to be under anesthesia and did a bronchoscope to "check out" his vocal cords (you know, the place that was swollen that caused him to have to get the tracheotomy). Well see for yourself...
I'm not sure if you know what a "normal" airway looks like... but it's NOT LIKE THIS. His vocal cords and epiglottis are all fused together into one big blister. No, this is NOT good. This means that if somehow the trach would get blocked or plugged at all- he would have NO other method of breathing. Which we kind of knew... just didn't know it was that bad. So the trach will not be coming out anytime soon... (which we also knew)... BUT we need extra prayers that the sore underneath the trach itself will not cause a blister to scar and block the trach- because that is his only means of an "airway."
Dr. Shah (corneal specialist) who did his surgery today, said that everything went really well. He said the symblepharon ring fit very nicely and that he feels it will hold in place a lot longer than he initially thought. He also said that there was a lot of granulation tissue (what was coming down in the corner of his eye). Granulation tissue is the devil.... it spreads like wild fire. Especially if you start "clipping" on it. But he said that he trimmed most of it and gave him a steroid shot in his eyelid to try and "tame" it. And then gave me some steroid and antibiotic drops to keep in his eyes.
We made it home safe after a long and stressful day. Tripp opened his eyes for about a minute total since surgery... so I haven't really been able to "see" what his eyes look like. But overall, I think he is doing very well and the pain and swelling is expected. He amazed us when we got home and Randy said "show me your muscles" and he (with his eyes closed) gave a grin and squeezed his arms like he was showing his muscles:) I'm telling you... he's superhuman. I will try to let you know how he's doing tomorrow- even if it's just a short update. But he is sleeping so I'll cut it short:)
Thank you ALL more than I could ever express for all the support, thoughts, prayers, and love. It keeps ME going- therefore keeps TRIPP going. We truly, truly appreciate it. I love you guys.
I'll leave you with some pictures from today's surgery...
In Pre-op before versed
Pre-op... after versed.
Rocking with Grammy in Recovery.