Wednesday, September 15, 2010

surgery update

Sorry its taken me a couple days to post an update. Its been a long couple of days. Alex's surgery went well overall. I was a little disappointed to hear that once they got in there that even his adenoids weren't overly large so no one is really sure how much improvement to expect in his apnea. They did take his adenoids and most of his tonsils. The surgeon was clear that he did make more space for him but just have to wait and see if its enough to make a significant improvement.

Alex and daddy right before surgery, 
Alex is loving the attention of the nurses 
and wants to get out of Daddy's arms and flaunt his stuff.
little does he know why he's there.
I guess ignorance really can be bliss!!

We really weren't prepared to see him after surgery. I don't know what we expected. I guess knowing how many older kids go right home from this type of surgery made us overly optimistic. Alex was in a lot of discomfort post op. He was crying but you could barely hear him make the sound at first, he was beyond hoarse which I understand is quite normal (the hoarseness). He had to be intubated so that also makes it worse. They ended up giving him morphine for the pain which ended up making him very sleepy most of the day but at least he wasn't in pain. Hearing him while he slept worried us a great deal. He sounds terrible. We've heard his snoring intermittently before but this was LOUD, gurgley, then after all that noise, a scary kind of silence and then like he was trying to find his breath, gasp and loud again. Much like you would expect apnea to sound like, he just didn't sound like that to us beforehand. We talked to several doctors once we got to the peds. intensive care unit, and everyone reassured us that this was temporary and just due to all of the inflammation post surgery. He sounded better awake but even then just soooo congested, as if someone pushed every bit of gauze they could squeeze up in his nose until there was almost no room left. It was strange to see him with his mouth constantly open to try and get air. He had so much inflammation that he is back on oxygen day/night. Again they reassure us this is just temporary, that he will get worse before getting better. I am wondering if his extra requirement of oxygen again is due to the fact that he had just recovered from pneumonia a couple weeks ago and it may be playing a part in this.

It is sooooo hard to see your child suffer, no matter how temporary. Sitting in the waiting room while they were putting him under, I counted up how many times we've sat in a room like this for he or his brother. For Alex alone this was his 5th surgery in his 16 months of life. This was probably the most minor surgery yet but as I've said before, it never seems to feel minor. It makes matters harder to wonder if putting him through this will really be enough to help his apnea or not, I just keep praying on this. I just can't look at him now and think it was for nothing, it just can't be.

Another thing that weighed heavily on us was the fact that Alex has been scheduled for another surgery just at the end of next week. Its been scheduled for months with his urologist and its a 3-4 hour surgery. His doctors and anesthesiologist said this surgery should not interfere with that one but after seeing how hard a time he's having, Mark and I just can't see to put him through another intubation and surgery so soon. I will be calling the urology office to cancel and reschedule and actually feel very much at peace with that decision.

One of the good things was one of the intensive care doctors just happened to also work for the sleep clinic and she was the one who interpreted Alex's results. She stopped in to see him, how awesome is that? We went over the results in detail and talked about whats next. We will repeat the sleep study in 8-12 weeks to see how things look. She's hopeful that things will have improved even somewhat but we will assess and go from there. She did talk about several options if needed but I won't go into now. One day at a time. It was nice just to be able to talk to her and understand his results better.

We stayed all day, overnight in the PICU and much of the following day and the care was absolutely wonderful. Even though they had to wake him up every 2-4 hours for pain control, they did everything they could to cluster their care, vitals, and other medicines so they wouldn't have to disturb in again. They completely got how vital his ability to get rest was as well. Other hospitalizations we've had, I've felt like I've had to to be the warden by the door and asking people to get on the same page with their care so they weren't' waking him up every hour or two for things they could have done at one time and given him a chunk of time to sleep before waking him again. I was sooo appreciative that I didn't have to fill this role this time and I could just snuggle my baby.

Alex is a love but he's never really been much of a snuggler. He's happy to have you pick him up, don't get me wrong but he's just as quick to see something he wants and rush to get out of your arms and go play. Its only when he's not feeling well that he lets you really hold and snuggle so I have to say even though it was bittersweet, I got lots of my snuggling time in. He just melted right into my arms and slept. As every parent can attest to, having your baby curled up in your arms, so soft and so sweet, well that part was just heaven. At 16 months old, even if you adjust his age for his prematurity, he's 13 months, hmph I don't know how much longer I can get away with calling him a baby. Well.....he'll always be mine--as my mama says, still your baby when there 30 (cough) something.

such a cutie, and sooo happy to be at home 
in his own cozy bed!!

The best news is we have him back home now which we know always seems to speed his recovery. He has gotten really great sleep lastnight and today and we are hoping this gives him the opportunity to heal faster. He's still having discomfort while eating/drinking even with tylenol/motrin around the clock and his hoarse cry when trying to eat/drink is heartbreaking. We know that every day will get better though and we are so thankful for every ones well wishes and prayers. We always felt that Alex was in the best of hands and had the best of care (as well as Nicholas).

On that note: a very special thank you that always seems so inadequate to their Nana who took vacation time from work to help us out. She spent a couple of very long days doting on brother Nicholas while Mommy and Daddy took turns caring for Alex at the hospital. We know that Nicholas loved having some very special one on one time with his Nana and we are all so very blessed to have your love and constant support!!!

 Nicholas and his Nana
(the quality of the pics are not great
but the love thats in them is priceless!!!!!)


Joanna (and David) said...

Oh my - those last pictures were just pure sweetness. Once again I am feeling your pain about surgery - when Jet had his shunt placement at 6 months it was awful to see him that way - for your baby to feel so out-of-it, hurting, scared, confused - who knows!? And we can't explain anything to them. I'm so glad you are home now - and sharing this with us! Once again you are such an inspiration to me. I totally would have rescheduled his next surgery for a later date, too! You guys need time to recover and regroup. Praying for healing and comfort for Alex - and rest and renewed strength for you. Keep finding the blessings (like snuggling - so sweet) and stay strong - you're such a good momma!!

Jill said...

Your description of the snuggling made me want to go get Kingsley out of bed to get more cuddles!! Oh, snuggling babies (ITA, you still have babies!), nothing better!
Totally scary and horrifying to give your baby up to someone else and know that they're going to be in pain. :( I dread going through that again. SO glad to hear he's home and recovering! Praying that things continue and you get good results at the followup appointment!