For starters, I got to wake up to a clean kitchen this morning. Finally just stayed up until midnight after game night over at Melissa's and got the pots and pans knocked out. We try to get the kitchen clean every night but some nights Timmy won't go down or we're too exhausted to get everything done. So slowly the pots and pans will creep up on us until we have none left. I love waking up in the morning having them all put away and my counters cleared. Just a peaceful way to start the day.
I also woke up around 7 after a good six hours or so of sleep. It has honestly made a world of difference just letting Timmy sleep with me. I'm no longer trying to stay awake while I nurse in the middle of the night so I'm getting more sleep these days. It's a beautiful thing! Consequently, even though I stayed up to clean the kitchen last night, I had the energy to keep going this morning before the kids got up so I got some laundry knocked out too!
While I was working and getting breakfast for the kids, I received a text message from Amy that her water had broken last night. Hooray! She's been wanting this little guy to make his appearance for a while. I'll be honest, though, that I was a bit scared. I didn't like the sound of her doctors from when she would call and report on how her visits went. She had her first c-section with Dillon, #3. One doctor just tried to discourage her from even attempting a VBAC (Vaginal Birth After Cesarean). Most doctors who don't want to even give their patients a TOLAC (Trial of Labor After Cesarean) can give plenty of numbers to support their cause. However, the risks involved in cesarean sections are rarely mentioned. My favorite mind-boggler that Amy told me was that one of the doctors she saw mentioned that she would be more optimistic in Amy's case if she had at least had a vaginal birth before her c-section. Ummmm... Fingers were definitely crossed and suspense initiated.
Timmy had his appointment with Dr. Parry this morning at 11 so I dropped the other kids off at Tawna's at 10:30. (Never any argument there. They LOVE playing with Maya and Brennan so it makes it a little easier to get out the door.)
I'm not exactly sure where I'm supposed to park when we go for our visits. It seems to me like there is only one visitor parking lot even remotely close and it's supposed to be designated for the patients of the two adjacent buildings. Today was the first day I've ever seen the security guard out there. I just made sure I gave him a really nice smile and hello as I pushed Timmy's stroller past him and headed for the third building. (I could only exit that side of the parking lot without walking a mile around the first two buildings.) Happy to report that my car was still there when I returned.
The waiting room was pretty full so I took a seat next to another lady with a baby. Glancing over, I noticed a suction machine that looked just like mine in the bottom of her stroller. So I asked how old her baby is and the conversation went from there. It was amazing the similarities between our little guys. He was a 25-weeker, 1 lb. 9 oz. He is the third 25-weeker in his mom's family to be born in the past year or so. Crazy! He developed the same symptoms that Timmy did with the jaundice and distended belly and was taken to the OR. They never could figure out what was causing the issues. His spleen and liver were both enlarged, but suddenly did a 180 and shrank. However, due to being intubated as a result of his surgeries, he developed a stenosis and was eventually trached. (Boy did that conjure up some emotions! Hmmm...here they come again, in fact!) He is 7 months old and spent a total of 5 months in the NICU.
His mom asked me if I ever hear weird sounds from Timmy's trach. No... She has had to do CPR and use her emergency bag more than a few times. At one point, she had to rush him back to the hospital and tell them that something was wrong. As it turns out, he has two rings of stenosis, one above the trach and one that was hiding below where the trach used to end, so they had to put in a longer trach. She told me that he has about 50% of his airway cut off. I asked if they were just waiting for him to get bigger to do the surgery for decannulation and she informed me that she isn't sure they'll be able to. Considering that I was originally told that Timmy's airway was 70-80% obstructed, that kind of freaked me out, but I think part of her son's problem may be the location of the stenosis. Wishing them the best! (She is a single mom, never planned on being a mom and split with her boyfriend up in Phoenix before she even knew she was pregnant. Fortunately, her insurance pays for some in-home nursing care and she has a lot of family in the area that come and help. She mentioned a few times that "people have no idea" how hard it is. Truly, it isn't easy. Mostly I just find it very time-consuming and tedious to suction, clean and change trachs, trach ties, the stoma...clean the suction machine, hook up the apnea monitor, make sure the suction machine is charged... The first days home were by far the most difficult. Mostly because the responsibility of the trach was still so new and we don't have any in-home nursing care so anytime a little person was awake, so was I. I will never forget hitting the wall about five days after my mom left after coming to help with Timmy. I was beside myself in tears of complete and utter exhaustion as I called to beg her to come back the following weekend. I have never had to do so much on so little sleep before in my life. At least when the twins were born, Trevy was still napping too so I knew I could snag a nap at some point. Boy do I miss those days...)
THE VISIT
Sorry, that was quite the tangent. ANYWAY... Dr. Parry was very busy today. We were probably the twelfth on the sign in sheet and only two patients had circled a physician other than Dr. Parry. Which is never a good sign. Sure enough, we didn't get to see him until about noon. But he's such a nice guy. He asked how we were doing and couldn't believe how much Timmy has grown since we were last in back in March. He really does look a lot bigger these days (especially next to other younger former preemies).
And then Dr. Parry noticed the Passy-Muir Valve. He looked pleasantly surprised. Dare I say stunned even? He asked if Timmy vocalizes with it on. I gave him the whole story of not much the first two tries and then he's gradually worked up to where he can wear the PMV pretty much all day long. And, yes, he does make lots of sounds. (On cue, we got one.) Dr. Parry said that that is a great sign, indicative that Timmy isn't as closed off as Dr. Parry thought he was. With a tigher stenosis, the sound would be much more airy and much more work for Timmy. The whole time, Dr. Parry just seemed awed that Timmy has done so well with the PMV. (I don't think he was necessarily shocked, lest anyone wonder that we're taking our son to some quack who has seen Timmy's throat and should know just how closed off it is. I think it's partly that Timmy has grown so much - his weight has doubled - since Dr. Parry last did a bronchoscopy last July. He also never said he didn't think the PMV would work for Timmy, just that it works for some and not for others. Some kids like it and some kids hate it. Soooo glad that Timmy likes it!)
I thought we were going to do a bronchoscopy next month to see how Timmy's throat looks but Dr. Parry wants to wait until we're closer to decannulation. It will just be a quick trip to the OR for a look-see to see what will be required in order to remove the trach. At this point, everything seems very stable so it doesn't look like we'll even need to upsize the trach. (He's still on the 3.0 Neo Shiley he left the NICU with at 6 pounds.) So we'll head back to see him in December and probably talk about the bronch at that point. Right now, December seems so far away but when I think of possibly having Timmy decannulated only four of five months after that, decannulation feels right around the corner!
***
Lisa sent me a text on the way home that Amy was at the hospital. We texted throughout the afternoon and I called Amy at one point. Progress was slow. She went in at 10am dilated to 4cm and stayed there at least until I called at 2. I was so scared that her doctors were going to push for a c-section, claiming failure to progress but, happy to report that Seth Mitchell Fulps was born this evening at 8:41pm weighing 7 lbs. 12 oz. and measuring 22 inches long by successful VBAC!!!
Congratulations Ray and Amy!
(Wow, not even half an inch shorter than Timmy! Crazy how long "normal" seems after having a foot-long infant.)
No comments:
Post a Comment