When we found out we were having twins, they became the Drake Ducklings. I’m not sure when or if they’ll outgrow that, but right now we’re just like the mom and dad duck trying to keep up with them.

Reentry

I’m happy to report the “Button” is home!  Monday’s scope went awesome, the Dr. was very happy with the LTR. The swelling was down considerably the treatment of the cysts (nodes) was successful and her vocal chords were in good shape. What’s next? Dr. Brown wants to see her in clinic in two wks and wants to do another scope on Oct 3. We are hoping following that scope there will be a longer, like a year, break between the next one. Fingers crossed. We are also following-up with the speech pathologist. While both ducklings were getting speech through the county we all (Dr. included) felt she would need more help following this surgery. We have a lot of scope pictures that I’d like to share, I’ll warn everyone in case that isn’t something you want to see ;). Reentry into the house was a little rough, but after two weeks of chaos and having mom or dad sleeping in your room it’s not surprising. It started around bedtime with crying and ended up with two girls in pack n plays in mom and dads room. Night two proved better they went down without issue and slept until 7:15 here’s to hoping… Thank you for all of the...

Two weeks tomorrow

As of tomorrow we have been at the hospital for two weeks. While on one hand it has gone quickly, it also feels like a lifetime. On Friday the Dr decided he would like to keep her over the weekend just in case there was any swelling form removing the nodules.  She was taken off of bed rest and only needs the pulse ox at night but she still needs an IV just in case. She was also allowed to roam the halls and have a special visitor. Saturday we brought Morgan for a visit, there was hugging and kissing and patting and giggling. Tomorrow she goes for another bronch to check on the nodes. Here’s to hoping all is well and we get to take the Button...

Thank you for your patience, this is a long haul

When a Dr thanks you for being patient, when you are the least patient person you know, you must be doing something right?!?!? Tuesday was the swallow study, it was improved but not enough to discontinue thickening her liquids. This isn’t a big disappointment as it wasn’t the reason for the surgery we were just hoping the surgery would have helped it and it may over time but at the moment not enough. She also got her mainline IV taken out on Tuesday and was allowed to begin eating solids again. On Wednesday she was moved from the PICU to a regular floor and got her feeding tube removed. She is eating well and seems happy to be able to. She has also started smiling and laughing more, which helps us and the Drs and nurses too. On Wed night they replaced her IV and this morning she had a follow-up bronchoscopy (bronch) to see how her LTR was healing. A couple of nodes (common with the procedure) developed just under her vocal cords not on the graft. The Dr. had to treat them (i.e. cut them) and we have to remain at the hospital until tomorrow. It also means she will need to come back and check back into the hospital Monday for another bronch. She is also getting a dose of steroids for the next 5-7 days. Given the situation and the need for Monday we’re not sure we will actually go home this weekend. So deep breathes and one moment as a time, as I try to muster all the patience I...

waiting for tests

Let me start with some great news, Sutton’s incision looks fantastic, the Otolaryngology team is happy with her progress! Her vitals are right where they want them to be. Next steps, tomorrow (Tues) she has a swallow study test to see if she is still aspirating, Thurs she heads to OR to check on her LTR and if all is right we may be headed home Thurs or Fri. What happened along the way? On Friday night Sutton started getting splotchy or a slight rash after getting her antibiotic. We watched and it happened the next time too. The Drs were notified and they decided to switch her to a different  antibiotic on Saturday night and unfortunately she also got a rash. The Drs were a bit surprised… so we have to follow-up with an allergist to see if she has a Penicillin allergy. On Sunday her O2 level was fantastic so she got to lose the cannula :). They also wanted to put the feeding tube (NG) back in so they could resume feedings, she had thrown up the last one which is apparently difficult to do. They put it in, which if you’ve never seen is dramatic, and she was gagging and choking but the nurse and I decided to give it a college try. Over time she stopped and about an hour after she put it in they began feeding her again. On Monday she got to lose her central line.  She is definitely coming around, we saw actual smiles today and even some giggles. As she goes to bed tonight she only has her NG...

Rounding second, trying to steal third

Tuesday night she proved us all wrong. Her temperature leveled off, her BP looked good. Wednesday morning her x-ray was improved and all of the Drs agreed that if she could maintain this she would return to OR for a scope and removal of her intubation tube Friday morning. She fought the sedation meds all day and last night and had about 4 of us holding her down at one point but she kept her vitals in line and this morning’s x-ray looked even better. There was a little discussion around her respiratory rate but they decided it could be the sedation, or mucus and they were still going to move forward. So around 8 am she headed down to OR; ~30 minutes later we got word that all was ‘well’ and they removed the breathing tube. She returned to the room and started to wake up within the hour. She was a little riled up but slept in our laps for most of the day. Just as I thought we were going to steal third, she started having withdrawals from the meds and we got sent back to second. A friend had warned me, but I wasn’t prepared; she was vomiting (including her NG tube), she had/has the shakes, twitching and withdrawn eyes. But she is maintaing good O2 levels and the Drs. are happy with her incision. Hearing mama today helping me see home plate, and while we still have a long way to go I’m ready for the fly ball, the grounder and the pop-up....

Riding a real life millennium force

Last night was uneventful, which considering nights are usually worse was a good thing. Around 5 is when things changed a bit. Her blood pressure (BP) was starting to come in below normal and she had a slight fever (slight for our pediatrician but later we learned high for the PICU). There was also some cloudiness on her chest X-ray. All of this might mean an infection, like pneumonia or it might just be a result of the surgery but it definitely means having her intubation tube taken out on Friday isn’t likely.  When I first spoke to the ENT he was saying next Wed, to allow the antibiotics  7 days to work. From our perspective this is concerning because she will have to continue to be intubated and sedated during that time.  The intubation can cause further infection and when you stop sedation you have withdrawals and the longer you’re on it the more you have. Also they are having to change up the sedation meds regularly because she is still waking up occasionally, in fact she tried to sit up while we were at dinner (why I have a hard time leaving the room). I spoke to him again this afternoon and he said that we will take it one day at a time. They’ve taken some labs to run cultures but those take 24 hours, anesthesia will have a concern with her temperature and her BP if it is still low. So we ride and watch the monitors. Thank you for the continued prayers and support....

This is a marathon not a sprint!

As I sit in PICU and reflect on the stress, tears and crazy organization mode I’ve been through in the last two weeks I realize that was my way of dealing with the unknown and lack of control. The scariest moment as a parent, is when you hand your daughter over to the medical team, while completely competent, they’ll never be you. That happened around 12:15 today, around 12:45 we talked with Dr. Brown and as suspected her airway was severely restricted, she was stable and he was ready to do the laryngotracheal reconstruction surgery or LTR. At 3 pm we met with him post surgery, everything looked good she would have drainage tubes at the site as well as being heavily sedated to keep her from moving and allow her to heal. For those of you that like the medical part, they used a 3mm tube at the beginning (same size that was used at birth) and a 4.5mm tube currently. Just before dinner she woke up slightly, long enough for me to sing to her, caress her head and wear my momma’s here hat. The plan is to recheck her on Friday and potentially remove the intubation tube. So we wait.  ...

What Causes Noisy Breathing?

Bet you never really thought about noisy breathers, other than if they were interrupting you or in your personal space. We first learned about Strider (noisy breathing) and Subglottic Stenosis after having 29wk g/g twins in Dec 2011. One of them had a hoarse cry and noisy breathing. You can learn more on noisy breathing here. After a visit with an ENT we decided to see if she outgrew it. All was well until July 2013 when we found ourselves at http://www.mottchildren.org hospital. After a one week stay we were discharged with a diagnosis of Asthma and possible BPD and follow-ups that included an ENT and swallow study. After a swallow study that showed aspiration we visited with the ENT where he did a scope to check her airway.  As reference an adult’s airway is the size of a quarter, a child’s the size of a dime, he believed hers is the size of a coffee straw.  When we get a cold we build up mucous in that area that further restricts our breathing. Since we are heading into fall it was important to find out what was going on as quickly as possible. Tomorrow we will find out. They will do a sedated scope to see what the restriction looks like and if it is restricted they are recommending a laryngotracheal reconstruction, using cartilage from  her thyroid. This is the best description of the procedure (I haven’t watched the video, some things are better left to mom’s imagination) http://www.chop.edu/service/airway-disorders/conditions-we-treat/subglottic-stenosis.html As you can imagine tons of questions and lots of worry. The advantage of using the thyroid cartilage vs. rib is one...