Wednesday Morning Update

Now that Maddy is out of sedation, she is a lot more restless when awake. They did give her a bit of morphine last night to control the pain, but she every time they came to check her breathing and other vitals, she would wake and fuss a bit. So I didn't really get to sleep through the night. And my back is way out of wack (more than at home) this morning! Ugh. Oh, well, at least I have a "bed" and not just a chair!

The doctors just rounded and they've decided to start her feeds today. So one more step closer home. I imagine it will be a few more days, though, since no one has said anything about her going to the third floor (out of intensive care). We'll see, but in the mean time I'm going to enjoy my stack of books. One down, three to go before I'm out of reading material, but the one I'm on now is very thick. And Half-Price books is just down the road, so I'm really set! :)

It sounds like they are going to take the arterial line out of Maddy's arm today, and that will make her more mobile and allow me to hold her. She's in restaints now, to keep her arm still. When I say restraints, the mental image is much more horrible than it actually is. They have the little ribbon just lighty attached to her, but not enough that Maddy notices it.

Well, I'll update if there's anymore news, but hopefully we'll have another drama-free day. Stay tuned for more picture catch-up!

Tuesday night update on Madeline

Maddy was successfully extubated at 8 PM! She sounds rather course after all that junk in her throat, and she's retracting a lot, but they're pretty pleased with how she's doing.

As a funny side note, the RT (respiratory therapist), Aaron, has the hiccups really bad. The poor guy's stomach has to hurt because he's had them for at least 2 hours now! Oh well, I can definitely tell he's not drunk, so at the moment, I just can't help but laugh.

Congratulations to Brent and Lyndsi on the birth of Rylee! I can't wait to see pics!

Picture catch-up

If you are looking for an update on Maddy's surgery, there are three updates below this post! Just keep scrolling, scrolling, scrolling!

Monica McMain loaned me this little dress for Maddy. Way too cute!


Silliness while waiting on Daddy to park the van at the IWU employee Christmas party.












The girls were excited to see the IWU Santa.

Olivia got a play dish set for her present from the IWU Santa. We were stuck in that little alcove for well over an hour waiting for a tow truck to change a tire for us. (Yes! We do know how to change a tire, but just a few weeks before, when changing yet another flat tire, the jack gave way and the whole van landed very heavily where the jack was supposed to be. So we had no jack, and besides, that's why we have roadside assistance on our insurance!)

Maddy Surgery Update #3

Hello to all the Loyal Madeline Kate Fans! Thank you so much for all your prayers and support, emails and calls over the last 24 hours! And to Kirsten and Diana for taking good care of my girls (and house!) while Glen and I were both in Indy. Love you ALL!

Maddy is still intubated, but it looks like they have stopped the Fentanyl drip. She is moving around a bit (more like flailing), but she is still asleep, thankfully. Her poor little chest is bright red with a rash from all the leads (partly from the apnea monitor at home, but piled on by all the hospital leads). But I was given the coolest tip by another SB mom: Pepto bismol! Dab it where you want to put tape, let it dry and then apply the tape. If it works for tape, just maybe it will work for leads??!!

One of the pediatric pulmonologists came in just a bit ago to do a bronchoscope while she was still sedated and intubated. The only drama Maddy provided was dropping her heart rate just a bit when they were scoping. Dr. O'Connley took samples of the secretions to test for chronic aspiration issues. Even with the Chiari decompression, she thinks it's definitely necessary to go ahead with a G-tube (gastric tube for feeding) placement. She feels like she's been getting it from all sides (brain, reflux, etc), and that we need to let her fully recover before we go back to PO feedings (PO=by mouth). She's consulting with Dr. Schaefer, the GI doctor about this. I think I agree with this decision. First, the NG (nasogastric--through the nose to the stomach) tube could also contribute to airway obstruction and cause more apnea, and it's just not a good plan for more than a few weeks. It's a very minor procedure to place the G-tube, and it can be removed without surgery/sedation and leaves the tiniest of scars. And, ever practical, I have to take the pros with the cons, and one big pro is if she's being fed via NG or G-tube, insurance will cover the formula!

Ok, about that question re: the bone removal. I told you Dr. Young (neurosurgeon) said that he would remove the top vertebrae to do this surgery. We weren't sure if it was replaced or not when they finished the surgery. He did not. He removed that top vertebrae and a small section of her skull to give the brainstem more room. He placed a patch instead, that again, will give the room needed.

The MRI from last night did show a syrinx (a cyst filled with CSF--cerebral spinal fluid on the spinal cord). They will check this again in six months to see if it collapses now that the decompression took place. (They saw this on the MRI last week...The MRI last night just confirmed it).

I do believe that's all the news for now! I am getting ready to post more pictures soon!

Maddy Surgery Update #2 (PLUS PICS!!!)

Madeline is all settled in her room in Peds ICU (PICU). She's intubated and sedated, partly for pain management and partly because they want to do an MRI with sedation tomorrow morning. I'll tell you what, it's still a kick in the gut whenever you see her for the first time, as pics below will show. But I'm rather glad she's sedated, because hopefully she'll be over the worst of the pain by the time they wake her up.

I took this picture yesterday evening before church. Notice the adorable little shoes (from Aunt Pam and Melanie for the baby shower). And hopefully you'll notice how much weight she's putting on now that we're on the NG tube.


This morning before we left home.


Pre-surgery: One last hug from Daddy. She was pretty happy considering she was hungry and Auntie was telling her all about her breakfast.


Post-Surgery: On a ventilator, and head wrapped to protect surgery site. (The kick in the gut, on first sight.)

Maddy's Surgery Update #1

Maddy is out of surgery, and we are waiting for her to get settled in her room. The only drama was that she did have to have a blood transfusion, but we were aware from the get-go that this was a possibility. We had to have her blood typed and crossed this morning so they could have blood on hand.


A lot of people are asking what this surgery was all about, so here goes. On Monday we found out that Maddy's sleep study (on 2/20) came back pretty bad. She'd gone from an apnea index of one per hour in August to 15/hour. We went for an MRI on Tuesday, and it showed that the Chiari malformation II was making things be pretty tight in there. Spina bifida pulls the brain stem down into the spinal column, and this can put a lot of pressure on the brain stem. I think all kids with SB have Chiari malformation, but many are asymptomatic (no symptoms) into adulthood, or never have issues. In this surgery, Dr. Young removed the top vertebrae (we think he put it back, but we're debating what he meant by some other comments), and shortened the cerebellum tonsils (not necessary for life or development) to relieve some of the pressure.


She is still intubated (on a vent) until tomorrow, when they will do another MRI.


Please pray for a speedy and comfortable recovery for Madeline, and that we can steer clear of any drama this time! :)


Thanks for all your prayer and support! Aunt Pam has been here all day (and toting an awesome bag full of fun stuff). Pastor Kraig (Children's pastor at our church) came and prayed and hung out with us for a while; and Susan Hawkins and Annie Claire stopped by in between appointments (Annie also has SB and had open-heart surgery last month), also bearing a lovely little gift bag!

Pictures coming soon!

Hugs,
Pam

Another surgery coming right up!

Just wanted to give you all a quick update on Madeline. We are heading to the operating room once again on Monday, this time for a brainstem decompression. I will give more details later, but please pray that this will take care of breathing/apnea issues and feeding as well. As with any surgery, please pray for no problems with anesthesia or infection! From what we understand this is a painful recovery, and Maddy will be pretty cranky over the days following surgery.

Hopefully I'll have time in the hospital to post a bunch of pics!

Hugs,
Pam