Our 5th daughter, Meagan, was diagnosed with severe Congenital Hydrocephalus at our 20 week ultrasound. Her story has propelled our family on a new journey. I hope to keep track of Meagan's story here to help other parents who may face a Hydrocephalus diagnosis for their child, and to celebrate Meagan's life.
Today Meagan got her g-tube! It might seem crazy to be excited about something like a feeding tube - but I really am. As our GI doctor said - sometimes feeding tubes have such a negative connotnation, like it's a defeat or a disappointment. Actually I have learned it's quite the opposite.
I'm not going to lie. It was a little bittersweet - not because I thought it was ever the wrong decision - simply because it would be a change to how little Meagan looked. It was changing that cute belly I have snuggled for so many months. I knew what I was feeling was normal - even when we do what needs to be done, sometimes it can make us feel a little twinge of emotion over what may seem like silly things to others - but actually have a lot of meaning to the parents in that particular situation. I took a few "last pictures" of Meagan's bare little tummy and then got the kids settled with my sister in law who was nice enough to fly in and help (Thanks Aunt C!). Then off to Children's we went!
Playing while waiting
Not so happy anymore - needed Daddy snuggles!
We checked in and got Meagan all prepped for surgery. Dr. B (the GI doctor) and Dr. P (a general pediatric surgeon) came to get Meagan and off they went. It was about an hour total time, but only 20 minutes of that was the time needed to actually place her tube! Not that any surgery is "easy"... but compared to what Meagan has been through, a short tube placement sounded like heaven compared to a 5 or 7 hour brain surgery.
A few last bare belly pics
We saw Meagan up in her recovery room where we will stay for the next few days. The nurses showed me Meagan's stomach It is definitely changed as the tube is now there, but it's just as cute. They talked to us about the supplies we would need at home, caring for the PEG (what her g-tube is called), and also different circumstances that could arise and what to watch out for. Before I could even ask, the medical supply company was on the phone with me and said they would actually send someone out tonight to drop off all Meagan's supplies, complete the paperwork, and go through the training of how to use all the different equipment and pump.
Meagan is such a joyful child. She actually loves food. Anyone who knows her sees her reach for food, and willingly try almost anything you give her. However, they also see her chew on the one piece for the entire meal. Or chew on it for several minutes and then take it out of her mouth. Meagan is so innately happy and has such an interest and love for food, I am so relieved we have her g-tube now so she can simply eat for what it is to her - joy. If Meagan wants to eat part of a pizza crust for an entire dinnertime now, there's no stress. We just put her calories through her tube. If Meagan eats great one day but is short the calories she needs to keep growing stronger..it's no stress. Just feed her through the tube. If Meagan still doesn't drink out of a cup for hydration - no big deal. We hydrate her through her g-tube.
One other aspect that is going to be great is giving meds. Meagan has always been a trooper with her meds, but it is very apparent she doesn't "like" to take them. Many times I'm using all kinds of tactics with the syringes to make sure she gets the full doses by mouth each day and night. Now with her tube, we can take all that negativity away from her mouth. Tonight the nurse helped us give Meagan her meds for the first time through her tube. It was so easy and we didn't have to upset her at all from her rest.
Didn't even have to wake her for her seizure meds
Meagan will have her PEG for three months. After that we will come back to get a MicKey button which is a much smaller little cap she can keep easier for long term. When we go home, she will start on pumped continuous feeds to hopefully minimize any reflux or vomiting that could occur as her stomach heals and gets used to the tube feeds. If she tolerates those ok, then we will move towards bolus feeds (where we feed her whatever she didn't eat orally through her tube).
Overall today was a great day and another positive step for Meagan. I'm looking forward to seeing how strong she gets now that we have this "safety net" for her eating. I know it's early, but I know this g-tube is going to be such a blessing for her. Thank you to all the helpful "tubie" families who guided us through this process and gave us all the perspective we needed to know this was the right thing for Meagan.
We are almost two weeks post op for miss Meagan. So far, except for a few little bumps in the road, everything seems to be going well. Pain management has been a huge part of our time over the last 13 days. As you can imagine, the incision down the back of Meagan's head into her shoulder area was not only extremely tender, but also very painful whenever she tried to move. For a long while, she wouldn't even move her head to the side to look around. If she heard my voice in a room, I would just see the slightest movement from her little eyes looking toward my direction - but ask her to move that neck, oh, no way! I don't blame her... she handles everything so much more gracefully than I would!
Early in her recovery, Meagan started to spike fevers . I also noticed her incision go from pink to an angry red. I sought the opinions of my expert Hydro parents and we all agreed it didn't look right. I didn't *think* it looked infected, but just "mad." Mad is really the best word I can use to describe it. I did have the Pediatrician take a peek at it and she agreed that it didn't look infected, but, it also didn't look very good. She said in a few days if it didn't clear up to call Dr. R. Sure enough a few days later it wasn't cleared up. Matter of fact, it was worse and a few spots along her incision started to open up here and there letting blood escape. On my gut feeling, the doctors' advice, and the hunch of my hydro friends, I decided a quick call in to Dr. R wouldn't hurt. His nurse was very receptive and looked at an email of Meagan's head. She said of course Dr. R wanted to see Meagan right away if we could make it down to Children's. I agreed and luckily my sister in law was here to watch the kids for me so I could leave right away. (Thank you K!)
Dr. R was in his lunch hour, but, he stayed behind to see Meagan. (which I thought was very nice because we would have gladly waited until after lunch knowing he was squeezing her in). He was puzzled by her incision because he said it didn't look *too* much like it was getting infected, however, he could not firmly say it wasn't on its way to infection. Knowing how close that area is to her shunt, and knowing she had g-tube surgery coming up, he decided to go ahead and treat her empirically for infection with a hefty two week dose of Keflex. I was in agreement because especially with infection, and especially with Meagan, I'm always of a "better safe than sorry" mindset. He told us to come back in two weeks and let him know if it got worse at all or if anything else came up in the mean time.
Two surgeries in two weeks? Who does that mom!
We started Meagan on the Keflex that Wednesday. For several days the incision looked the same or even worse. Then by about Friday night I noticed it started to look better. More dark pink instead of angry red and less oozing. I was relieved things seemed to be on the upswing. But then Sunday, as the day went on, I noticed her incision looking quite red again. What caught my attention this time was the redness spreading. It didn't just "hug" the incision as it had done in the past....this time it was moving. But only to the right side. That made me uneasy because on that right side is Meagan's shunt valve. And directly on top of that valve is where the redness was spreading. Not to the left at all. It really made me uncomfortable how the redness returned and how it seemed focal on her shunt side, but, she was also still extremely happy and playful, so I didn't see a need to panic. I talked it over with Brian and a few close friends and decided a call in to Dr. R today might be a good idea just to let him know what's going on. Again, I really don't think it's infection, but, with redness returning and focusing so strongly on that right side, it can't hurt to have him look at it again. The last thing we want are any complications with recovery - but most especially a shunt infection. Those are nasty, dangerous, and take quite a long time to rid from the body. We have her g-tube surgery coming up this Friday, so we want to make sure everything is going as smoothly as possible beforehand, so we will see what Dr. R says today.
Redness spreading out from incision and creeping up towards Meagan's valve
It took about 5 or so days for Meagan to return to her playful self. She still would not move her upper body or neck, but, her smile, laugh and overall silly attitude returned and it was a great sign of recovery. Since then, I would say between about day 10-11 of recovery, Meagan suddenly has started to move her neck again. She will move it side to side to look around, she will attempt to pull her head forward and hold it up just like she did pre-surgery, and she will even roll to her side when laying on the floor with a toy. I would say Meagan is just about back to herself as far as attitude and mood. She is extremely happy and just has a zest for life I can't possibly transfer into written word.
It's kind of funny how hindsight works. Many times, we talk with our friends and family about how we "should have, would have, or could have" done something better, differently, or in another way. Hindsight is always 20/20.. and that's a good thing so we can learn and continue on with less mistakes. But sometimes we get a nice surprise. Sometimes looking back actually gives us comfort, and doesn't have any regrets. Sometimes we get that 20/20 view of a tough decision we made that turned out to be the answer we needed.
So content watching her sisters' Irish Dance show
That's how Brian and I feel about Meagan's recent Chiari surgery. It was a tough decision - a very invasive surgery and everything that went along with it. But to 'let' her exist with her pain episodes when we knew there was a chance this could help - it just made the decision that much easier. Nonetheless, as parents we always want to do right by our kids. It may not be the painless path, and it may not be an easy one, but we always want to do what's right by them...what is best for their life. Weeks after such a surgery we were still holding on to that little "what if" questioning our decision to go ahead with helping relieve the Chiari. Now at this point I can confidently say it was for sure the right choice.
Meagan has had no pain episodes since surgery. None. Yep, you read that right. ZERO incidents of throwing her head back in discomfort, crying in pain, and pounding her head with her fists. She has also had a huge decrease in her apnea alarms. She actually went with NO alarms for almost two weeks until two nights ago when she had four in a row. She is also congested though, and I think that is affecting her a lot especially when sleeping. So removing that from the situation, it means healthy Meagan has had ZERO alarms.
Such a happy girl!
Anyone who knows Meagan well and in person knows above all she is a happy little girl. She is joyful and smiley and always loves people. Pain episodes aside, if you had told me Meagan could be an even happier girl, I wouldn't have believed you. But, she is. Amazingly since surgery, Meagan's mood and emotional state are even brighter and more joyful than prior to surgery. It's one of those situations where you didn't realize how bad she may have been feeling until we see the Meagan of today. Now being afforded that comparison, she is undeniably more comfortable, more silly, laughing and smiling more, and has even picked up a few new tricks. Her "copying" ability has suddenly gone through the roof in the last week.
Meagan attempting "peek - a - boo"
Got it!
Meagan's other new trick - crossing her arms.
Meagan's newest mimic as of last night - beeping her nose.
20/20 vision is not always available when making tough decisions about the future. But hindsight being 20/20 is a good tool on which to gauge such decisions. To look back even just 3-4 weeks ago and clearly see the huge positive change this surgery has suddenly brought to Meagan, we can certainly say with confidence it was needed. We see with full and clear vision the new improved quality it has added to Meagan's life - and that is what truly matters. We can't wait to see what other surprises she holds in store for us.
Meagan slept really well all night. Once she awakened in the morning, she didn't immediately start whimpering like the previous day. She even waved at me, and gave a "gritted teeth" smile. It was almost like she was saying "I don't really want to smile but I will so here ya go!" It was the cutest thing! Her nurse came in and said since she had done well all night she would ask Dr R if Meagan could possibly go home by the evening. I was completely fine with that because I noticed a change in Meagan - as long as she wasn't moved, she was content. Of course when moved, she cried out, but, as expected, that will happen for a few weeks. As long as she had contentment when laying once positioned, I was happy to take her home and let her finish recovering there.
Dr. R called around 10am. He was busy but wanted to call and make sure he was in touch with me because I had been down the hall getting coffee when he had quickly stopped by Meagan's room. He said he was also happy with her. Fever was gone. Meagan was eating. She was sleeping back on her usual nap schedule. And as long as we felt the oral pain medication gave her enough relief, he was fine weaning her off the IV that day and sending her on her way. I was in agreement. He apologized for missing me that morning and said he would stop by in the afternoon to make sure we touched base before leaving. Then we hung up.
As the day went on, the nurses were good about staying on top of Meagan's oral meds. They made sure to stagger medications for her because even one little lapse meant she was uncomfortable. Because of that Meagan was able to sleep a lot, and when she was awake, she was content giving me waves, blowing raspberries and for the first time in 4 days, making noises.
Ready to get home! Drinking more, off the fluids, and perking up!
I called Brian and told him to head our way from work. He was excited to come and take Meagan home. Towards the mid-afternoon, Dr. R ended up stopping in again. He said hi to Meagan and got a wave back. He told me he was still fine with letting her go home ... he said to call and make an appointment to come see him in two weeks so he could recheck her incision site and make sure all was ok.
Meagan's nurse came in after Dr. R left. She said Meagan was due for her take home oral med right then, but also could have another valium in about an hour. She said what she could do is give her med on schedule but then wait to officially give out discharge papers until after Meagan's next valium dose. That way she'd be a little more comfortable being shuffled around, put in the stroller, put in the carseat, and be able to tolerate the bumpy ride home much better. I was completely fine (and very appreciative) of that! So we waited around about an hour for Meagan to get her Valium. Once it was administered, we gathered up her things. With the nurses help, we carefully sat Meagan upright so we could work her shirt over her head. My heart skipped as Meagan cringed in obvious pain, but then leapt for her after the shirt was on and she gave me her "gritty smile." She is truly one strong and amazing girl!
We got her set up in her stroller and the nurses helped prop her head with pillow cases. We said goodbye to all the wonderful staff and medical team who had helped us all week. Meagan gave them one last "gritty smile" and we left!
Meagan decided we should have a movie night for her first night home
The ride home went pretty well. We got to the house and of course all the girls were so excited to see us. Well, Meagan I should say. :) The parade of little ones (my older kids and their little cousins who are here to help) went right past me and straight to give Meagan the biggest hugs and kisses.....as it should be. There was lots of "Mom can I see her stitches " .... "Hey mom, she doesn't look any different!?" ... and of course the girls correcting each other with "Let me see her first!" .... "Be careful of her head!"
After I put the big girls to bed, Brian cooked an amazing dinner for our "welcome home." We were able to hang out, talk, and visit with Brian's sister who is here to help. The food was definitely needed.. I think my body is about sick of liquids! And the good company was so great after a crazy few weeks.
Brian's yummy homemade salmon dinner (he should have been a chef).....
....and a little celebratory dessert too!
While dinner was being cleaned up, I had to change Meagan's diaper. As I lifted her legs to put the new diaper underneath, her eyes winced... but then she gave me a smile. I laid her on her own blanket and put some toys around. By the time I was back from throwing out the diaper, Meagan had completely passed out asleep. She was exhausted! Recovery will go smoothly I'm sure, and we will slowly work Meagan back up to what she was doing before. Hopefully, we see her having much more comfort in what she does because of this surgery. Best of all, though, is knowing she is home. We feel this is the best place for her to continue to recover and start to thrive again. It was great to see all my girls together again... and of course watch the big ones fawn over their baby sister. She is truly the glue in this family ... the last piece of the puzzle God knew we needed to make our picture perfect. And I'm pretty sure Meagan agrees.
Day 3 started off pretty rocky. Around 1am when Meagan was due for one of her meds, the nurse came in to check on her and administer her next pain med. She looked at her IV and thought it looked a little puffy. I hadn't noticed but upon looking at Meagan's foot agreed. The nurse said that sometimes on the little tiny ones the tape can cause puffiness so she would release some of it and see if Meagan's skin bounced back. As soon as she started to undo some of the tape, we could see it was much worse than a little tape pressure. Even though the IV was still functional, her foot was getting infiltrated by the fluids from the IV somehow and the nurse said before it got rock hard, we had to pull the IV. I hated to pull a perfectly functional IV, as Meagan is a really hard stick, but, leaving it in wasn't an option because it was going bad fast. The nurses took it out carefully and got some warm packs to put on her foot. They also put some blanket rolls under her foot to keep it somewhat elevated.
Notice a difference? Um, yea
Luckily, the head nurse on that night was the same male nurse we knew from her previous stay for her MRI. He has been pretty good at getting successful IV's in Meagan so we called for him. It took him about an hour to find a decent spot to try, but, once he did, he got a new IV in on the first try. We got her all settled down again and she finally went back to sleep. I was very glad the nurse was on top of things and noticed Meagan's foot before it turned into a really bad problem.
Meagan woke up pretty good that morning considering her crazy night. She seemed more content and didn't immediately whimper upon waking. We decided to go ahead and try to get her off of the IV medication and see how she handled oral pain killers. The nurse didn't want to take her from morphine and Valium straight down to Tylenol - she felt it would be cruel to submit Meagan to that kind of pain so suddenly, and I agreed. She said we would ask Dr. Reisner about stepping down to an oral pain medication that would be a good middle ground between IV meds and Tylenol to help ease her through the recovery.
Starting to keep an eye on everyone
We got a nice surprise visit from one of Meagan's little hydro buddies, James. And also another visit from her other hydro buddy, Jack. It was really nice of her friends to stop by and visit. We also got a few more gifts in the mail and a sweet note from one of her hydro friends in California. We really appreciate everyone's thoughts, prayers, cards and balloons/gifts for Meagan. She surely feels very loved and we feel very lucky for all her sweet friends.
As the day went on I was feeling increasingly bad. Not sick but just "off." I had felt dizzy and short of breath for a few days but basically ignored it to concentrate on Meagan. But yesterday it all seemed to culminate with me feeling very bad by the evening. I asked Meagan's nurse to do a quick check on me being so close to post-op. My immediate vitals looked ok but I still felt extremely uncomfortable. I was dizzy, shaky, my hands were tingling. I decided to go across the street to get checked out at the local hospital. The nurses assured me Meagan was in good hands and I left.
Once at the ER the doctor talked to me about my symptoms. He looked at my incision just in case there was any sign of infection but said it looked great. He said being so close to surgery he wanted to do a chest x-ray to rule out a post op clot and some blood work. I was fine with that. Thankfully the x-ray came back normal. My blood work however was all over. My electrolytes were low, my sugars were off and overall my body was out of whack. The doctor said with my recent surgery and then going from eating a really well balanced diet to strict liquids along with fatigue probably set my body into a tailspin and it finally hit me last night. He told me to ditch the water and stick to Gatorade/powerade to keep my electrolytes up, try to eat more soft foods that may have more nutritional value, and also ordered two bags of fluids before I left as I was pretty dehydrated. I felt much better after leaving and was rejuvenated to focus on Meagan and getting her home.
The nurses took such good care of Meagan for me
The nurses taking care of Meagan were absolutely wonderful. I can't say enough good things about them. I will certainly be writing a letter to Children's about the care they have shown her, but also the care they showed me when I wasn't feeling right. Meagan's nurses arranged rides for me, called me every hour I was gone to give me updates on Meagan and check on me, and upon returning made an effort to make sure I always had a cold Gatorade/powerade in my room and was feeling ok. They have been great this whole week but last night proved just how awesome they truly are. I am very thankful to have such good care for Meagan and to also know that their genuine concern for patients has no boundaries.
Overall day 3 was definitely a step in the right direction. Meagan started to tolerate some of the oral medications well. She still seemed to be comfortable from her pain but was more alert. She had more instances of opening her eyes. She even started waving, to Dr Reisner of course. And as long as the nurses talk to her first, she even gave them a few waves. (though she still keeps a suspicious eye on them whenever they enter the room). She started to take an ounce at a time from her bottles. I think Meagan definitely has started to hit the curve - her alertness and willingness to show bits of her personality are great signs.
Starting to take a few ounces here and there
I'm hopeful that day 4 will bring more good news and positive strides from Meagan.. Yes, she still has a lot of pain if moved or re-positioned, but that is expected. Our goal for her to be discharged is at least to be content once laying still and showing signs of appetite and being herself. I think we made good progress with that on day 3. If she keeps on the path of showing contentment, keeps taking her oral meds well, and continues her improvement, I'm even hopeful (dare I say) that we may be able to go home by Friday night. (shhh!)
Today has gone pretty well for Meagan after a rough start. By pretty well I don't mean she is snuggling, or eating, or even really awake all that much - but she is comfortable...for the most part. That is always my first concern after she goes through a procedure, a surgery or a seizure - comfort. It seemed like it would be an impossible goal this morning because she was certainly a very unhappy little girl.
Last night Meagan's pain kept her up quite a bit. We started to have some success, as I wrote about yesterday ... but as the night went on she became increasingly uncomfortable. She also spiked a fever so we had to add Tylenol. She had hours of whimpering and crying and that heavy almost "walking on eggshells" breathing that happens when one is in pain. Around 1:30am the nurses were finally able to get her on a good regimen of the valium/morphine rotation again and we had quiet in the room - she was sleeping! I took advantage of the peace and also slept from 1:30 until about 5am but then awoke to her whimpering again. My poor sweet girl! She wasn't screaming but just seemed extremely uncomfortable. I knew coming into day 2 would be hard - it is always that second and third day of recovery that is almost worse than surgery day itself. The nurses worked hard again to change up some of her meds and once again we had a comfortable, sleeping Meagan.
Boo for fever
Yay for sleep
My mom was able to stop by and visit as she left town. It was nice to see her and to have her be able to give Meagan some snuggles before she left. As soon as she leaned over the crib to talk to Meagan, Meagan's eyes turned towards her. She definitely recognized my mom and slowly she reached one hand up towards my mom's face. Still not a lot of smiles or activity, but a definite sign she was happy to see my mom and enjoyed her visit. Soon after she left my friend Lori also stopped by. She brought Meagan her favorite two things: a stuffed animal and a pack of Pediasure. She knows Meagan well! Meagan once again reached her hand up towards Lori, showing recognition and also contentment with her visit. I was happy to see these little glimpses of Meagan's personality.
Nanas make it all better
A sweet gift from Miss Lori
The rest of the day went fairly quickly. Her pain was managed constantly by meds. The Neurosurgery resident from Dr. R's office stopped by to check on Meagan. He realized her pain level was high, but, as far as surgery results and recovery went, he was happy with her progress thus far. He said she was free to have her catheter removed and he put an order in for her to be moved out of the ICU. She had gone through the night and most of the day with steady vitals, so he said there was no reason to keep her in the PICU. He called in for her to be moved where she may be a little more comfortable and have her pain managed a little more without all the "chaos" that the ICU brings.
Some good news that happened in the afternoon was receiving a callback from Nurse J, Dr. B (GI doctor)'s nurse. She had already spoken with Dr. B and they had gone ahead and scheduled Meagan's g-tube surgery. Yay! She is all set for two weeks from now to have her g-tube placed. It might sound strange to some, especially those outside the special needs community - but I am beyond excited for her g-tube. Meagan has struggled so long with weight, it feels awesome to take something else off her plate. Take another battle away from her and just let her have some peace! She can always eat orally, but now the pressure is finally off. No more worrying about calories from eating... no more worrying about if she was burning too many calories by trying to eat... no more worrying about losing weight when sick or having surgery. Meagan gets to eat now just for the joy of eating. And we can take care of the rest (including her meds) through her g-tube. What a blessing it is to have a way to help her and let her retain the joy she finds in food. I also feel like we are one step closer to checking another box in the "list of things Meagan needs to do" column which hopefully will lead her to have an uneventful Spring and Summer.
**Warning** Incision picture
Meagan's incision - from the base of her head to the base of her neck between her shoulders.
As we stand tonight, the goal is simply "staying ahead of the pain." Her nurses have her morphine and valium set on a really good schedule and hopefully it keeps working. Her incision was leaking a little bit on her pillow but they are confident it's nothing bad. If we can manage the pain and keep that incision healthy these next few days I know Meagan will get the rest she needs and will have a much more pleasant recovery experience. Dr. R did stop by later tonight to check on her personally. He said although she seems uncomfortable, it was not unexpected. The nature of the incision and the surgery was intense and invasive in a highly vascular area with a lot of nerves and soft tissue. So we just need to give her time and let the medication do its job in helping her to relax. He was hopeful that as long as no surprises arise, he may be able to get her home before the end of the weekend. He said he would check in on her tomorrow and for now both of us try to rest.
So we can scratch off day 2 of recovery. We were pleasantly surprised, again, to receive a few more gifts for Meagan. I love how the happy dancing colors of the balloons and the sweet soft feel of the stuffed animals are tangible reminders of just how much our sweet girl is loved. She is (and we are) truly blessed with our dear friends and family. I'm happy that Meagan's pain is definitely under control now and that other things, like her g-tube, are falling into place. I can actually, dare I say it, see an "end in sight" to our crazy few months (I think). I miss my older girls a lot, but I'm very blessed to have them in good hands so I can be here with Meagan. Not exactly all roses, but what is? You don't get that beautiful red flower without a few thorns on the stem.
Meagan's surgery day finally arrived. Some people asked how I was so calm leading up to it, but I honestly was more than calm - I was relieved. It's a funny thing to "look forward" to a surgery. It's not something I would ever "choose" for my child, nor want, but when it is a necessity for them to feel better and hopefully move forward with their life, it becomes a rather easy thing to deal with... for me at least. The waiting was really the hardest in the last few weeks because it seemed like an eternity. To wake up today and know we were finally taking action to hopefully bring some relief to Meagan felt comforting...and right.
The day started rather early. Meagan was NPO (no formula/food) starting at midnight. She typically sleeps through the night, or at least until 5am. Of course last night she woke up at about 2am, but could not have a bottle since we were past midnight.. she was not a happy camper. We were told between midnight and 4am she could have some clear liquids, so we attempted some Gatorade in a bottle, but of course she didn't want anything to do with that. Hence, we had a screaming fussy baby from about 2 o'clock this morning all the way until she was taken back for surgery around 8:45am.
Someone was tired out from crying all morning
Once we arrived at the hospital Meagan was checked in, had vitals taken and was taken down for a CT scan. Dr. R wanted one last good picture to double check what he was doing and where he needed to work on Meagan. Once the CT was completed we went back upstairs and waited for the nurse to come in with Meagan's pre-op meds.
Seemingly unamused by the morning cartoons
The nurse came in, went over our questionnaire again, and gave Meagan some Versed to help calm her down before she was taken back. The change after the Versed was almost instantaneous. She went from crying, fussy and untrusting to happy, smiley and relaxed. It was nice to have a few moments of smiles, even if goofy, before she had to go for surgery.
Before Versed
After Versed
Dr. R came in. He pulled up Meagan's MRI pictures again to go over in detail exactly what he was going to do. Dr. R told us it would be around 4-5 hours for surgery, give or take. He said we could walk around the hospital and bring our cell phones with us for a few phone calls from the OR, which would keep us updated on how she was doing. We said our goodbyes to Meagan as Dr. R finished explaining the procedure to us and then the wait began.
Daddy getting some work done while we waited
We took a few walks, got a few bites to eat, caught up with friends and family and also just did a lot of sitting. And a lot of waiting. The OR phone calls came and went - all thankfully reporting that things were going well and she was doing ok through the surgery. Finally just before 1pm we got word she was out and moved to the ICU. We had to wait a little bit in the waiting area while the nurses got her settled down but in a fairly quick amount of time, we were allowed to go in and see her.
Not feeling well :(
A bear from mommy and daddy for being brave
Overall Meagan looked pretty good but I could definitely tell she was in pain. She kept waking up out of her semi-sleep and crying out or whimpering.She barely opened her eyes except when the nurses had to check her pupils and even then it was with resistance She needed more pain meds, but the only issue was her heart rate and respiratory rate. Hers are naturally on the low side without any meds or trauma, so with any sort of depressant (ie: the pain killer) in her system, it tends to exacerbate this problem. At the same time, we had to get her settled down because she was obviously uncomfortable and hurting. The doctors finally figured out a cocktail of Tylenol, Valium, and a hefty dose of Morphine to help calm her down. For a while they were walking a fine line of medicating her, but also holding back to keep her vitals stable, but finally after a little while, they were able to figure out safe doses to give her leaving a number of minutes in between each push so her body could tolerate the influx of medication.
Dr. R came by to see us later in the afternoon. He first came in with something that looked like a piece of paper - what I soon realized is that it was a picture of Meagan and all her sisters. We had given it to him in a Christmas card along with a few pictures of Meagan alone. Dr. R had grabbed the picture from his office and brought it with him when he came today to "bring Meagan some cheer." I thought it was very sweet and once again reinforced why we love Dr. R so much! We set the picture in Meagan's crib so when she starts to wake up, she can see her sisters.
Dr. R went on to explain how things had gone that day. He said the surgery had gone very smoothly on his end. He said everything had gone as planned - he was able to remove some of the bone and open up the area enough to give her some relief without having to open up the dura at this time (which is the second part of the surgery too dangerous for her right now). He said an ultrasound showed the crowding in the area was temporarily alleviated and for the time being the second part of the surgery could be held off until she gained more weight. He said hopefully this gives her some relief as we move forward with recovery. There is no guarantee of this,however, as a higher success rate follows doing both parts of the Chiari surgery, so like with anything Meagan, it is a 'watch and see.'
So far, after figuring out her new med cocktail, Meagan seems to be resting comfortably this evening. She occasionally wakes and whimpers in pain but the nurses are always right there with her next dose of pain medication and administer it promptly. She will stay in the ICU tonight so we can make sure her vitals don't dip anymore and so she can receive the round the clock care she needs to make it through her first recovery day. If she seems to stabilize overnight and does well sleeping on her own, and as long as her blood work also comes back ok in the morning, she may be moved to down a Neuro room tomorrow and out of the ICU.
Daddy telling Meagan "It's ok"
Meagan is still on clear liquids, IV fluids and a catheter, so no bottles of pediasure as of yet. I can't hold her yet either as her incision is still very tender. They are keeping her positioned carefully so she can stay upright and allow herself to start healing correctly. I'm hopeful that tomorrow at some point I can hold her, or at least crawl into the crib with her to give her some mommy snuggles. Meagan certainly came through today brave as ever, but then again, I had no other expectation She may be tiny but she can pack a punch. We are looking forward to (hopefully) a restful night and we will update tomorrow with how miss Meagan is doing. If anything, her bravery today and all the sweet gifts she received showed her she is one loved little girl - and reinforced what a gift she is to all of us.
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