We are thrilled at an AMAZING opportunity our family is being given.
Parker is being granted a wish through the Make- A-Wish Foundation and we are going to Disney World in October. We are going to be staying at a resort dedicated only for Wish children and their families called Give Kids the World. It looks like a Fairytale land and it's going to be amazing!
I have to say I am a little A LOT nervous too. The thought of all the pre-planning, the long plane ride with both kids, getting all of Parker's equipment down there in one piece, making it a safe and enjoyable experience and hoping Parker stays healthy is overwhelming to say the least. I keep reminding myself that this is a once-in-a-lifetime experience so I shouldn't sweat the small stuff but we'll see how that goes.
My parents will be driving to Florida to share in the experience with us. Visiting Disney World with his grandkids is a bucket-list item for my Dad so I'm glad we're going to be able to help him cross this item off the list. My brother, John, may be joining too which is great because he can wear Alexa out pretty good. Ha ha.
Our wish granter, Kevin, brought over our Make-A-Wish shirts last week so now it's official. I wanted a picture of all of us in our shirts so we brought them along with us on our way to the park tonight. I realized after the fact that a little more pre-planning would've been smart so our hair would've looked a bit nicer but considering we set up the camera on self-timer I think the picture turned out pretty good.
We are so excited and would appreciate prayers for a smooth, safe, healthy and amazing trip!
We so appreciate all of you who read our blog and ask to keep updated on Parker. We know many of you also pray for Parker and our family and let me just tell you "THANK YOU"!!! The prayers are working and Parker has come so far!!
Parker's checking out an adapted tricycle at therapy
Here are some updates and current prayer requests:
1) Parker has minor surgery scheduled for February 20th. This will be his 10th time under anesthesia. He is getting a second round of Botox injections into his eye muscles, will be fitted for glasses and will get a thorough teeth cleaning.
Parker had his first round of Botox injections last year and they definitely helped. His eyes do align much better than they used to but they are not quite where they need to be yet. The eye surgeon feels like one more round of Botox should help so we've decided to give it a try. The younger he has this done the more chance for success so we don't want to wait too long.
Since he'll be under anyway, we asked for him to get his teeth cleaned as well. Parker HATES getting his teeth brushed and we know we aren't doing a good enough job. We aren't expecting them to find anything wrong in this area, we're just trying to stay ahead of any problems.
**Prayer request: That the surgery and anesthesia go well with no complications. That the second round of Botox works and Parker's eyes will fully align. That any side effects will only be temporary and wear off quickly. That no harm is done.
2) Parker is getting to be quite mobile. He pulls up to a stand all the time, he likes to get up to a tall kneel, he is crawling, he continues to scoot all over the house. He is learning to cruise around furniture also. This is great and we are thrilled!! However, we are also scared. Parker is quite dangerous now. His balance isn't very good and he does fall a lot when he's in a standing position. He does have a helmet that we can put on if we're not right there with him when he's practicing his dare devil moves. However, he's pretty rough on his little body and we don't want him to have any major injuries.
One area where this is of great concern is when he's in his bed. He pretty much outgrew his crib and we had it converted to a toddler bed. Due to his dangerous shenanigans, his mattress is now on the floor but this isn't ideal and he can still manage to hurt himself with this set-up. We very carefully examined all the options for different beds and we're now hoping we can get a "safety bed" approved through our insurance. While I wish there was a different option, this will be the safest option for Parker. We're hoping his insurance will approve one that is custom built for Parker's needs as the ready-made ones just aren't very appropriate for him.
**Prayer requests: That we can find a safety bed that will meet Parker's needs, keep him safe and will work for many years. And that Insurance will cover it. (The one we are hoping for right now is called the dream series made by Beds by George).
Um...yeah, can you say Mr. Danger?!?!
He's still pretty darn cute though!
3) Parker had the Deflux ureter surgery at MAYO done in October. We followed up last week with the local Nephrologist at Children's hospital and had some imaging studies done. Leaving that appointment last week left us feeling a bit bummed out. While she didn't try to interpret the results fully (she wanted to leave this for the Urologist at MAYO), we didn't get the impression the surgery was successful. The Doctor said Parker's kidneys were still enlarged and one of his ureters was actually bigger than it used to be. We also were told a few days later that one of the blood tests came back on the high side so we need to increase Parker's fluid intake pretty drastically.
We were expecting the Urologist at MAYO to recommend either another Deflux surgery like the one he already had done or to recommend an open surgery as this has better odds of success. To our great surprise, the MAYO Doctor said based on the imaging studies, he would consider the first surgery to be a SUCCESS! There is evidence that his body responded to the Deflux paste and it did the job it was supposed to (by creating a barrier so the urine can't reflux like it did before). He said we should take Parker off his prophylactic medication, call him if he gets any urinary tract infections and to repeat the imaging studies in one year!
While on the surface this seems like very good news and we should be ecstatic, Paul and I both feel uneasy. We're nervous about taking him off his meds (he's been on prophylactic meds since birth) and we really don't like playing the "wait and see game". We will review all of this with Parker's pediatrician next week to make sure we're all on the same page and that she is in agreement with the Urologist's recommendations.
**Prayer Requests: That Parker won't get any UTI's after going off his prophylactic meds, that his kidney's continue to function properly with no adverse effects and that his ureter reflux resolves completely. That Paul and I won't stress over this news and take the opportunity to be excited.
Alexa and Parker playing dress up. I think we need some "boy" dress up clothes so Parker doesn't always have to be a fairy or a princess!
4) Parker seems to be doing pretty well with his airway issues. He is tolerating his speaking valve, can handle his cap (where he has to breathe normally with no assistance from the trach) for up to 1-2 hours on good days, and seems to be managing the oral taste trials that we are doing. His trach changes have been a bit difficult over the past few months though which could be nothing or could mean there are some more granuloma's in Parker's airway. His next airway scope (with more anesthesia) is at the beginning of April.
**Prayer Requests: That Parker stays healthy through the rest of winter. That Parker continues to tolerate his speaking valve and cap on a daily basis and we can increase the amount of time Parker can use the cap. That Parker's scope in April will go well and that his airway will look better than ever. That Parker continues to enjoy taste trials and will learn to take and manage bigger bites and more different types of foods.
5) Since Parker is handling his speaking valve and cap better, we are getting to hear Parker "talk" more often. There really is nothing better in the world than listening to Parker's laugh. IT IS THE BEST!!
We'd like to help Parker learn how to make more sounds so that he can communicate with us more. We can tell he wants to say things to us and we don't always know what he wants or needs. Parker does know several signs but due to his fine motor development, learning new signs is difficult. I haven't found a good communication device that Parker can use either.
**Prayer Request: That Parker will increase his communication skills so he can interact with us more and tell us what his wants/needs are. This could be by increasing his language, increased signs, or a different communication avenue. We just need to identify the best ways to facilitate the communication.
There really is much more I could say but I think this covers a lot of where Parker is at right now. Thank you again for the prayers! They mean the world to us!!
It's been awhile since I've posted a Parker update. So I'll do my best to catch everyone up. I want to start by posting this video because it was the highlight of our week!
Isn't he amazing?!?! I'm so proud of him. Pulling up to a stand is something Parker has worked hard on for awhile now and he's figured it out. Sure, it may not be the most conventional way but nothing he does ever seems to be.
In other news, Parker's surgery at MAYO had to be rescheduled since he's been fighting some respiratory problems for a couple of months now. While we really want to get this surgery out of the way, we also want to make sure he's at his best for the surgery. So...the new surgery date is October 28th. The hope is to be back home in time for Halloween because that's always a fun time for the kids.
Many tests were done in the last couple of weeks to help figure out what's going on with Parker. We found out he had an ear infection (the first one since his ear tubes were removed) so he was started on a new antibiotic for that. He also had a chest x-ray which came back good except that it showed an enlarged heart. He had a heart echo done last week and luckily it was normal. Nothing concerning there. Whew!
A trach aspirate was done (this is where they suction Parker's trach and send the sample to the lab to see if there's any bacteria present). It showed the same bug that it always does but it's probably overgrowing and getting out of control - which it does sometimes. So he was started on new antibiotics for that too.
I also have been working hard with the insurance company, Doctor's office and Medical supply company to get approved for more suction catheters each month. Right now we have to reuse suction catheters and my theory is that this is part of the problem. How are we supposed to get rid of the annoying bug that is causing these trach infections if we continue to reuse catheters and continuously reintroduce the bacteria that we just suctioned out? I'm hopeful that if we get to use a different suction catheter each time that it will help. In the meantime, some wonderful trach Mommies that I've met on Facebook have offered to send me some suction catheters they no longer need. I love my on-line groups!!!
Additionally, blood work showed Parker is allergic to cow's milk. This wasn't too surprising since Parker couldn't tolerate breast milk or other formulas as a baby. That's why he was started on Neocate formula and was on it for a couple of years. A few months ago, the GI Doctor and Dietitian thought it was time to challenge his system a bit and he was put on Peptamen Jr. I loved the Peptamen Jr. because it helped with Parker's poo issues a lot (you may remember from previous posts that I was having to deal with blowouts daily). Well, once he got used to the Peptamen Jr. the poo problems subsided a lot and I was enjoying not spending a great part of my week cleaning up messes. Well, the increased respiratory symptoms started about the time he was transitioned to the Peptamen and with the confirmation of cow's milk allergy we decided we needed to investigate further.
Earlier this week, we took him to an allergist at Children's in Omaha. They did a scratch test using the Peptamen Jr. and it was confirmed he is sensitive (and likely allergic) to it. Bummer. So, now we are doing a trial on a different elemental formula called Elecare. The Dietitian and allergist said the next step would be to transition him to a soy based formula. Well, I'm not terribly excited about Parker being on the Elecare or soy-based formula for the rest of his life so I'm looking into starting a blended diet for him. This is when you take "real" foods and pulverize them in a blender so much that you can then administer them by the feeding tube. They have to be blended up really, really well so they don't clog the tube but it's nice because you can monitor exactly what your child gets, know they're getting excellent nutrition, and it's more "normal" for their systems - not so full of chemicals and ingredients you can't pronounce.
This is a big undertaking, a bit overwhelming and expensive but I believe it may be what is best for Parker. So...I'm going to give it my best and see what happens! Hopefully my little guy will start gaining weight again too (it's been over 6 months since he's gained any weight).
In addition to all the Doctor appointments we've been to lately (which has been A LOT), we've also increased Parker's therapy. We now see physical therapy, occupational therapy and speech therapy once weekly on an outpatient basis. This is in addition to the therapy providers from the school system. Some weeks I feel like I spend more time at appointments than I do at home. I guess I should be grateful because compared to when Parker was a baby we don't have nearly as many appointments. However, it still seems like a lot. No wonder Parker is always sick - he gets exposed to all sorts of new germs all the time.
I'm also working on changing Parker's pediatrician. Our current pediatrician is very nice and I appreciate that she doesn't rush us when we're there but many mistakes have been made recently and I think I've lost the trust I had in her. I will have to second guess all of her recommendations from here on out and that just really doesn't work for me. Well, you'd think changing physicians is fairly straight forward but not when you have a medically complex child. Other pediatricians don't exactly jump on the chance of getting involved and I've been turned down by one of the largest pediatric practices in town. Thankfully, Parker's Pulmonologist has offered to personally call and refer Parker to some of the pediatricians that she knows in Lincoln. I'm not exactly sure when this will all take place but I'm hoping soon. Prayers in this area would be appreciated!!
Other than that, Parker is still a happy, determined little guy who likes to cuddle, sing songs, wrestle with his sister, swing, play ball, and throw all of his toys as far as he can. His naughty side is starting to peak through lately as well. He likes to pull his sisters hair and does test limits with Paul and I. It's hard to get upset with him for these things because we are so happy he is hitting these developmental milestones. However, we are trying to teach him the sign for "hurt" for when he pulls hair or bites and we are working at being consistent with our responses so he knows what is acceptable behavior and what isn't.
Well that covers the updates from the past few weeks. Thanks for reading and staying up to date on this journey of ours. I'll try to post some Alexa updates really soon.
Several people have asked for more details on Parker's upcoming surgery to fix his Vesicoureteral Reflux. I don't think I do a very good job of explaining it so I thought I'd attach the MAYO website with the details so those people can educate themselves if interested. To see that, click here. Parker's surgery date is scheduled for Monday, September 30th at MAYO Clinic in Rochester, Minnesota. This date is going to be here before we know it. I don't even know where August went?!?!?
Paul and I are opting for the less-invasive endoscopic surgery. This is explained under the "treatments and drugs" tab. Paul and I feel good with this option even though the success rates are lower. If there's a chance we can "fix" this issue without major, open surgery and a huge recovery time then we want to try that first. This is also what Dr. Kramer at MAYO highly recommended in Parker's case.
We will repeat some testing three months following Parker's surgery to find out if it worked. If so, then he will no longer have to be on his prophylactic antibiotic and will be good to go. Let's hope and pray that is the case.
In the meantime, we are praying that Parker stays healthy and does not get another urinary tract infection. If that happens, his surgery will have to be postponed. Parker has been dealing with respiratory problems for about 6 weeks now. We don't believe he's "ill" but something is definitely going on. It may be a reactive airway problem (early asthma), irritation, allergies, or who knows what. The unfortunate part of this is that he isn't tolerating his speaking valve or the trach cap which means he's not able to make many noises. This has been a huge step back and I hope we can figure out what's going on so we can start making progress in this area again. Our major prayer is that whatever this is doesn't take a turn and develop into something more serious - like pneumonia.
Our other prayer request is for Alexa. We found out that siblings have a one in three chance of also having Vesicoureteral Reflux (VUR). Parker's VUR is most likely due to his chromosomal deletion but there's no way of knowing if that is the case or if he would've had this anyway. So, the MAYO Physician recommended we have Alexa tested as well. She does have some of the symptoms (not all) so we have decided to go ahead and find out for sure.
Alexa goes in for a Voiding Cysto-Urethrogram tomorrow at Children's Hospital in Omaha. Alexa has never had any major medical tests done and screams as though she was dying if she scrapes her knee. So...needless to say, Paul and I are not looking forward to this testing. We have tried to prepare her, are bribing her with treats if she does well and I have asked for a child life specialist to thoroughly explain the procedure to her once we get to the hospital tomorrow. Hopefully, all will go well and my big girl will surprise me. We also pray that they find no issues and Alexa gets a clean bill of health.
Thank you to all of you who ask questions, want to keep updated on what's going on with our little family and those of you that pray for us. We are comforted so much by this and feel so blessed to have such a wonderful support system and network of wonderful people who care for us! THANK YOU!!
I've been a bit of a slacker lately when it comes to blogging. Sorry about that. I do realize it's time for a Parker update so here it goes:
Parker has been doing VERY well for the past couple of months. He's met some great developmental milestones, his suctioning needs have decreased a lot, he's on a new formula which has helped tremendously with some GI issues and my sanity, and he's been quite healthy! It's actually been a strange feeling since things have been going so well and I feel myself preparing for a "storm" to hit. The last few years have definitely been a roller coaster with many ups and downs. I feel like since we've been going uphill for awhile now that sooner or later we are going to hit the peak and come soaring down. I know that's a terrible thing to feel and worry about but it's hard not to do with our history.
I think the best part of the past couple months is that Paul and I have felt like a somewhat "normal" family for the first time in a long time. We are doing activities that regular families do everyday and think nothing of but for us they're pretty darn exciting! For instance, we've taken a few family trips to the new grocery store in our neighborhood. I know this sounds boring but for us it was a wonderful adventure and something we haven't done as a whole family before. The best part of all was seeing the look on Parker's face. The aisles at the grocery store were a wondrous sight for my little man and he was beyond excited at the new experience!
We've been more adventurous in taking Parker into public places in other ways too. Parker has been to a couple restaurants with family lately, he went to a graduation party for my cousin where a lot of family was present, he's been shopping at some bigger/less crowded stores, we've gone to a lot of parks and outdoor locations, and we went to a special night at the Henry Doorly Zoo in Omaha called "Dream Night".
Parker's new best buddy, cousin Chad, and Kaelynn (the new grad)
In addition to all our fun adventures, Parker has been making some great strides medically as well. His airway continues to show slow improvements all the time and just yesterday he had his first capping trial during a clinic visit at Children's Hospital. This is where they block off his trach so he has to breath normally. I think he surprised everyone with just how well he did. He didn't breathe through his nose like they would like, he did mouth breathing instead. However, he handled the entire 20 minutes with the cap just fine. His oxygen saturations remained good, he didn't show any signs of struggle and in fact wasn't bothered by any of it at all.
Successful capping trials are the first step towards getting the trach removed. Trach removal is a long ways off but we are at least headed in the right direction and it's very exciting. I'm truly amazed with how far my little man has come. It's crazy to remember where we started and all he's been through in less than three years. He's amazing!
Parker does have another procedure that requires anesthesia coming up in July. This has been one that I have worried about for a long time now. It will be his 8th time under anesthesia. He's getting a follow up brain and spine MRI to see if there are any changes from previous scans and to check on his spinal cyst and spinal cord tethering. The other part of this procedure is we have agreed (again) to let the Neuro-Opthamologist put Botox injections into Parker's eye muscles to hopefully prevent his eyes from wondering out.
You may remember a previous blog where we agreed to the Botox injections in the past. The Doctor wasn't able to make it to the surgery so it never happened. I took this as a sign it wasn't supposed to happen at that point but we've decided it's now time once again to give it a try.
If we don't do something to try and correct his eyes from wondering, we've been told Parker's brain will eventually stop trying to correct the movements and just stop using one of his eyes. This eye would then permanently be out of alignment and more aggressive measures would be needed to fix the problem and the chances for success would be much less. The Botox injections are the least invasive treatment option available and we've been told the chances of the procedure working are 50%.
The Botox injections are definitely something I've struggled with a lot. However, we have done quite a bit of research, gotten a second opinion from another Pediatric Opthamologist, and I've asked just about every Doctor Parker sees what their recommendation is. Everyone thinks it's worth a shot and aside from some minor and temporary side effects the worst thing that can happen is it won't work.
Regardless of all the medical professionals support for this procedure it does still make me nervous so for all you prayer warriors out there I'd love your help. We could use prayers that the procedure itself goes smoothly and as expected with no adverse reactions. That it will be successful and help Parker's vision and his eyes from wondering. That I would be at peace with the decision to do the procedures and know that no matter what happens it's going to be OK and we simply made the best decision we could with the information we had. Also, that we will continue to enjoy our little family, have fun adventures, and not take anything (even going to the grocery store) for granted. That Parker will continue to be healthy and make developmental and medical progress. That Alexa will continue to handle all of this well even when she starts to figure out that our family isn't quite like other families out there and we don't always get to do what others do. That these experiences will shape her into a kind-hearted, caring and good person. And that we won't spend any time worrying about if/when things won't continue going smoothly anymore and instead spend our time focused on enjoying the wonderful times and our many blessings!
Thanks to all of you. Your love and support, prayers and kind words are so appreciated and mean the world to us! And...I think it's working. Just look at how happy our little man is and how far he has come!
WARNING: This post may contain more information about Parker's bodily functions than you'd like to know about. Do not keep reading if you don't like hearing about poo.
So, let me start off by saying this isn't something I'd normally post about or talk about or want anyone to know about. But...I'm going a little crazy and I could use some help from the prayer warriors out there. The issue is that Parker has been pooping and doing lots of it for over two months now. He has an infection called C. Difficile and it causes nasty diarrhea. It usually occurs following treatment with antibiotics and goodness knows Parker's been on and is on a lot of antibiotics. One of the antibiotics Parkers is on is a preventative med to help prevent urinary tract infections due to his kidney issues. So...he's been on this since birth and will continue to need it as long as he has the kidney issues or until he gets surgery to correct all of that. In other words, the need for that antibiotic isn't going away anytime soon.
He had an episode of C. Diff last summer that lasted 6 weeks or so but he did get over it. This time around, we haven't been so lucky. C. Diff is treated with antibiotics (ironic, huh) and the first two rounds didn't help. So....a couple weeks ago he was prescribed a stronger antibiotic and he hasn't responded to it at all. No improvement. The little guy hasn't gained any weight in several months, he's pretty tired of pooing all day long, and I've never done so much laundry in my life. We are ready for this infection to GO AWAY!
I'm waiting to hear back from the GI Doctor to see what their next plan is going to be. I just hope and pray that whatever we do next will work this time because
I AM SICK OF POO
AND PARKER IS TOO!
Thanks for listening. I'm sure you are glad you read this post. Sorry about that.
It's been a really rough week in our house. Parker has been sick. Pretty darn sick in fact. We spent SIX hours in the ER on Sunday evening and SIX hours in the ER overnight on Monday. We then spent the late morning on Tuesday at the pediatrician's office. No one was really able to figure out what was wrong because he had symptoms all over the place but had no fever and his bloodwork looked pretty good. The symptoms were mostly respiratory based and he was having a hard time breathing and the treatments I had available at home were not cutting it. That's why we went to the ER twice but they really didn't do anything to help except give him shots of Rocephin (which we now know were for nothing), more breathing treatments, and did chest x-rays (which didn't look to bad). Turns out my little guy has RSV. He has been getting monthly injections to help prevent RSV and I guess it's good because otherwise this whole thing could've been a lot worse. We all think the "croup" that Alexa had a couple of weeks ago was probably RSV too and that's just what it looked like in her. So...we likely gave her a 10-day course of antibiotics for no reason.
We've been spending the past several days suctioning like crazy, doing lots of breathing treatments, chest percussion, and cuddling. Yesterday morning was probably the toughest for me because I was alone with Parker and I was unable to get his oxygen saturations up where they needed to be. His lips were dusky blue in color off and on and although I didn't think we were at the stage where I needed to call 911 I sure didn't like what was happening. It was frustrating because nothing I was doing was helping. I turned his oxygen way up, gave him breathing treatments, did his CPT, was suctioning a lot, and even did an emergency trach change. I couldn't figure out what the problem was but then he started to come up where he needed to be and all was fine. Sometimes I think he just gets bored and wants to add a little excitement to the mix (just kidding).
To add to it all, on the way out the door for church on Sunday, Alexa fell and hit her head on one of our end tables and instead of going to church we went to get five stitches put in her forehead. That was sure fun let me tell you. She was actually a trooper for the whole process except for the actual stitches going in part. I'm quite sure people two blocks away could hear her screaming! I'm not looking forward to when they have to be taken out.
Today is going much better for Parker and I've had a chance to breathe. Our lives are a roller coaster and this last week we were coasting down but we're definitely on the way back up today. I've gotten two pieces of wonderful news today and it makes all of the craziness a little easier.
First, I spoke with Parker's Pulmonologist's office. His biopsies/cultures from his procedures came back and did show Pseudomonas (the bug Parker always has in his trach) and RSV. But it also showed no signs of aspiration. This is beyond HUGE news. This means we can attempt oral feeding trials again and I don't have to be so scared. Now, I do know that Parker has aspirated in the past but since he has been tolerating his PMV (speaking valve) better, I have hopes that we will be more successful this time.
Second, I found out today that the nursing hours we receive so we can sleep at night will NOT be cut. They had been proposed to be eliminated completely. This is only the case for the next fiscal year but we will take it! This has been a huge stressor for us and a big burden was lifted in hearing this news.
This decision had been made a few weeks ago, but I didn't find out about it until today. I think hearing this good news today was perfect timing coming off of such a hard week and I'm able to appreciate it so much more. Without having the night nurses here during Parker's illness I probably would've gone crazy. He requires constant care on a good day but when he's sick like this you can't take your focus off him for a minute and it's just impossible to do 24/7 by yourself. We definitely would've ended up admitted in the hospital without that additional support from our night nurses.
So, here's to hoping the rest of this week continues to go "up" and that we appreciate and give thanks for answered prayers!
Being a parent isn't easy. Sometimes I wish I had a crystal ball or at least a very specific instruction manual. I wish I knew that the decisions I had to make were the right ones and that I am doing the best thing. Every parent faces difficult decisions when it comes to their children and we are no different. When it comes to Parker, it's just that those decisions and the issues that we grapple with are a bit different than the decisions most parents have to make for their children. Our issues aren't necessarily more difficult...just different...and sometimes I simply don't feel competent.
Parker is scheduled for several more surgical procedures at Children's Hospital on April 17th. This will be the SIXTH time he's been under anesthesia and I've gotta say it never gets easier. He will be having scopes done and biopsies taken by his Pulmonologist, ENT, and GI specialist. He will also get another sedated hearing test done by an Audiologist while he's under. These procedures are scheduled to take three hours. Agreeing to all of that and another round of anesthesia was hard enough. But now, another Doctor is recommending another procedure...and why not add it to the others and get it all done at once? This is what we do. We keep adding procedures on because we don't want him to be put out more times than he has to. But, how do you know when it's too much to put a kiddo through at one time?
The most recent recommendation is coming from Parker's Neuro-Opthamologist. Parker has numerous issues with his eyes and vision and one of them is something called Strabismus. This is when his eyes don't always line up real well and they sort of wander off to the side. I usually don't choose the pictures where it's really evident to post on this blog so I'll show you one I took yesterday as an example:
The Opthamologist thinks that he may be able to help this "wandering" by injecting Botox into Parker's eye muscles. This is a newer alternative to surgery. He says in about 50% of kiddos that have this done, the eyes will line up and permanently remain that way. For the other 50%, the effect will wear off and they'll either need it done again or surgery will need to be done. It's also likely that for a short time after surgery his eyes will over-correct and he will be a bit cross-eyed. There is always the chance of more serious risks but the Doctor said he's never had any of those happen for him and he has done this procedure many times. He feels this could be a good option for Parker visually, developmentally, and cosmetically. Also, the chance of success is higher due to Parker's age and the longer we wait the more likely surgery will be the only viable option.
So, we decided to go through with it. This decision really stressed me out because I didn't get a strong gut-reaction either way. Usually I follow my Mommy-gut but this time I didn't know which way to go. Paul did get a stronger feeling about this than I did so we are going to do it and hope for the best. Putting your already-compromised child's vision on the line is scary. We are still waiting to find out if the Eye Doctor will even be able to re-work his schedule around to be able to come during Parker's already scheduled procedures and then we have to see if the insurance will authorize it. I guess at this point I'm thinking if those things don't work out then it's not meant to be - at least not at this point.
Again, we ask for prayer that we are making the most informed decision we can. That Parker's procedures will go smoothly on the 17th and he will have no problems with anesthesia. That we keep in mind that we are only making the best decisions we can with the information we have at the time and that we don't regret anything later on. That we get to hear some good news and good results from the tests that they are going to do. That we will do a better job of trusting God and turning these decisions and our stress over to Him and know that no matter what He is with us!
Thank you all for your support! It means the world to us. Parker has been very healthy these past few months (likely because he hasn't been at the Doctor's office as much and we did get approved for Home Health Therapy so he hasn't been out in public places being exposed to all the bugs). We're hoping that his improved health status will make everything smoother next week!
Parker got to come home on Friday night. My little man was so excited to be leaving the hospital! We were waiting in the hospital lobby for Paul to pull the van around and pick us up and Parker was giggling so loud that I (and everyone else in the lobby) was able to hear him laugh around his trach. It was so great!! I think he was still full of his "happy medicine" so that was part of the excitement but it was nice to see nonetheless.
They decided to stop Parker's IV steroids and IV antibiotics on Thursday. I was very concerned with the side effects the meds were causing and we weren't really sure which one of the meds or a combination of the them were causing the issues. He was having seizure like symptoms (more pronounced eye shaking and extremity twitching), he was really out of it, and had pretty terrible diarrhea. They decided he had been on the IV meds for long enough. The Doctors made some changes so he could be on meds that can be given through his g-button and inhaled with a nebulizer. By Friday, most of the concerning side effects had passed and the Doctor's were very pleased with his progress. They said we could continue with the regimen at home since we have all the equipment available.
His medication and treatment schedule at home is a little overwhelming right now. He gets 16 doses of scheduled medication and treatments during the day. He also has a pretty good list of PRN (as needed) medication on top of that. I had to create a very detailed medication schedule to keep us and the nurses on track. So far it's all going well. Parker didn't even need oxygen on Friday night but has needed a bit since then. He wasn't really wanting to sleep for the first couple of days but I'm guessing that was because the high power medications were still in his system. He's doing better with all of that now and is back to his giggly, smiley, playful, cuddly self.
When we got home on Friday, Alexa seemed to be very excited to see us. We got lots of hugs and kisses. It meant the world to me and I was so glad to be home. I was so far beyond tired by Friday night and Paul could tell. He let me sleep in until 1:00pm on Saturday and I needed it. I'm quite sure I got more sleep in that one night than I had got all week in the hospital.
My mission right now is to try and get our insurance company to cover Home Health Care therapy so I don't have to take Parker to Out Patient therapy one time a week. I'm sure that playing with the same equipment and toys as a bunch of other sick kids during cold and flu season isn't a good idea. Our insurance says Parker needs to be "homebound" to receive in-home therapy and I'm trying to convince them that he should qualify. Wish me luck.
I do want to say a BIG THANK YOU to all of you who prayed for Parker and our family over this past week or so. Parker worked through this illness really fast and this whole thing could've turned out a lot worse and I attribute that to all of you who prayed. So, thank you and I can't begin to tell you how much that means to us!!
The big news of the day is that Parker came off the vent. He's still on CPAP with pressure support but it's a step in the right direction. He's also been tolerating his feeds really well and is less puffy. He's still getting IV antibiotics, oxygen, steroids, breathing treatments, chest physiothearpy, and lots of medications through his g-tube. We were hoping he could have a PICC (peripherally inserted central catheter) inserted so that we wouldn't have to worry about his peripheral IV that's in his hand. Peripheral IV's don't tend to last very long and since he still has several days of IV antibiotics left we wanted a better route to deliver the meds. AND if he had a PICC line, we could administer the IV meds at home once we were trained to do that and thus wouldn't have to stay in the hospital just for that. Unfortunately, they were unable to place the PICC line which broke my heart because Parker went through a lot while they were trying. They had to give him an anti-anxiety, a narcotic, and a sedating medication during the procedure because he was so upset about the whole thing. I don't think any of them really kicked in until after they were done so he was kind of totally out of it all afternoon.
He started to perk up a bit this evening but he's still really tired. I hate seeing my little guy this way but I am so happy at all the progress he has made and I'm hopeful we can wean him off the CPAP tomorrow.
Both sets of grandparents and Alexa came to visit Parker tonight. Parker was still pretty out of it but he did give Alexa a big smile when she sang Twinkle Twinkle Little Star and Baa Baa Black Sheep to him. Seeing that meant so much to me. I've got the two best kids in the world I think.
We found out tonight that there are two bugs involved in Parker's illness. Both of which would be fairly easy for Parker to get because of his compromised status and his trach. The main diagnosis so far is tracheitis and pneumonia. They're just trying to decided if continuing the IV medications for 6-10 more days is necessary or not or if there is an alternative. It's a tough call to make because leaving him on these high power medications if he really doesn't need them can have unpleasant outcomes but not leaving him on long enough could cause the illness to get worse or cause other problems. So...we're leaving that up to the Doctor's to decide.
So for now we're just playing the wait and see game and trying not to go to crazy in the meantime. Thanks for the prayers and hopefully I'll be writing my next post from home.
I'm not a morning person. It's 5:45am so I thought I should tell you that. I've had about 5 1/2 hours of sleep in the past 48 hours so I don't really feel like it's morning. I just think it feels really, really late. On Saturday morning, we brought Parker in to Children's Hospital in Omaha because he was having difficulty breathing. The whole thing came on really fast. This is what my little guy looked like last week:
This is what he looks like now:
I don't know if you can tell but he is giving a little smile in this photo and let me tell you his positive attitude and smiles make my heart flutter. He's just remarkable. He's gone through quite the roller coaster ride these last couple of days.
When we arrived at the ER at Children's hospital on Saturday morning, they started running all sorts of tests, cultures, and x-rays right away. It took five sticks to get an IV in. Parker is always a difficult stick and this time was no different. They ended up with the IV in his wrist which Parker can't stand because he likes to use his hands and chew on his fingers.
We all figured we were probably dealing with pneumonia but they said we were lucky to have caught it fairly quickly. They think there are some super bugs at work too but it takes awhile for those to grow out to know exactly what we're dealing with. This makes it a bit tricky to treat because the Dr.'s just have to guess what they are trying to kill.
He was admitted because his labored breathing was getting worse , he was needing quite a bit of oxygen support and his temperatures were getting pretty high. They moved him up to his room and since it was the weekend we were being followed by resident physicians who were placing calls to their attendings for orders. They started him on very strong IV antibiotics right away and he's been on 4 new and different antibiotics since we've been here. He did have a reaction to one of them which turned his face bright red and gave him splotches on his arms and chest. He likes to keep things interesting you know.
It turns out the resident physician that was overlooking Parker's care probably didn't realize the situation was as serious as it was and it wasn't until the nurse that was caring for Parker got her supervisor involved that we realized things were worse than we had thought. A supervising physician came in and decided that Parker needed be transferred to the PICU and followed by the Intensivist as soon as possible.
Parker was working VERY hard to breathe for quite a long time and was just running out of steam. They first tried him on CPAP, then BIPAP, and then ended up putting him on a ventilator. I, of course, was not thrilled about him needing to be put on a ventilator for the third time in his life but I knew it was for the best. I felt so much better about the whole thing once Parker calmed down and was finally able to get some rest for the first time in nearly two days.
After he had been on the vent for awhile, he peeked his little red puffy eyes out at us and gave us his wonderful smile as if to say, "It's all right, I feel much better now." Then he perked up a bit more and even wanted to play with some of his toys. We played peek-a-boo, sang some songs, and he bonked us on the head with his magic green wand. The sweetness of my little boy makes me melt. He's such a trooper and I just love him to pieces!
We've asked for prayers and I know it's making a difference. This thing came on strong and fast but he's doing what he needs to do to get better. I'm so happy Parker is more comfortable and that he's in a place that can help him. I'm grateful to the grandparents for taking such wonderful care of Alexa while Paul and I are away and I know she's going to be spoiled silly when we get home. I'm wishing I wasn't such a light sleeper as some rest would sure be great but hey we can't get everything we want can we?
Thanks for keeping updated on my little man. We appreciate all of your love and support!
Our primary insurance covers most of Parker’s health care costs. However, there are some key components that are left out. In particular, the nursing services we get are not covered at all. This is why I was so ecstatic when we found out Parker was eligible for the Katie Beckett program when he got his trach. This automatically made him eligible to receive Medicaid as a secondary insurance which then allowed us to get nursing services. Medicaid also picks up when we meet our cap under our primary insurance for therapy services and medical equipment. Medicaid also covers Parker’s expensive formula.
Medicaid has been covering these items…until now. Nebraska, as well as the rest of the country, needs to make some much needed cuts and a lot of these are coming out of programs like Medicare and Medicaid. Nebraska is planning to cut 21 million dollars from the Medicaid program and in the proposed cuts it looks like nursing is going to be cut drastically. We don’t yet know what that means for kids like Parker who require 24/7 care. There are many kids out there that need a much higher level of nursing care than Parker and if they make straight cuts across the board I don’t know what those families will do. I imagine a lot of people with high medial needs will have to go to more institutionalized settings which I find very sad. We, of course, will do whatever needs to be done to keep Parker at home. However, this could mean some very sleep deprived, grouchy parents that desperately need a break.
I have some calls out to department heads at Health and Human Services to see what impact the proposed cuts will have on kids like Parker but I haven’t heard back from anyone yet. I’m hoping they will take individual situations into account when making decisions. Kids with medical issues like Parker may be the minority when they are looking at the big picture but the impact this could have on families like ours is worth considering and in my opinion quite scary.
In the midst of everything I DO NOT know, I DO know that we have been well taken care of and provided for and God will continue to take care of us. Every big concern and worry that has plagued me so far in this journey with Parker has always worked out. God has been enough and will continue to be. No matter what the outcome, I need to remember that and keep the faith.
We would appreciate prayers that the government officials will understand the true impact of their decisions in cases like these. I understand cuts do need to be made and we are more than willing to make cuts and sacrifices just like everyone else but I hope they won’t completely cut care so much that patients and their families will truly suffer. I would also greatly appreciate prayers that Paul and I will try to remain calm in the midst of all this, that we will remember we are not in control, and to do a better job of taking our worries/frustrations/stress to God. I will admit, God has undoubtedly taken care of us but it’s not because we are doing a great job of asking for His help. We are fortunate to have such a loving and merciful God that will protect us and provide for us whether we deserve it or not.
Also, we’d like prayer that Parker will continue to make progress and strides so eventually he will no longer need 24/7 care and this will no longer be an issue. There are so many other families out there in much more difficult situations than ours. Their children are much sicker and require much more care. I pray that those children and families will not be overlooked and that families can remain together in their home as much as possible.
Thank you all for going along on this journey with us. We appreciate all of your love and support!
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