(and here is where you all have the synthesized bridge of this song running through your head…)

We are on final countdown notice for discharge. Gathering final paperwork and signatures, booking ben and my appointments to have our kidneys harvested to pay for this stay, gathering all the medical supplies laying around the room up to take home with us – you know, that sort of stuff. At this point we are actually waiting to give her one last antibiotic infusion at 2:00 pm, give her as much of her feeding as she can handle (we don’t have the right bags to hook up her home monitor in the car to keep her eating), and then pack up the car with the ginormous amount of bags we have managed to amass in the past week and heading home. Finally. At last. For such a time as this.

It is the right time to go home. She is mostly resolved from the RSV and pneumonia. it appears that her sepsis infection has been killed by the horse-dose antibiotics she is on. She is smiling and cooing at a mobile attached to her metal hospital crib and she is finally the happy baby I had always  hoped she would become. No, we don’t have a full final answer about exactly what or where things were going so wrong, but we are definitely making progress in the right direction. To look at her, you might see only her tubes and wires; you might still see a pretty skinny looking little baby – but if you can look past that, you will see my BABY. My baby who is finally able to sleep, arms thrown up over her head, truly relaxing, pain free. My baby who is finally able to take full breaths without fighting fluid on her lungs all the time. My baby who is finally starting to reach for faces and smile at new people and talk to the stuffed animal in her crib that holds her tubes out of her way for her.

So even though she will still look a little bit like the sick baby she still is – she is so much more  HEALTHY and HAPPY than I have ever seen her. Her official diagnosis at this point is malnutrition caused by congenital benign hypotonia/IUGR. Basically – her doctor is almost positive that she was affected by “Intra-Uterine Growth Retardation”, and essentially was born as a 34/35 week “preemie”, even though she was delivered “full term” at 37 weeks. Her system never really progressed past that 34 week mark, when they admitted me for pre-eclampsia and nephritis testing. And then of course she’s born and goes to the NICU – but the best info they have is that she is full-term so they challenge her system like she’s a full term baby, and it just began this bad cycle. She probably should have received Synagis shots to ward off RSV, she should have had more time to develop her feeding skills, she should have been looked at much harder than she was.

But we’ll be ok, you know? She’ll have a lot of therapy from this point on to catch her back up, get her strong, keep her functioning. And we’ll hopefully never be back here again. It’s kind of sad, leaving the relative comfort and safety of these four walls. Having multiple doctors and nurses responding to her every need within minutes of her needing it. I hope I am strong enough to be all that she needs at home. And I know I will be. I will learn how to calculate feedings and extra calorie fortifiers and time medications with IV’s and feeds (in spite of the fact that I never really got past 5th grade math…yikes!) As Ben put it – “don’t let me sugarcoat it for you, terra. If you put the wrong thing in the wrong tube you will kill her.” Geez nothin’ like a little pressure!!!

Her doctor gave me final report and in spite of the fact that I will be this man’s best friend for the next 6 months until we get Kendall stabilized, I started crying when he came to shake my hand and i grabbed him and hugged him and thanked him for saving my daughters life. He just hugged me back and said “go home, be happy, enjoy your baby  - she’ll be fine. You’ll see”

I MUST stop crying at the drop of a hat. I feel like I am going through post-partum hormone issues all over again!

In another semi-unrelated note, has anyone ever seen one of these?

(click the pic for a full description)

It is called the “Peek a Boo Bunny” infantino mobile.

It costs more than our gas bill last month. 

But it keeps my child the happiest I have ever seen her. The nighttime music calms her down, the baby laughing makes her smile, and she loves it. I would sell my liver on the black market if i had to to obtain this thing for her. And i can’t find it ANYWHERE!!!!

I would rather not wait for shipping but if no one has seen this in their travels out and about (Target, Wal-mart, BabiesRus), then I will try to order it on monday from an online store. (Yes i have a massive resistance to online ordering of things i want YESTERDAY. For my baby who will wonder tonite where her mobile is. So if you even THINK you have seen this somewhere, let me know STAT. (that’s my medical term for the week. Don’t be alarmed if i start asking you for stuff “stat” in real life. I have fun saying it.)

Her alarm just went off to let me know her IV meds have infused. We are filling her up with another half feeding so she has a nice full belly for the trip home. We are getting final tips and training for all her meds. Ben has made two trips down to the car with stuff already.

Very very soon we will at long last be headed home.

It’s a great day.

 

terra

And head out!!!

(hey, the humor’s free around here – take what you can get!)

Anyhoo.

Biggest news of today – Dr. A thinks he will write discharge order for Kendall tomorrow morning! All teams have made final reports and they all are pretty much blaming nutrition/GI for the root of all her problems, so since we’re all in agreement that she clearly looks, sounds, and appears to FEEL 982% better, we’re hopefully homeward bound! 

Today she had two tests – a VCUG to check if her kidneys are refluxing and if that is causing the swelling she has in her kidneys, and a “video swallow” scan. The VCUG results will probably not be ready for a few days, but they are relatively confident that even if there IS a defect, it is not really remotely related to her overall major health problems.  She has a 50/50 chance of having the same defect that Karissa has, leading to her frequent UTI’s – and if Kendall ends up with the same thing, she would need to be started on preventive antibiotics because her system can definitely NOT handle having a kidney infection, at least anytime this year! (Did you know that babies cannot get UTI’s? They don’t have a fully formed/long enough “tract” to get infected – they go straight to kidney infection – which is even worse for them – fun medical fact of the day for you there!) Anyways – so while the results from that test will be helpful in determining future care plans, we aren’t waiting for the results with bated breath. Which I guess is kind of a nice change for once!

Now the video swallow is a whole other story. 

This current evaluation started two days ago when a speech therapist came in to see if there were any swallowing issues, and she immediately picked up on a pattern of something being “off” with her feeding issues. I am really working at trying to control my frustration and anger about this point – but i am severely disappointed in the fact that our ped’s office in THREE MONTHS worth of visits never once asked me any of these simple questions that the speech therapist asked and had alarms going off in fifteen minutes with Kendall. i mean honestly – two months ago if her ped had said, now how much is she choking and gagging with each meal? Is she falling asleep during a feeding? maybe we should send her for a swallow study to see if there are any noticeable issues with her reflux being the cause of her FTT (failure to thrive/weight loss) – do you have any idea how much pain and heartache that could have saved my child? And yet I know we HAD to be here. We HAD to get some of the answers that I am confident only THIS TEAM of doctors could provide. It still frustrates me that that office ALMOST had me believing I was crazy, and I hope that other families and their sick babies aren’t falling through the cracks of that office like we did.

All said and done though, she failed her swallow study miserably. She was sat up in a foam carseat, tucked in with towels and blankets and I stood up facing her and fed her a bottle – her first in a week! She was so excited! – and they took a contrast image of her swallowing from the side. VERY FIRST SWALLOW it goes right down her lungs so they stop the test while she chokes and gags and struggles to catch her breath. And I realized – yep that’s what she does pretty much every feeding! I always thought it was just part of her reflux – so I’d calm her down, put her back on the b.r.e.a.s.t. or bottle and keep trying. The speech therapist and radiologist were quite alarmed with the severity of her failure today though. She started to do the same thing with the thickened feed, which they gave her next, and that would have been even worse so – TEST OVER! It literally took us longer to get her in position than the entire procedure lasted. 

in layman’s terms – Not eating enough is killing this child, and yet eating is the very reason she can’t eat enough. She is swallowing a good portion of her meals, leading to her pneumonias, and the little that does stay down is refluxing back up and rarely stays down. Bottom line – she will be on tube feeds for probably much longer than we first anticipated. It is literally “dangerous” for her to consume liquids through her mouth. I don’t know why that thought is so sad to me. I guess cause it’s such a natural part of life – to eat and drink and nurse and receive comfort…and now she can’t. I will pull her food out of me with one machine, and insert it into her body through another machine. This seems wrong on about 94 different levels to my “granola mom” instincts. But in order to keep her alive and get her healthy and put fat on her scrawny little bones, this is what we will do. And we will learn together how I can drop a tube, a procedure that easily requires 8 hands, and that’s if the baby’s fast asleep and cooperative. And how to pack her pump up in the cute little mini-backpack that I am SURE will be stolen by a sister at some point so that we can take the feeds on the road. And how to time her IV injections with preschool and errand running and naptime and physical therapy and speech therapy and today her newest therapy – VITASTIM!!! Doesn’t it just sound like boatloads of fun? I mean honestly – what a fun name! VITASTIM!!!!

YEah not so much.

Essentially she will get tiny electrodes placed on her neck that will shock her esophagus into the work of learning to swallow food and keep it down. I gag just thinking about it. She must do this four times a week for the next couple of weeks, and then have a repeat video swallow scan done to HOPEFULLY see some improvement.

Ok it has taken me almost two hours to write this all out and i am afraid it is losing continuity.

I hope that it helps give a little clearer update to those of you awaiting it though – please feel free to ask me if i didn’t make sense about any of what we’re waiting on. I so appreciate your prayers and concern for kendall.

So now we will try to go to sleep. No more breathing treatments through the nite, and she just pulled out her NG tube so I got to practice that again – IN MY GLASSES! (It’s a family joke that I am so blind that I should not be allowed to do anything except brush my teeth in my glasses – and now i just performed a medical procedure on my poor child with my coke bottles on!) She seems to be happy though so I am assuming it’s in the right place and I didn’t fill her tummy full of air!

Hopefully tomorrow is the day we get to return to normal. I am excited to go home and sleep in my own bed with my baby right next to me instead of across the room in a metal crib. I cannot wait to have a real meal at our little table and sing happy birthday to kealey with candles in the little cake Ben bought her at Jewel tonite. (I am trying to swallow my pride at not being able to have baked her her favorite kind of sprinkle cake…)

My back hurts from a week of sleeping on a fold out couch and standing vigil over my baby’s bed as her breathing has calmed from distress to labored to crackly to normal. I am tired beyond tired and relieved beyond relieved.

We are blessed indeed.

 

Thank you so much for everything.

 

terra

THIS is what it means:

friends & family who bring you meals/coffee/bags of goodies/clean out your children’s closets/watching your children/being surrogate parents to your children/organizing your daily living needs for the next few weeks/praying for you and over you.

And so much more.

I am blessed beyond measure by the outpouring of love and support being shown to us this past week. Has it only been that long???

anyways – it was a brutal afternoon. Kendall came out of recovery from the picc procedure and upstairs where we had to remove the old IV, start the feeding tube, take vitals, get chest PT – and all she wanted to do was sleep off the pain from that thing in her arm. I lost it. I broke down crying for my child who has been through So Much this past week and just could not find any comfort. Ben stood and rocked with her while I just laid my hands on her and begged and pleaded for the God of all comfort to place His calming hands on her little body and allow it the rest it needed. And slowly, slowly, her breathing calmed down, her little muscles relaxed, her screams subsided to whimpers, and she finally found rest. I put a sign on her door that ACTUALLY WORKED – and she was left blessedly alone for almost 3 hours. After another brutal breathing treatment (she has a therapist who i think moonlights as a meat tenderizer with the gentleness of a herd of bulls), and a full feeding bag hung up, and her antibiotic machine hooked up – she is sleeping again.

Her nephrologist (kidney doc) just came in to update me on her test results from yesterday’s nuclear scan – totally clear! Praise God – your prayers are not falling on deaf ears! While we are not hearing any specific diagnoses yet – we are clearing some very very very bad things off the table with all these positive results which is So amazing. She has one more kidney related test tomorrow, which is the same test that Karissa went through back in October of last year – testing for the same defect that Karissa has. Kendall is at a 50/50 risk of having the same defect, which causes the frequent infections – which Kendall clearly can’t handle. Worst case scenario from tomorrow’s test – she has the same defect as Karissa and will be on preventive antibiotics just like Karissa. So even though it will be a pain to put her through one more catheterized procedure tomorrow during which she can’t eat AGAIN – it will proactively answer some questions and help her avoid the pain that poor K2 has endured for 4 years.

Immediately following the VCUG scan tomorrow will be her video swallow test during which we will find out if she is for sure aspirating her meals as the speech therapist suspects. This in and of itself will answer quite a few questions – it would explain a LOT about her failure to thrive/gain weight, and would also explain her weak lungs/respiratory issues. The theory is that since she has the hypotonia – ALL of her muscles, including the 26 involved in the act of swallowing and digesting, are weak, therefore – she is refluxing her food back up her esophagus, where her airway muscles aren’t strong enough to fully close, and she is swallowing milk down into her lungs. Now this is still a theory at this point, but in talking with the speech therapist, and doing a little of my own research, i really think we may be on to something here. So tomorrow this test will confirm if that is happening, and to what degree, so we can start attacking the problem and fixing it. Easiest fix – thicken her feeds with a food thickener. My only fear with this is that because her feeds take 3-4 hours to bolus (go through the pump into her tummy), we can’t add the thickener to breastmilk. And of course my children and their champagne tastes (;) ) – Kendall is on a very expensive formula because she is allergic to the milk protein found, well, in all dairy products, but specifically in baby formulas. So if she has to go on all formula…not to mention that she won’t be getting any of the amazing nutrients she so desperately needs from my breastmilk. So that is a little emotional for me to think of – but that is me worrying about tomorrow when i still have a good few hours of today to get through. So we’ll take that news as it comes.

From a physical standpoint – that’s where we are tonite. She is looking good. in spite of still losing weight, yes LOSING even on a 24 hour continuous feed of extra-calorie fortified breastmilk, she is looking better than she has all week. Her kidney doc even said tonite – ’she doesn’t look like she’s wasting away anymore – like she did yesterday even!” He wasn’t blessed with the gift of tact…but he’s a darn good doctor! She is clearly in discomfort from the new PICC line and in general is getting very disillusioned with being a pin cushion here in the hospital. But she is certainly looking more like a Thriving Baby. So we praise the Lord for that.

Emotionally – what a ride it’s been. I don’t know if its breastfeeding hormones going wacko cause of the dips in my supply due to the stress of the past week and essentially having to suddenly stop breastfeeding my baby, or if its just the stress all finally catching up with me – but i have been a virtual spigot of tears for the past two days. I hear a country song on the radio (“Cowgirls Don’t Cry”) and i cry. Guess that makes me not a cowgirl. I get an email from Kealeys teacher about how well she is doing with reading, and I cry. I can’t find my Twix bar stash in the room and I cry. i cry because I am touched by all the generosity, and kind words, and wonderful comments and emails we get – i cry because we have been so very very blessed, and we are so wonderfully upheld by our family and friends. People across the country are praying for Kendall, and I know that God is hearing those prayers. His hand is on our baby every hour of every day – even in the hardest ones. It is those times that He is the one scooping us up and just rocking us in His arms, saying “let me take it, let me take your pain and frustration and tiredness and fill those places with my love”. And yet it’s so hard to surrender sometimes. Why do I hold on to it? Why do I fight just letting go completely and laying it all at the feet of a loving God?

But i am done. I am too tired to carry these burdens any longer. So many of you have called or emailed either me directly or Erin at church or through some other means have asked how you could help. As much as I would LOVE to believe that my Wonderwoman underoos are firmly in place, securing my position in this world as a superhero to all, I know they are just a costume. I am wonder-nothing these days, and I so desperately need to accept your gifts and offers of help. To that end, Robyn W. has so very graciously stepped up to be our “care coordinator”. I do not pretend to know the levels of grace by which she is able to offer this, being a busy mom herself, and yet her gifting for it is so well-placed in my life right now, in the lives of my family.

She has set up a link for meals for next week – we are HOPING that we will be home this weekend sometime, and so meals are for next week as we get back on our feet with Kendall and her new challenges and routines. That link is HERE.

She also has a relatively up-to-date list of other areas we are in need of help in. This ranges from the mundane tasks of being a SAHM (i am flat out of dishwashing tabs and apparently there is not a drop of toothpaste in my house??? I am not sure how that happened..except to say that Kaylen’s breath has been oddly minty the last few times I have found her wandering around upstairs…

We will be adjusting to a very new schedule around our house, including physical therapy, more than likely 3-4 times a week, working around Kendall’s ever-changing tube feedings (although they tell me the pump she will go home on is “cute” and “fits in a backpack”. I am concerned about who walked around testing the fact that a feeding tube pump fit into a backpack, but oh well. I’ll take it!), and in general just adjusting to life with each other again!

In short – there is plenty of Need to go around for all the help that is being offered. And if you don’t “cook” – not to fear – we can put you to work in other ways for sure! LOL!

Anyways – I say all this not to guilt anyone into helping, but because my eyes have been opened today in more than one instance to the fact that there are quite a few of you out there who want to be physical hands and feet of the body of Christ in our time of need. And I need to lay aside my pride, open my heart, and receive the love you all have to give. So please feel free to email Robyn (email:robyn_whitlock@mac.com ) - she can help point you in the right direction! because my emails are still being weird and wacko and i know i am not getting them all in a timely manner.

I, of course, still love reading your emails and comments and words of encouragement either through email, Facebook, or here on the blog. I cannot put into words how very blessed I am by each and every email, text, or voicemail message i receive. (I use the word I a lot, but know that Ben also hears/reads everything and feels the love also!) 

There is so much more I want to say and thank you all for – and yet i think its time for this day to be over. Time to wind down as the activity on the floor outside is winding down. Hopefully no one code blues tonite, and there are no fires anywhere (code red). Hopefully all is well in your house right now as you are reading this – I can only pray that all of you are protected from this winter of horrible sickness. Pray for our friend Lisa, who is also enduring some scary health problems. Pray for our friend Faith, pregnant with twins, who has just been put on bedrest. I cry out to God tonite that He makes Himself known to each and every one of you who have been so faithfully praying for us. He IS real, He IS in control, and He WILL work all things together for good.

I read an awesome quote the other day that really sums up where I feel like we’re at (finally) after a long week:

I can sum up all that I have learned about life in three words -

It

Goes

On.

 - Robert Frost

 

And yet again, i begin to cry as I read these words in the worn Gideon Bible here in the hospital room

For He shall give His angels charge over you, to keep you in all your ways

They shall bear you in their hands — Psalm 91:11-12a

 

Resting in His hands tonite -

 

the whole Atkinson crew, upheld by all of you.

Not quite as fun to say as feces, but a close second. You have to emphasize the second C. PICC. PICC. PICC.

Kendall was just taken away from us to have her PICC line inserted. And yes it really is purple like that picture! I took a picture of the one the nurse used to explain her procedure but flickr ate it. So in an effort to distract myself from crying my eyes out at the emotionalness of them wheeling my little baby away in her big crib to get sedated and have all her little veins poked with a wire and an ultrasound – I am blogging. You know, what else are ya gonna do right???

So today they are placing this central line so that Kendall can continue to receive her antibiotics for her urosepsis infection. It’s a very scary procedure to me – that will have the benefits of keeping her from blowing out her IV’s every other day, plus she will be more likely to be released to home health care with us with the PICC line in. I think it was the right decision given the factors we have right now. 2 more weeks of keeping her in the hospital to receive these meds is not appealing to any of us.  So i pray the blood of our Lord Jesus over her and those doctors in the room right now and that her veins would be open and easy to find and it’s a quick procedure.  And that it can stay in her arm. If they can’t find an arm vein, they have to stick it in her jugular. Has anyone seen any baby turtleneck onesies?!?!? I do not know how i will handle having this large IV port sticking out of my child’s neck. But if I have to, I am sure God will provide the strength needed at that time.

So here we sit and wait. I am distracted by good friends emailing/facebooking/IMing with me to keep my mind off things.  I really am trying to not hyperventilate as we hit the 45 minute mark. They must be having a hard time with her teeny little veins. And i cry out to God to please let something go smoothly for her. I cannot think of all she has been through in one crazy week.

Last nite when I got to go home, I went upstairs to go to bed. and In the corner was the nebulizer machine, and all the things I had been trying to give her last Tuesday trying to calm her down and get her to breathe and sleep and stop coughing and all these emotions just HIT ME like a ton of bricks as I saw that all and I thought – what would have happened to her if I had kept fighting that battle myself? What if Emily had not encouraged me to call the doctor? what if  the doctor had dismissed my concerns over the phone? what if Dr Natalie had not come on duty last Thursday morning after Kendall’s horrible nite at Rush? But i cannot think like that, I know that. It still is scary when my mind goes back there. I really believe she was not long for this world last week.

You know what her doctor’s first name is? Gabriel. 

And he really is our angel.  God has saved this child for a special purpose, and I am so excited to see what it is. Not that all children don’t have a special purpose – but for some reason, I think Kendall’s is going to be quite unique based on her circumstances.

They just came in from the OR to tell us they got the PICC in. Praise God! It’s in her arm – no jugular necessary!

I am going to post this so those waiting for the update will get it – then come back and edit more later!

 

T

I think this has honestly been one of the longest weeks of my life. I have probably been awake for most of it, which is part of what prolongs the days. i am glad we made it to this point.

Tonite I am home with my other three babies. It is good to hug them and put them in bed again and be able to pretend for a few minutes like life is back to normal. Always at the back of my mind is the fact that someone is missing. I find that my “tolerance” for them is very short. I am not sure if this is because I have not had to be the ringmaster of the circus that is life at our house in so long, or if its because every last nerve has a very frayed end that is just putting me on edge for everything. i feel tired and incapable of being their mommy like i used to. I feel like i am recovering from a severe time warp.

But for now – this is enough. I needed a break from the hospital, the constant noise, the sounds and smells, the one-ply toilet paper with the toilet that doesn’t flush and the sink with the water pressure equivalent to a squirt gun.

This morning my poor baby received her 5th IV in 6 days. I told the nurse I thought she had blown it out and she dismissed my concerns until an hour later when she went to give kendall her meds and couldn’t flush the line. Nurse went to get second opinion and all agreed – blown IV. I think my “street cred” with the nurses went up just a couple notches for that one. I try to not be “that mom” that i hear them all talking about at the nurse’s station, so that when i DO have a concern, they take me very seriously and they quickly fix it. It is amazing to me how quickly I have absorbed this new role as medical advocate for my child, learning new vocabulary, helping to make differential diagnoses based on medical history, etc.

After receiving the new IV, she had to be catheterized again so they could re-culture her urine to see if the bad bacteria are leaving.

here is a quick rundown of what kendall HAS dealt with in the lat week:

RSV - bad case of the viral “cold” that attacked her lungs/upper respiratory airways and gave her a horrible cough and aches and pains

pneumonia – the RSV started to create more “gunk ” than her lungs could clear, so it started backing up into her bronchii and filling her lungs. This was actually a good thing because that meant we could attack it with antibiotics.

Hypotonia Workup – determing cause for her low muscle tone.

Failure to Thrive workup – determining why she can’t gain weight.

Gastrointestinal workup – determining if she has digestive diseases.

Infectious Diseases workup – getting a bad bacterial infection in her blood AND urine led them to believe she has/had a congenital immune deficiency.

Cardiology workup – her heartrate was routinely above 200 bpm for about the first three days, even with oxygen support. They were clearly worried about her heart having a defect, which it did.

PDA – diagnosis about the severity of her defect is being deferred until she is fully recovered from the RSV – which should be sometime in April. literally.  At that point, she should in theory have gained enough weight to have coordinated some muscle tone and hopefully in growing muscle tone she will have had her heart close the extra pathway on its own. We hope.

Kidney Infection – no known cause at this moment – waiting results of today’s scan.

Neurology workup – including the infamous MRI of yesterday. This was probably the biggest hurdle to overcome because most of the really bad stuff that causes hypotonia would have shown up on the MRI.

And a host of blood draws, ultrasounds, catheterizations, IV starts, IV blows, pokes prods, breathing treatements, chest PT (whacking her on the back and chest with a little nerf hammer), vital signs, rectal temps, position changes and 13 hour stints with no food. 

 

So that about sums it up.

I am afraid to go to sleep tonite. Afraid that I won’t wake up till Friday and will have missed all of our home health care training, slept through kendall’s picc line procedure tomorrow, slept through getting the girls to school and other daily life functions. I am running on adrenaline and fumes right now I know that. i am losing the ability to function beyond basic automatic rituals and to think in anything more abstract than the next 4 hours of life. But i do’nt know how to help it.

i think we are very very close to answers though, and very close to coming home. The dr. told us to plan childcare through Saturday at least.

Tomorrow we will have a PICC line inserted in Kendall’s arm. It’s a permanent IV line through which she will receive twice daily antibiotics so rare that not even the nurses at the local hospital here are familiar with how to administer or monitor it. I have to. I will learn on Thursday how to mix and administer her life-saving antibiotics, and mix and administer the perfect amount of calorie -adjusted formula/breastmillk through her NG tube. This will be the baby I bring home sometime this weekend (we hope). A MUCH healthier baby than I have ever had, and yet one who is still so sick by so many standards.

I wish I could show you all how very much your prayers have been helping her. She looks and acts like an entirely different child. She still gets very tired very easily. today during one of her therapy appointments (speech therapy, which is still so odd to me since she doesn’t talk…), she got to try to eat from a bottle again in a very controlled attempt. She loved it. But the very act of sucking 2 ounces of milk through a nipple wore her out so badly she slept for three straight hours, through a wheelchair ride through the hospital, through her nuclear kidney scan test (1.5 hours) and back up to her room. She both breaks my heart and fills me with pride at how far she’s come.

I cannot even think straight to write more. this is just a sheer factual update so that maybe i can remember what happened today sometime tomorrow and again pull all the pieces from all her specialists together so i can try to understand everything they are throwing at us.

thank you for praying. And if you have emailed me in the past week and i haven’t responded – they all came through tonite. apparently something was in a state of serious disconnect between my main laptop at home which typically pulls my email, and the mac server I am attempting to pull mail through at the hospital. So my deepest apologies to anyone who feels ignored. You are not ignored. You are buried in the influx of 549 emails (I am not exaggerating) that just unloaded into my inbox.

I would love to take each and every one of you up on your offers to help. I honestly am not even sure exactly what I need. It’s going to be another crazy few weeks around here, that is about all i know tonite.

so thank you for praying – please continue to pray that answers start to fall into place. I think tomorrow will be a pretty calm day for her except for the PICC line placement – a sedated procedure blessedly.  i will update more tomorrow and will probalby just post a list of times/places/things that would be helpful for those of you who are so willing and ready to jump in and help.

we love you all and thank God for our amazing friends and family who are lifting us up through all of this.

 

t

Sorry if that is not quite a direct translation of Jesus’ admonition to us – to not worry about tomorrow because today has enough troubles of its own. I definitely feel like i am there. 

I have quite a large capacity for medical info/knowledge being thrown at me, and being able to convert it into “practical layman’s terms” so that I can actually apply that knowledge into creating health for my children and occasionally myself. But today I have hit my wall. The last specialist came in around 7 tonite, and his little shpiel just about literally made my head explode. I think i seriously saw a little puff of smoke come out of my ears while he was talking.

But here is what I do know, for today.

Her MRI is clear. Clear from what I couldn’t tell you exactly – but I know its a very good thing. We took a LOT of bad, scary things off of the table with this news. In the words of the neurologist, “It’s frustrating in that we don’t have THE solid answer of what’s wrong, but it’s a huge relief in that we know a whole lot more about what NOT’s wrong, and that is very good”. Indeed.

Her kidney ultrasound, on the other hand -not so cut and dried.

Apparently it IS abnormal -but i am not sure how/why/what. There is clearly some kidney involvement with her failure to thrive – but whether it’s her kidneys that are leading the way or they are reacting to some other problem remains to be seen. So more testing over the next few days. More antibiotics.

Infectious Disease specialist will have to read the renal U/S report also to make her determination about whether we need to keep kendall here for a 2 week round of antibiotics to treat her sepsis (blood infection). There’s a lot of question about what is causing the infection, the kinds of organisms her cultures are growing, etc.

This is where my brain is tonite. Barely able to hold it all. But i know God can. So i am putting all these big words and diagnostic tests and worries and hopes into a box and putting it in God’s hands tonite. And he is taking the box and mixing in all your thoughts and prayers, and is even now, working it all together for good. Someway, someday, somehow – this will all be good. It will all be alright In the words of Bob Marley -

One heart, one love

Let’s praise the Lord and it will be alright.

 

hopefully i wake up tomorrow with a very clear mind and a renewed ability to be the advocate kendall needs me to be for her tomorrow.

Please pray for the other girls too. I miss them beyond belief and I know this isn’t easy on them. Pray that I get to have a few hours where i can leave and go home and see them for a while.

thank you so much for your prayers. You are all the wind beneath my wings.

(hey cut me a little slack – i’m tired, hormonal, and emotional. wind beneath my wings is a perfectly appropriate song to break down crying to!)

 

raising a plastic cup with an impossible to peel off foil lid of apple juice to all my homies -

 

 

terra

After waiting all day – we finally made it to the MRI at 3:30. She has endured 12 hours, almost 13 by the time she gets her tube hooked back up, of not eating, 4 breathing treatments, 2 physical exams by residents (learning doctors), a 1/2 hour of physical therapy, exam by her main doctor, one exploded IV/vein, getting an IV put back in, two gastroenterology consults with the head GI doc and his assistant, an exam/consult by the Infectious Disease doc (because she has a UTI and sepsis now), a renal ultrasound, and finally her l MRI. She has yet to endure one more trauma – mommy learning to drop her NG tube so I can feed her for the next 3-4 weeks. i am hoping that i can learn to do this quickly before her sedation meds wear off. We await results from the kidney ultrasound and MRI – both of which MAY still come back today.

But for now she is conked out. So rest well little baby. You’ve endured more today than most of us have to in YEARS of doctor’s visits. Your name means “strong leader in the valley” – if this isn’t a valley I do’nt know what is. But you will rise above it. You are strong, so very strong. So live up to your name baby of mine.

But first – get some sleep. you certainly deserve it.

Warning – lots of frustration venting straight ahead – you are hereby warned!

I do not understand the logic behind starving a 3 month old child who already has failure to thrive and is recovering from essentially a life-threatening illness. Kendall was scheduled to have her MRI at 8 am, meaning we took her off her feeds at 4 am. She did start IV fluids at that point, but apparently hooking that up  made the needle pop out of her vein and just dump about 4 ounces of fluid right in her poor little arm. For those who know chunky little kaylen, picture kaylen’s arm on kendall’s body. It’s horrifically grotesque. There is a lot of medical crap that i can handle – puffy blown IV sites are not one of them. i have to keep it under a blanket cause it just makes me cry to see it. I had to walk down into the adolescent care center (a long walk) in order to not hear her screaming as they took that IV out and placed yet another one -her third in 5 days. And I just cried out to God – WHY? Why her? How much more does she need to go through?

She’s such an amazing little trooper. All her nurses and therapists know she is waiting to go, and waiting to eat, and they all keep commenting on how good she is handling it. She just went through physical therapy, and actually did a great job in spite of having one massively swollen arm and being starved. Then respiratory therapy came in for her breathing treatment and she slept through it for once. SO tired.

It is all I can do to hold myself back from going out to the nurse’s station and DEMANDING that someone call Radiology RIGHT NOW. I understand you had some emergencies this morning, well guess what – now kendall’s the emergency! Stuff that in your pipe and smoke it!

I will hold myself back though. Being psychotic to nurses who have no control over this will not help anyone. And really, her nurse today is being a huge advocate for her, helping us keep her as pain free as possible in the meantime.

So that’s where we are right now. Just waiting.

Waiting for a car to go, waiting for the snow to snow

waiting for the phone to ring, waiting for a bird to sing.

All you will do is just WAIT.

(borrowed from the beloved Dr. Seuss)

 

Oh good – one last fun thing – ben just got shards of metal in his lunch. I think the hospital is trying to kill us all today.

Breathe deep.

God is in control here somewhere.

 

terra

Biggest news of Sunday –  We’re OFF OXYGEN!!! She is now breathing completely on her own and moving air and oxygen through her lungs and blood with her own abilities. Her heartrate is much more normal, she is sleeping, and the best part? She smiled at us again today. THAT’s how I know we’re almost home…It’s been almost a week since I’ve seen her smile – that is so sad to me. But i am so glad to see it back.

So, here’s what I know today.

She seems to be resolving the RSV/pneumonia. That was her most acute/short term issue that HAD to be resolved. She is definitely a much healther child. Still a horrible cough, and still going through breathing treatments and “chest physiotherapy” every three hours for a half hour. We have to wean her down to 6 hours or more between treatment because they can’t send her home with orders for me to nebulize her that often. So we just hope that she builds up her strength in these good naps she is now taking to be able to last 4, then 5, then 6 hours without needing the nebulizer medicine to re-open her airways. 

The GI (gastroenterology/stomach) doctor came in today to review her case. His recommendation is going to be a few more days of NG tube feeding so we can analyze EXACTLY how many calories are going in, monitor then how much is coming out related to the input, and if she is STILL not gaining weight, then we know we have a metabolic disorder somewhere in the middle. Luckily enough, this is also what the neurologist is trying to pinpoint, so hopefully it all comes together nicely soon. Most of her bloodwork requires a few days to fully run the tests which is why we don’t have any solid answers on that yet.

To my knowledge, they are not looking at keeping her here while we wait for results. One more big test that she has to make it through is the MRI. She has to be sedated for that, and its a much easier procedure to perform when she’s an inpatient than to try to get scheduled as an outpatient. I think today Dr. A will want to discuss the benefits of keeping her for one more day in order to run that test so we have some more definite answers, plus it will give her just one more leg up on full recovery to be here for another day. I don’t know, just trying to organize my thoughts and the massive amount of medical info that gets thrown at us every day.

So besides the RSV we are looking at:

Hypotonia – this is a generic diagnosis meaning she has low muscle tone. The neuro team is trying to assess WHY she is hypotonic. She will be recommended for physical therapy on a pretty aggressive basis to resolve this, and they are testing her blood for a slew of disorders that present with hypotonia to hopefully get a narrowed down view of what we can start expecting for her real diagnosis. Dr. A thinks that the hypotonia is really the key to everything (lung issues, heart issues and digestive issues), so we’re in a holding pattern right now till we get the MRI and bloodwork back on that. They haven’t said the words “muscular dystrophy” or anything – i think simply because her symptoms could just as easily be something innocent and benign as they could be something life-altering. She is really throwing them for a loop on this one!

PDA – Patent Ductus Arteriosus – Basically an extra valve/opening in her heart that is TOTALLY normal – for a fetus. It helps the baby not waste energy in utero by redirecting blood flow AWAY from the lungs (since babies in mommy’s tummy don’t breathe air/use their lungs), and back into their bloodstream. In Kendall’s case, hers never closed, so her bloodflow is off. They haven’t put her through a bunch of testing on this yet because Dr. A thinks that the defect is because of her hypotonia, not the reason FOR it. They feel like if we can get her muscles to all work right, her heart muscle will close this opening and problem will be solved. This is probably the only area that doesn’t seem quite right to me, because my gut says – “hey! we finally found a part of the cycle that we CAN control, let’s stop it and see if we can’t get some resolution!” But I also realize that i have no medical degree so i keep my mouth mostly shut. We’ll see how long that lasts today during rounds…

And speak of the devil! In he walks…

So after rounds here’s where we stand.

He DOES think the PDA could be a bigger problem, but also feels that giving her muscles time to recuperate on their own with all the physical therapy plus nutritional fortification will hopefully make a better improvement than jumping right into heart surgery. Valid point, doctor.

We are doing her MRI tomorrow to either FIND or ELIMINATE any neurological issues affecting the hypotonia/muscle tone issues. I am kind of scared about this. She has to be sedated. I know worse things happen in the world every day, but hello – i barely handled my girls’ ear tube surgery with sedation (the two surgeries combined lasted less than half an hour!), so i do’nt know how i will not panic having them take my BABY, peanut little sickly baby, sedate her, and have her gone for an hour. I will need serious distraction techniques. It’s at 8 am monday morning, so if any of you are up and reading this before then – send me funny texts or something!!!

And then we wait and see.

The doctor is again greatly encouraged by today’s progress, getting off the oxygen and such. She just overall LOOKS so much improved. She has, in spite of a continuous feeding of 140 ounces, gained only .3 ounces, but they are willing to look at it in the course of a few days vs. day to day at this point. I WISH i had a metabolism that burned up 99.997% of everything i ate. Chocolate cake for every meal! woot! But – i feel like i stopped making sense with this post a few paragraphs back.

So i’ll stop making it worse, try again tomorrow when we have more info, and instead leave you with a few pictures. We’ll go with happy kendall, since that’s how she was most of today.

Thank you all SO MUCH for your prayers and thoughts and the wonderful words you leave us in your comments. I cannot tell you how much it all means to me, to know how lifted up and supported we are by your love.