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
Terra,
We are praying for your whole family and especially Kendall. You are on target with wanting to gain the medical teams respect and trust. They have so much experience and want the best. But also, you and Ben know Kendall the best, so trust your instincts too. My few regrets as a patient advocate, and there weren’t many, are around not being quite assertive enough when I knew that I was right.
Many of us would love to help you guys out, now and over the long haul. You should consider having a friend or family member serve as care coordinator. They will need a fair bit of time for email and phone calls but can really take a load off of you and Ben by being the main contact point. Then you guys can focus on your kids and other personal needs that only you can do.