Yes it's official.
Liam has had his 30th hospital stay.
We've had a hell of a week!!
On the 17th Liam was taken to Children's hospital ER.
He was vomiting,
running a fever,
and required oxygen.
By the time we got to ER,
it's an hour drive,
Liam was breathing very heavy.
So heavy that it had the nurse scared.
She put an oxygen mask on him and pumped 13 litters into it.
I had had him on only 1 1/2 litters.
After quiet some time on 13 liters and an hour treatment
his breathing calmed down.
They took blood for labs.
Checking all the usual possibilities like mediport infection.
At the end of getting the blood out of the mediport,
it clogged up on them.
A blood clot got lodged and they were unable to get it out.
They called the doc and had to place an IV in his hand.
Thanks to all the time he's had to heal his veins,
getting an IV was a snap.
Through the IV they gave Liam fluids,
and some very powerful heavy duty antibiotics just in case it was a mediport infecion.
They used TPA to try an break up the clot.
It was very hard for them to get the TPA into the mediport.
The nurse pushed with all her might to get it in.
Two hours later it was still clogged.
By this time we already knew Liam was being admitted.
One for the clot in his mediport.
Two for his labs showing elevated white blood count.
Three not tolerating feeds.
Four his sudden oxygen requirement.
Good news was the xray of his lungs looked clear.
At 6am on the 18th we were still in ER.
Justin came to stay with Liam so I could rush home and work at 8:30am.
Later that morning the nurses in ER tried again to draw from his mediport.
They were again,
unsuccessful.
So they pushed TPA again.
My husband said that the nurse pushed even harder.
He said she pushed the TPA with all she had and was straining to get it in.
Then after a few hours they tried to draw blood.
hey got very very little. Just pulled enough into the needle line before stopping.
They were quick to announce that his mediport was now unclogged.
HMM....
Still because it was barely working they continued to use the IV in his hand.
Smart move on their part considering how this story ends.
They didn't start Liam's feeds back up until late afternoon on the 18th.
He was able to tolerate a full bolus of 4oz of Pediatric Compleate.
His 12 hour continuos bolus also went very well.
He continued to need oxygen and get breathing treatments around the clock.
At 11am on the 19th they took Liam completely off oxygen.
He tolerated room air perfectly at this point.
The "doctor" told us that if Liam tolerated room air for 24 hours,
then he would be allowed to go home.
Meanwhile his blood cultures came back negative.
Meaning no mediport infection.
(theres more to this just wait)
We still had no clue what was wrong with Liam.
On thursday the 19th at 7pm I arrived in Liam's hospital room.
I almost couldn't function while away from him knowing he was sick.
I felt horrible for not being by his side.
I even had a break down and cried about it.
I was so happy to be back at his side and caring for him.
He was happy to see me too.
Mommy gave him loads and loads of cuddles and anything he asked for.
I had took one look at Liam IV in his hand,
and explained to the nurse I felt his hand looked really puffy like it was blown.
She said that yes his hand was puffy but it was fine.
I told her i really felt it was gone.
She felt his hand and said it was fine.
I didn't want to make waves.
I knew that sometimes Liams hand did get pudgy when it was taped like that,
but I also knew that when it was red and puffy like that,
chanced were good it was blown.
I took her word though since she'd been watching him for two nights now.
During the night on the 19th/20th Liam started vomiting.
I honestly thought it was from coughing so much.
Because he started coughing before he vomited the nurses agreed.
We were even able to continue the feed.
He ended up doing this twice in the matter of 30 minutes.
The only major problem we saw was that he would start his coughing attacks,
about 30 minutes before his treatment was due.
Thankfully all the RT's were right on time.
On Friday the 20th the Doctors and "doctor" declared that Liam was good to go home.
When we finally got the discharge paper work it was around 5pm.
First to come out was the mediport.
They'd kept the mediport needle in just in case.
The nurse flushed it with hepran,
like we always do.
Then took off the dressing and out came the needle.
No hassle,
no pulling,
not like normal.
What came out with the needle?
All the hepran she had just pushed.
You know what a blown IV look like?
Well this looked just like that but bigger and on his chest.
I staired at it and then at her in question.
My brain tried to process what the situation was and what it all meant.
At the same time both the nurse and I mentally hit our heads on that metaphoric wall.
We started talking about how the heck this could happen.
After talking about everything from ER to then,
we were able to come to a conclusion we both agreed on.
The ER nurse was NOT supposed to push the TPA (or anything else) that hard.
Why?
Because it could cause the needle to dislodge.
And what had happened here?
The needle dislodged!!
Thankfully we didn't use it!
So then we called the "doctor" and notified him of what had happened.
He came in to talk to me so I asked what the side effects were.
I mean we just put in a whole months worth of TPA straight into Liam's chest cavity.
A medicine that's supposed to prevent the blood in the mediport from clotting.
What was his responce?
That the body would absorb it in time and he would be fine.
No side effects.
Really??
The charge nurse came in later to let me know this happened once to an adult patients mediport she was working with and his entire left side swelled up pretty bad and was red.
But yea the "doctor" said no side effects.
Thankfully there are nurses there who care and let me know what the possibilities were.
Seriously we've had some amazing nurses in this journey.
Ones I would have been lost without.
Finally it was time for the discharge instructions.
The nurse and I were going through the paper work,
and we were both confounded and pissed at what we were reading.
The "doctor" wrote a bunch of symptoms and diagnosis that Liam never had.
He wrote that Liam was on meds he was never on.
He also stated that Liam had a broviac instead of a mediport.
BIG DIFFERENCE!!!
The nurse apologozed profusely for this.
That's when I learned that the "doctor"
was actually a second year med student.
REALLY???
I was fumming pissed.
No wonder he seemed like he knew nothing and had NO answers for us!
Instead of waiting around for notes at this point,
I made noted on her copy of the paperwork before signing it.
She made several notes of her own.
She said this guy was on her list because he was always screwing up.
Putting our frustration and anger aside,
it was time to get the IV out of Liam's hand.
Guess what we find?
His IV had blown as well!!
I told the nurse how I had thought it was the night before,
but when I brought it up to the night nurse she insured me it was fine.
At this point our poor nurse was at her wits end.
She explained that she was going to talk to the head doctor of that group,
explain what had happened with the other "doctor",
as well as make a incident report.
She said it needed to be documented in case Liam ended up having symptoms from it.
She had our back all the way.
After I dressed Liam and we grabbed all our stuff,
we left.
As we walked through past the nurse's station we found our nurse on the phone.
Sure enough she was already making the complaints and incident reports.
I swear this lady had a heart of gold.
I can only hope that if and when Liam has to go back,
that we get her again.
I truely love her for honestly caring about our little lamb.
What's going on now?
Well Liam hasn't gotten better.
In fact since he's been discharged he's gotten worse.
The next day (21st)
Liam started running fevers.
101.6 on saturday morning.
I almost rushed him back that very minute.
In fact he was looking so bad on saturday morning that I called into work and started packing our bags.
Justin talked to me and convinced me to calm down and take a few steps before rushing off.
We gave him motrin and a cool shower and he cooled off.
He was also breathing fast and coughing so we gave an early treatment.
At this point we were doing albuterol very 4 hours.
His pulmacurt and atravant in the morning and night.
At nights he was vomiting his formula feeds.
We had to stop them as soon as that happened.
It wasn't just some vomit but full on perjectile.
On sunday we was still running fevers.
I went and bought gatoraide to run through his tube to keep him hydrated.
We also had to start using atrovant every 4 hours.
Liam was getting a treatment every 2 hours at this point.
He was also needing oxygen at night.
Sunday night/ Monday morning ay 1am he started vomiting without even coughing.
Again it was perjectile.
I stopped the formula and started gatoraide.
During the late mornings and into the evening Liam seemed fine.
If it wasn't for all the coughing you'd never know he was sick.
Monday I had to call into work again.
Liam had to go see our pediatrician.
It was mandatory.
Liam's cough and the way he behaved screamed it was time.
Our pediatrician gave him a combined albuterol/atrovant treatment so he could hear the before and after in Liam's lungs.
Thankfully he said the wheeze pretty much went away,
and it didn't sound like pnuemonia.
So we went home with a different breathing treatment plan.
Albuterol every 3 hours.
Atrovant every 6 hours
This has helped but Liam is still so congested.
We also started gatoraide boluses in the daytime.
This is to ensure he stays hydrated.
And our pedi is ok with oxygen use at night.
He said whatever helps Liam stay home longer.
Today Liam has thrown up twice on his boluses.
He barely tolerates 2 oz when his normal is 4.
This had be extremely worried.
I called home every break I had to check on him.
Every time Liam wasn't running a fever,
refused to eat anything,
and was running amok like normal.
Still the very low calorie intake was so stressful.
Our pedi,
who is amazing and the best EVER,
made a house call tonight to check on him.
Liam's lungs have a wheeze here and there,
but are moving air well.
He said to keep doing what we're doing.
Lower the night feed rate so he keeps the formula down.
That way he gets calories in him.
He said he's ok with oxygen usage at night.
He feels that Liam can still stay home at this point.
Thank Heavens because I was so worried.
We are to text him tomarrow letting him know how Liam's doing.
Yes text him,
as in his personal cell phone.
Thats how awesome our pediatrician is.
In other good news,
the Pediatric Compleate was approved my insurance and will be delivered tomarrow.
We were first told it would not be covered,
because it's made by nestle.
Well that worker was thankfully wrong.
Our GI gave us a case of it a few weeks ago to try.
The transition from Elecare JR to Compleate was seemless.
Liam has never tollerated something so quickly and seemlessly before.
Compleate isn't an actual formula because it is not milk based.
It's actual food blended up.
When I was blending foods and pushing them through Liams gtube
we saw an immediate response.
He was more energetic.
He stopped retching and vomiting,
And he started packing on the weight faster than ever.
That says alot because Liam seldomly gains weight.
When we tried a whole case of Compleate,
I saw an immediate response.
No retching or vomiting.
More energetic.
And from one day to the next I could see weight gain in his belly.
Justin thought I was joking and didn't believe me.
But one look at Liam's belly and he was shocked.
There was a belly begining.
This was exciting.
So when we were told monday that it wouldn't be covered,
we were both so very frustrated and angry.
Compleate had given us hope,
and that hope had been ripped from out eyes.
God must have heard our prayers and given us a miracle.
We are so excited that his Compleate will be here tomarrow.
We hope that he tollerates it better right now than the formula.
I say that just because he is sick and not tolerating much of anything.
Already in this bought of sickness,
Liam has lost weight.
You can see it by just looking at him.
No need for scales with him because its very visable.
I feel so blessed that this prayer has been answered.
And if insurance hadn't covered it,
I have a very dear friend with a CDH baby of her own who is on Compleate.
She offered to supply us with some knowing how hard it is for these kids to gain weight.
I absolutely love that I have grown so close to a few mom's with CDHers,
and that we can help each other out when we can.
In other news:
Lanie has a bad ear infection.
It just started hurting last night.
She came to me crying in pain so I took her to urgent care.
The doctor there was shocked it had only started hurting that day.
She said it looked like it had been brewing for some time now.
I'm really glad we caught it before it became even worse.
Lanie hasn't complaint very much at all over it.
I fear that it could be because she knows we're under alot of stress as it is that she doesn't want to cause us more.
I sat her down and explained to her that she never should fear telling us anything.
That is shes hurting she needs to let us know so we can help.
I told her shes too young to worry.
She promised me that she hadn't been keeping it from us.
So then I started thinking that because she used to have ear infections chronically,
that she built up a tollerance to the pain.
Kind of like I built of a tollerance to my back pain.
I've only gotten worse.
Physical Therapy did strengthen my core like we wanted it too.
Only it didn't solve the problem.
In fact it might have made it worse in some ways.
I still have the pins and needles pain all over.
My upper spine cracks alot and stays sore.
My whole body stays sore for the pins and needles feeling.
The longer I'm on my feet the number and worse they get.
I missed last fridays appointment because I was at the hospital with Liam,
so I can't get into him again until July 7th.
He wants me to take meds to detox the aspertame poisoning he feels never went away.
He's also referring me to a nuerologist.
I have an MRI tomarrow.
Hoping we get some news from that very soon.
I just need to know what the problem is so that I can fix it asap.
The pain had climbed to a new level that my body is having a hard time getting used to so I can block it out.
I might have 1 decent day out of 10.
Today was my last PT appointment.
They did their last evaluation.
They feel I've outgrown what they can do for me and she also felt really bad she couldn't help make the pain go away.
I'm actually sad to see it stop.
I really liked them and think they were doing great with me.
But all good things must come to an end.
Now I need to hold myself accountable and get to the gym.
I know what I have to do to continue to strengthen my muscles and need to stick with it.
Now to reward those whose read the whole blog post:
