Sad news

Ian's stools started having blood in them. They switched his pregestamil to neocate yesterday to see if it was an intolerance to the formula.

Dr. S just called me and said that his crp levels (that show infection) shot way up and his blood count went down. They did an abdominal x-ray and Ian has NEC (necrotizing enterocolitis) again. For now, they stopped all feeds and dropped a bigger tube to help decompress his belly (pulls air and any fluids off the stomach so they can't go thru the intestines) and they are going to watch it with x-rays...continue antibiotics...and give a blood transfusion.

I'm hoping that since he's bigger, maybe he can better repair himself this time than last time but once again, it's a wait and see. I thought we were finally in the clear because he was doing so good. This is very disheartening and it makes me sick to my stomach to think of starting all over. It hurts to think he may have to go thru so much again and the thought of him laying there feeling so hungry but can't have anything. It's just heartbreaking.

Ian is 4 months old today!

Ian is 4 months old today! This is day 122 of his NICU stay.

At Birth (Born at 25wks):
2lb 4oz
13 3/4 inches

At 4 months (2 1/2 wks old adjusted):
7lb 6oz
19 inches

He's had RDS, BPD, MRSA, ROP, NEC, PDA, Ascites, Prolapsed ostomy, hypothyroidism, and been on the vent for the majority of his 4 months.

He's had 3 surgeries:
PDA Ligation
Exploratory Laporatomy - with placement of mucous fistula & jejunostomy
Exploratory Laporatomy - with takedown of fistula & jejunostomy, Disection/Resection of intestines (lost 25% of his small intestine), appendectomy, repaired umbilical hernia.

Today:
He's having lots of poopy diapers!
He's on slow feeds of pregestamil at 4cc/hr continuously. They will very slowly increase these up until at full feeds. He will remain on TPN until then but they will start to decrease the TPN once he's up to 10cc/hr feeds.
He's on antibiotics for the MRSA
He's on Synthroid for the hypothyroidism, Fentanyl for pain, Phenobarb to help deplete bilirubin, Fluconozole for fungal prevention (from mulitiple abt's), Aldactone for edema, Albuterol breathing treatments, CPT (chest percussion therapy).
He's in a crib and much more awake these days.
He's fussy and spoiled already lol

At Birth:


A few days old:



Today:

Off the vent again!

As i walked into his room this morning, the dr said "just in time mom"... i peeked around him to see Ian laying there getting a nasal canula taped to his cheeks.... The vent is OUT!
So far, he's doing well on vapotherm at 4L and 60% oxygen. They were going to start him on Pregestamil formula by feeding tube this afternoon (i had to go to work). He was sooooo wide awake, it was so cuteeeeeee! I said "are you just too excited to sleep?" After 3 long weeks on the vent.... I got to hold him today!
He was noticeably alot more yellow today (jaundice from the tpn causing liver problems)...but overall he looked soooooooo good!

Today's nurse is a royal BI*CH!

Sorry, this is a longgggg one!So my day at the nicu started off very bad and continued to take a downhill slide the rest of the day. UGH!I walked into the nicu today and Ian was awake. It was so cute... i started talking to him and said "well what are you doing awake little man, you aren't ever awake" and reached in to touch him...

NURSE: You better put your gloves on!!
ME: What? We've been doing this for 3 1/2 months and never had to wear gloves with him. Noone's been concerned so far.
NURSE: Wellll, he is infectious! You can't touch him without gloves!

At this point i'm trying to figure out why there is such an abrupt change and a tacky nurse... so i say

ME: Is JHACO (the people who investigate hospitals) here or something?
NURSE: "well yes actually, they could walk in here at any minute today"

So i sit down and i steam... I'm so ticked off that i can't think of how i'm going to tell this lady that I'm not going to wear gloves with my son and let him never feel my skin , nor me his! So i stood back up, walked to his bed and said....

ME: Just for the record, i'm not going to wear gloves with MY son. There's no reason for me to start wearing gloves now, when he's had MRSA for 3 months. Half of your staff doesn't even wear them and i'm not going to make things all proper just because you guys are expecting an inspection! If you would like for me to speak with your DON, i'd be more than happy to.

NURSE: FINE! ... She then storms out of the room and gets on her phone.

She comes back in and tries to lay a guilt trip on me saying "Did noone explain to you guys about this infection? Do you not know how it is spread?" (Told her i was a nurse, i knew all about it) "Well exactly, you are a nurse, i would think you'd care enough for your own patients to wear gloves and not take it to them!"

Next thing i know, an infection control nurse for the hospital comes in to explain MRSA to me and their policies. I repeat to her that the staff doesn't always wear gowns and gloves..why should i with my own child. He will have this for the rest of his life and what? do tehy think i'll wear gloves for the rest of his life? I also explained to her i knew all about it and worked in healthcare and was most likely a carrier myself (most nurses/dr's are). The infection control nurse agreed that parents do NOT need to wear gloves...that the baby needs to feel it's parent's touch. She did ask that we wear gowns to keep from spreading it if it got onto our clothing (and wash hands)... to other areas of the hospital. (NO PROBLEM HERE!) I explained i have no problems wearing a gown..that we'd been wearing them every time, but the staff stopped wearing them, so I figured why should i? He's MY kid! She said she understood and would be taking this to the DON, Physician, and Administrator of the hospital. She also asked that I stop others and make them gown up, glove up, etc and call her if needed to fix the situation. I explained to her that THAT is a full time job that i was not going to be doing, they can train their own stafff!

Next thing i know the nurse comes in all pissed off cuz she has now been informed that i don't have to wear gloves and agreed to gown up.. and from now on, she has to wear a gown at ALL times when she is in the room LOL..... She is ticked off and complaining that it's too hot to wear that gown all day! (i'm just cracking up inside) She got herself into this predicament!

The rest of the day she is such a *****! Every time i go near Ian or talk to him she glares at me... He starts to desat almost every time (must be getting sick cuz this is unusual for him). She makes me feel as if i'm doing something TO him to cause his desats. I felt so unwelcome and like i should not even be going near this baby... who happened to be my baby.. but she made me feel so aweful.

After he was doing good for awhile, i started to clip his nails. She said "WHAT ARE YOU DOING?"... i explained i was clipping his nails and she said "HE DOESN'T LIKE THAT!" (how the heck would she know, she's never taken care of him!)... I see he's at 89(sat) and just gave up and said "maybe tomorrow buddy". Then she pops off sarcastically "i'd wait til he's not sick!"I left... i just was so stressed out i was about to cry.

I came back as she was leaving shift (complaining about me of course but who cares). After she left i told the night nurse (a sweetheart) ... I HATE THAT NURSE, SHE'S A B****!"... and she makes a face as the nurse walks right in from behind me LOL..oops lol.

So, in his Chart is written several times he desatted...with reason down listed "MOM".... WTH? She also charted that she instructed mother to wear gloves with the infant and mother refused so she reported it to chg nurse and infection control nurse.

I will be going to the DON tomorrow and informing them that she is never to work with my son again!

It is the worst feeling in the world to feel like you shouldn't talk to or touch your own child... Like you are unwelcome and should leave immediately.

Let's end this on a good note though:

Ian has lower settings on the vent (25bpm, peep 6, pc 14, ps 12, and down to 25% oxygen!!)

His incision is covered and not draining at all. The surgeon believes now that it was an abcess that is resolved. Says he can't know for certain but that if it isn't, he will get pretty sick and they will know then. I figure it's all good though! His abdomen is still very round but Dr. S says that's from his liver. (continually damaged by the tpn). He says for now they will try to wean him from the vent, wean his pain meds, then work on starting low feeds. I asked "if he gets off the vent and starts feeds and accepts them okay, how much longer before he can come home, an estimate"... he says he has no idea... at least a month, maybe 2, maybe 3...just doesn't really know.

The eye dr saw Ian today and said his eyes are getting better and that the ROP is regressing!

I did get to hold him up in the air while the night nurse changed his bed and he just kept looking around while he was in mid air hehe

I'm sure tomorrow will be a better day! One can always hope!

Monday

They took the wound vac off today and placed a dressing on his incision (aquacell & gauze). This evening when i saw it, there was no drainage on the new dressing. Sounds like a great sign to me!! I can't wait to talk to the Dr tomorrow and see what their thoughts are and what the next steps will be. He's down to 25bpm on vent, peep 6, 30% oxygen, can't remember the pc & ps (but i mainly put this for a reminder to myself and for alissa lol). They decreased his Versaid today, his fentanyl yesterday... to me, these are all signs that they will be weaning off of the vent very soon. The reason for this thought is ... he can't be on Fentanyl or Versaid while off the vent, because it would sedate him and prevent him from initiating breathing as well on his own. I can't wait for the vent to be gone... I miss holding him and letting him do something other than lay there! I wanna snuggle so bad! :)

Improvement to Incision!

I went to the hospital early this morning so that i could be there when they changed his wound vac dressing (changed every 2-3 days). The incision looks soooooooo much better!!! It's very clean and closing in... the center (where the main leakage that they thought was the intestines then maybe an abcess) is almost completely sealed over...and the sides still have a bit to go but look great! This being the case, i asked the surgeon "with the center closing where the main problem was...does that make you think it was actually an abcess rather than the intestines and it's now resolving itself and will be fine?"... To which he wonderfully said "i think that may be it....it's looking wonderful!"..... I hope this is the case, and it looks like it just may very well be! YEAH!!!!! I am so glad to see such quick progress. Next drsg change will be monday or tuesday....and i bet it will look incredible! Just had to share my good news!

He remains on the vent at 35% oxygen, 30bpm, peep 6, pc 18, ps 12. He gained a little weight in edema and is now 7lb 11 1/2 oz...so he received lasix this morning to help with that. He's off of lipids for awhile because his triglycerides were really high. Overall, i'd say he's doing extremely better! :)



Christy

He's Shrinking!! ha!

Ian is getting less and less swollen each day! He is steadily losing weight which is good because it means the edema is going away! :) The docs changed the wound vac dressing today to see how it looked after 24hours and they said the incision already looked better and much cleaner! YEAH!! They also mentioned it could possibly be an abcess instead of intestinal leak but that they just don't know yet. I asked how they can find out and they said "in time, we just have to wait and see".... So we'll wait, and we'll see.... Maybe we'll luck out for once! In general I feel ian looks much better! They had to increase his sedation because he decided to become more active and start pulling at all of his tubes LOL.... Goooo ian! That's just that fiesty fighting attidude of his that's helping him pull through every obstacle they throw at him.

Sometimes i feel like people will think i'm a drama queen because every day is different, every thing that happens is different, and it seems i don't get to give good news all that often. Oh well, if they do, they can come live my life for a couple of days and see what a crazy life we lead these days lol.

Hugs to all!

Monday, January 21st, 2008

Ian remains on the vent (65% oxygen, 40bpm, peep of 6, pressure control of 22, pressure support of 20). They are now doing bicarb suctioning to break down the thick secretions but they are no longer "bloody". He looks sooooo much smaller today..still swollen but not nearly as swollen as he has been lately. He's down to 7lb 12 1/2oz as of this morning. They put a wound vac on his abdominal incision today. They still aren't sure what we will need to do as far as when the next surgery will be. For now their plan is to heal the incision (it should heal up all except for the fistual that has routed it's way thru the incision). The intestinal leak has actually created it's own path to the surface and will form itself into a fistula. If this portion is at the lower end of the intestines, he'll be able to get feeds, get off TPN and put a bag over hte fistula. In this case, surgery could be put off til he's much better, even up to a year possibly. If it's at an area where he will not absorb much, the treatment will be different. After the incision heals, they will do tests on the intestines and fistula to locate the leakage and any other problems, then they will get more of a plan together. So, it's another "wait and see" kinda thing. Sucks, but he's still here, and at least it made it's way to the surface rather than spilling out into the abdominal cavity. We miss the docs/rt's/nurses at our home nicu, but it looks like we'll be here at children's for a lot longer than expected, so most likely the duration of his nicu stay. At least they have the surgeons here and can address things quickly. On a good note, Ian is more alert today and moving around more, looking better :)

Had to have a hat to match the booties. Added a brim for style! lol

Bad News

Ian has poop coming out of his abdominal incision. The surgeon disagreed with me that it was poop (brown mushy stuff that reaked of feces) and insisted it was melted Aquacell (treatment they put in it). Upon closer inspection, it was confirmed... it is poop. His intestines are leaking, but from where, noone knows. What will they do? Noone yet knows. I am so frustrated and so tired of nothing going right for him. This isn't even a matter of me wanting to have him home. It's a matter of me wanting him to not have to go through so much and have so much pain and discomfort. He's been through so much in his short little life and he still has so much more to go through. I thought maybe we were finally through the woods with his intestinal surgeries, but we aren't and that absolutely aggrivates me. These surgeries are so major and so scarey, and the recovery is soooo very hard. He still hasn't yet recovered from the past surgery and it has been 10days! It sucks! It simply sucks! Why can't he catch a break, just one break? It just tears me up inside to know he has to go through this surgery all over again and then wait and see if this happens again. It's not fair! Hasn't he fought long enough? Hasn't he shown he wants to be here? Doesn't he deserve a break from all this pain?

Due Date

Today was my due date for Ian to be born. He is 104 days old today! That's just crazy!

Booties by mommy! :)

I worked and worked and finally figured out how to crochet baby booties. These are a bit bigger to stretch over his O2 sat and bandages on his heels...So they look like lil boots (and lace up) lol.

Forum name change

Our name has changed, but our site is still as great as ever! Please visit our site at http://www.journeythroughmotherhood.org/

Update

It's now 8 days post-op. Ian remains sedated on Fentanyl and Versaid drips. He is still really swollen. He's now 8lb 10oz with all the fluid on him, he was 7lb before surgery. His ventilator settings are down a bit from earlier this week. He's now at 35bpm, peep of 7, Pressure control of 25, Pressure support of 23, and 45% oxygen. He has not had to be bagged as many times lately, just once in the past 24hours. His blood gasses are staying pretty good (ph around 7.4, CO2 around 45-58). His incision is still draining. The surgeon told me yesterday that is hoping that the draining is just a superficial infection, but that his worst fear is that it may be his intestines leaking at one of the places he reattached them. He said they will watch it for a few days and if it continues to drain much for several days and starts appearing like what would come out of the ostomy bag he used to have, then he'll know which way to go. If it is a leak in the intestines and it's at the lower distal portion that they fixed, he says it should tunnel to the surface where they could actually place a bag over it, start feeds on him, and when he gets better, go back in and do surgery again. It's all a waiting game to see which it is. We'll pray that it's just a superficial infection because i sure don't want the little guy having to go through it allllll over again. I really miss holding him and seeing him so alert...hopefully soon, everything will resolve itself.

If you are reading this Alissa, we miss you guys over there!!!!! Say hi to baby Ryan for me! :)

Take care all!

Day 100 of the NICU stay

Ian is 100 days old today!!!

My friend Julie says "oh he's so old...that explains the bald head and diapers" lol. He's still recovering from surgery. His ventilator settings are still high (40bpm, peep of 8, pressure of 29). He's down to 50% oxygen today from 100% yesterday. He is still really swollen, his abdomen and chest are very swollen. The surgeon had to reopen his incision today to allow it to drain and said alot of puss came out when he opened it. They repacked it when i was there and it's pretty yucky looking. He was throwing his arms around and wiggling, cuz hellloooooooo i'm sure that hurts!!! I asked the surgeon if he could start giving him a bolus of Fentanyl before they do that and he agreed and said they will from now on. He opened his eyes a couple of times this afternoon but can barely open them due to his face being so swollen. Was still cute regardless. I put my arm around his back with my hand on his shoulder (almost like he was being held) and was talking to him, and he smiled a couple of times awwwwwe :) Blood gasses weren't perfect, but were pretty good today. His lungs keep doing poorly and parts will collapse. They did an ultrasound today to see if he had fluid building up around his lungs compressing them more, but as far as the nurse knew (Not that this one knew much at all!!!), it was negative. They called a code on him this morning.. his oxygen dropped and she couldn't get it back up..... reason: she wasn't careful when she turned him, and extubated him! So, they reintubated him. They are getting alot of bloody secretions from his lungs by suctioning... mostly because of irritation and having to be reintubated so many times. (3 times so far in the past week that i'm aware of).

So that's the update and rant for today.... We'll see what tomorrow brings!

HUGS to you ALL!

Christy & Baby Ian

Before surgery:

Directly after surgery:

2 days post-op (alot of swelling):

And here's his poor tummy incision :(

Surgery Update

He's now 32 hours post-op and still with us He's pretty swollen and having alot of respiratory issues. He is on very high vent settings, but his oxygen rate is down from 100% to 70% at this time. The alveoli in his lungs keep collapsing.. he's getting albuterol, chest percussion therapy, and suctioning, changes in position to accomadate.. all for that. He dropped really low this morning and they began bagging him but nothing was helping so they ended up reintubating him (other had come out of place). His blood pressures have remained stable since surgery. His blood gasses have been better all day (not perfect , but better than yesterday). The surgery:He went in for surgery at 10:40am yesterday. At noon they had just finished placing the central line and were beginning the abdominal surgery. They had trouble getting the central line in anywhere, tried 3 times on his left chest wall, then once to the right chest wall, and ended up with it in the right side of his neck. The surgery then lasted til about 2:30pm. (total of 4 hours for both). It ends up the intestine at the mucous fistula was all massed and needed to be removed. There was a portion that was dilated to about the diameter of an egg, instead of a small pen as it should be that needed to be removed as well. They think this area was the initial problem and that it may have even been a congenital defect. They also thing that since the infection in this area couldn't come out up or down, it was making him sick all the time with infections and such. They removed the two sections, a total of approximately 1 1/2 feet (or 45cm) of intestine. This was equal to between 20 and 25% of his intestines. They also repaired two perforations. They removed his appendix while in there as well and repaired an umbilical hernia. The physician stated that a child can actually have 75% removed and still go on normally, just not more than that. He got to keep 75% of his!!! They say as long as he heals and the intestines don't start to leak, he should be okay. We just have to get him to pull through this aftermath and he should be okay. He has a big incision across his abdomen. Hopefully in the next couple of days the fluid will start coming off and that will help with the respiratory issues, then maybe start weaning down some vent settings. I'm amazed at the news of repairing his intestines... i really honestly wasn't expecting to hear that. We definitely cried happy tears of relief when the surgicall nurse called mid surgery to tell us they were saving most of his intestines. Thank you all for being here for me, & for praying for Ian. I'm gonna head to bed so i can get up early and go back to the hospital. We are not yet in the clear, but the sky is getting a bit less cloudy HUGS!!