Day 104 & 105 - Contrast x rays started!!!

Day 104

It was a busy day today. Dr D came in this morning to do Jett's central line, unfortunately after trying for over and hour she admitted defeat and called on Dr C the director. He planned to do it in the arvo after his contrast, but as it turned out we got back too late, so central line will be done tomorrow. Jett is now in an open care system again because the cot can be moved up and down. He looks so big in it now!

Jett has been started on gentamicin and ampicillin for the e coli in his tube. Dr D thinks that it could be why his oxygen requirement had gone up as it was up to 50%.. She has also ordered an echo to check his duct.. He had pink lung secretions again so more vit K was given and it was decided he will have a vit K shot fortnightly now.. His lasix has been dropped from 4 times a day to 2 :)

Jett's ventilation was increased because of the sedation so his rate is 50, Pip 24, peep 7 and oxygen around 50%.

The contrast

Jett was given 2 bolus doses and a continuous infusion of morph and medaz for the insertion of the central line so he was totally wacked out when he had his contrast. We went over to the children's at 1pm. I went in there with him and they started by putting contrast down his naso gastric tube. They x rayed and waited but it wasn't moving past his stomach. They decided they would wait an hour and a half then x ray again. So we waited in the x ray room til after 3pm then they started again. The contrast still hadn't moved past his tummy so they decided to put the contrast in his drain. The contrast went through up to his stomach, so they don't think there was a blockage, they just think his stomach doesn't work because he has never really been fed. Anyway, we don't get official results til all the contrasts are done. The next contrast will be an enema and will be done once the contrast from the NG tube and drain has gone.. Jett slept the entire time Lol. His first outing and he was fast asleep!!! I am getting impatient now and just want this all to be over. I think surgery will be next week..

Day 105, the 2nd contrast, very unexpected!

Jett was still a bit sedated this morning, even though his infusion was stopped last night. He was given another bolus dose before Dr C finally put in the central line though. The central line went in at about lunch and I spoke to Dr D after that and she told me Jett's next contrast may be this arvo which was really unexpected! Sure enough at about 2.30 I got the call and they said radiology wanted him over ASAP. So at about 3pm we were back at the children's hospital while my lil baby had a catheter in his bum and contrast through it.. The contrast didn't take long, it moved quite quickly so we were out of there in no time. Again, no official results but the contrast went through what looked like most of the large bowel :). Jett was asleep through the procedure, but he woke up on the way back.. He was wide awake looking around. I was pointing out trees out the window lol, he had his eyes squeezed shut because it was so bright! I think he liked his little adventure though :)

Not sure when the next contrast will be, I'm hoping it will happen quickly. The next contrast they will put a catheter in his penis and put contrast in his bladder. This is to check if there's a fistula between his bladder and bowel. My poor baby, it's so invasive :(..

Jett is still in his open care system, I'm hoping now his central line is in he can go back in his big boy cot. I want to be able to sit him up again so he can look around, and that can only be done in his other cot. He wont be able to have big boy baths anymore because his central line is right up the top of his arm, near his arm pit. It will be too hard to keep dry.. I am hoping for a cuddle tomorrow, I haven't had one since Sunday!

Jett's rate is back down to 40, pip, 22, peep 7 and oxygen came down a bit to 46%. Echo didn't get done today.

I think that's it, a very busy couple of days!!!

Day 102 & 103

Day 102 - Cuddle day :)

Jett was quite unsettled today, he wanted to suck on his dummy all the time. I don't mind, but because of the tube he can't keep it in his mouth so someone has to hold it. I hold it when I'm there but I worry about when I'm not there. The nurses haven't got time to sit and hold his dummy so he gets upset :( His oxygen has gone up to about 45% today which is quite high. We had cuddles in the evening and he was really settled, but after about an hour he was a bit restless. I still had him for 3hrs though, I'm not sure when I can have another cuddle..

Day 103

Well today Jett was supposed to have his central line out in and some bloods taken but the nursery was really busy with a new admission so it will be done in the morning. I am disappointed because I was hoping to get in a sneaky quick cuddle before Jett's contrast. No such luck :(

Jett slept most of today which was good considering he was so unsettled yesterday. I have been trying to settle him without his dummy and it has worked today. His oxygen requirement has increased again though today up to 50%. It's unusual considering he's not agitated or anything.. He is still needing fairly frequent suctions his lung secretions are still quite thick.

I thought Jett had another eye test today, but the Dr checked the notes and he was given the all clear with his eyes and doesn't have to have them checked for 6 months :) Makes Mama very happy :)Tomorrow will be a busy day with his central line and contrast x ray. I really hope everything goes ok.. Pray, light candles, send vibes, do whatever you believe could help us get good new tomorrow :)

Day 100 & 101!!!!!!!!!!!!

100 days!!!

Well today the nurses decorated Jett's cot with balloons that said happy 100 days and made a beautiful card which lots of the nurses and Drs signed :), he also got a blanket and a couple teddy's..

I got a date for Jett's first contrast xray. It will be on Tuesday. I was given dates later in the month but when I saw the surgeon she said that wasn't right, so she had them changed to when they were supposed to be, which is next week. Just to recap in case you have only recently started reading, Jett has to have an xray with contrast to see what's happening with his bowel. He will have to have 3 contrast x rays, the first one they will put dye down his naso gastric tube, then a few days later they will put some dye in his bottom, then a few days later they will put it in his drain, which sits in his small intestine. The x ray will show where the dye goes and hopefully show where the bowel is narrowed. It is possible some of the bowel has died so it should show that. Hopefully from there the surgeons will make a plan soon after to operate. What they want to do is open him up and untangle his bowel and be able to separate the bowel that has adhered to his abdominal wall and liver. Once they do that, we are hoping he will have enough good bowel to allow them to cut out the affected part and join the rest up so he can start having feeding and absorbing nutrients. It will be a huge operation...

They had to do a rectal biopsy on Jett today :( it involved just taking out 3 small pieces of bowel to rule out Hirschsprung's disease, which is a blockage of the large intestine due to improper muscle movement in the bowel. They think it' s unlikely that he has it, but just want to rule it out before he has this big op.. He handled the biopsy well, it is really quick and the sample they take is from a part that has no pain receptors.. Even so he was given panadol and breast milk and Mummy was there holding his hand..

I also managed to get a midstream urine catch, but the results of that aren't back yet.

Jett and I had a lovely 4hr snuggle in the night time :), so so relaxing. No place I'd rather be and a lovely way to spend his 100 day birthday.

Day 101 - Jett's due date!!

Today I walked in the nursery to see my baby sitting up!! It was so cute. The nurse raised the back of his bed up and he was sitting up wide awake watching his mobile. He is so interactive. He loved it :) After that he had a big boy bath. The nurse made the water deep and he just floated in it. He splashed his arm and gave little kicks.. Very cute :)

After his bath the dressing of his central line was taken down because the tape was a bit tight around his arm. Unfortunately his central line had split so it had to be taken out. This means he has to have a new one because that's how he gets his nutrition :(.. It wont be done til Monday though, in the meantime he is just having fluids through an IV. The IV went in really easily, now he's older and his veins have had time to recover.. So next week will be a huge week for my baby, Monday he'll have central line and he also has to have bloods which involves having an arterial stab, then Tuesday it's off to the children's hospital for his x ray!!

I am really scared about the coming weeks, but kind of glad things are starting to move. We have been stagnant for so long. I know things could go either way, I'm just hoping it's the start of Jett's recovery and we can start looking forward to getting him home!!!

Some pics of my baby sitting up :)

Day 97,98 & 99

Well, the last few days have been uneventful. That's good, boring and uneventful is what we want :) The contrast xray is definitely next week, but no date or time yet. It's possible I could just walk in one morning and they tell me it's that day. I hope not, I need at least 24hrs to mentally prepare for it! I'm really getting nervous about upcoming surgery...

Jett's oxygen saturation parameters have gone up again since he is full term. Dr D wants him saturating between 92 and 95%. This meant at first his oxygen requirement came up to about 35%, but today it's back down. He hangs between 27 and 30%.

We had lovely cuddles last night for nearly 4 hours. By the time he goes back to bed I'm dehydrated lol, I don't care! I love love love cuddles with my boy!

He had his blood gas this morning and his CO2 was 63 which is really good for him :) His potassium is good still too. His urine out put is still great averaging around 90mls every napy change which is normally 6hrly.

Today he had his first ever big boy bath! Her loved it. He was crying during the transfer but as soon as he was in the water he relaxed straight away! He was splashing one arm about, the other had to be held above the water because of his central line. He had me bathing him, 1 nurse holding him and the other nurse holding his central line and ventilation tube! He will hopefully alternate now between sponge baths and big baths. His weight today was 3832gms :)

Dr D wants us to get a midstream urine sample. So each nappy change I stand there with a sterile jar waiting to catch his wee. Cheeky little monkey wont wee for me though! Normally he loves to wee as soon as the nappy is off, but not now we actually want him to! The reason Dr D wants the midstream is because she wants the cleanest sample possible to try and determine if there is bacteria in his wee, or if it's just on his skin..

My Mum and grandma come today :) Gana has never met Jett before, it's so exciting!

Day 94, 95 & 96 - Happy new year!

Not a lot has happened over the last few days, Jett had cuddles on new years eve in the arvo, he was wide awake and very alert :)He slept the new year away though, I was there at the stroke of midnight and he was fast asleep :) Ventilation is remaining stable he is on about 29% oxygen and up to about 33% for cares etc..

He had his wash and weigh yesterday he weighs 3685gms but he looked like he had a bit of edema, they are using 3590gms as his working weight. Since he has been on the potassium sparing diuretic they haven't needed to add potassium to his TPN, he has had blood gases the last 3 days in a row to check his potassium levels and they have been good. His CO2 has been much better since his rate has been increased to 40, his CO2 was 65 yesterday and about 71 today I think.

Today Jett has another eye test :( they are going to do his first though because it is cuddle day again. I was supposed to have him after his arvo cares but now I have to wait til they have done that. I am hoping a cuddle will settle him though after the trauma of the test. I hope it makes me feel better too,I feel like crap, I'm exhausted and emotionally drained. I am feeling very anxious when I have to leave Jett now he is more awake. He has been totally off the morphine and medazalam since Friday night.. He is so alert and a real wriggle worm. He is so beautiful, I love him so much, I need to have him home, my heart just aches to have him in my arms. I have been having trouble sleeping even though I am so tired. It's so awful and unnatural to leave my son and I hate the thought of him crying without me there to comfort him. I can't wait for the day he is home so I can just snuggle him all day and night, I want to be able to sleep next to him not in a different building, I don't want to have to leave him ever unless it's my choice and I feel ok to do do it. I hate having to choose between sleeping and being with my son, eating and being with my son. I just want a normal life with my baby. I want it to be how it should be.

New years even snuggles :)

Day 92 & 93

JETT

Day 92, 29th December, exactly 3 months old!! - Cuddle day :)

Today Jett had his blood test to test his coagulation factors in his blood. The tests came back good, but it could also be due to the Vit K he had a couple of days ago. His platelets were up, 107 so that's good.

Jett's oxygen requirement is at 29% which is good, although his rate is up a bit at 40. He is tolerating handling and suctions quite well lately, sometimes brady's to let you know he needs suctioning, but he doesn't need all his ventilation pressures increased anymore. His secretions are no longer blood stained and they have thinned out a bit, although he still sounds very rattly.

We had a lovely cuddle for 3hrs, he was asleep on my chest and I slept too. It's the best. His oxygen requirement remained the same, he seems to tolerate being upright better than the cradle hold. I think with the cradle hold he slips down and his lungs get a bit squashed.He needed his tube re taped after his cuddle, he is so strong and the tube loosens very quickly because he pulls his head away from it..

I think thats all that happened today :) Oh, I think I forgot to mention he had his head circumference measured at the beginning of the week and it was about 36 or 36.5cms.

Day 93 - Wash and weigh day

Mummy's little boy wants to be a smelly boy lol, he has hated his bath the last couple of times! They have been very quick! He has been fine getting weighed though, I don't think the nurses even increased his oxygen for the transfer. His weight today was 3590gms, so that's a loss of 235gms. dr D is happy with that though, since she increased his lasix a couple of days ago and also put him on a potassium sparing diuretic spironolactone. Dr D feels that todays weight is his real weight rather than fluid :)

Dr D said she is going to start harassing the surgeons to get the ball rolling for the contrast next week. Scary, but good too.. I guess the hard thing is that the contrast still wont give us a definitive answer as to what's happening inside that little tummy of his!

Jett had to have another tube re tape today. Twice actually. 1st time they did it because he'd had an xray this morning to see if the tube needed repositioning and it did, so they put it further down. That has to be done because he is growing so much, unfortunately because he slobbers so much and moves against the tube it became really loose quite quickly so was done again tonight. He handles tuube re tapes really well, he just lays there. Last night though an unfamiliar nurse had him and restricted his arms and he fought the whole time. The nurses that know him and know he's ok, don't pin him down and he is a lot more relaxed. Plus I am there to hold his arms if need be, but normally he's pretty good.

He has been positioned midline over the last few days and he seems to like it. Sometimes he does, other times he just gags on the tube. If he is ok, I like it because then he can see his mobile properly. Not sure what he can see, but he can definitely see something, when I move it his eyes flick up to watch it. I'm glad he has a little bit of stimulation. He must be so bored now that he's getting older. His sedation was weaned down to 1mcg the other day and tonight it is being cut out completely which means he will be more and more alert. I sing and read him stories, but still, not being picked up or be able to be taken outside must be awful.. I can't wait til I can take him outside. He has to be off breathing support first though, so a long way to go yet!

I think that's it, here some cute pics of Jett with his teddy. I encourage him to hold it otherwise he holds his tube which is not good lol!

Day 90 & 91

JETT

Day 90 - Cuddle day :)

Jett had his blood gas today, they are only done twice weekly now, his CO2 was 89 so his ventilation rate was increased to 40. His platelets were 71, so have dropped again :(.. He had a liver ultrasound, they are checking to make sure his liver isn't enlarged and that the bile ducts are working correctly and aren't blocked. Apart form that it was a fairly uneventful day, still has thick lung secretions and brady's if he's not suctioned regularly. The secretions are only stained with old blood, it's not fresh blood which is good.

When I spoke to the nurse about organising my cuddle time she said it was handed over that I had been having too many cuddles. I was really upset and confused by this as Jett is stable and his Dr said she was happy for me to have regular cuddles. Anyway, upon further investigation, she said it was because I had been having cuddles every day, which i haven't. It was clarified that I was only having 2nd daily cuddles which is what I am allowed to have, so I got my cuddle after his afternoon cares. It was soo nice, I didn't cradle hold him, I had him upright on my chest and he slept beautifully (so did I) for over 3hrs :)

I was really upset when the nurse thought at first I couldn't have a cuddle. It is so fucked that I have been a Mum for 90 days and have never been alone with my son. It sux that I have to 'arrange' to hold him. It sux that I am trying to get as many cuddles as I can get because I am so scared that this is the extent of my motherhood. I am so scared of him having surgery. I am scared I'm going to lose my baby and not know what it's like to be a mother outside of the hospital.

This really sux that we are still here in hospital. I'm so over not being able to mother my son the way I want. :( I just want to get my baby home.

Day 91 - Wash and weigh day

Today jett was weighed and he weighs 3852gms! Dr D thinks he has a little bit more fluid since going on to the oral lasix, so she has put his dose up to 4 times a day instead of twice. The lung secretions are ok now, still thick with the occasional blood staining, so Dr D still wants to do coagulation tests. This involves an arterial stab :( She is going to do it tomorrow when his blood gas is due. My poor little baby :( So fucking unfair.

The surgeons were talking about putting Jett on profylactic antibiotics because the sediment in his wee could be faeces , so he is at risk of a kidney infection apparently. They think it could be caused by a fistula. Trust my boy to be weeing poo! Not nice at all.. I am dreading this surgery, I am so terrified of what they will find in his tummy. I am scared they wont be able to fix him. I'm so scared he's going to die. The thought that this could be it sickens me. Every day I am with him, I am trying to make the most of each day so I have no regrets. I hate thinking about it, but both the Dr and the surgeon have confirmed that it is a very real possibility nothing can be done for him. I haven't lost hope though, I still express and I still talk about getting him home, I have to try to be positive. I can't give up on him. I have to believe that this isn't how our story ends.. I am just hoping for a miracle.