Little Ladybug Hugs

It’s so hard to believe that we’ve been in the hospital two months now.  The days tend to mesh into one another – half the time I never even know what day it is.

I was really hoping to have my little ladybug home by thanksgiving, however to my surprise tomorrow is October 1.  (It’s CRAZY.  What happened to August?) Unless the teams can get their butts in gear and coordinate the MRI/Echocardiogram next week I don’t think we’ll be home.  I mentioned it again today to the wee intern, that it must be done before we get discharged or I’ll form a sit in and chain myself to the crib.  He looked at me like I was joking.  I guess he’s yet to experience such a vigilant mom in his young career.

My princess is nearly up to full feeds with the new formula Neocate, everyone myself included are still very precautious but she is tolerating it quite well. (knock on wood)

This past week has been rather difficult with tests, awaiting the results, and numerous meetings with numerous doctors.  I’ve decided to take a wee little blogging break  to regroup my thoughts, and do some research to prepare for my return after the CDN Thanksgiving. (unless there is a huge update then I’ll add another little note to keep everyone in the loop)

Thank you all again for all your support.  See you soon!   xoxo

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Along this journey there have been quite a few ups and downs and bumps in the road.  It has been a long road  and we’ve got a wee bit longer to go, but the sun is finally begining  to shine on the horizon.

The most repeatative bumps are feeds.  They go great for a day or two then have to be stopped because she isn’t tolerating them.

Like I’ve said many times a parent knows their child better than any doctor ever could.  So I had to laugh when one doc said there was nothing wrong with my princess and that she was just a fussy baby.  After getting over the initial shock of that comment I asked the doc to explain to me why every time the feeding pump sends more food through the g-tube into my daughters tummy, she cries in pain.  However within an hour after stopping feeds completely she goes back to being her happy content self.

Needless to say – they couldn’t.

Another GI test was done on Friday, this time they put the solution through the g-tube to follow the exact path her food has been taking.  Within 10 minutes the doctor monitoring the x-ray found the problem causing all my daughters discomfort – probably since she’s been born.

The Coles Notes verson: when food goes in the stomach it then goes through the duodenum and makes its way through the small intestine then large with a progressive wave of contraction and relaxation  until the contests are forced our of your system. The contraction and relaxation is called Peristalsis.  My little ladybugs tummy can’t do this so food just keeps building up in her tummy causing discomfort until it everutally and very slowly gets forced through.

Fussy baby my a**!

According to the GI specialist there are three causes for the absence of Peristalsis.
1. Caused by the surgery – ruled out
2. Part of NYDS (not yet diagnosed syndrome)
3. Sevre milk protein allergy

There are three treatments
1. Erythromycin (2 weeks on 3 weeks off)
2. A stronger med than the one she is on now for digestion (can’t recall the name – but could cause neurological side effects and was taken off the market 10 years ago.  However is apparently is still available in certain cases.
3. Neocate Formula for infants with sevre milk/soy/food protein allergies or intolerances.

Yesterday, for what I pray will be the only time, my princess started up on feeds again.  This time at a very low rate and with the special formula.

I truly hope that the cause is only (used loosely) a milk protein allergy and the new formula helps everything get back on track.

One day at a time.

Milstone Celebration:  My little ladybug got her first tooth (on the top) on September 8/10 and the second looks like it will be here in the next few days.  I love milestones!

I wanted to thank everyone – family, friends, friends of friends, and especially the families that know exactly what I’m going through, for being so supportive through out everything.  This blog has become my release and my way of connecting with everyone on a whole new level.  I’m very grateful for all the  on-going support.   Thank you.   x0x0

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While I was in Thailand a few years back the most popular phrase on t-shirts and souveniers was Same Same, But Different. That saying pretty much sums up this past week.

I’m happy to say that my little ladybug is finally tolerating full feeds through the G-Tube, it’s been a bit of a battle but everything seems to be on the up and up feeding wise.

The meds for her hypsarrythmia began late last week. They started off at a very low dose, every two days the dose was doubled with the hope that she would tolerate the maintenance amount. Well, in true princess style things couldn’t just run smoothly. This past weekend she was up to half strength and it was taking a huge toll on her body. All she wanted to do was sleep, and sleep, and sleep. I knew some sedation was to be expected but nothing could prepare me for watching my daughter lapse into such a deep sleep that she would begin to hold her breath. I guess they forgot the apnea section in the side effects hand-out. I thought I could handle everything thrown at me thus far – but when the nurse was trying to wake up my daughter and the only reaction was a little eyelash flicker, I couldn’t prevent my mind from going on a tangent of what could possibly be wrong. Did she have another adverse side effect to the Vigabtrin and was now in some sort of coma. Why isn’t she waking up? The only thing that kept me grounded was that her vitals were fairly stable again. Eventually – 4 hours later she began to wake up. The doctors decided to hold the dosage increase for a day just to monitor her. By Sunday morning she was somewhat like herself again, although she had a constant glaze over her eyes. She has since been on the full dose, isn’t as sleepy and hasn’t had another episode of apnea.

A little side note: I just spoke with my daughters nurse and for around 1 hour this evening she was cooing, looking around, and quite happy and content. I couldn’t have asked for any sweeter dreams tonight.

It has certainly been a busy couple of weeks since my last post.  Early this afternoon my little princess was moved from the paediatric ICU back to the children’s ward.  Such a welcome change.  Although it was very reassuring to know that a nurse is just outside the door in the PICU it was a good feeling to know that my ladybug is finally well enough to be transferred back to the ward.

Since the surgery the next item on the agenda was to change over the G-Tube feeds from Pedialyte to the actual formula. The transition went smoothly for the first couple days I even came home Friday a wee bit early to get a good nights sleep. Then when I came in the next morning the acid reflux had returned with a vengeance – screaming, arching, vomiting.  As bad as it sounds coming from a mother who loves my daughter dearly it was quite comparable to the scene in the exorcist.  All kidding aside it meant that the formula would have to stop and we would return back to the pedialyte. Two more days passed and once again things seemed to settle. Today the  non-dairy, non-soy formula Nutramagen (which by the way smells just as horrific going in as coming out) was started again.  Aside from a lot of discomfort, and arching it is being tolerated.  One day at a time.

A request has been put in to finally get an MRI done while we are in the hospital.  Especially since the clerk cancelled the out-patient one we had been waiting over 7 months for. (Once again props to the “fantastic” Ontario medical system) It’s just a matter of getting the OR time and an anaesthesiologist to coincide with Neurology for the MRI  because she will have to be put under a general anaesthetic.  Oh and since she will already be sedated cardiology wants in on the festivities to do an echocardiogram.   Seeing as every team who is looking after my daughter wants this done I’m happy we are finally seeing some progress.

I guess when one spends an extended time in a children’s hospital one is likely to be recognized by many nurses – well my sweet little princess was getting a reputation for being quite the diva on the ward. In fact, when the night nurse came on she already heard how adorable my daughter and that as soon as she wet or soiled her diaper she demanded a new one be put on that instant. (I’m with the ladybug on this one I wouldn’t want to sit in a soiled diaper either) Don’t even get me started on if the soother comes out – she will be all sweet, cooing smiling and then if no one helps then the adorable little diva appears.  I’ll post some pictures down the road but she has great big eyes and long eyelashes and even for the nurses it’s hard to refuse a cuddle only fueling their diva nick-name.

My hope is to be out by end of the month – with any luck the 29th because that’s when my most recent parking pass expires and I would really hate to have to keep giving the company that owns the parking more money.  

Once the feeds are back to normal my daughter will be able to start her Vegabatrin for the Hypsarrhythmia (mild form of infantile spasms) and if those meds are tolerated we will finally be homeward bound.

4 days post surgery. My little princess is resting comfortably for the first time in weeks.

The surgery went great. It was a little over four hours but they managed to put in a G-tube, a Port and did a laparotomy. (a surgical procedure involving an incision through the abdominal wall to gain access into the abdominal cavity) During the laparotomy they found a portion of my daughters small intestine that was inflamed and looked abnormal. After consulting the GI team the decision was made to sent it to pathology so they did a 15cm resection and away it went.

Shortly after we returned to the ward the wonderful Dr. B. (surgeon) came in with a big smile and told us that the entire portion of small intestine removed was an ulcer. An ulcer that was most likely caused from stress. Crazy isn’t it – a 9 month old baby getting an ulcer due to stress. I guess a million and one x-rays, ultrasounds, poking and poking and poking for any type of vein for an IV or to get blood. Would be more than stressful to a grown adult let alone an infant.

It was a huge relief that they found and removed the cause for the bleed. No more transfusions. At least I thought.

The morning after her surgery was a nightmare. My little princess just had a major surgery for an adult never mind for a wee 9 month old. Initially I was extremely irate and was all set to go into great detail of all the mis-haps that came about that day; however after having some time to cool down I’ll just give a brief synopsis. Somehow the orders were “mis-read” “misinterpreted” “missed” (I know what happened but out of respect for the nurses that are fabulous I’ll just leave it at that.) In any case my daughter hadn’t had ANY type of pain medication for well over 5 hours. She grew very irritable which was inevitable and became tachycardic(high heart rate). Eventually everything got cleared up and she was given a morphine infusion. Once that little crisis cleared up yet another one arose. She had started bleeding through her NG suction. Dr B. just happened to be checking up on our little ladybug and noticed that someone had turned her suction to over 100 when it’s supposed to be 40. Sooooo my little princess ended loosing a fair amount of blood was moved to the PICU and needed a 5th and what I’m hoping will be final transfusion. She is being taken care of extremely well there.

Now that she is on her regularly scheduled pain meds I am finally starting to see signs of my daughter again. She is beginning to coo again and even smile. It could just be that she is stoned off the morphine – but I’ll take it. 🙂

My little princess has started a small amount of Pedialyte through the G-tube, and will eventually start on formula.

All in all our little ladybug is beginning to recover, and hopefully we will be home in a few weeks.