Day 2: She Let Daddy Hold Her

Phew. Finally – a moment to take a deep breath and slooowly exhale.

Since deciding to postpone BabyR’s procedures this week – I have had this nagging feeling that I am supposed to be doing something. We were supposed to take R into the hospital yesterday and at this very moment I would have been watching him “come out of” the anesthesia. Yuck. Although we will probably be doing the procedures in a few weeks I am very glad that my little boy is not going through them right now.

When our GI doc told me that he wanted to use test results from one of the twins in order to diagnose them both I was annoyed and irritated at the concept of treating two DIFFERENT patients based on ONE set of tests. That was BEFORE BabyM went through her procedure. It was pretty awful.

Poor baby had to be wrapped up in a blanket like a little baby burrito (the nurse’s term) and then have a feeding tube forced down her nose. Next she had an IV put in her hand (wrapped up like a burrito again). At that point she didn’t trust being laid down and it wasn’t until we were home for a while that she didn’t cry and fight against being laid down on her back. After a start like that it is no surprise that she was not willing to let anyone near her for anything else. That sure made things difficult as she had to have her vitals taken constantly (a little too much for what we were there for if you ask me). With Lancaster General being a teaching hospital it made it much more difficult on BabyM to have to accommodate the student nurses. Honestly if we were going to be there for any amount of time I would have told them no more student nurses – at all. The staff nurses were great and BabyM loved – well liked – Nurse Lauren (she was obviously experienced as a pediatric nurse).

There was one nurse who I would have had to “throw down with” had we been there longer. Oh well – when you are as involved with things as I am – it is bound to happen.

BabyM was a riot when she was feeling ok – and aside from being messed with she did really well. She wanted to go “out sieeed” which meant in the hallway. We would walk down one end of the hall way and she would say “moh, moh” (more) and we would go again. By the evenings she was so bored that she was RUNNING up and down the hallway – with me trying to keep up with her IV stand. At one point she got going so fast (she saw that the door off the ward was opened) that I almost yanked her feeding tube out by not keeping up with the IV stand.

Even though we were admitted around 9am it wasn’t until after 10pm that she started emptying her bowels. Ugh. If only the staff would have listened to Shawn… They were pushing 8 ounces per hour of the prep liquid via the feeding tube. This baby is not even 20 pounds and only eats around 6 ounces ever 3 or 4 hours. Shawn told the nurse she would be throwing it up at that rate. I am fairly sure that if I had been there at the time I would have insisted that they contact our doctor and start more slowly. Unfortunately I wasn’t there and by the time Shawn told me about it didn’t occur to me to have the doctor called. Sure enough it didn’t take long for her to start throwing it up, and the nurse decided to turn it off altogether. By the time the doctor was called and it was started up again it was around 9pm! That was a LONG night.

The next day we had to wait a very long time for the procedure to start. At least on the day of prep BabyM’s belly had the sensation of being full. The day of the procedure she was weak, tired, and hungry – she couldn’t have ANY thing to drink or eat – not even water or ice. She asked for milk often but she did great.

The staff was great; they wanted to wheel BabyM down to the OR in her crib. Yeah right, I insisted they let me carry her or hold her in a wheel chair because I knew she would just stand and cry. One great orderly was willing to accommodate and after realizing that they couldn’t really wield the crib and a chair she asked me if I wanted to ride in the crib. Ha! I had been in the crib most of the day and night anyway. BabyM got quite a kick out of going for a ride as we both sat in the crib – sides up – being wheeled through the hospital!

The nursing staff in the OR was great too, but it was pretty miserable to watch them walk off with my daughter. I am so used to being right there for everything – making sure there are no mistakes made. This was the time I HAD to let go of control though. The wait was long, but finally our GI doc came out and talked to me. He didn’t see much. We would have to wait for the biopsies. The anesthesiologist came out and talked to me as well. I SO liked Dr. Mike. At my request, he came onto the pediatric ward to consult with me the day before. I was concerned with giving BabyM the choice anesthesia since it contained soy oil. Given that BabyM has both an IgE allergy and a cell-mediated (FPIES) allergy to soy I was very concerned. Even though an allergic reaction to any oil is rare, Dr. Mike was patient and not all condescending to my concerns. We came up with a plan to preemptively treat BabyM with Benadryl for any possible IgE reaction and a steroid to combat any delayed, cell-mediated reaction. After the procedure Dr. Mike came out and told me that she did great. He had begun to push a small amount of the propofol and waited to see if there was a reaction, then a little more, then he gave the rest. We have been spending SO much time fighting for doctors to hear our concerns and proceed with caution – it was so refreshing to have someone like Dr. Mike.

BabyM was back to her normal self just a couple of days after getting home. By day two she even let her daddy hold her!

THE NEWS:

The scope ruled out any inflammatory bowel disease, crohn’s disease, ulcerative colitis etc.

There were no Eosinophilic Disorders (EGIDs) revealed. The good doctor decided to tell me that we could have missed this since BabyM was mostly on an elemental formula. We had known that and had been trialing some foods to trigger her immune system, but after hearing from him after the fact – we probably should have given her an extreme trigger (milk) in order to fully rule out EGIDs. Thanks for the info AFTER the procedure.

He did see nodular lymphoid hyperplasia – which is a common characteristic of food allergy he said. I have found this to be seen in FPIES after talking to the moms.

We are still waiting on the Lyme tests to come back.

Here We Go!

September - time to hold on tight for a wild ride.

Thursday BabyM will be admitted to Lancaster General for her “prep,” followed by her colonoscopy and endoscopy on Friday. This will not be all that fun since she will have to fast for more than 24 hours and will more than likely have a nasal feeding tube put in to drink the prep liquid…which will then force her bowels to dispel EVERYTHING.

Our favorite Doctor Sullivan is in agreement that we should take this opportunity to run Lyme and Co-Infection tests on a biopsy. Now we are just hoping that the GI doc agrees to give us an “extra” biopsy. Honestly though, I have yet to meet a doctor who is fond of another doctor saying, “oh, by the way, you’re not going to run all the tests that should be run…let me.” This should be somewhat interesting, but my hope is in God so I have no doubt that it will happen.

As it turns out, I am not nearly as annoyed with our GI as I thought I was. I was able to speak with him voice to voice (without going through the nurse) about why he was not ordering scopes for both of the kids. Although I didn’t totally agree with his reasoning, it did make sense on one level. I am convinced that the nurse – the communication barrier – is the problem here. When I was able to make my position clear to the doctor he agreed to order BabyR’s tests. So as long as BabyM’s results don’t show an infectious disease, BabyR will have his scopes on the 24th of this month. If there is an infectious disease on BabyM’s results, the doc wants to treat them both as a matter of course. I don’t agree with this approach across the board, but we’ll see.

So...

2 days in the hospital with BabyM this week

A trip to Germantown on Monday to see my Lyme doc

Away on a MOM’S WEEKEND!! (This is SO great, but given our schedule this month I would have changed the date of my trip if I hadn’t already bought the plane ticket.)

Back just in time for our trip to Philly for a double appointment with CHOP Allergy

Then back to the hospital for 2 more days for BabyR

All of this happens within a 2 week time period.

Here we go!

Poor Baby

It has been a tough couple of weeks for the little ones. We have trialed some foods…avocado, plum, and pears and challenged the “new” formula (Neocate Jr.) the GI doctor put them on.

The result? Fail. Fail. Fail. Fail/Pass. The fail/pass is really no surprise at all. We have suspected for some time that the Neocate Jr. was causing a reaction for BabyM and BabyR – sure enough when we removed it – we began to see improvements in their appetite and stools. Two weeks on the old formula (Nutramigen AA) and they both passed their FIRST FORMED STOOL in MONTHS! So the fail was the new formula and the pass was the old formula. I just heard back from our Nutritionist and the “old” formula leaves them lacking in some key nutrients so we will have to have a special supplement compounded by the Cumberland Apothecary.

It seems that we are always going one step forward and two steps back. Poor little BabyM has become SO constipated as a result of the formula change (believe it or not this implies that she is NOT reacting)! Last weekend we had to give her a suppository – which was traumatic, but it worked. Even though we followed up with a daily magnesium supplement (which before Neocate Jr. worked great), today marked another 5.5 days since BabyM passed any stool. Great. Last night we gave her milk of magnesia (per our favorite Dr. Sullivan) and this morning she was in so much pain and couldn’t pass anything. So I had to take her in to see Doc. Poor baby was crying and screaming; “No, no, no, no, no…” So before nap we had to give her a fleet enema – that was AWEFUL – but thank God for Bethy.

She still has some pretty extreme “stool passage” ahead – I hope she can get it all out tomorrow.

What a tough couple of weeks for them. Trialing foods is no small thing on their little systems. After pears BabyR was up most of the night and screaming for much of it. Both BabyM and BabyR had similar issues following the other foods but not nearly as extreme as pears... which is frustrating since pears are almost unheard of as a trigger food for FPIES babies.

For any of you FPIES mommies – we had mood changes: irritability, aggression, fussiness etc. as well as allergy ring diaper rash (plum), malabsorbed fat curds in stool (avocado), fever, sleep disturbances (major with pears), ENT irritation and itching, increasingly loose stools, mucous, reflux (gone except during reactions).

Well big things are happening this month. There is lots of news in what we are doing for diagnostics in September, and I will write about all of that…another day. This has been a long one – and it is almost time for BabyM's next dose of milk of magnesia.

Poor baby.