Good news and not so good news

The good news... well GREAT news, is that Rachel has gained weight. In fact, she is back up to 39 pounds, which is what she was back in December before she lost so much weight. Her skin is looking amazing. Her eyes are no longer sunk into her face. She doesn't have dark yellow-ish circles under her eyes. She is looking so healthy. It's been really awesome.

The downside to this is that she gained weight faster than her medical team expected. They only expected her to gain a pound or two. Not five pounds in one month. Because of this weight gain, her g-tube is now too small. They expected us to go three months before they would change out her bard button tube to a mic-key button. It's not recommended to replace a g-tube this soon after the original placement and surgery. Her body is still healing from having the tube placed in the first place. Usually the tube can be replaced during an office visit to the GI clinic. Since we're replacing the tube so soon, she has to go under anesthesia again. I'm bummed but I know it has to be done.

Her tube is so tight that it's really bothering both physically and emotionally. She has granulation tissue growing all around it and wakes up with "goopies" every morning. (meaning it's red and crusty and I have to clean it)

It's awful watching her get so upset over it. The last few days, she has been asking me to "take her tubie out" and to "go to the doctor and fix my tubie." It's tough. How do I explain to her that they don't have an opening in the OR until the 22nd. Ugh! She was crying last night and was complaining of pain in her tubie so I tried emailing her GI doctor. Of course she is out the office until Monday. I am really hoping we can get her tube replaced ASAP.

Other than this issue, she has been doing so well adjusting to being tube fed. We're no longer do night feedings. She gets a tube feeding for breakfast, eats normally (you know, the 2 foods she will accept and milk bottles) during the day, and then gets another tube feeding for dinner.

There's other news about therapy and school, but that will have to wait for when I am not a zombie. Now I must sleep!

My little tubie girl

 

We are officially a tubie family. The last week has been pretty difficult, but I am so proud of Rachel and how well she has done with the adjustment. I was so worried about how she was going to react, and she has done much better than I expected. We had to be at the hospital by about 6am the day of the surgery. She was all smiles when we got to the hospital, so of course I felt bad because I'm sure she had no idea what she was about to go through.

 



Here's my smiley sweetie waiting in the kid's playroom at the hospital before her surgery.

 

For kids Rachel's age, they don't start an IV until they are in the operating room. They usually give an oral medication to make the kids loopy while they wheel them away. An oral medication isn't an option for us since she would spit it out and throw up everywhere. They decided it would be best to wheel her back and use the oxygen mask to knock her out. She was fine while being wheeled away. I felt awful though. I knew she'd freak out for at least a minute when she realized she wasn't in the room with me anymore and they were putting something on her face. I was told that she'd be asleep within 10 seconds once the mask was on her and then wouldn't remember any of it. That was slightly comforting.

 

The procedure took about an hour. We were brought back to her side quickly since she tends to wake up from surgery a little sooner than what is usual. Her experience this time was much better than the last time she had surgery. She woke up just as we were walking up to her bed. She let out some wimpers, but was comforted by my voice. She didn't like the IV on her hand and wanted it off but and then she kept grabbing her tummy and wanted her tube off too. It took us at least 15 minutes to get her to accept that we couldn't take these things out. I was really proud of her though. She was certainly a trooper. I think it helped that they had her on morphine.

 

After about an hour in the recovery room, we got moved over to the children's hospital, which is connected to the main hospital. The nurse that was wheeling her to her room told her to say, "beep beep coming through" to anyone we passed in the halls. Rachel loved that and was super cute saying it to everyone. The rooms there are really nice and everyone gets their own room, so we were thankful for the quiet privacy. There was even a pull out chair that I slept in that night.

 

She stayed awake for the whole day after the surgery, which really surprised me. We even had to give her morphine for pain. She was pretty loopy and we watched her favorite movie, "Milo and Otis" probably 4 times until she finally passed out around 6:30. Her OT made her a "social story" about getting a g-tube. That little book was such a blessing for us to have in the hospital.  It really comforted her and helped her understand why she got a feeding tube and why she was feeling pretty icky that night.

 



 

 

The thing about spending the night in the hospital though.... is that they don't really let you sleep much. Well, Rach slept pretty good for most of the night. She was funny when the nurses would come in to take her vitals and adjust the ml's per hour on her feeding pump. She'd say, "yeave me ayone. I syeeping. You go away now, it's bedtime." Or she'd say, "you need to get outta here, I syeeping." I felt the same way and wanted those nurses to let us sleep for more than one hour at a time. Plus, those darn monitor alarms for the pump and her IV were going off at least once per hour. I was like a zombie the next morning, but Rachel was a happy camper.

 

The nurse in pre-op gave Rach a teddy bear and I had bought her a new Doc McStuffins toy set to play with while in bed. She was attached to the bear and the toys during her stay. 

 

Bob and I were taught how to take care of her feeding tube, supplies, and how to use the feeding pump before we were sent home that afternoon. Rachel was an absolute precious little angel in the hospital until the last hour. She decided she wanted to go home...and oh boy... we knew she was feeling a little better and was ready to get outta there. So it was a little hectic as we were leaving but I was glad we were going home.

 

We were sent home with a Kangaroo Joey feeding pump and all the supplies needed to plug her in. We're starting with night feeds, so she is slowly fed two cans of pediasure formula. It takes about 7 hours at 65 mls per hour. Oh the good news.... our insurance is covering 100% of the feeding pump, tube supplies, and formula costs!

 

The first few days home were pretty awful. She was in a lot of pain and cleaning around the button was so hard for both of us. She also had a decompression tube for the first 24 hours. So that tube and a drainage cup was taped to her tummy and she wasn't happy about it. We had a couple of times where the drainage cup would overflow. The most traumatic part for her was when she got up to walk for the first time about 48 hours after her surgery. She walked from the front of the house to the back bedrooms and then her tummy just started draining through the decompression tube and then overflowing the drainage cup. It was like she was throwing up, but it was coming out of her stomach alien style. It got all over her, all over the floor, and really freaked her out.  It freaked me out too, and I didn't know whether or not to hook her up to the feeding pump that night. I called the advice line and they paged our GI doctor. She called us back and said to just stop using the decompression tube, do the night feed, then close the button. She got the Bard Button Gastrostomy tube, so we just close the button when she is not being fed.

 

So after that first 48 hours, things settled down a little bit. I'm not thrilled that her feeding pump alarm goes off every night between 1-2am. I have to get up and flush the tube, give her her medications in the tube, flush it with water again and then disconnect her. She wakes up and screams and kicks me when I disconnect her. I know it hurt her the first several nights, but now I think she just kicks the crap out of me because she doesn't want to be woken up. It's a good thing... it means my baby is feeling better when she starts acting like a stinker.

 

She's handling the tube pretty well. She is more cautious about how she plays. I think that's a combination of still feeling sore and feeling unsure about this new thing attached to her tummy. She was finally able to take a bath tonight and she was so afraid of getting her "tubie" wet. I had to talk her into it and tell her it was okay.

 

The best part about the last week is that I'm no longer stressing over how many calories she's taking in. I'm not stressing over the fact that she didn't get her iron supplement since I put it directly into the tube now. It feels so good to know that she is getting good nutrients. And TMI warning... she is finally pooping normally. She previously had extreme constipation, pain, and her life sometimes revolved around "getting a poop out." She doesn't cry every time she poops anymore, and for her, that is a big deal.

 

It's been a tough week, but we've survived. I have had a lot of emotional ups and downs over this. I've hated the tube. I've loved it. I've wished we never got it. Then I'm glad we have it. Mommy guilt just never stops. I do feel bad that we made the decision to put her through this. I know it was the right choice though. She is finally getting much needed real nutrition and that is a blessing!



The long road to a real diagnosis

I was blown away last week. Rachel was diagnosed with Autism...or the correct way to say it now, I guess is an Autism Spectrum Disorder. She also has SPD and a language delay. I was a little bit surprised with the diagnosis of Autism, but at the same time, I was relieved.

This diagnosis doesn't change who Rachel is. She is still the same precious little girl that she was last week before the diagnosis. It's not that I'm happy she has Autism. I don't think any mother would be. I'm just happy and thankful that after all we have been through, she finally has a diagnosis that will get her services that she needs. I've suspected for years that she was on the spectrum. We had her evaluated two years ago and she wasn't diagnosed. However, in the last year or so, her symptoms have become much more relevant.

I'm so grateful for her therapists suggested that we get Rachel evaluated again. Even though Kaiser had sent the referral months ago, I wasn't going to get her re-evaluated. I just didn't want to go through one more rejection for services from them. I didn't want them to tell me that although they can see that Rachel is special, they can't help her. Now they have to approve ABA services for her. We are also going to get evaluated by a speech therapist and an OT to determine what other services she may qualify for. I've also learned that if Kaiser denies her for any of these services, Alta Regional may provide services for us again. (We received services through Alta Regional from 18 months to 3 years old).

I also have some great news. Morgan is no longer on the spectrum. In fact, I don't think she ever was. I've wondered for almost two years since her last diagnosis, and I've always wanted to get a clear answer. Now that she's older, she doesn't have symptoms of being on the spectrum. I am beyond thrilled and now feel so relieved to have a real answer.

So as you can see, last week was full of emotional ups and downs. It's going to be a few weeks before I learn, for sure, what services Rachel will get. I've already contacted our old service coordinator at Alta Regional and left her a message asking her what, if anything, do I need to do. We are now only a day away from her surgery for her G-tube. I'm not nervous about the procedure, but I am worried about Rachel's reaction to this. Her feeding therapist wrote an awesome social story about Rach going to the hospital and getting the g-tube and such. We've been reading it to her and she seems to be understanding part of what is going to happen. I still can't believe we had to make this decision for her. The last thing I ever wanted to do was get her a feeding tube. We just couldn't continue to let her lose weight and eat and drink next to nothing each day. I'm hoping that with better nutrition, she can make good progress with her therapy.

And speaking of the therapy.... We plan to continue with our current therapists whether Kaiser pays for them or not. We've finally found the best therapists for her in the area and we're not going to change that.

Now... to start packing for our hospital stay. I'm trying to set aside the emotions about her diagnosis and just focus on getting through this week. Then I will take time to let this all sink in.

Please pray for us on Tuesday! Thank you!

The post because Mom can't sleep

Tomorrow Rachel has her autism assessment at Kaiser. Here are my thoughts on how this will go down. We'll go. They will see she is clearly delayed in many areas, that something is clearly "off," but then they won't give her an ASD diagnosis. They will refer us to the committee in Oakland that approves therapies..... then of course.. we shall be denied.

So yeah, not feeling too hopeful that we will get any help.

She gets her G-tube on July 9th.

Morgan has her autism assessment on Wednesday. A couple of years ago, Morgan was diagnosed with PDD-NOS. We were told to have her re-evaluated in two years, so here we are. If she still gets that diagnosis, we will get services for her other than just the school district. Well, at least that is my understanding. Again... can't trust what I "think" I know.

My stomach is in knots. I feel like we have been in survival mode for way too long. My hope is that once we get Rachel settled with her g-tube and she's actually getting nutrition, things will settle down. I won't be so stressed over every calorie that she eats or doesn't eat. I think this would allow both of us to chill out a little and then we can make some progress with feeding therapy.

Her OT/feeding therapist hasn't been doing feeding therapy with her. We're getting her sensory system better regulated before we start feeding therapy again. I think I've already mentioned that though.

Hate that it's almost 1am and I'm awake and stressed. The appointment tomorrow is around 3-4 hours long and at least a 45-60 minute drive from our house. It's also supposed to be 108 degrees here and I'll be driving home in rush hour traffic either happy with the results or crying or maybe just pissed off. Who knows?!

Okay, I'm going to shut up for now. This mama bear is ready to fight tomorrow!

Possible autism and a feeding tube...

I had a progress meeting with Rachel's therapists last week. We've been doing therapy twice a week for about two months now. She is progressing well with the therapy. I was a little bit surprised because I was told she is likely on the autism spectrum. She was evaluted for autism once before almost two years ago, but not diagnosed. However, after talking about it and then reviewing the checklist, she could very well have an autism spectrum disorder. So they want me to get another evaulation done.

She has a referral now at Kaiser to get evaluated. Our first evaluation was done through the county program, so this will be the first time our medical insurance tests her. As usual with Kaiser, I'm not holding my breath that we'll get anywhere to get them to pay for any services. I'm kind of okay with that since we've been dealing with this for so long.

Another thing we discussed during the therapy meeting is getting Rachel on a feeding tube as soon as possible. Her GI doctor was going to wait a couple of months and see if Rach gained any weight back or started eating. Then she stopped accepting her iron supplement in apple juice.... which I was only able to get into her a few times anyway. Her health is quickly declining and has been over the past six months. I never wanted to consider a g-tube,  but she simply cannot keep going the way that she is. The GI doctor and the therapists both think getting her a g-tube now is needed. Usually kids start with an NG tube but since we are also dealing with sensory issues, a tube in her nose wouldn't fly! I'm supposed to hear from the scheduling nurse in the next couple of days and we should be getting the g-tube within 1-3 weeks. I'm thankful that she will be admitted to the hospital for a couple of days so that we can see how she takes it and see how she takes the feedings. I will, of course, be staying with her the whole time. I am really nervous about she's going to react to this, and I'm scared that I have to learn how to do all of her feedings and use the pumps and such. I know they won't discharge us until we know what we're doing though. It's just scary. I never thought she'd go this long without eating. I always thought she'd just start eating at least something. So yeah, a feeding tube isn't the ideal solution but I'm excited to be able to get some actual real nutrition into my little girl. I also can't help but be mad that Kaiser will pay for a g-tube that includes a hospital stay, but they say she doesn't need feeding therapy. It's ridiculous!

After we get settled in with the g-tube and such, we are going to start feeding therapy 4-5 times per week. Still not sure how the financial part of this will all work out, but we're going to make it happen. We're only going to do the daily therapy for about three weeks and then go back to twice per week depending on how things are going. If she gets an autism diagnosis, our insurance would be required to pay for more services. It would be nice but I'm not holding out hope for that. We've already been disappointed too many times.

Just had to get this all out tonight. Oh and I have to write down what Rachel said to me today. The girls and I were dancing around the living room while listening to the Little Mermaid soundtrack. Rach asked me for a milk bottle so I said.. "okay, just a minute." But then I was distracted when Sophia started dancing with me. So then Rachel said, " mommy, you go dance to the kitchen and get my milk." She totally cracked me up!

Returning to blog land

How did I let half of a year go by without at least posting something? I really do want to get back into it, so I am going to just write some random things to catch my blog up to speed.

Where did we leave off?

I had surgery at the end of January. It was rough and included being admitted to the hospital.... but the biopsy came back negative and it was not lymphoma. I did have some partial facial paralysis for a few months but I am happy to say that my smile and my left eye and eyebrow both look normal again. I was really starting to wonder there for a while though. I'm not too thrilled that my incision is still very visible on my neck but I suppose that will get better with more time. I'm just happy I am cancer free!

Rachel has been denied for feeding therapy from Kaiser Permanente three times now. The past 6 months have been the most stressful that we've had. She lost five pounds because her diet became even more limited. She cut out the Costco organic animal crackers and she quickly lost weight from it. We're now seeing a GI doctor and a dietician. Her pediatrician had suggested getting a feeding tube but the GI doctor is having us try an appetite stimulant and some more time instead. I'm so mad at Kaiser that I can't see straight. Every time we see a different doctor or therapist, we're told something different than the time before. I'm so sick of being told that SPD isn't a medical condition so they can't do anything for her. Her health is suffering.  Kaiser Permanente's motto is "thrive." What a load of crap! They will consider paying for a feeding tube but not feeding therapy since she isn't your typical case. It's becoming increasingly frustrating and I'm at my wit's end.

So we were forced to pay for therapy on our own. I have been wanting to take her to the Star Center in Colorado for over a year now. But then I found two therapists locally (well, an hour away) who have gone through the Star Center's mentorship program and they are awesome therapists. So we've been going to sensory based OT and feeding therapy for a couple of months now. Rachel has made some good progress. She even took a bite of a chewy sugar cookie and ate a peice a couple of weeks ago... without throwing up or gagging. So this is progress, and I feel like we have finally found the right therapy and therapists for her. I just couldn't justify paying to take her to the Star Center or being away from Morgan and Sophia for that long. It's not completely off of my radar just yet. I'm just hopeful that the therapists locally can help her. So far, I am so impressed with them. It's frustrating that we have to pay out of pocket for it, but it is what it is, and we're working it out.

School is out for summer. We had the girls' IEP meetings back in February when they turned 4. They will all stay in their current preschool/therapy programs until they start Kindergarten. I am very thankful that Sophia and Morgan's teacher is keeping them in her program. She didn't have to qualify them, but she did. Rachel will be in her current program as well. We are very blessed and all three girls have amazing teachers.

Wow.. how did it get to be midnight already? See... this is why I never blog. Anyway, just wanted to post a small update. I'm hoping to get back into posting more often. We have a busy summer planned and I'd like to document it.